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Giving Thanks: 36 Years Post-Op

November 3, 2023

MaryO Adrenal Insufficiency, growth hormone, Growth Hormone Deficiency, MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , , , 2 Comments

 

Today is the 36th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 36 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while and I’m back on it..

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Until I was 10 years NED (no evidence of disease) from cancer, I still couldn’t go back on the GH but I’m back now.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last year, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist didn’t want me to get a cortisone injection in my knee.  So, I got a whole new knee instead.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

It all started way back in 1983.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In July of 2000, I was talking with my dear friend Alice, who ran 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 2023, we have over 73 thousand members. Some “rare disease”!

Interview Archive: My Journey | Living with Cushing’s Disease

June 4, 2019

MaryO BlogTalkRadio, Interview, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , Leave a comment

It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel was our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern.

The archived interview is available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.

 

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Chelsea, Undiagnosed Bio

January 23, 2016

MaryO Bipolar, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , , , , 15 Comments

undiagnosed2

 

Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.

Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.

I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.

Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.

My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.

During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.

Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.

At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.

The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.

Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.

It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.

It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.

SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.

Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.

During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.

I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.

A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.

Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.

Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.

Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.

In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.

After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.

If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.

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My Journey | Living with Cushing’s Disease

May 6, 2015

MaryO BlogTalkRadio, Interview, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , Leave a comment

It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel will be our guest in an interview on BlogTalk Radio  Wednesday, June 3 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 84 other past interviews to listen to!

Erica (Ericaop), Undiagnosed Bio

February 28, 2015

MaryO Golden Oldies, Hypothyroidism, Other Diagnosis, PCOS, Thyroid, Undiagnosed , , , , , , , , , , Leave a comment

golden-oldie

 

I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.

I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.

In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.

After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn’t with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn’t until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I’m fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can’t control my emotions one day & the next I’m fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.

I was just about to give up & begin to reconcile that its just me & I’m crazy as the doctors want me to think until two weeks ago I saw an episode of TLC’s Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing’s Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.

After doing further research I decided I really want to see someone who is knowledgeable about Cushing’s so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don’t have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven’t had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady’s attention. I am scared that my labs will not show anything to warrant an appointment & I don’t know where to go from here.

I don’t have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.

Does anyone out there have any suggestions on what I should do?

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Magdalena, Food-Dependent Cushing’s Bio

June 23, 2013

MaryO Adrenal, Adrenal Surgery, Ectopic, Food-Dependent Cushing's, GIP-Dependent Cushing's, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 8 Comments

Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

~~~

Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

Marki (Marki), Undiagnosed Bio

May 6, 2013

MaryO Pituitary , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi!

My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.

My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.

About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.

When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:

24 hour-

range- 0-50

me- 49.7

Midnight saliva-

range- .5-1

me- 9.16

So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!

Update:

My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