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Catherine B, Pituitary Bio

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I’ve had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn’t realize they were related to illness, or that I had one overarching disease causing them all.

Looking back, the onset of my disease was in my teen years.  I gained more than 60lbs in roughly a year’s time without changing diet or activity level.  I developed stretch marks that ran from my knees to my elbows (and everywhere in between!).  I started losing my once-thick hair.  I developed horrible acne.  I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night.  I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on either).  I was told it was either all in my head or all my fault (by varying people, some directly, some implied) and I internalized that and just assumed I was too lazy and had bad genetics…  I TRIED to exercise but would feel so sick afterwards that I couldn’t make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference.  When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it’ll go away), and sometimes treated me like I was just plain crazy.  I still don’t go to doctors unless I have to because of those experiences.

After getting married, I had had some complicated pregnancies…but it was more than that.  I would get flank pain and drop into “lows” that I didn’t understand, complete with feeling cold, diarrhea, weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it).  I had high cardiac output but low blood pressure and a high pulse rate.  I’d go into tachycardia (140 bpm +) for NO apparent reason and had all kinds of cardiac monitoring done.  My blood pressure was labile, but usually low, and still I’d end up with severe complications. Breastfeeding wasn’t going well despite the “mechanics” and flow being there…my babies were never satisfied and I always felt sickly.  The differences were drastic (but a bit graphic to share here publicly).  I seemed to get pregnant at the drop of a hat (opposite of the norm for Cushie women), but my body seemed unable to deliver on it’s own.  My body just didn’t react like it should to anything.  I even once had an episode post-partum that now I know was likely some mixture of adrenal insufficiency and/or my hypoaldosteronism.  I was left alone to sleep it off (just thinking about it now scares me), but I didn’t know any better at the time.

Then about 3-4 years ago I hit this point where I just had the feeling that if I didn’t get whatever was going on under control, I’d end up with something more permanent and dangerous (like cancer or diabetes).  I still got seemingly random symptoms but I had too many of them, and they were getting worse.  I also started to notice that my good days and bad days seemed to come in cycles.  3 days, 3 weeks…I’d be good for a while, then worse for a while, then good for a while.  I had already eaten “clean” and kept myself active, so I decided to try “nutritional balancing therapy” and started taking a karate class multiple times a week (burns TONS of calories, fyi).  They ran some tests for various vitamins/minerals, and said I had adrenal insufficiency.  The diet I was put on was a higher fat (good fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in more fat) but between the diet and the exercise, I became so ill I couldn’t get off the couch for about 4 weeks.  I had to give up both and it took some time to recover, but I never got back to where I had been, not even close.

I started studying the natural healing term “adrenal fatigue” and came to the realization that I had done everything to correct AF but was still going downhill.  I had tried supplements, diet (years of it), everything.  I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant.  I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it.  I just became more and more exhausted.  To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids.  The CNM and OB both said I was just depressed and upped my dose of Vitamin D.  They wanted me to go on antidepressants, and I refused.  I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn’t treat me because of my pregnancy.  No help, no suggestions, he told me “come see me if you make it out alive.”  I obviously needed outside help from a true expert.

I had joined an Addison’s support group online about this time, and they helped me learn a lot about AI and Addison’s, about symptoms, testing, about Hashimoto’s, etc.  I am SO grateful to these women who supported me and taught me much.  They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately.  I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help.   I was desperate; I was hurting.  My whole family was struggling because of this disease and the treatment (and lack thereof) we’d received from doctors and so-called friends.

These Addisonians had been talking a lot about one specific endocrinologist that specializes in pituitary disorders (who also happens to be in California).  In complete desperation, I emailed him, knowing the chances that he’d take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely.  But I was scared of what a delivery with untreated Addison’s might bring (I knew the stats and knew I didn’t trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn’t even test my thyroid or iron!).  I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady.  She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly.  He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets.  My appointment was on Valentine’s evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!

