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My Journey to Hormone Heck

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Old 07-13-2008, 08:59 PM   #1
Senior Member
Join Date: Jul 2008
Location: Hormone Hell
Posts: 201
T4T3hell HB UserT4T3hell HB User
My Journey to Hormone Heck

I was a member of this board several years ago and appreciated all the help that I received at that time.

In the subsequent years, my health continued to decline. Other people I knew suffered from thyroid disease seemed to be much healthier than me. They were able to work, go to school, and live life.

I continued to have odd symptoms including:
low TSH, low T3, low T4
intermittent high blood pressure,
crumbling teeth,
drooping eyelids,
swollen tongue
extreme joint and bone pain,
muscle weakness,
hearing loss,
intermittent vision loss,
cellulitis, plantar fascitis,
red/pink/white stretch marks across stomach and breasts
couldn't sleep enough
apathy, anxiety and depression.

I saw endocrinologists, ENT's, internal medicine doctors, family doctors, psychiatrists, therapists, and none could help me.

TSH, T3, T4 and sodium and potassium levels changed all the time.
When the doctors got my levels where they wanted them---I felt like I was dying. When I got my levels to where I liked them---the doctors would get mad and tell me that I was lying about how I felt---and wanted to be "hopped up" on thyroid meds so I could lose weight.

My stomach swelled by more than four inches overnight.
In two days, I gained 11 lbs.
In one month, I gained 40 lbs.

Six months later, I saw a mystery diagnosis show and realized that one of the patients featured had similar symptoms to mine.

I believed I had Cushings---or hypercortisolim.

My internist at the time agreed that I had symptoms of Cushings---but told me that it was a rare disease and that I most likely didn't have it, but she agreed to allow me one test: the dexamethasone test. It's used to check to see if your Hypothalamic Pituitary Adrenal (HPA) axis was working.
I "suppressed" and it was determined on that one test---that I did not have Cushings.

I continued to get sicker and and sicker. I couldn't walk to the mailbox---walking to the bathroom was hard enough---I was constantly running into things.

I eventually changed doctors---actually, like other doctors before her---my internist kicked me out of her office---insisting that my problems were psychiatric in nature. Psychiatrists insisted that I had endocrine problems.

After four visits to the ER with an extreme case of orbital cellulitis---a helpful ER doctor agreed that I had all the symptoms of Cushings and encouraged me to see a specialist out of state.

I checked around and found out that Oregon had a well respected Pituitary center---with specialists who knew how hard it was to dx pituitary disease, Cushings and other unusual neuroendocrine diseases.

After more than five days of non-stop testing, an MRI, and a consultation with the doctor, I was dx'd with Secondary Hypothyroidism. The solution: I needed more thyroid than I was getting. The specialist insisted that my local endocrinologist would treat me. I returned home and immediately saw my local endocrinologist.

Instead of agreeing with the tests and doctors, she insisted that I was lying about what the specialist in Oregon said---and when I showed her the report from the hospital, I was kicked out of her office.

This was the third doctor's office I had been kicked out of in four years.
My family started doubting me. I continued to get sicker and sicker.

I tried to contact my doctor in Oregon to report that my local endo had refused treatment they had recommended. I did not hear back from them.

After trying to get a local doctor to help me, I ended up going to Los Angeles---a 1,000 mile flight---that I could ill afford. In less than six months and $30,000 (thankfully insurance paid most of it), I was off to see if another doctor could help me.

On January 4, 2006, I saw the most amazing doctor. He listened to me, tested me---I had another MRI that showed that my tumor had compressed my pituitary, and ordered additional tests from what I had had in Oregon.

In less than a week, I finally got the information I needed to know. In addition to having secondary hypothyroidism, I also had growth hormone deficiency, and in less than a month, I was contacted by a pharmaceutical company that helped me get set up for that.

In the meantime, my L.A. doctor told me that my Hashimoto's had basically destroyed most of my thyroid, he increased my thyroid meds, he prescribed growth hormone replacement, estrogen replacement (patch---not oral estrogen which is a "no-no"), and more...

I immediately felt better. But I had some hard times. I could finally walk---but my legs felt like rubber. It took my insurance company more than 6 months to ok my growth hormone replacement. They did not know enough about the tests to know that they had been given all the information and tests results that my contract required.

About this time last year, I started on growth hormone---and I finally started to feel like myself for the first time in more than 10 years.

Suddenly, most of my symptoms disappeared. I still am being tested for Cushings, but I am able to do some things for the first time.

Sorry this is a long post. I found out that doctors are not familiar with pituitary disease. In fact, it was thought that pituitary disease was "rare"---along with a bunch of other things---but it isn't.

The hardest thing about my disease has been finding a doctor who knew what they were doing.

I started out thinking that my problem was simply thyroid problems---and it was---but it was more complicated. And as I read your posts, I see many of you experiencing similar problems.

I hope this helps. Like I said---I was a member of this board many years ago---and it helped me to keep digging for answers.

I hope you all find the help and the answers you need.

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Old 07-14-2008, 07:45 AM   #2
Join Date: Jun 2007
Location: NJ
Posts: 438
rumpled HB User
Re: My Journey to Hormone Heck

I had a similar journey... but I skipped the doc in Oregon. Went to the same one I bet in LA though...
Had the same issues at home and even now, they look at my pathology and prefer to believe the tests... weird.

Old 07-14-2008, 10:32 AM   #3
Senior Member
Join Date: Jul 2008
Location: Hormone Hell
Posts: 201
T4T3hell HB UserT4T3hell HB User
Re: My Journey to Hormone Heck

You get the "longest distance traveled" award!!!
Forums like this with people like you have been a life saver for me and my family.
I hope you are feeling better---it's miserable to be sick and have doctors tell you that your tests look normal.

Old 07-15-2008, 06:42 AM   #4
Join Date: Jun 2007
Location: NJ
Posts: 438
rumpled HB User
Re: My Journey to Hormone Heck

I waited too long... my body is in shambles. I should have traveled the 3000 miles years before but thought the docs in NYC could help me... nope.
Trying to help others not be in my boat. My tests are not normal anymore - after years of my ACTH being normal, the dang thing now decides to be high. *sigh*. Last one was 1917 (4-27).

Old 07-15-2008, 08:45 AM   #5
Junior Member
Join Date: Jan 2008
Location: America
Posts: 17
IhaveENDO HB User
Re: My Journey to Hormone Heck

You should find an endocrinologist that believes in treating the symptoms and NOT the numbers. Mine looked at my numbers, which appeared good, but I told him I was still experiencing all the symptoms of Hypothyroidism. Nothing had gotten better after 8 months of my GP treating me with low dose hormone. He ran antibody tests, which Gp NEVER did, and they came back high. I ended up having Autoimmune thyroid disease - and he said we needed to double the dose! Within a very short amount of time I was beginning to feel like my old self again! He said with hormone disorders you should treat symptoms before treating numbers. I'm inclined to believe that now. Good luck.

Old 07-15-2008, 08:28 PM   #6
Senior Member
Join Date: Jul 2008
Location: Hormone Hell
Posts: 201
T4T3hell HB UserT4T3hell HB User
Re: My Journey to Hormone Heck

Rumpled---it was a gal from NYC who told me about the doctor I ended up going to. He is in L.A. I remember being amazed that she couldn't find a decent doctor in New York!!! I could understand not being able to find a good doctor locally---after I'd seen just about all of them!!!

Ihavendo---Thanks for the advice---you are absolutely right!!! I spent way too much time and money listening to doctors who were more interested in their numbers than my health.

Thanks again!

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