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Rare Disease Day 2023: MaryO, Pituitary/Kidney Cancer Bio

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rare disease day

Adapted from Participatory Medicine

This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I’m writing it to submit to Robin’s Grand Rounds, hosted on her blog.

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first, I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said: “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986, I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987, I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four-hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterward to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterward, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years, NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Forbes Magazine | MaryO’s bio | Cushing’s and Cancer Blog | Interview Archive 1/3/08 | Cushing’s Awareness Day Testimonial Archive |

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2010, we have over 7 thousand members. Some “rare disease”!

The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups, multiply.com, and much, much more.

People are becoming more empowered and participating in their own diagnoses, testing and treatment. This have changed a lot since 1983!

When I had my Cushing’s over 20 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

What do *YOU* think? How are you becoming empowered? Comments welcome


• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O’Connor (MaryO) and Dr Ted Friedman will be panelists. The topic is “Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0”. Robin submitted this topic. She wrote: Paying it Forward in the Digital Age: Patient Empowerment 2.0 using Web 2.0

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

More info here.


MaryO’s Original Bio

Click on pictures to enlarge.

Christmas 1981Around 1983 I first started to realize I was really sick. At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Then I got really tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

Gaining weight in 1986My husband just told me to think “happy thoughts” and it would all go away. A Neurologist gave me Xanax. Since he couldn’t see my tumorwith his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

In late 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fall 1986I was also having trouble with my feet and walking, so I had the distinction of going to two doctors in one day, a Podiatrist in the morning and the Hematologist/Oncologist in the afternoon.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

March 1987 after a week of testingWhen he confirmed that I had Cushing’s he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon,Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

Tom and me in Barbados

Update: Fall, 1999:

I went for my regular testing with my private endocrinologist.

Besides the annual testing, he told me that my pituitary gland is shutting down, so I must always have extra cortisone (Cortef) for any medical stress such as surgery or the flu.

Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I’d feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I’d definitely take – or ask for – a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don’t remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions – I’m sure to see how I was doing on the consciousness level. I’d imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black…I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets “for the road” and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant – I was famished – but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

Edgewater Inn, BarbadosI will have to take this test annually until I do I do qualify for HgH. I got a small taste of what I would feel like on this drug – that weekend I felt much better than I can remember feeling in a very long time. Hopefully, at some point, I will “qualify” for this drug, even though it means a daily injection. I would really like to feel better sometime – less tired, less depressed, more human.

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could. This website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’m going to make some helpful differences in someone else’s life.

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, aCushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” programwhere they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

My husband, Tom (PICTURED ABOVE) posted this on the message boards:

“I just read your description of the 9 year ordeal. I am Mary’s husband and much of your story was familiar.Mary diagnosed her own illness. After a prolonged journey from doctor to doctor.

After her surgery and recovery, I found myself at a neurologist’s office for some trivial ailment and the place seemed familiar.

Then it dawned on me that I had been there before with Mary. This was one of the doctors who had failed to listen. Or perhaps simply had no knowledge base about Cushing’s.

In any event, I stopped the process I was there for and changed the subject to the previous visit 4 years ago. I told the doctor to look up his records on Mary O’Connor and study them. Told him that what he would see in his files was a case of Cushing’s, misdiagnosed as something that might respond to Valium.

I said he could learn something and perhaps help the next person who arrived with Cushing’s.

Out of fairness to the medics, the ailment is so rare that a doctor can go his entire career and never see a single case. And it is certainly possible that the doctor may fail to diagnose the few cases they may see.

Mary’s surgery was done at NIH. It came down to them or the Mayo Clinic. At the time we did not realize that NIH was free and we selected them over Mayo based on their success and treatment record. They were happy to learn they had beat Mayo without a price advantage. We were happy to hear it was free.

During the same time Mary was at NIH, another woman had the same operation. She came from Mary’s home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

I am an aggressive person who deals directly with problems. I enjoy conflict and I thrive in it.

This experience made clear how little we control. And how much depends on the grace of God.

This year we celebrated our 28th anniversary. Our son has grown into a fine young man and is succeeding admirably in college.
Life is the answer. We keep going on….undaunted and ever hopeful.

Tom O’Connor”

Update July 26, 2001

I saw the endo today. My pituitary function is continuing to drop, so August 6, I’ll Be having another ITT, as described above. Hopefully, after this one, I’ll be able to take Growth Hormone and start feeling better!

Update August 6, 2001

I had the ITT this morning. I don’t get any results until a week from Thursday, but I do know that I didn’t recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a “normal” person, although I can’t imagine what normal person would do this awful test! A normal person’s blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I’m sure that I did, eventually.

The test this time wasn’t as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don’t remember any of that this time around. I do know that I “lost” about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn’t coming up enough yet and I’d have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they “crashed me” and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm – where the heplock was – fell asleep. Other than that – and my back hurting from lying on one of those tables all that time this wasn’t as bad as I remembered.

So, I waited for 10 days…

Update Fall, 2002

The endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.

I know that I would like to lose weight, but I’d like to do it on my own terms, not over Thanksgiving, Christmas and New Years, not because this endo was rude about it. I left his office in tears. I’m now looking for a new one…

Update Fall, 2004

I left my previous endo in November of 2002. He was just too rude, telling me that I was setting myself up for a heart attack and that I wasn’t worth treating. I had left his office in tears.

Anyway, I tried for awhile to get my records. He wouldn’t send them, even at doctors’ or my requests. Finally, my husband went to his office and threatened him with a court order, The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001, that doesn’t seem like enough records to me.

