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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.

———————————————————————

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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Archived Interview with Kathy C, Pituitary Patient

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Kathy was diagnosed with a pituitary tumor in 1991.

At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.  She is now on Signifor and Cabergoline.

Read Kathy’s entire bio at https://cushingsbios.com/2014/04/27/interview-may-7-with-kathy-c-pituitary-patient/

Listen to Kathy’s Interview here.

Kathy’s Interview is also on the CushingsHelp Podcast

Interview May 7 with Kathy C, Pituitary Patient

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My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

Kathy will be interviewed May 7, 2014 in BlogTalkRadio

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Kathy C, Pituitary Bio

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My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

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Michelle (Michelle), Undiagnosed Bio

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Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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Andrea P, Steroid-Induced Cushing’s

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What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

andrea-fShe left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

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Miriam, Undiagnosed Bio

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golden-oldie

Hi. I am M and I have had healthy problems for as long as I can remember.

It started when I was 10 with severe anxiety, depression and panic attacks. Luckily, I don’t remember most of the details, but I remember being under the care of a child psychiatrist and a psychologist. I was on a cocktail of medications for about a year. As some point, my mother read a bunch about the dangers of these medications and somehow weaned me off of them. I remained under the care of my psychologist for a year or two after that.

I think we hoped at that point that things would go back to normal, or something like that, but sadly, we were very wrong. A couple of months (possibly a year) later, I was diagnosed with diabetes, shortly before my 12th birthday. This was 12 years ago, when type two diabetes wasn’t often (if at all) diagnosed in kids that age. It took the doctors a while to determine if I was type two or type one, but they eventually settled on type two. In reality, it barely made a difference, as I was on insulin and oral medication- in essence being treated for both types.

Again, I wish I could say that this was the end of my health problems, but it wasn’t. For starters, my insulin resistance was (and still is) so bad that I am on enormous doses of insulin just to maintain a non-dangerous blood sugar level. I have  been plagued by nasty skin (bacterial, yeast and abcess) infections since high school requiring hospitalization from time to time, and anti-biotics terribly frequently.

I was diagnosed with PCOS at some point, having all of the typical symptoms: facial har (I actually bought myself a hot wax pot to avoid the cost and nuisance of going to get it all removed every week or two!). My period has never been regular. I have gone as many as six months without it, but it can be more frequent also. Obviously, I am quite heavy and have struggled with weight my entire life. Dieting is a horrible situation, as it takes extreme effort for me just to maintain my weight.

About two years ago I had terrible gallstones attacks, finally having my gallbladder removed after a week in the hospital with a gallbladder infection. I also have problems with nausea and heartburn which can be very severe at times. About 10 months ago I was diagnosed with an ulcer.

At some point my endocrinologist (whom I see for the diabetes) asked about my family history at length, and then concluded that it simply didn’t all add up. I do have a family histoty of obesity and type two diabetes on both sides of my family, but nobody has ever had a problem before 45-50, other than gestational diabetes. My siblings are on the heavy side, but not obese like I am. I don’t eat differently than they do, I don’t live differently than they do. He ordered a 24 hour urine test, assuring me that he is sure it is nothing but he wants to be thorough. I pressed him for details and he admitted he is testing my cortisol levels as he suspects they may be high and causing some of my problems.

I left the doctor’s office and (against my better judgement!) googled cortisol levels. I stumbled upon cushings disease and lists of symptoms and it all just clicked. I started crying, half in fear but also half in relief. As scary as cushing sounds, I promise it can’t be worse than everything I have endured. The idea that we might be able to treat the root cause of all of my health problems sounded dreamy and amazing.

Then I got back the results of the 24 hour urine test, and it was on the high side, but still within the normal range. The doctor is completely unconcerned, but something in the back of my head can’t let this go so easily (especially reading here and on other sites about the inacuracy of that test in diagnosing cushings).

I am facing this alone, am not a good advocate for myself, and am overwhelmed already, so I let it go. But now I have a new symptom, and when googling it (again, bad idea) I came across cushings again. And now I just can’t let it go. A couple of months ago I started experiencing severe pain deep in my legs (it feels like it’s the bone) when I walk. At first, I ignored it and started to cut down my walking. Eventually it got so bad that a walk down the block brought me to tears from pain. I finally went to my GP, who sent me for an MRI of my lower back. It turns out that I have a herniated disc in my back, but the doctor explained that he doesn’t think that actually explains the matching pain in both legs, as it is only on my right side.

