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MaryO, Pituitary Bio

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Adapted from Participatory Medicine

The Society for Participatory Medicine - MemberThis 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 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.

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 | Guest Speakers | 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 ginuea 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 argenine 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 argenine test is only 90 minutes now instead of 3 hours.

Update June 2, 2006

Wow, what a nightmare my argenine 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 anaesthetic 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 argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine 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 will not be happy.

 

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.

MaryOVOICE Chat
Listen live to an archived interview from Thursday, January 3, 2008 with MaryO. Achived audio is available through the Podcast page of this siteBlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts

Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. This chat included a lot of comments about MaryO. Archives are available.

Listen to CushingsHelp on internet talk radio

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In Memory: Dr. Edward Hudson Oldfield, September 1, 2017

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Dr. Oldfield was MaryO’s surgeon at the NIH November 3, 1987.  This was back in the olden days of transsphenoidal surgery.  I honestly expected to die but this man saved my life.

Dr. Edward Hudson Oldfield quietly passed away at home in Charlottesville, Virginia, surrounded by his family on September 1, 2017.

Born on November 22, 1947, in Mt. Sterling Kentucky, he was the son of Ellis Hudson Oldfield and Amanda Carolyn Oldfield. Ed is survived by his wife of 43 years, Susan Wachs Oldfield; a daughter, Caroline Talbott Oldfield; three siblings, Richard Oldfield of Mt. Sterling, Ky., Brenda Oldfield of Lexington, Ky., and Joseph Oldfield (Brenda) of Morehead, Ky.; nieces, Adrienne Petrocelli (Phil) of Cincinnati, Ohio and Keri Utterback (Brad) and nephew, Gabe Oldfield, both of Mt Sterling. His parents and a sister, Bonnie Lee Cherry, predeceased him.

Dr. Oldfield attended the University of Kentucky and graduated from the UK Medical School. He completed two years of surgical residency at Vanderbilt University and spent a year in Neurology at the National Hospital for Nervous Disease in London, England, before completing his neurosurgical residency at Vanderbilt University. After a year in private practice in Lexington, he completed a two-year fellowship at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health in Bethesda, Md.

In 1984, he was named Chief of the Clinical Neurosurgery Section at NINDS and from 1986-2007, he was the Chief of the Surgical Neurology Branch at NIH. He joined the Department of Neurosurgery at the University of Virginia in 2007 where he held the Crutchfield Chair in Neurosurgery and was a Professor of Neurosurgery and Internal Medicine.

He led multidisciplinary efforts in the treatment of pituitary tumors and contributed to the research program in Neurosurgery at UVA. He often said it did not feel he was going to work because he so enjoyed every aspect of his career.

Dr. Oldfield was the author of over 500 original scientific and clinical contributions to medical literature and the co-inventor of patents on convection-enhanced drug delivery and genetic therapy. He served on the editorial boards of Neurosurgery and the Journal of Neurosurgery, where he completed a term of eight years as associate editor. Dr. Oldfield served as vice president and president of the Society of Neurological Surgeons (SNS). He received numerous awards including: the Public Health Superior Service Award; the Grass Medal for Meritorious Research in Neurological Science; the Farber Award; the Distinguished Alumnus Award, University of Kentucky Medical Alumni Association; the Harvey Cushing Medal; and the first annual AANS Cushing Award for Technical Excellence and Innovation in Neurosurgery.

In 2015 he received the Charles B. Wilson Award for “career achievement and substantial contributions to understanding and treatment of brain tumors”. A man of many interests and endless curiosity, Ed found joy in exploring the world around him with a great appetite for adventure, as long as it included variety and history. He preferred outdoor activities, and throughout his life enjoyed hiking, bird watching, photography and especially fly fishing, which provided the kind of peace he treasured in his limited free time. Learning was a priority in every activity. Ed was interested in genealogy and maintained a precise record of his family history, spending over a decade accumulating and scanning family photographs. It was important to him to know from where and whom his family originated. Though he loved to watch sports, especially the UK Wildcats, he did not always follow a particular team he cheered for the underdog.

His love of music was vast, from Arthur Alexander, Etta James, John Prine, Luciano Pavarotti, Van Morrison and Iris Dement, to name a few favorites. Friends and colleagues remember his gentle southern voice, particularly in his advice, “All you have to do is the right thing; everything else will take care of itself.” His family will remember him loving Shakespeare productions, a good barbecue sandwich, Ruth Hunt candy bars, a warm fireplace at Christmas and several beloved dogs.

A Memorial service was held on Monday, September 25, 2017, at the University of Virginia Alumni Hall at 4 p.m. In lieu of flowers the family requests donations be made to Edmond J. Safra Family Lodge at National Institutes of Health, Hospice of the Piedmont, or Piedmont Environmental Council.

From http://www.dailyprogress.com/obituaries/oldfield-dr-edward-hudson/article_3bb9df83-d223-5d26-81f4-cfd4565ee0c6.html

Kathleen (irishlass), Pituitary Bio

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golden-oldie

 

Originally from April 30, 2008

 

I am 65 yo, single, and live alone.