I had emailed NIH and they said that they would be “happy” to treat me, but it was long between emails, and it looked like things were moving s-l-o-w-l-y. I had also contacted UVa, but they couldn’t do anything without those records.

Last April, many of us from the message boards went to the UVa Pituitary Days Convention. By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me one day last summer. In the email, she asked how I was doing. Usually, I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. And I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I’m going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

So, in a couple weeks, I might start feeling better! Wowee!

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Update October, 2004

I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records – that I’m both adrenal-deficient and growth hormone-deficient. I started on my “sprinkle” (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I’m on my way…

Yea!!!

It feels weird to be going back on the cortisone after being off for so many years but at this point, I think I’d sell my soul to the devil not to feel the way I’ve been feeling for the last several years.

Update November, 2004

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we’ll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that’s not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a guinea pig again? The new GH company has assigned a rep for me, has submitted info to pharmacy, waiting for insurance approval, again.

Update December 7, 2004

I finally started the Growth Hormone last night – it’s like a rebirth for me. I look forward to having my life back in a few months!

Update January 3, 2005

After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month’s supply. Of course, the pharmacy wouldn’t send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Update January 25, 2005

I’ve been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short-lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I’ve been taking since October. I can’t wait until my next endo appointment in March to increase my GH. I want to feel better already!

Update March 21, 2005

My endo appointment is over. My endo thinks that my weight gain is from the cortisone, as I’d suspected. He cut that amount in half to see if I would stop gaining weight and maybe lose a little. Because of the adrenal insufficiency, I can’t completely stop it, thought. My IGF-1 was “normal” so I can’t increase the GH.

I made a vacation of this trip, though. A friend and I stayed 2 nights in a hotel and had some fun. The hotel had an indoor pool, hot tub, sauna, exercise room, wireless internet access, free shuttles to Johns Hopkins and the Baltimore Inner Harbor. We had a good time for ourselves, so I came home from this endo trip more tired than ever. Over the weekend, I took 7-hour naps on both Saturday and Sunday. Hopefully, that will get better as my body adjusts to the loser dose of Cortef.

Update September, 2005.

My last endo appointment I had lost some weight but not enough. My energy levels are down again, so my endo increased the cortisone slightly. I hope I don’t start gaining again. I don’t see any benefit with the growth hormone.

Update January, 2006.

A new year, a new insurance battle. Once again, they don’t want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

Update April 14, 2006

I just went to see my endo again on Thursday to see how things are. Although I know how they are – I’m still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a “little” buffalo hump again.

My endo appointment is over. Turns out that the arginine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I’m off GH again for 2 weeks, then I’m supposed to be retested. The “good news” is that the arginine test is only 90 minutes now instead of 3 hours.

Update June 2, 2006: Kidney Cancer (Renal Cell Carcinoma)

Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

Update August 19, 2006

I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I’m having trouble sleeping (1:20 AM here, now) although I’m always tired.

Whine, whine!

On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!

Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…

Update October 26, 2006

I went to see my Johns Hopkins endo again last week. He doesn’t “think” that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6-month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low – for me, not for “normal” people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they’re lower again because I had the adrenal removed, because of my panhypopit, because of my cancer even though currently NED, it can come back at any time, because of my GH deficiency…

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something “easy”. I’m starting to get very depressed over all this. If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so “healthy” (thanks to the Cushing’s/daily Cortef!). They figure that if there was any real danger of the cancer metastasizing that I would be on chemo, like other cancer patients do. They don’t understand that I have to wait and pray because there are no approved adjuvant treatments. If/when my cancer returns, it’s just more surgery. If I’m “lucky” enough and get to a stage 4 THEN I can have chemo/radiation as a palliative measure.

Update December 2006

According to my PCP my blood pressure is truly low. But can I go off these bp meds? Nope…because I have only one kidney, these would have been prescribed anyway as a support for my kidney. Can’t win!

I am maintaining my weight loss but none of my clothes are loose, I can’t fit in anything smaller. Belly is still there. So the weight loss is just a numbers game.

Update March 2007

I posted this on the message boards in late February but many missed it and are still asking…

Walking Wounded, the sequel! Wow! I guess I haven’t been on the boards for 2 weeks or so. I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent.

My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o

I came home and taught my piano students, as usual.

Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn’t want to wait because the pain was excruciating by now and I couldn’t get out of chairs or sofa without using the walker I had from surgery to help pull me up.

So I called my husband at work and he said he’d come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn’t make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.

They asked about me at the front desk and were assured that I was there although they didn’t see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O’Connor was called… My people realized it wasn’t me and left.

Finally, Tom got home – he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!

The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.

Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before. Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing’s. No collapses this time.

They did CT scans (so I don’t have to do my surgeon’s ones – YEA!) and XRays and found basically nothing except lung nodules that hadn’t grown much since my last scan – say what? I didn’t know I HAD lung nodules.

I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn’t do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.

Tom took me to the sub PCP on that Friday and she’s sending me to physical therapy.

Until yesterday, I didn’t drive at all, and the weather has been awful, so I haven’t even called about the PT yet.

There is still a little pain, and I need the walker to get out of bed, but I’m doing much better.

A weird side thing – Tom was driving my car since it’s a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.

One day he got it home, slammed the door – and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn’t break. So that was a bit of a problem and $$. No one had ever even heard of this problem before.

Anyway, I hope to get to your PMs, emails and whatever ASAP!