He checked my vitamin D level, and said it was so low it is undectable. He sent me to an orthopedist, but I am still waiting to see that doctor. I am at my wits end right now. I am not yet 24 years old, and my body is in shambles. I can’t walk a block without pain, and when I push myself to walk and stand on my feet the pain gets so bad that I have to spend a couple of days in bed recovering. My friends talk about doing all kinds of things like going on hikes or visiting the statue of liberty, and I make excuses because I know there’s no way I could physically do something like that.

Right now I am so torn. On the one hand, I have a family history of obesity and diabetes, and have been clinicly diagnosed with that. On the other hand, I read through the list of symptoms thinking “check, check, check…” I am quite large around the middle, but have super skinny wrists, ankles, fingers, etc. I don’t want to be diagnosed with cushings (or any other scary disease) but I can’t stop thinking that nobody’s luck is as bad as mine!

What do you think? Does it sound like I have cushings? If so, how should I proceed? Remeber, I am completely alone in this, I have limited resources and money, and I am timid and terrible at standing up for myself. I hope that someone here can help, because I have never felt so alone and desperate in my life.

Thank you in advance,

M

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Melissa F, Pituitary Bio

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Melissa F was interviewed on BlogTalk Radio November 3, 2010. She has had pituitary surgery. Archives are available on BlogTalk Radio and on iTunes podcasts.

From the Clutches of Cushing’s

A journey through Hell… with a happy ending
by Melissa Fine

The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.

This is my story…

First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…

In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.

In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.

That’s when I knew something was really wrong.

Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.

2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.

By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”

Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.

Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”

Not helpful.

So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.

It wasn’t.

I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.

Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.

Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.

At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.

Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what

Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”

The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”

Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)

Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.

This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.

Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.

Waiting, waiting, waiting…

Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.

In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.

This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.

Learned a new term: diabetes insipidus.

The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.

I’d love to end it with that perfect tagline, but…

Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.

After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.

It was at this point that I found the Cushing’s Help and Support boards and verified that I was not, in fact, insane.

One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.

Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.

I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.

I live.

—–#—–

If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.

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Elana, Adrenal Bio

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A Golden Oldie

The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with cushing syndrome in February as my cortisol levels were over 300.

A benign tumor was found on my right adrenal gland and it was removed May 3rd. I guess I thought everything would be fine after.  My left adrenal gland is still not producing any cortisol so I am on hydrocortisone.

I wake up everymorning with diarrhea and I am nauseas nearly all day.  I thought this would end after the surgery but now I am losing weight because I am not eating and my Endocrinologist says these symptoms are not due to the cushings and I should investigate further.

I don’t know where to turn?

 

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Robyn N (Robyn), Adrenal Bio

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A Golden Oldie

~~~

Hi!  My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.

My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own.  Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame)  My menstrual cycle had been like clockwork.  I had normal periods every 26 days.  I had had no problem getting pregnant and was the proud mother of a daughter and a son.  I had never had PMS or pain with my periods.

This all changed around 40.  My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding.  I was diagnosed with fibroid tumors.  Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.

I had a hysterectomy in July of 2007 (I was 45).  One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket).  I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement.  It was another 9 months before I recovered from that.  By that time my weight had steadily increased.  I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.

In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain.  In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.

In March of 2009, I had a mastectomy.  At that time, the plastic surgeon started my reconstruction by putting in a tissue expander.  I had poor healing and all the incisions opened so I had the expander removed.  Since then my weight has increased dramatically.  I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.

During this time my primary care physician just left her practice with no forwarding address.  I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist.  I saw her in Feb. 2010.  She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.

My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings.  She told me she thought my mother was right.  She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist.  She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test.  Both were indicative of Cushings.  The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan.  I had the scan and I had a tumor in my left adrenal gland.  I went swiftly down hill with symptoms.  The leg pain and fatigue became overwhelming.

By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications.  I had my left adrenal gland taken out on June 29th, 2010.  I am now recovering.  Dr. Rolband is very pleased with my progress in 2 weeks.  My blood pressure was 90/70 and took me off one medication.  I have lost 6.1 lbs. and the pain in my legs had gone away.  All very positive.  I started weaning from the prednisone and that has not been pleasant.  I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains.  I’m better than I was before the surgery but I’m ready to feel “normal” again.

Contact Robyn

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