I went in SURE I had Addison’s Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact.  I came out with a LOT of testing for Cushing’s Disease.  It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol.  You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands.  While the tumor is actively pumping out ACTH, it can shut down your own pituitary’s normal production because the pituitary feedback says there is already too much cortisol in your system.  Then, if/when the tumor “kicks off” (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in.  This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.

I was unprepared for the change in direction at my appointment.  I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing’s Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms.  I have cyclic Cushing’s Disease.  I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing’s (she refused treatment and was a stubborn, intelligent women who got her way).  I had read through some information with my husband at that time.  We had concluded that it was a possibility, but I didn’t have enough of the symptoms (maybe half?) and decided that I wasn’t nearly sick enough for that to be the problem.  How wrong we were!  I certainly wasn’t as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.

At my appointment I was also told I had hypothyroidism.  He ordered more of those tests (to get a trend) and an antibody test.  It was found I have Hashimoto’s Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication.  My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he’d have had me in the hospital for IV iron infusions.  Needless to say, I was put on iron –lots of it.  My vitamin D was still lower than he’d like despite having been on treatment, so he switched me to 50K iu’s of D3 weekly (My OB had chastised me repeatedly for taking D3 instead of D2; Ha ha!).

I had to wait for a while after my pregnancy to allow my body to normalize before doing my Cushing’s testing.  I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results.  My pituitary MRI was read clean.  Dr. F told me he didn’t know what was wrong, but that it didn’t look like it was Cushing’s because of the testing.  I was not prepared for that, and just ended the conversation in an emotional mess.  I was emotionally, mentally, and physically exhausted and didn’t plead my case.  I didn’t have insurance or the money to test more, even though I was pretty sure I needed it.  And looking back, had I asked, he probably would have obliged.

I decided to again try natural healing methods.  Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse.  Every time I hit another “low”, it seemed to become my new normal…and that was scary.  I kept losing more energy and strength, more of my mental ability, and each time I couldn’t imagine it getting worse, yet it always did.  (I still haven’t learned this lesson!)

About a year later, after a lot of prayer and thinking, after I’d exhausted most natural treatment methodologies I felt willing to try, I realized I did indeed need to go back and push for further testing, and test by symptoms.  Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts.  I came up with a game plan, and the hope of it made the effort required seem possible.

I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or arguing necessary!  He gave me more sensitive testing this go round, and told me to test as much as it took.  He believed me!  It was as if the way just opened up for me this time.  I was uninsured, but I applied for the Cushing’s Assistance program through NORD (The National Organization for Rare Disorders) and was accepted.  They offered to cover the costs of testing, doctor’s appointments, and travel needed for the same, that would lead to a diagnosis of Cushing’s Disease.  I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle.  It was an answer to a prayer I didn’t even think to voice.  I then called to share the news with family and friends and bawled again, scaring yet more customers!  Having no insurance, this made everything possible.

Tracking my symptoms wasn’t a very easy task.  I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out.  My testing was also complicated by living in Alaska.  I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond.  It took about a month to get each result back.  Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data.

In that time, I also made friends on the Cushing’s-Help website and Facebook groups.  I learned a LOT of things from them, and one friend in particular likes to “read” pituitary MRI’s the way I like to “read” fetal ultrasounds.  She looked at my previously “clean” MRI and said that in her lay opinion, it was anything BUT normal.  As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma’s and suspicious areas on my MRI to forward on to my endocrinologist.  As it turns out, my doctor hadn’t read the disc himself and had just read the radiologist’s report.  He looked at the disc and agreed it was not normal, then sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum “rainbow” shape to the pituitary) and that it should be read by a neurosurgeon this time around.  JOY OF JOYS!  This brought me even more hope!  He said SURGEON, not just himself…that meant I was getting so close to that diagnosis and surgery clearance –to getting help.