It feels a bit weird being here – like my baby has grown up, left home and doesn’t need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

I have started a new Blog called Cushing’s, Cancer & Music and I plan to keep that updated a little more often than this bio. Rather than the actual events that have taken place, I am letting some of my pent-up feelings out. NOTE: This blog was destroyed by hackers in June 2008 🙁 I don’t know when or if I will ever have the energy to rebuild it. Find the newest blog here: Cushing’s and Cancer Blog

Alaskan Cruise, 2007On an Alaskan cruise, June 2007. More about the cruise.

As of the Chicago meeting in July, 2012 I have met 90 members of the message boards (listed as Friends) in addition to Cushies who are NOT on the boards! I have traveled to meet Cushies at NIH in Bethesda, MD, Ohio, Pennsylvania, Oklahoma, Michigan, Wisconsin, Illinois, New York, Florida, Tennessee, Connecticut, UVa in Southern Virginia and Oregon.

Update October 2018

Well, I haven’t been so great keeping this updated.  I have made other single posts after I went back on Growth Hormone in June, 2017 (Omnitrope this time).   I am posting some of how that’s going here.

No return of cancer (Hooray!)

I’ve developed a new allergy to blackberries

I’ve had a lot of problems with my knees.  This post needs to be updated since I had a cortisone shot in my knee on September 12, 2018 – best thing I ever did, even though my endo was not happy.

Update February 2020

Since then, in 2019, I had 2 more cortisone injections.  They’re only lasting about a week to 10 days now so I figure they’re not worth the potential side effects.  I’ll have one once a year before a big trip or cruise, so the next will be in August of 2020.

I’m still on growth hormone but I don’t see any improvement.  I’m still napping as many hours a day as I can.

The facial hair is still with me and I haven’t lost all the weight, despite 3 days a week of water aerobics (mostly for my knee).

Update February 2021

Not much of an update from last year.  I’m not sure if that is a good thing or not.  Thanks to COVID, we didn’t get to do any “big trip or cruise”.  Our August cruise from last year was rescheduled for August 2021 but it’s already looking like that won’t happen.  It was to go to Alaska and Canada has blocked cruises from sailing through their waters so…

Our son and his wife are due to have their first child in the next week or so but I can’t even go to NYC without quarantining – even though I will be completely vaccinated on March 15.  I’ve had my first Moderna shot, so far.  I wrote about my experiences here and will share how the second one goes when the time comes.

I’m still on Growth Hormone and my endo is saying it will be forever, as will my daily Cortef.  I haven’t had any more cortisone shots because I haven’t been anywhere to warrant them.

Naps and facial hair continue as last year’s update.

This year I have developed a basal cell carcinoma on my nose.  It was removed with liquid nitrogen and it started growing back almost immediately.  At the liquid nitrogen appointment I was told that the next step would most likely be MOHS surgery for a recurrence so I’m gearing up for that fun in March.

Update February 2023

I guess I missed last year.  I had the MOHS surgery and I wrote about it quite extensively here: https://maryomedical.com/2021/05/09/the-mohs-nose/

My current health complain is waiting for a knee replacement.  I got so close and then…setback.  I’m now scheduled for the surgery March 9 but I found out that I need another medical clearance because it’s been more than 30 days.  That will be on March 2.

See you next year!

 

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

And so I wait…


Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of FORBES Magazine, BEST OF THE WEB Issue. The title: “Use With Care” by Matthew Schifrin and Howard Wolinsky.

Hopefully, this kind of mainstream exposure will help increase awareness for this often misunderstood disease. Read the article here.

Amber D, Pituitary Bio

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Adapted from https://www.stuff.co.nz/business/money/130677664/woman-loses-home-after-insurer-turns-down-brain-tumour-claim

 

 

When Amber Denney​ bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.

But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.

Denney was diagnosed with a pituitary tumour in 2020​, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.

But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000​ claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.

As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.

At a time Denney, now aged 26​ and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.

BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.

Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.

But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.

Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.

“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.

“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.

There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.

While the BNZ Life policy did cover pituitary tumours, there were two caveats.

First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.

Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.

Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.

In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.

“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.

Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.

But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.

It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.

One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020​, operated on in September 2020​ during the level 4 lockdown, proof of permanency had still not been established.

Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.

“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.

“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.

Denney says one horrified BNZ worker told her not to let the bank win.

“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.

BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.

BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.

Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.

It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.

Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.

It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.

Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.

Denney said her surgery saved her life, and her weight has dropped by 35kg​.

Doctors told her in 2020 that without the surgery she would have two years to live.

“I’ve passed that two years now, so every day’s given to me now,” she says.

At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.

She has landed a job at a supportive employer in Hamilton.

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Michelle M, Pituitary Bio

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I was diagnosed with Cushings on 2020.

An MRI showed a hormone secretion on my pituitary gland. It was removed in June of 2020.

Things went well and I resumed life as normal.

Well a followup last month with blood work showed a possibility of reoccurence.  I will be getting an MRI next week to confirm.

I don’t have “typical” symptoms but mine presents more like PCOS. My endocrinologist previously was convinced that’s what I had. Then an act of God changed her mind to order an MRI. Had she not I was perscr9bed metformin and told to follow up in six months.

I’ve never talked with anyone with Cushing and was excited when I found this site. Look forward to getting and giving support with fellow Cushings survivors.

 

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In Memory of Cassandra Dills-Dailey ~ August 29, 2017

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Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.

In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.

Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.

But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.

Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.

“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”

Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.

“You don’t understand. She’s dying,” Wayne Dailey recalls saying.

Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.

“They came to the house and they got her in that boat,” Zavertnik said.

The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.

“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”

The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.

Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.

She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.