I have a pituitary adenoma. December 5, 2007 I had a pituitary resection, transphenoidal. The adenoma was approx 2.9 cm. A recent MRI revealed a good portion of the tumor remains.

I wear a medical alert bracelet for “Adrenal Insufficiency” and take 20 mg hydrocortizone daily, in divided doses.

The biggest problems I deal with is lack of energy, and inability to lose weight. I’m fifty pounds overweight. Has anyone ever been successful at losing weight?

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Stephanie (Stephanie), Pituitary Bio

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The pituitary gland

3 years ago, 2014, I was 43 and very active, running, doing HIIT workouts, volunteering, making and doing stuff, traveling like a maniac.

Then I started getting cysts that were benign but required surgery. One was endometriosis and ovarian, the second, lumbar. Which resulted in my having chronic, severe numbness and nerve pain in my left leg. I attributed the severe weight gain to not exercising.

Then I went to the emergency room for a abscessed cyst in my neck. An ENT did a follow up MRI and found a cyst on the pituitary gland late 2015, but I had to move to Fairbanks. early 2016.

Finally, I have a team of an Endocrinologist specializing in Cushing’s and a Neurosurgeon at Swedish in Seattle. I have to travel but it’s worth it because I’m being treated for something.

I had the first transphenoidal surgery in Aug 2016 that removed the bulk of the macroadema, but there was still elevated cortisol and they found some cyst left. Just had the second surgery January 2017 and will be going to post-op appointment soon.

I still have symptoms of Cushing’s Disease, don’t know yet if I actually have elevated cortisol, but I left the hospital with no change in cortisol from admittance to discharge. I looked at the scale today and despite watching my eating have gained weight- I have gained 60 lbs in 3 years! I still have the severe, chronic nerve pain so am on meds, go to p/t and a pain management specialist.

Have had hypothyroidism and take steroids. I go through cycles of good days but mostly bad with sleeping and bathroom problems and unhappy thinking.

I rarely leave the house anymore. I look and feel ugly and disabled – I just got a handicapped placard. I want to volunteer, travel, go outside but then when I try, I get sick and can’t. So I’m trying to find ways to be active at home or on my own time schedule. I do fiber arts at home but for my own sanity- it’s not good enough to sell but I have enough stuff to sell! I’m also an introvert with a social phobia, I don’t have any extended family, and I’m new to this area so have not made any friends! So this is the great challenge of my life, where all my roads have led me to, to which my strength and knowledge must apply and conquer.

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Kandis, Pituitary Bio

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golden-oldie

 

Last Updated December 6, 2008

My diagnosis was Pituitary Cushing’s Disease. Had transphenoidal that did not work and ended up having a bilateral adrenalectomy.

Here is a link to my website that has my story and several pictures. I welcome any questions/comments/conversations!

Update November 7, 2007

I just want to update my bio to say that the address of my website has changed. The address of the new website that I have that contains my story and pics (and some new pics) is now:

http://www.KandisMcCartney.fasthoster.info/index.html

Update December 2008

When I finished writing this story over a year ago, I hoped that I wouldn’t have to do any additions, at least not for awhile. However, after marrying the man of dreams in August 2008, the man who stuck by my side through all of this, I started developing some frequent headaches. Nothing horrible, but growing ever more persistent. I had been slowly growing a deeper and deeper tan, so much so that I couldn’t go out into the sun for more than a few minutes without a high SPF sunblock or my skin would turn REALLY dark. We went to the Dominican Republic for our honeymoon, and people thought I was a native I was so dark by the time we left. I always knew that there was the possibility of me developing Nelson’s Syndrome, but I always hoped it wouldn’t happen. I pretty much knew going into my MRI at the end of September that my tumor had grown, especially after finding out that my ACTH levels had doubled in a matter of months. Sure enough, when the results of my MRI came back, we were finally able to see the little booger that had been evasive up until now. My adenoma was clearly visible at approximately 8mm located on what was left of my pituitary gland. My new endocrinologist (my former doctor went into research for awhile) along with my amazingly talented neurosurgeon, as well as the radiologists agreed that I should give a second transphenoidal surgery a try. They felt that with my age, desire to have children, and current condition, it was the best choice for me. The neurosurgeon felt he would have a good chance for success this time, especially since the tumor was now visible. He said that as long as when they got up in there and there was a clear difference between what was normal tissue and what was tumor, he thought it would be very likely the surgery would work and he would be able to remove the tumor. I had grown to really trust my neurosurgeon and believed that this was indeed the right decision for me.