I scheduled my MRI trip (can’t do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city.  NORD paid for the flights, reimbursed me for the cost of my doctor’s appointment, paid for the MRI, and paid for my hotel room.  My husband came with me this time, and it was the best doctor’s appointment I’ve had in my life.  I was still nervous that somehow it wasn’t enough, or that the MRI done the day before my appointment would miraculously have become normal again.  That was not the case.  My MRI showed two possible adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient…and it felt AMAZING!

Who knew we’d be so excited to hear I was diagnosed with a deadly disease?  That we’d shout for joy and clap our hands at finding multiple tumors in my head?  I had a smile that wouldn’t go away.  The medical student shadowing my endocrinologist hadn’t seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy!  I also wore my “Does my pituitary gland make me look fat?” shirt to this appointment, so we were joking, taking pictures, and having a grand old time.  He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, “It’s right HERE!”  My endocrinologist is generally stoic, quiet, caring yet professional, dealing with very ill people with a very serious disease and he is often their last hope at life…so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him.  I hope he felt our gratitude as well.

The “pick whose going to cut into your head” decision took a while.  I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at home.  I was not willing to start over after all that hard work and with as quickly as I was deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I could again get insurance without preexisting conditions clauses.  I was able to be referred to my first-choice of neurosurgeon’s and placed on Ketoconazole to help lower my cortisol while I waited.

I had pituitary surgery on February 5,2014 (I am writing this 4 months post-op).  They were able to find and remove the more obvious of tumors on my MRI, and explored the rest of my gland, finding no more tumor tissue.  My pathology report came back as “hyperplasia”, meaning I had a bunch of individual scattered cells that were a tad overgrown instead of a solid, encapsulated tumor.  This kind of tumor has a very low success rate, since the entire gland can be diseased, but it can be impossible to see and remove every one of the scattered cells.  We knew early on that it didn’t look like remission based on my symptoms and post-operative lab results.  I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed by my pituitary even if I wasn’t cured! lol) and then I could begin retesting for re-diagnosis.

In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, and with pathology report of “hyperplasia,” I am not a candidate for repeat pituitary surgery or radiation therapy.  We now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future…but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead.  It is a drastic surgery for a drastic disease, but it is my best chance at a lasting cure with the least amount of hormone replacement and further damage to my other organs.

During this same trip, I was able to attend the Magic Foundation’s adult convention just a few hours from my follow-up appointment.  What an amazing event.  I learned many things, but perhaps more important to me, I was able to meet other people who had my disease, who understood what I was going through, had been there themselves, etc.  They just knew!  I felt at home.  I consider it quite telling that they switched the schedule of the conference to part-days to accommodate our fatigue…  The trip was hard on me, but I am SO glad that I went.

In May I started testing in earnest for my re-diagnosis.  After intensive testing one week, and hit/miss testing the next (I was cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results.  Because of the severity and permanency of this next surgery, my endocrinologist has asked me to continue testing.  I will start testing again during my next high cortisol cycle in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process.  It’ll take a couple of weeks to get my lab results back (Oh, the agony!), and another couple of weeks to get my endocrinologist appointment and surgical referral if I do indeed have sufficient highs.  I’m *really* hoping he won’t want me to go on medication prior to surgery as I’d like to move forward towards a permanent cure and health!  Not to mention, my deductible is met for the year, so this year would REALLY be nice on my already broken budget.

With the new goal in sight, and some diagnostic testing that proves I’m still ill, we are hopeful.   I’m now nearly bedridden due to the physical exhaustion, but I’m starting to allow myself to plan for a near-future in which I am somewhat functional and active again.  I can’t wait!  Once again, it sounds silly to be so excited and wishful about having surgery to give me Addison’s disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery.  But, I’ve been sick for so long and becoming more and more debilitated and sick the longer this has gone on that I am excited at the prospect of any semblance of improvement, health and normalcy!  (Okay, within reason…I am well educated and using logic, etc on this, but…YAY!)  I can feel it is within my reach again.  I’m on the path and moving forward.