“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”

Adapted from http://m.chron.com/about/article/Mother-of-2-dies-in-Harvey-during-medical-12175042.php#photo-14053540

Lisa S, Pituitary Bio

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I was mid-diagnosed for about 5 years. Doctors that I had gone to for decades would prescribe me diet pills, told “brisk walking” (even though I walked about 12,000 steps every day at work), I was told to “put down the fork “… finally I was to meet a new doctor- the very first time I met her- she figured it out!

Then came blood tests and mri.

My neurosurgeon appointment was set for Nov. then I got a call that it would be October…. It was the end of September. Yay!! I was so happy someone figured it out!

First surgery didn’t get it all so it was done again. Veins were failing but I finally got to go home. 5 days later I was readmitted for my sodium levels being too low…. I told them my nose kept running- surgery #3- cerebral membrane leak- iv in my foot and a port installed…. and the spinal tap.

Again I got to go home. Was out of work for 11 mos. I was sooo tired. Went from 264 at original surgery to 109. That was in 15.

In the last 9 months I’ve been in the icu twice for adrenal crisis…. Nothing is getting better.

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In Memory of Kate Myers ~ June 23, 2014

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kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

In Memory of Sarah Fraik ~ June 13, 2011

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in-memory

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

More information will be provided when it becomes available.

~~~~~~~

Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”

Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”

Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”

Conversion from US to CAN: http://www.advfn.com/currency-converter/us-to-canadian-dollar.html

~~~

From the Acromegaly Community:

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

In Memory of Sherry Carlson ~ May 30, 2020

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Sherry passed away the afternoon of May 20, 2020, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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Sharmyn, In the Media

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From 2022:

Sharmyn McGraw knows as much about pituitary disease as some doctors.

She learned about it after struggling for years with a medical mystery that began in 1993. First, she began to feel anxious. Then, she began to gain weight, and she developed a rash. Much of her hair fell out. Her eyes began to yellow and her face puffed up. Different doctors gave her different explanations. They told her she was allergic to caffeine. That she was just retaining water. That she was beginning menopause.

In the end, none of those things turned out to be true. She finally figured out that she had Cushing’s Disease, which is caused by excess production of the hormone cortisol, which, in her case, was caused by a tumor on her pituitary gland.

Listen to this episode to find out how Sharmyn got to the bottom of her medical mystery with the help of Dr. Dan Kelly, and how she uses years of knowledge to help others suffering from pituitary diseases through the support group she founded at the Pacific Neuroscience Institute.

 


From 2019:

Sharmyn, can you briefly walk us through your story – how you started and how you got to where you are today.
My story is about the best kept secret in medicine…

I went from a petite dress size 2 to an obese size 22 in just one year. I went from athletically fit to barely able to walk upstairs. One of my closest girlfriends was a former Miss Universe and actor in Hollywood; we looked like sisters. We often hung out socially with those in the entertainment biz where anorexia is a compliment—not a disease.

But in 1993, at the age of thirty-one, I started to gain weight and lots of it. I ate a very healthy diet; I worked out five to seven days a week and trained with a fitness trainer just as I had always done, but the weight piled on. While my friends were busy planning their weddings and starting their families, I began my journey of the next seven years, seeking help from doctors all over California for a correct diagnosis and treatment. My beautiful thick, long blonde hair fell out by the handfuls. I got up to nearly 250 pounds, but the odd weight gain was mostly in my round moon face, and my stomach stuck out over fifty-four inches. Soon, many other symptoms started: I had constant anxiety, and I felt like I wanted to come out of my skin from the constant nervous energy racing through my body.

Nighttime was the worst; while I should have been sleeping, I paced my apartment to help slow down my racing heart. I felt nauseous from anxiety 24/7. I slept fifteen to twenty minutes at a time, but once I’d fall asleep, I would jolt awake with a shot of more nervousness pumping throughout my body. Sometimes I’d go days with only a few hours’ sleep.

Soon my blood pressure had to be controlled by medication; I also needed medication for anxiety and depression just to function. As a single woman, I needed to be able to keep my job; I needed to keep my medical insurance so I could keep seeking help from doctors. Although there were so many times when I wanted to give up, I had to keep going.

All the medical professionals said there was nothing medically wrong with me; just eat well and exercise more was their sage medical advice. I knew they were missing something as none of this was in my nature. A person doesn’t go from being thin, happy, and full of life to gaining over 100 pounds and enduring chronic anxiety and depression for no reason.

I continued for seven long years seeking help from general doctors to endocrinologists to gastroenterology specialists, rheumatologists, hematology experts, and even psychologists. All were highly respected and highly educated; unfortunately, none were willing to think outside their narrow perspective; none of these medical professionals wanted to listen to me, who in their words “let herself go.”

They would not believe me when I told them I was truly eating well and exercising properly but instead, offered more and more prescription drugs. When I said I didn’t want to take the drugs, and I wanted to find out what was causing me to be so sick, they wrote me off as unwilling to help myself. I was madly frustrated and felt betrayed by the medical community as well as society.

Many friends and even some family members felt I was causing myself to be sick. I’m not a shy personality, and I had no problem speaking up. Loudly, I begged for proper diagnosis; I begged for proper treatment. I told everyone, loud and clear, there was something medically killing me, and I wanted my life back, but they continued to blame me for my laundry list of poor health issues.

Eventually, I was so sick, I accepted that this undiagnosed illness was going to kill me eventually, but I was determined NOT to die before I found out what disease had turned my health upside down! I wanted to make sure other people did not have to suffer from this horribly embarrassing, lonely, debilitating disease. So, I started my journey to save myself, and whoever else was suffering like me.