Everything happened pretty quickly, and I was in the hospital awaiting surgery on the morning of October 15, 2008. There was a delay in the start time, as the previous surgery had taken longer than expected and we didn’t have a room. They finally arranged for another room, and I was wheeled on in to have my surgery. I awoke in the recovery room to find my husband waiting there for me to open my eyes. I knew immediately, I just had this feeling that was different from my first transphenoidal, that everything had been successful. I was thoroughly amazed at how well I could breathe this time around! I wasn’t stuffy at all the way I had been the first time around. I didn’t even have to go to ICU, I went straight to my private room. The neurosurgeons came around the following morning and said that the surgery went remarkably well and I handled it like a champ. They said it didn’t even look like I had had surgery. I told them that it really didn’t feel like I had. They said that because I already had this done before, they used the same pathway, through my nose, and it wasn’t near as intense since the hole was already there. Since I had the same two surgeons both times, they knew already how they had done the first one, so they were familiar with my nose and head. I was up and walking around and everyone – doctors, surgeons, nurses, physical therapists were amazed. Everyone could see that I was ready to go home. I was released early that evening after only a little over 24 hours since my surgery.

The recovery at home was very easy, I was only off work for a few days, just to gain my strength back and make sure everything was indeed okay. My post-op bloodwork showed a significant drop in ACTH levels indicating that the surgery was indeed successful. My post-op MRI looked great as well, no signs of tumor. Of course, we can’t be 100% sure that the tumor is completely gone, and that it won’t grow back, but that is what we will hope for. In the meantime, I am so happy, healthy, and grateful to be alive and enjoying life. I will not live each day worrying about what could happen, I’d rather focus on everything good I have right now. …and I’d say, that’s a lot!

I’d like to send my deepest thanks and appreciation to the absolutely wonderful Pituitary Team at Johns Hopkins Hospital. They are some of the most amazingly talented, intelligent, and kind doctors that one could ever wish for. I wouldn’t be sitting here today so healthy and happy without them. I’d like to send special thanks to my endocrinologist, Dr. Salvatori, who always takes such good care of me, and my incredible neurosurgeon, Dr. Olivi, who I trust with my life! You are both my heroes.

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Correy D (Cushie Correy), Pituitary Bio

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pituitary-location
In the beginning:

This journey started long before I knew it did. I was healthy for the first 27 years of my life. Around 27 or 28 I started having problems. It started with high blood pressure. No problem, that runs in the family. Medication will solve that. Around 30 there was something more strange going on. I still produced milk even though my youngest was 5. My doctor sent me in for a galactogram (a mammogram with dye injected in my glands). It came back normal. My breast and mammary glands were fine.

Over the next few years came depression, weight gain regardless of diet and exercise, and random muscle strains. My doctor said to try a little harder and eat a little better. I threw my hands up in the air. I had already tried everything and still I was gaining. This went on from 2009 to about June of this year.

In June of 2013 I broke a rib when I was trying to crack my back. June of 2014 I broke another one on the opposite side when I was coughing. Finally, my doctor took notice. All the sudden my previous diagnosis were not individual issues, but symptoms of a bigger problem. Cushing’s disease has a laundry list of symptoms and I had almost all of them. I had already mentioned lactation, high blood pressure, depression, weight gain and brittle bones. I also had other symptoms I was not even aware of. My face had become round and red, most of my weight accumulated in my torso, there was a pronounced fat hump on my upper back, there were purple marks on my belly (striae) which I had thought were stretch marks, my face had become fuzzy, and I hadn’t had a period in at least 7 years.

The symptoms weren’t enough for a diagnosis. My doctor orders labs for hormone levels, cortisol levels, and I don’t know what else (about 5 blood vials worth). These came back with high cortisol levels and enough other oddities that I was referred on to an endocrinologist. This doctor did the first panel of tests over and added a few more. It seemed that everyone knew what it was but no one wanted to be the one to diagnose Cushing’s.

Now there are only a couple of things that can cause Cushing’s. The first is steroid abuse…ummm, no. The second is a tumor either on the pituitary gland or the adrenal gland. These marvelous tests determined that it was the pituitary version because if it was adrenal only cortisol would have been effected. The pituitary gland controls a myriad of chemicals in your body and all my levels were off.

OK, so they were convinced it was Cushing’s, now we just had to see the tumor to prove it…MRI time. I don’t know if you have ever had an MRI but I despise them. Reasons, I am claustrophobic and very large. It was a horrible experience resulting in fuzzy images, but they were clear enough to show a tumor sitting square on my pituitary gland. For those who have not looked it up by now the pituitary is on the front (face) side of your brain, settled in between the major artery and vein in your head, right behind your eye balls and sinus cavity. This is not a convenient place to have a tumor.

The endocrinologist then referred me to a neurosurgeon. The local surgeon referred my case to Mayo Clinic of Minnesota. So, we are talking tests and waiting from June through September. I was told to report to Mayo September 23rd. I was given the impression I would meet the doc and be scheduled for surgery Wednesday or Thursday. This was not so.

I brought a team with me: my sister, Amanda and her friend Athena and my bestie Lauren. We first met with the Mayo endocrinologist, Dr. Abboud. He decided he wanted to run his own tests there before there would be a surgery. He did blood test, urine tests, even saliva tests. In the meantime, I met the neurosurgeon up there, Dr. Von Gompel. He explained the surgery and scheduled it for September 30th 2014.