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Here is Magic’s video of me: 

And the picture I spoke of in my story is attached (Dr. Friedman did give me verbal permission in-person to share it online –facebook, etc.  I imagine he’d be fine with it published in an email?)

I will include a before/after onset collage of pictures as well.  Use whatever you like.

Catherine blogs at http://muskegfarm.blogspot.com

catherine2

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Diana B (Diana Brown), Undiagnosed Bio

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Hi, My name is Diana. I have been sick for over two years now.

I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.

I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.

I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.

Here are my symptoms:

Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)

Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test

Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery

Extreme fatigue/ as tired when I get up as when I go to bed.

Muscle weakness with any exertion, especially going up stairs and most days just walking across the room

Pallor

low grade fever on and off

blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently

Rising cholesterol over the last couple of years with no change in diet

Right flank pain

Low back pain

Burning pain in upper buttocks and upper back thighs

Stomach and groin pain

Extreme hip pain

Shaky and fine tremor in hands and sometimes my head also shakes

Mildly elevated cortisol (24hr urine cortisol test)

Have been diagnosed with osteopenia in the past

Hashimoto’s

I break out with clammy/flushing skin sometimes during the day but mostly at night.

Cannot tolerate carbohydrates (not for many years) /have many food intolerances

Easy bruising

So, that’s pretty much it. Thank you for letting me join!

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Donna (Dutchie), Pituitary Bio

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Hi.  I’m a patient of Dr. F and a member of the Cushing’s  Help and Support FB community.

I have a pituitary microadenoma and am still doing all kinds of testing to see if it is active.  I’ve gotten two clinically high indicative Cushing’s test results so far–midnight serum cortisol of 14 and 24 hour uring 17OHS of 11.5.

We are still testing.

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In Memory: Martha

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A Golden Oldie

StaceyH posted this on the boards:

I just wanted you good folks to know that my dear Martha and partner for 11 years passed away this evening. I’m not sure why I am posting this now, just one thing to check off my to do list and hoping that getting this in writing will help me.

Dr. F had wanted to give Martha an IPSS, but she had a problem with an EKG two weeks ago so the doctor would not release her for surgery. She went for a cardio strees test last week and was to get her results tomorrow. She was feeling “ok” but when I arrived home this evening, I found her in the bathroom. I tried to give her CPR but I really knew it was too late.

She was such a good woman, loved her horror movies and we loved to watch them together. She cared deeply for other people and would go out of her way to tell a stranger hello and learn their name. She was even known to give little old ladies that she didn’t know a ride home if they would let her.

I’m going to miss her so much. This was so unexpected, but deep in my heart – expected. Please, love your loved one like it’s your or their last breath. Push your doctors and advocate for yourselves.

Although Martha never used this forum, she told me she was grateful that all of you were here to answer our questions and accepted us with open arms.

In lieu of flowers that may be coming, I would like people to donate to this forum in memory of Martha. Do you know who to contact or who donations should be sent to via mail?

Please feel free to move this to the In Memory thread.

Thank you again you good folks….
Stacey

A tribute to Martha on Robin’s Blog.

Lee B, Ectopic (pituitary and lung tumor) Bio

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Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.

~~~

Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.

I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!

Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.

Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.

I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.

Jean (Jinxie) Cushing’s and Acromegaly Bio

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This bio was originally posted 1/26/2008

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

My Cushing’s and Acromegaly Odyssey

During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.

Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.

During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.

I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.

At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.

January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.

This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.

It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.

By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.

I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.

After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.

I am now 4 months post-op.

Click any thumbnail to view the larger image.

Before Cushing’s [Photographer: Jeanne’s family]

In the kitchen [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Joyce P, Cyclic Cushings

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I was a member here a couple of years ago and told I may have Cyclic Cushings.

I went 2 weeks ago today to LA to see Dr. F and he suppects Cushings and HGH defiency.  I have not started all of my testing yet as insurance has been a problem, but I am going to my Internist tomorrow and see how he will help me.

I will update as I can and apprciate any information.

Contact Joyce

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