Unlike today, back then, I couldn’t simply Google my symptoms, so I had to research by going through all my medical records. I remained persistent until I got copies of everything I needed. Through the years many doctors suggested I had hormonal issues, but they attributed any hormonal abnormalities to the fact I was obese and suggested if I lost weight, all my health problems would be gone. They were like an annoying, broken record.

But I didn’t go to medical school, so I had to rely on my intuition and the fact that I knew my body better than anyone else. I had a hunch the hormone issues were causing ALL my health issues.  Fortunately, while going over thousands of pages of lab results and doctor’s notes, among innumerable discrepancies of the medical opinions and endless mismanagement of my healthcare, I also found a few clues of where to start.

I borrowed a friend’s computer and typed in Cortisol. According to my health records, this hormone had only been tested once in seven years, and it registered as Very High—Above Normal level. The doctors said it was high because I was overweight, but I wanted to see for myself. And up on the computer screen popped an article published by the Pituitary Network Association,www.pituitary.org.

The article’s headline read: “Cushing’s Disease.” In one of my previous medical reports, a doctor wrote he ruled out Cushing’s syndrome. This article proved him uneducated about proper testing for Cushing’s, and he was very wrong.

Cushing’s disease is a secondary disease caused by a pituitary brain tumor. The pituitary is a small, bean-shaped gland, less than one centimeter in size, and referred to as the master gland. It sits at the base of our brain between our optic nerves and carotid arteries. This small but powerful gland controls our quality of life by producing major hormones.

A Cushing’s tumor produces high levels of adrenocorticotropic hormone, (ACTH), which in turn signals the pituitary gland to stop producing the normal production of ACTH. One of the key functions of the pituitary gland is to keep us alive by signaling the adrenal glands when to produce and when not to produce Cortisol, our one life-sustaining hormone. However, the ACTH producing tumor never shuts off the production of ACTH, causing the pituitary to stop its normal feedback system with the adrenal glands.

Therefore, the adrenal glands never stop overproducing our fight or flight hormone, cortisol. For years the medical community and others told me that my health issues were all in my head. Well, in fairness, they were right. Luckily for me, I knew I was not causing this madness. Although it still sounds strange to say, I was so happy to find out that I had a serious and life-threatening pituitary tumor because, for the first time, I knew where to start my fight.

Once I suspected I had Cushing’s disease, I had to find the experts to confirm the often-complicated diagnosis. And that’s when the universe guided me through more research to meet the team that helped save my life! Dr. Pejman Cohan, my neuro-endocrinologist, and Dr. Daniel Kelly, my neurosurgeon, the director of the Pacific Neuroscience Institute in Santa Monica, CA. My angels were in my own backyard!

Dr. Cohan soon confirmed my diagnosis of Cushing’s disease, and it was Dr. Kelly’s difficult task to remove the tiny tumor that wreaked so much havoc. On April 14, 2000, Dr. Kelly successfully removed the tumor, and the next chapter of my journey began: helping others who suffer from this horribly underdiagnosed, misunderstood, life-threatening disease.

For the past nineteen years, I have been honored as a pituitary patient advocate spokesperson both nationally and internationally. Pituitary Tumors are the Best Kept Secret in Medicine. I’ve remained dedicated along with a team of pituitary neuro-endocrine experts to raise public awareness and help educate, and in some cases, reeducate the medical community on recognizing the symptoms of a pituitary tumor and/or hormonal issues related to the neuroendocrine system.

Pituitary disease is uncommon but not rare; however, there are commonly four types of pituitary tumors: prolactin-producing tumors, acromegaly, caused by too much growth hormone, Cushing’s disease, too much ACTH causes a secondary disease of too much cortisol hormone, and non-functioning tumors, which have their own set of problems.

For more information, visit www.hormones411.org, and https://www.pacificneuroscienceinstitute.org/pituitary-disorders/

Or email Sharmyn at pituitarybuddy@hotmail.com or sharmyn@hormone411.org

Join us for support and education Pituitary Patient Support Group Meetings: https://www.pacificneuroscienceinstitute.org/resources/patient-resources/patient-support-groups/.

We’re always bombarded by how great it is to pursue your passion, etc. – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
I can say in all honesty the darkest part of my life, struggling for a correct diagnosis, has turned into the brightest part of my life. The pituitary tumor experts I work closely with: Dr. Daniel Kelly, Dr. Garni Barkhoudarian, Dr. Pejman Cohan, and a handful of others are truly amazing.

These teams of experts respect and value my patient advocate perspective, and they have restored my faith in our medical community. I’m honored to have traveled this difficult journey with these brilliant, caring, and compassionate doctors along with many others who are dedicated patient advocates.

But truly, what makes this journey rewarding and worth the endless hours we’ve all put into the proper treatment and awareness of pituitary disease is the patients. Seeing how far we have come to help raise public awareness and education in our medical communities makes me extremely proud I could be an important part of it.

Speaking with the patients, seeing them get their lives back, helping them to make good, educated decisions about their treatment is really what keeps us all going. And the icing on my cake has been meeting two of my closest friends, Krystina, who had a prolactin tumor, and Shady, who had acromegaly—both had pituitary surgery with Dr. Kelly, and they are leading healthy and productive lives. I love them like my sisters.

So, as you know, we’re impressed with Hormones411 – tell our readers more, for example, what you’re most proud of as a company and what sets you apart from others.
When I was growing up, I struggled all through school; learning wasn’t easy for me. One of my high school teachers had me stand up in the middle of her class in front of my peers while she berated and humiliated me over my poor grammar and spelling. I walked out of her class and never went back.