Here are my Facebook posts from this time:

9/23 First Mayo Update:

I met with Dr. Charles Abboud, Endocrinologist and we did an in-depth evaluation of my symptoms, physical characteristics, and medical history. There are so many things that I have considered normal for me over the past 8 years that are related to this disease. It’s nutso pants.

Anyways, it was determined before surgery they want to do more scans and testing because although it is likely the pituitary tumor is the cause, I may have other contributing tumors elsewhere. This means I will likely be up here longer than anticipated with surgery delayed for a minimum of 3 days to get results on this battery of testing. More to follow…

9/23 Second Mayo Update:

I have now received the schedule for the week. I will have more scans to be sure there are no tumors elsewhere. I will also have various test on bodily fluids, secretions, swabbings and their reactions to different medications throughout the week.

I met with the neurosurgeon, Dr. Jamie Van Gompel this afternoon. This was the appointment in which they gave me the assessment of what the surgery would entail for my case specifically, risks, odds of complications and most importantly a date. The trans sphenoidal endoscopic surgery (I feel so smart) will be next Tuesday now. Until then more waiting…and testing…and more waiting.

Sept. 24

Yesterday was information overload. Between consultations and running floors 1-19 of the clinic multiple times then making extended hotel arrangements and Walgreen’s runs I was exhausted x12.

~~~~~~~~~~~~~~~~~~~~~~

On to today: I am finally closing out day one of excessive testing. Upon arrival at the clinic I turned in samples of #’s 1 and 2 and saliva (all separate, thank gods). Due to my claustrophobia, we opted for wheelchair when using the elevators (I had collapsed yesterday when one got too full on me.)

At 8 am there were 6 vials of blood drawn, 9:30 a chest x-ray, then a info session for my sleep study tonight, next a midsection CT scan with contrast (holy warm sauce) and finally another blood draw for my PM cortisol levels. Whew…donsies!!!

Sept 24

I have difficulty sleeping without a fan. I have not slept well the past couple of nights because of lack of air movement. I was all ready to run to Target and buy one when Lauren was like, I’ll just call the front desk and see if they have them. This is me being used to self-reliance vs actual customer service. My sleep study is saved. Now we’ll see if I legitimately stop breathing.

Sept 26

Friday update:

The past couple of days have been kind of slow compared to the first couple here. Yesterday completed my sleep study and CT looking for additional Timons, results still pending. Today I had a bone density test. This shit gave me osteoporosis. That’s why my ribs kept breaking. Over the weekend, I’ll have more ‘sample collections’ and blood draws and attempt to not be bored to death in between.

On the plus side the weather has been gorgeous, I have had muchos girl/sissy time, and in a town like this survival stories abound.

Have a GREAT weekend!!

Sept 29

Case of the Mayo Mondays:

Today began with another blood test. This one, the lab tech had to get an IV which is generally not an issue for me. This time the guy blew out two veins. The 3rd try he “kind of” a clear one in my hand. Through this he had to do medication injections and blood draws at 15 minute intervals for an hour and a half. This resulted in knots in 3 places where veins used to reside.

Next up was a head CT to map my brain. This was interesting to me. I got another IV (a clear one this time) for contrast dye, nodes stuck all over my face and head, and run through a CT scanner. From this they will make a map of the blood vessels through my head to help the surgeon navigate tomorrow. They removed the nodes but left dots in permanent marker and tape over them so they do not get wiped off before tomorrow. It will be interesting walking around town tonight.

I am done with appointments for the day. Whoop!

The good news of the day: The chest CT showed “multiple healing rib fractures” but no more Timones. Yay!!

At 8:30 tonight I will call an automated system, enter my patient ID, and find out what time to report for duty tomorrow. I must find distraction. I am starting to get anxious. Can it be next week already?

Sept 29 Post 2

Reporting for duty at 5:45 am central.

Tomorrow determines if I get to continue to eat vegetables or become one…

Sept 30 I registered at St. Mary’s Hospital and got settled in. Surgery began at 9:25. I was done around 13:00.

Oct 1

My first post-surgery post

Timone is gone. I am tired.

Oct 2

Hey all, got behind on the updates because a lot has changed very quickly. I have “complications”. Please keep positive energy pointed this direction. I may be up here for a while now.later Oct 2

If medical stuff makes you icky, keep scrolling.

So here’s the run down after surgery. The tumor removal itself went well. They believe they got the whole thing without much damage to the pituitary gland. The two issues that remain are post-surgery my cerebral spinal fluid (csf) sprung a leak and the Cushing’s disease that the tumor caused kicked in.

A few hours after surgery I started dripping/ running clear “snot” from my nose. It only happened when I was upright or leaned forward. The fluid was tested and determined to be csf. Now a person cannot just go around leaking brain juice so action had to be taken. The doctors put in a lumbar puncture and are draining spinal fluid every two hours. This will take the pressure off my head and give it a chance to heal. This means I am here at least till Sunday. If this does not work, they must go back in and manually patch the leak.