After that, I was petrified to write so much as a greeting card that someone would read. After barely graduating from high school, I was unable to pass the entrance exam for English 101 at our local college. I tested at a fourth-grade level. Earlier that year, I was diagnosed as severely dyslexic.

My high school in Southern California was overcrowded with 2100 students in my graduating class. My home life was chaotic, and there was no one there to help me either. I felt that my dream of becoming a writer was impossible. This was long before computers, so I stuffed my dreams of writing lighthearted mysteries way down inside.

But instead, I excelled at drawing, painting, graphic design, cartooning and photography; anything I could draw, design, capture or paint, I did extremely well. And I still love anything to do with creating art. After my surgery for the pituitary tumor, my passion to help others was bigger than my fear of writing. I knew I would have to write articles and correspond with medical professionals if I wanted to get their help and/or attention.

I created my first flyer, “They Were Right; It Was All in My Head—Pituitary Tumors. The Best Kept Secret in Medicine.” I was scared to death to let anyone see it, but I created a good design layout because of my graphic arts studies, and I finally worked up enough nerve to ask Dr. Kelly to look it over and edit it for mistakes. Dr. Kelly loved it, so after he made a few minor corrections, I was off and running!

The flyer traveled without the help of emails or social media, but rather it was distributed all over the country by people who read it and passed the flyer to someone they thought might have the same disease. This one little flyer helped save so many lives, and it started my patient advocate ball rolling. I took a couple of writing classes because I wanted to learn to be a better writer; one of the classes was to learn how to write for magazines.

I sent out thirteen query letters and got twelve rejections. But when the health editor from Woman’s Day magazine called me and asked if they could buy my story, I said, “I’m a writer; may I write it? And she said, yes! From there I continued writing and publishing my story and raising awareness about Pituitary disease. I’m not sure what was more rewarding, overcoming the challenges that had held me back with dyslexia or raising awareness about Cushing’s to over ten million readers; they both felt amazing.

Nineteen years after my pituitary surgery, it’s finally time for me to write my fun mysteries! I’m working on a three-book mystery series. I’ve finished the first draft, and I’m working on my revisiona. I hope to have, Dying to Date: Looking for Mr. Right but Finding Mr. Wrong, out in 2019; book two: Dying to Marry and book three: Dying to Divorce out after that. My Dying series website and Facebook page are coming soon. Praise to Lillian Nader, my amazing editor for her patience.

My goal is to get involved with speaking for schools to encourage kids not to let people discourage them from their dreams. It will always take hard work, but with dedication and a lot of effort, you can do what you love.

So, what’s next? Any big plans?
I have seen a lot of wonderful progress in  the work Dr. Kelly and his colleagues are doing at the Pacific Neuroscience Institute to advance treatments and improve the quality of life for their patients with cancerous brain tumors, pituitary tumors and so many other areas of the neurosciences. They are truly a comprehensive Center of Excellence.

I plan to continue helping them and their patients, and I am also excited to write my mystery stories. I will continue to use my public platform to help raise awareness for pituitary disease. I hope to have the opportunity one day to inspiring children the importance of reading great books and telling their stories.

Contact Info:

From http://voyagela.com/interview/meet-sharmyn-mcgraw-hormones411-santa-monica/?platform=hootsuite


Women’s Day, March 9, 2004 issue

Woman's Day, March 9, 2004 issue

What’s Wrong with Me?

I’d never heard of Cushing’s disease, until it was revealed as the culprit behind my mysterious illness

By Sharmyn McGraw
Photographed by Brett Panelli

For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up.

One year and 100 extra pounds later, my appearance was drastically changed. With most of the weight centered around my stomach, I looked as if I were pregnant with twins. My face and chin were round and the back of my neck had a buffalo hump. On top of it all, my thick blond hair began falling out in handfuls.

The anxiety and depression were nearly unbearable. I was a 31-year-old woman with a 227-pound body living in Newport Beach, California, a town south of Los Angeles where there’s no such thing as being too thin. Obesity just does not exist, especially among my peers. As an interior designer, I was often invited to social events, but I was so embarrassed by my appearance that I started avoiding them.

What was going on inside my body was just as troubling. I felt as if I’d had a triple espresso on an empty stomach. I was flying at top speed with constant jitters and chronic indigestion, rarely sleeping more than two hours a night. Mentally and physically, I was exhausted.

Searching for an Answer

While my girlfriends were busy planning their weddings and starting their families, I went from doctor to doctor hoping that someone would figure out what was wrong with me. In seven years, I sought help from more than 15 highly recommended physicians, as well as nutritionists, psychotherapists, an acupuncturist and a naturopath. Pleading my case as if I was on trial for a crime I did not commit, my closing argument was always the same: “I eat a healthy diet and exercise fanatically. This rapid weight gain, anxiety and depression is completely out of my nature.”

Nearly ever doctor I saw, convinced that I was a compulsive overeater with a mood disorder, simply offered advice on dieting and exercise. “Maybe you just think you work out as often as Jane Fonda,” was one physician’s comment.

One doctor labeled me a hypochondriac, and another said I had too much yeast in my system. Over the course of seven years, I also heard that I had fibromyalgia, a spastic colon, acid reflux and a sleep disorder, was prediabetic and premenopausal. I endured painful and expensive medical tests, including two endoscopies, a colonoscopy, a bone marrow biopsy and multiple CAT scans and ultrasounds. I had my thyroid removed and ankle and knee surgery (due to the excess weight on my joints).

During this time, with my family living far away in Illinois, I relied on my friends for support. Many of them were helpful, but some just continued to drop subtle hints about the latest diets they had read about. As for having a relationship—anxiety, chronic muscle pain and uncontrollable diarrhea were just a few of the reasons I stopped dating completely.

As days turned into years, I knew my symptoms were getting worse. My mind was no longer sharp and quick, and I stuttered to complete even simple sentences. I was not sure how much more I could endure, but I was determined that my obituary would not read, “Obese woman dies of unknown causes.”

I gathered all of my medical records and went to work studying every line. I found there was just one thing almost every doctor agreed on: My cortisol level was too high. In fact, it was three times the normal level for this hormone, yet none of the doctors felt that it had anything to do with my laundry list of complaints. By this point, I was fairly certain that it did.

Borrowing a friend’s computer, I went on the Internet and typed in the word “cortisol.” Up popped an article on Cushing’s syndrome, a hormonal disorder caused by excessively high blood levels of cortisol, and there on the screen were every one of my symptoms. I couldn’t believe it! Had I possibly diagnosed myself seven long years after my symptoms began?

Suddenly I remembered that I had seen the word “Cushing’s” in a report from a clinic I’d been to four years earlier. Ironically, the doctors had ruled it out because my eyes weren’t yellow and I didn’t have mouth sores. Now my next step was to convince a doctor that I had this disease.

Finally, a Diagnosis!

I’ll never forget the day I was ushered into the office of endocrinologist Andre Van Herle, M.D., at UCLA Medical Center. I was prepared to once again plead my case. But without knowing anything about me, he simply shook my hand and said, “So you are here because you have Cushing’s.”

This was a doctor with more than 40 years of experience in diagnosing people with the syndrome, and he knew at first glance that I had the physical appearance of someone with the disorder. It was one of the happiest days of my life. I was overwhelmed with emotion, and tears streamed down my face. Most importantly, I realized I was not crazy and someone was willing to help me.

Dr. Van Herle and his colleague, Pejman Cohan, M.D., soon confirmed through blood tests that I did have Cushing’s syndrome. In my case, as in about 70 percent of cases, the problem was a tumor in my pituitary gland that was causing the overproduction of the hormone adrenocorticotropin (ACTH). This hormone stimulates the body’s adrenal glands to produce cortisol, the life-sustaining “fight or flight” hormone, which has many important functions. High amounts of cortisol, however, can wreak havoc, causing rapid weight gain, upper-body obesity, a rounded face, increased fat around the neck, anxiety and depression. Over time, abnormally high levels can even be life-threatening.

The next step was surgery to remove the tumor in my pituitary, located at the base of the brain, but there was one more obstacle. Although my hormone levels indicated I had a tumor, it was apparently so small that it wasn’t picked up on an MRI. So there was a chance that my surgeon, Daniel Kelly, M.D., director of UCLA’s Pituitary Tumor and Neuroendocrine Program, wouldn’t be able to locate it. Thankfully, he didn’t encounter that problem. On April 14, 2000, Dr. Kelly was successful in removing the tiny tumor though an incision in the back of my nasal cavity.

Today, four years later, I am 100 percent cured, and my body and mind are finally free from the horrible effects of Cushing’s. I’ve been able to lose 40 of the 100 pounds that I gained and am confident I can lose the rest. As a volunteer, I help facilitate a UCLA pituitary tumor support group, and I recently spoke to medical students at UCLA School of Medicine, explaining my difficulties obtaining a correct diagnosis. Looking back over nearly 10 years, it’s painful to think about all that I’ve been through. But I am so proud of myself for never giving up. I hope my story will help encourage and empower other women to do the same.

Sharmyn McGraw is a member of the Cushing’s Help and Support Message Boards.


Pituitary Cushing’s: Sharmyn (sharm on the boards) was featured on the Montel Show.

In 1993 at the age of 31, Sharmyn went from a socially acceptable dress size two and full of life to an obese size 22 and barely able to function in just one year. Despite the years of dedication to maintain a shapely muscular body, she suddenly had no control over the rapid weight gain. Her hours of personal fitness training and a healthy diet did nothing to stop the pounds from piling on. Sharmyn gained as much as eleven pounds in four days, 85 pounds in six months and 100 pounds in a year. Soon the weight gain was the least of her health problems; her hair fell out by the handfuls, her stomach stuck out like she was pregnant with twins, emotionally she felt like a misfit, and much more.

For seven horrific years Sharmyn searched the medical community for help, but over and over doctors told her there was nothing medically wrong with her…nothing some good old dieting and exercise couldn’t fix.

In spite of the many years of challenges within our healthcare system, Sharmyn ultimately diagnosed herself via the Internet and was fortunate to find a team of experts at UCLA Medical Center who confirmed her diagnosis. On April 14, 2000. Dr. Daniel Kelly, a world-renowned pituitary neurosurgeon—her angel – successfully removed the tumor and literally gave Sharmyn her life back.

Discuss this TV show.


Pituitary Cushing’s – interview with Sharmyn (sharm on the boards)


Cushing’s disease-Pituitary Gland

Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor.

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Pituitary Cushing’s In the News!

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She experienced extreme weight gain, thin skin and a racing heart. It took years to finally solve the medical mystery.

Angela Yawn went to a dozen doctors before finally getting a diagnosis for her life-disrupting symptoms. Angela Yawn went to a dozen doctors before finally getting a diagnosis for her life-disrupting symptoms.Courtesy Angela Yawn

 

 / Source: TODAY

When a swarm of seemingly unrelated symptoms disrupted Angela Yawn’s life, she thought she was going crazy.