The Cushing disease also kicked in full effect today. That meant today with the tumor gone the excess amounts of cortisol my body was used to stopped and I crashed. This would be like a meth head going cold turkey. This morning was spent trying to find the right steroid/ dose to balance me back out. With luck, I will be able to wean off these eventually.

As they steroids are currently wearing off again I’m going to sleep because I don’t really have a choice. NITE ALL!!!

Oct 6

So I know it’s been a while….

The day after my last update they put in a lumbar puncture and connected a drain to it. 10 ml of csf was drained every 2 hours for 2 days. This took the pressure off my brain= no more leakage= time to heal. I have also been sleeping almost nonstop. It seems to have worked, no more nose leakage. They drained 30 ml this morning and will do one more drain tomorrow AM and if no more leakage I will get all my departing instructions and GET TO LEAVE.

Next challenge: re-balancing my chemical physiology.

Oct 7

This morning I woke up in Minnesota, still in the hospital. They stole more blood, drained more csf, and pulled that thing out of my back. Best news of the day: After they pulled out the drain my nose did not start leaking again. This meant I was clear to leave…woot!

Paperwork, discharge instructions, shower because ewww hospital, prescriptions, freedom. Oh no, not yet, doctor appointment with my favorite endocrinologist of all time, Dr. Abboud. So, it took a while but home we came.

I have a fuzzy head but full heart. Thank you all so much for your kind words.

Home at last and then the real Cushing’s journey began.

Home Sweet What?!?!?

I came home from Mayo October 7. Home to me may be considered a madhouse to others. My house contains my children (17-year-old girl, 10-year-old boy), my sister, 3 dogs, 4 cats, and 3 turtles. Upstairs contains my dittos and 2 of the cats; the basement homes my sister, her two dogs, and the other 2 cats; and the main level is myself, my dog (Toby), and the stupid turtles. I was happy to be going home to my madhouse.

Before the surgery I had done quite a bit of research about the symptoms of Cushing’s, the causes, the surgery itself. I had not, however researched much about Cushing’s recovery. While still in the hospital I remember sleeping, in between all the intermittent blood draws, vitals checks, and med administering. There was not much else. Once home I was initially just concerned with watching for brain juice leakage. I was not prepared for reality.

Read reality:

http://csrf.net/doctors-articles/recovery/recovery-from-cushings-and-coping-with-recovery/

My reality also included my madhouse. For as full as my house is I spend most of my days alone. My sis works nights so she is sleeping during my waking hours and gone overnight, the dittos are in school and the girl works nights. The cats are on their respective floors. It’s just me and my Toby since the turtles are not for me. When I’m awake, I look around and see all the things I could be doing if I was mobile. The floors need swept, dishes need done, general tidying and dusting required. It’s not that these things never get done but they could be done faster if I were able.

I have now been home a month. Physically, I was more ok when I got home than now. At that point I was still tapering down prednisone. I was still sleeping quite a bit, especially after dropping my dosage, but by the end of the week I was moving around more. After a few weeks, the tapering was done and I crashed once again. I am sleeping till the afternoon. I am weak to the point that moving from room to room is exercise, painful exercise. I stopped taking the prescribed pain killers so I am depending on Tylenol. Tylenol sucks ass. I also still lose words. Often, I cannot complete a sentence. I know exactly what needs to be said but the term, phrase, or name is completely gone. In my “before Cushing’s life” I was pretty flipping eloquent so this is extremely frustrating. To be honest the whole thing is frustrating. I am a strong intelligent independent woman reduced to incapable and not so eloquent blob.

A series of unfortunate events…the sequel.

I suppose I should start at the end of my last post which was flippin January for gods sake. I don’t know why I felt the need to stop writing when things started getting bad again. Documenting my recovery was so much more positive than writing about a relapse but now it’s time to catch up. Cushing’s is a journey with highs and lows. Jump on the coaster with me.

At the end of January I was on the way over a big hill on the coaster. I was doing water aerobics, getting more mobile, working with dogs again. I had my appointment with the local endo and she was dismissive. She basically said the tumor was gone and I should be losing weight faster. This is the exact reason that not just any endo should deal with Cushing’s patients. They don’t get it. Removing the tumor is only step one. Next is re-balancing hormones, then dealing with all the havoc Cushing’s has left behind. My January cortisol labs had been normal, as in recovered norm which was a recovery from the crash post op 0. It is not usual to be at normal range so soon after weaning of prednisone, but we took it for good news anyways.

By mid Feb I was starting to get nervous. I was starting to feel things, previous symptom kind of things. My skin started to break out again, I had headaches again, and I started to gain weight to spite moving more than I had in over a year. I had a follow-up MRI in February. There was the post op variances they expected and then, there it was, a new 2 mm regrowth. FML!

I did not feel good about continuing with the local endo. I could not shake the feeling she had blown me off as just another fat hypochondriac. My GP referred me down to U of I where I met Dr. Christina Ogrin. Our first appointment she took a whole afternoon to listen to my story. She told me she had never dealt with Cushing’s before but she wanted to help and she would work with her colleagues and research to see where we needed to go from if the tests confirmed a recurrence. We repeated the cortisol and other hormone tests that had just been performed in January and there was the confirmation. My cortisol was back above normal range. Dr. Ogrin contacted Dr. Abboud, my Mayo endo, to get his take on the situation. After consulting the U of I team, Dr. Abboud, and her own research, Dr. Ogrin laid out the options.