She gained weight — 115 pounds over six years — even as she tried to eat less. Her skin tore easily and bruises would stay on her body for months. Her face would suddenly turn blood red and hot to the touch as if she had a severe sunburn. She suffered from joint swelling and headaches. She felt tired, anxious and depressed. Her hair was falling out.

Then, there was the racing heart.

“I would put my hand on my chest because it made me feel like that’s what I needed to do to hold my heart in,” Yawn, 49, who lives in Griffin, Georgia, told TODAY.

“I noticed it during the day, but at night when I was trying to lie down and sleep, it was worse because I could do nothing but hear it beat, feel it thump.”

Yawn, seen here before the symptoms began, had no problems with weight before. Yawn, seen here before the symptoms began, had no problems with weight before.Courtesy Angela Yawn

Yawn was especially frustrated by the weight gain. Even when she ate just 600 calories a day — consuming mostly lettuce leaves — she was still gaining about 2 pounds a day, she recalled. A doctor told her to exercise more.

Yawn gained 115 pounds over six years. "When the weight really started to pile on, I stayed away from cameras as I felt horrible about myself and looking back at this picture is still very embarrassing for me but I wanted (people) to see what this disease has the potential to do if not diagnosed," she said. Yawn gained 115 pounds over six years. “When the weight really started to pile on, I stayed away from cameras as I felt horrible about myself and looking back at this picture is still very embarrassing for me but I wanted (people) to see what this disease has the potential to do if not diagnosed,” she said.Courtesy Angela Yawn

In all, Yawn went to a dozen doctors and was treated for high blood pressure and congestive heart failure, but nothing helped. As a last resort, she sought out an endocrinologist in February of 2021 and broke down in her office.

“That was the last hope I had of just not lying down and dying because at that point, that’s what I wanted to do,” Yawn said.

“I thought the problem was me. I thought that I’m making up these issues, that maybe I’m bipolar. I was going crazy.”

What is Cushing disease?

When the endocrinologist suddenly started listing all of her symptoms without being prompted, Yawn stopped crying.

Blood tests and an MRI finally confirmed the doctor’s suspicion: Yawn had a tumor in her pituitary gland — a pea-size organ at the base of the brain — that was causing the gland to release too much adrenocorticotropic hormone. That, in turn, flooded her body with cortisol, a steroid hormone that’s normally released in response to stress or danger. The resulting condition is called Cushing disease.

Imagine the adrenaline rush you’d get while jumping out of an airplane and skydiving — that’s what Yawn felt all the time, with harmful side-effects.

Yawn was making six times the cortisol she needed, said Dr. Nelson Oyesiku, chair of neurosurgery at UNC Health in Chapel Hill, North Carolina, who removed her tumor last fall.

“That’s a trailer load of cortisol. Day in, day out, morning, noon and night, whether you need it or not, your body just keeps making this excess cortisol. It can wreak havoc in the body physiology and metabolism,” Oyesiku told TODAY.

The steroid regulates blood pressure and heart rate, which is why Yawn’s skin was flushed and her heart was racing, he noted. It can regulate how fat is burned and deposited in the body, which is why Yawn was gaining weight. Other effects of the steroid’s overproduction include fatigue, thin skin with easy bruising, mental changes and high blood sugar.

Cushing disease is rare, affecting about five people per million each year, so most doctors will spend their careers without ever coming across a case, Oyesiku said. That’s why patients often go years without being diagnosed: When they complain of blood sugar problems or a racing heart, they’ll be treated for much more common issues like diabetes or high blood pressure.

Pituitary gland is hard to reach

Removing Yawn’s tumor in September of 2021 would require careful maneuvering.

If you think of the head as a ball, the pituitary gland sits right at the center, between the ears, between the eyes and about 4 inches behind the nose, Oyesiku said. It’s called the “master gland” because it regulates other glands in the body that make hormones, he noted.

Pituitary gland - female brain anatomy lateral view The location of the pituitary gland makes it heard to reach.janulla / Getty Images

It’s a very difficult spot to reach. To get to it, Oyesiku made an incision deep inside Yawn’s nose in a small cavity called the sphenoid sinus. Using a long, thin tube that carried a light and a camera, he reached the tiny tumor — about the size of a rice grain — and removed it using special instruments. The surgery took four hours.

The potential risk is high: The area is surrounded by vessels that carry blood to the brain, and it’s right underneath optic nerves necessary for a person to see. If things go wrong, patients can become blind, brain dead, or die.

Recovery from surgery

Today, Yawn is slowly returning to normal. She has lost 41 pounds and continues to lose weight. Her hair is no longer falling out.

But patients sometimes require months or even a few years to adjust to normal cortisol levels.

“It takes some time to unwind the effects of chronic exposure to steroids, so your body has to adapt to the new world order as the effects of the steroids recede,” Oyesiku said.

"My life was on hold for five years... I'm trying not to be too impatient," Yawn said. “My life was on hold for five years… I’m trying not to be too impatient,” Yawn said.Courtesy Angela Yawn

Yawn’s body was so used to that higher cortisol level that she’s had to rely on steroid supplements to feel normal after the surgery. It’s like an addict going through withdrawal, she noted.

The next step is finishing another cycle of supplements and then slowly tapering off them so that her body figures out how to function without the steroid overload.

“I am definitely moving in the right direction,” she said. “I hope that I’ll get back to that woman I used to be — in mind, body and spirit.”

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