1. Operate again

2. Go on ketoconazole and get radiation

3. Try a newer medication (Signifor) to counter the cortisol and possibly shrink the tumor.

As I was just coming off of my first trans sphenoidal adenectomy, I was not eager to jump on that again. I had heard horrible things about ketoconazole so that was not a happy thought. Signifor sounded like my best option.

There were many baseline tests that had to be performed to start this process. We tested cortisol levels from blood, pee, and spit. We did a new MRI (April) which showed Marty* had already grown. I had an EKG and ultrasound of my gallbladder because Signifor can affected the heart and cause gallstones. When we did the gallbladder ultrasound there were already about 9 good sized stones present. At that point it was decided I should have it removed prior to starting the medication. Signifor also causes an increase in blood sugar and since mine was already borderline high they started me on Metformin. They tell me my gallbladder has to come out, a preventative measure since the odds if it causing problems if it stayed were close to 100%. Sweet. Here I am taking it all in stride. If that’s the next step, then that is what we will do. My coworkers were supportive and told me to put my health first. I would not lose my job. Woot!

May came in like a whirlwind. I had a pre-op appointment with general surgery to set up my gallbladder removal. A couple of days after that I was in my garage leaving for work when I lost my balance and fell forward catching myself with my arms outstretched. My balance, muscles, and bone strength had all taken a hit from the Cushing’s so my arm snapped. The break was bad, right above the elbow, there was one clean break and another longer break up the bone. One ambulance ride and many pain pills later I was admitted at St. Luke’s and informed they would have to operate. I am now the proud owner of hardware in my arm.

At this point I was already scheduled for my Laparoscopic Gallbladder Removal (Cholecystectomy) so in the beginning of June we went ahead and did that too. What is supposed to be a simple surgery went sideways when they nicked my liver. I had to have a icky drain for the bleeding. A couple weeks later I went to have the drain removed and everything looked fine. That night I starting to get sick. My temp went up, I started vomiting and my stomach hurt so much I thought I would pass out which would have been a blessing because I wanted to sleep till it was over but I could not due to the pain. I know, run on sentence, but it was a run-on couple of days. My stubborn behind would not go to the doctor because I had just been and everything was ok. Or not…

I ended up in the ER again. They transported me from St Luke’s to U of I because my liver levels were ridiculous high and the local hospital did not want to deal with my issues. Once at the U, I was admitted, poked, and prodded. By the end it was determined that I was passing a gallstone that had gotten stuck on the wrong side of the clip when they took my gallbladder. This can only happen in my world. Who passes a gallstone when they no longer have a gallbladder? This girl.

This took us to July. Dr. Ogrin was out of the country. She wanted me to take the month to recover and get used to the Metformin. We would meet when she returned to start the Signifor. And so we did. Signifor is very expensive as it is rare and there are no generics for it. Dr. Ogrin successfully fought the insurance company because there is no other FDA approved medication for pituitary Cushing’s. The first month I was on it there was little relief. My brain fog was back along with my other returned symptoms and now I also had extreme digestive issues. These were three part. Gallbladder removal itself affects digestion. The Metformin is known to cause such problems. Now the Signifor injections themselves cause nausea. After a month, I got a 2-week reprieve because the insurance company denied my renewal so now we are starting over. I will retest cortisol levels in November to see if the Signifor is doing anything aside from making me nauseous.

I have also spoken with the radiology oncology department at U of I. They have reviewed my case and I am awaiting word on whether they would recommend a single dose (gamma knife) radiation or a five-week treatment. Either way I would continue on the Signifor because the radiation results can take up to a year to show.

There you have it. The last nine months in 1500 words ish. Some have babies in 9 months. Not I, I have a series of unfortunate events.

*I named Timone’s sequel Marty for a few reasons. Marty is the zebra in Madagascar. Zebras are the animal mascot for Cushing’s because doctors have this awesome mantra that is drilled into them when they are in medical school, “If you hear hoof beats, think horses.” Well Cushing’s is one of the most misdiagnosed illnesses because our symptoms may be hoof beats but zebras have hooves too. Sorry for the tangent but it is important to the Marty explanation. In Madagascar 3, Marty has a moment that mimics the overactive distractedness that a Cushie brain knows so well. He sings and dances for his new circus friends. “Afro circus, afro circus, polka-dot, polka-dot, afro!”

https://www.youtube.com/watch?v=aZYFqle7GvA (the submitted video is unavailable)

Radiation Oncology- Dr Smith

I got a call back from Dr. Smith today. University of Iowa is a teaching hospital. As such, they have interdisciplinary case meetings on Tuesdays to discuss the more complicated patients coming through the U. It is a very “5 heads are better than one” approach which I appreciate. In my case, they discussed radiation vs Trans sphenoidal adenectomy. Radiology put the case up and although it is a viable option neurosurgery believes there is a better chance for better quality of life with their option. Each specialty believes strongly in their course of action. Of course, it is all up to me.

The risk of gamma knife radiation would be hypopituitarism (disorder in which your pituitary gland fails to produce one or more of its hormones) Ironically the symptoms of hypopituitarism are like what I am already experiencing with Cushing’s. I could end up on replacement therapies for the rest of my life.

The drawbacks of the surgery are the surgery itself is traumatic, the recovery is difficult, and the failure rate is high. My first surgery left me bedridden for a couple of months. I could not afford to take that much time off again. At this point taking a day off impacts but a month…impossible.

I am torn but I did agree to meet with the neurosurgeon before going ahead with the radiation treatment. I am still processing. Neither is a very high success rate and both have negatives. The drug therapy I am on is a temporary situation. The longest it has been reported to work is 5 years. Cushing’s has a high mortality rate with no intervention. I am only 36 and have an 11-year-old son. Five years is not enough.

What do you do when all options available are just buying time?

Neurosurgery- Dr Greenlee

Today I had my neurosurgery appointment. The surgeon came in, looked at my scans and reviewed my history. This is the same doctor who had been so sure surgery would be better than radiation. He told me this time the tumor is wrapped around my carotid artery. He told me there would only be a 60% “cure rate” by going through that horrendous surgery again. Along with a higher fail rate, it would also be much higher risk of complications or death due to the position of the tumor. Looks like radiation is in my future.

I do have a follow up appointment with my endocrinologist, Dr Ogrin coming up. We will be checking my cortisol (24-hour urine Yay!) to see if the Signifor injections are having any effect. We shall see.

Testing testing…1 2 3

Every Cushie knows the frustration of testing. Cushing’s is one of those really hard to prove diseases. Our hormone levels are tested at every junction of diagnosis and treatment. Cortisol is the main hormone tested for. Cushing’s can affect several chemicals but cortisol is the steroid that causes the most damage. There are several ways cortisol is tested. Saliva- you suck on a cotton swab in between 11pm and midnight and send it off to the lab. Blood- soooo many blood tests, AM cortisol, PM cortisol, and dex suppression. And of course, the pee- most often 24 hour urine.

Every result comes with mixes emotions. When testing for a diagnosis, if you get abnormal results you are happy that you are not crazy, there really is something wrong. So many people are told there is nothing wrong with them for so long, they start to actually feel crazy. When you are testing during treatment and get a bad result, then comes the fear. What next? What does this mean for my treatment options? Am I out of options? This fear is only slightly amplified by the anxiety that comes along as a wonderful side effect of the disease itself.

Results time:

Cortisol, Urine Free – per 24 h Result

175.5 Normal Range

<=45.0 Measure

ug/d

Last week I did a 24-hour urine test. This is seriously collecting every drip for 24 hours, the results of which I got today. Considering the recent consulting appointments, I’m once again not sure which direction to go. The test show my cortisol is still high, not as high as it had been in the past. My last 24 hour was May 10th and 263.4 ug/d. At that rate 175.5 looks pretty good. The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?

More questions than answers when test results arrive. This makes me long for the days of pass/fail pregnancy tests. At least then there was a definite answer and knowledge of options to follow.

Radio Roller Coaster

“The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?”

These were the questions I had after receiving my last test results. My 24-hour urine cortisol had still been high. I had a follow up with Dr. Ogrin (endo). She was quite encouraged. My results were still above normal range but were much lower than my pre-medicated levels and my blood cortisol and ACTH were back down to normal range. This meant I got to stay on the Signifor and radiation was still a go.

FF to yesterday. I went to meet with Dr. Smith’s office for my pre-radio-surgery patient education and MRI. We went through the procedure and the nurse stepped out to grab whoever was taking me down to MRI. No one came back…we waited for just over an hour. I have never waited at this office before so I knew it was not good. Finally Dr. Smith comes in. I actually hadn’t expected to see him yesterday so my suspicions were confirmed. He sat down and told me my weight disqualified me from the gamma knife radiation. My options now are the full 6-week course of radiation or the trans sphenoidal adenectomy. The same surgery that I was told there was only a 60% change of success. To me, this is just not a viable option.

Every time I think there is a plan, it gets squashed. Have you gotten whiplash from my roller coaster yet? This disease got so far gone that I am too fat to be treated. I would not wish Cushing’s on my worst enemy. This thing might just kill me. All of my systems are stressed from the extra weight. My blood pressure cannot be regulated. Signifor has made me officially diabetic. Grrrrrrrrrrr!!!!!!!!!!

Reverse: Part way through this post Dr. Smith called. After discussing my case with his colleagues, he was reminded they were upgrading one of the radio surgery stations and it would no longer have the weight restrictions. I’ll have to wait till mid-December but Gamma Knife is still a possibility. This is truly good news because the success rate with radio surgery is so much higher than standard ration treatment.

Every disappointment is just a moment in time. You stay because you get the counter moment eventually. BUT if my life were a movie, I wouldn’t watch it, I’m just sayin…

Signifor

Signifor is the supposed miracle treatment for pituitary Cushing’s, the only drug officially approved to treat the disease. When my first surgery failed, I was not really wanting to get right into another one, Dr. Ogrin did some research and jumped on this as an option for me. My endo is not a Cushing’s specialist but she is very enthusiastic and willing to put in the work so her excitement was infectious (haha). There were a couple of hurdles to overcome before actually starting treatment. The medication is a twice daily injection. The cost is approximately 12,000 per month. In order to get the insurance company to cover it we had to do many preliminary tests and baselines for future tracking. There were the normal cortisol level tests (blood, urine, and saliva), EEG, and ultrasound of my gallbladder as Signifor often caused gallstones. During the ultrasound, it was found that I already had about a dozen gallstones. The stones were not irritated but since they were only going to get worse it was decided to remove the gallbladder proactively. OK, so about two months later we were ready to go.

I started the injections knowing that the major side effect would be the increase of blood sugar generally causing diabetes so when my blood sugar went up it wasn’t a surprise. As big as I am, I had never actually crossed the line to diabetic before. We started Metformin which made me sick as a dog. I still stayed on it for almost 2 months. It kept my blood sugar in normal range but I basically lived in the bathroom. YUCK! Now we are trying a Glipizide. It has been ok but I take it with food and my spikes are post injection so my sugars never stay level. The other side effects nausea and hair loss, I can live with I guess. Not a fan of seeing my own scalp but due to overheating I can’t do hats.

Also, the insurance will only pay for the drug 3 months at a time and then require proof it is working before they will agree to the next 3. I was really nervous because I really didn’t know if it was working. Some of my initial symptoms were easing up but nothing was cured and I was still gaining weight. Time for test again. Blood, urine, and saliva all told the same tale. My cortisol was lower than initial levels. It had been cut in half but was still well above “normal” range. I just got word that it was enough for insurance to approve to continue treatment. Woo HOO!

This is not a long term solution. It’s a treatment not a cure. It only works as long as I am able to get the injections and the side effects are hard on the body. About 20 minutes after every shot I get waves of nausea. No way around that one. I am now diabetic which may or may not go away. The expense is also not realistic long term. I currently have Medicaid but if I ever had to pay $12,000 a month myself it just wouldn’t happen. I am only 36 so we are talking just under $150,000 every year for a long time still and that is just the injections. My other maintenance meds (blood pressure, depression, anxiety) are a whole separate thing. When my cortisol does get to normal we may be able to ween off some of them, thank god.

So, for long term I still have to do either the trans-nasal or radio surgery to get rid of the hormone producing tumor. I’m pretty set on radio surgery. I spoke to Dr. Smith’s office today and they say the 14th or 21st. I’ll hear soon for a set date.

So, with all of the above you may be asking why bother with Signifor at all. I must admit I ask myself the same thing sometimes but then I consider what has improved since starting.

• My mental clarity has improved. I was getting increasingly foggy.

• I am on NO pain meds. The muscle pain just for pain sake is gone.

• I am stronger. I no longer feel as if I cannot get out of bed or off the couch. I may not have lost any weight but I can carry it around now.

• My ‘sweats’ are getting fewer and farther between. Before I would break into a drenching sweat regularly for no reason at all. It’s now down to only about once a day unless I’m at a store or get to cleaning my house and overexert.

• I can sleep through the night.

• I no longer am constantly fatigued.

• I have hope that one day I could be normal again.

These are the things I must remind myself of when I have a rough day. The kind of sick I am now is much better that my previous disheartening misery. 🙂 So I’ll continue until a cure or insurance stops paying.

Feb 2016 I had the gamma knife radiation…bunches of fun. No changes…

…except it is now January 2017. My symptoms are returning, levels back up, whatever Signifor was doing, it doesn’t seem to be any longer.

My doctor who was so excited for challenge in the beginning is starting to throw around gastric bypass, Korlym, and BLA, There is no end to the bullshit.

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Liz L, Pituitary Bio

3 Comments

The pituitary gland

The pituitary gland

My name is Liz L. I live at the coast in California. I am married with two.

I was diagnosed with cushings in april of 2002. I had trasnsedoytal surgery in august. I lost some weight but not a lot. I thought things were going ok until maybe a year ago.

I started putting on weight. well it continued to go up so I saw my doctor. She told me I had some sort of blood disorder and cushings and I cannot eat carbs because it causes me to gain weight.

I have been seeing my encronologist and she basically has said everything is going pretty good nothing to worry about.

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