central hypothyroidism treatment

I have central hypothyroidism, originally diagnosed by an endocrinologist.  After doing a lot of blood work, she looked at my test results and told me she had never seen this before  she did a stim test which I failed and said I had secondary adrenal insufficiency----at some point in time she put central hypothyroidism on my chart.-she was very unorganized and I went to a second endo who pulled me off everything--did a stim test not at all according to the protocol--and refused to test anything else.

I eventually went to a holistic MD who specialized in balancing the endocrine system, he put me back on hydrocortisone and on NP thyroid, DHEA, progesterone and testosterone--plus multiple supplements to raise vitamin and mineral levels up to a range he felt was better for my health.

My internis, who is treating me for eosinophilic esophagitis, immediately recognized what my diagnosis was when I told him My TSH was low along with my Free T4 as well as DHEA and testosterone.  I need to see a new endocrinologist but am concerned about getting proper treatment for my condition, as I understand when properly treated my TSH should be very low. Can you suggest how I make sure I am tested properly and treated properly?

[Gibbon1]

Did you get an MRI of your pituitary?  
Test for growth hormone?

[kevieb]

I had an MRI with contrasts that showed no pituitary disease---she told me that sometimes some cells just quit working.  About a year later, I remember when she was doing an ultrasound to check my thyroid nodules, she was taking another look at my MRI pictures because she said that the guy who was reading them at the time my MRI was done was not catching some tumors---but she didn't see anything herself, either.

I have been tested for growth hormone more than once.  First endo said it was within "lab ranges",  the most recent doctor I saw felt it was low (he didn't go by lab ranges,he went by ranges he felt were more fitting for optimal health).  I was low in so many other things and he felt that my growth hormone would come up when my endocrine system was balanced.

[Gibbon1]

Seems to me that if you have a pituitary that isn't working very well, that your shouldn't base treatment on TSH, instead the doctor should look at your primary hormones and your symptoms.

If you're taking thyroid meds, meaning T4, then the doctor should look at your T4. Testosterone, then your total testosterone. My personal experience with the latter is enough that you relieve symptoms, but your muscle mass isn't rising inappropriately.  Maybe tricky if you have multiple things that are low, since your symptoms could be from any one of them being off.

[kevieb]

The most recent doctor i saw did not base treatment on TSH--he treated according to symptoms.  My last TSH was less than 0.01, and he felt that was where it should be if I was on a good dose of natural thyroid.

My original testing done by an endo, a little over 4 years ago, showed low normal FT4, even lower normal FT3, (first time anyone had ever tested FT3) and I think my TSH was low normal, also.

with more testing, my DHEA was low, testosterone was low--total, free and bioavailable, My estrogen was through the roof--over 1100, and my SHBG was high---My endo said she had never seen this before.    She tested cortisol and ACTH and both were almost bottoming out in the range----so she ordered a stim test which I failed--ok sorry for the repeat of info.

When I saw a second endo, he asked if I had ever had any steroid shots---I had had a shot in each heel 19 days before the stim test---so he assumed that was the cause of my adrenals shutting down---he must not have seen that bot ACTH and cortisol tested very low BEFORE the stim test--he had all my records.

He dropped me from 30 mgs of HC to 20 that day--my arthritis and atopic dermatitis really flared--don't know why he dropped my dose.  When I called about 6 months later for an aappt. they told me I had missed my first follow up---they never made me a follow up---my daughter had been with me and said we left there without an appt.

After their so-called stim test, they refused to test anything else---because they said they had dealt with my presenting symptom????  I didn't come in with one particular presenting symptom---i came in with multiple endocrine issues.  I complained to the people over them and didn't have to pay for any of my bill--too bad I had payed my co-pay the day i went in.  I know they were going to have a review to see if he had treated me appropriatly----they also said the doc would call me, I asked when I could expect a call---and they told me he was a busy man.

After my newest doc tested me and told me everything that was low according to what he felt levels should be for optimal health, I realized that a number of the things that were low could all cause the same symptoms.

The only thing that I have gotten into the right range is my VIT D--and my bones don't hurt like they used to.  everything else is still low----my thyroid tested a little high for FT3 and he wanted me to drop it down 1/2 grain---but I had just gotten to feeling like I was getting a little better sence of well being---may have been a fluke.

Since my doc is ill, I have to try and find an endo that knows what to test and what levels things should be at-----and knows that central hypothyroidism should have a very low TSH when treated properly.

[Gibbon1]

>My estrogen was through the roof--over 1100, and my SHBG was high---My endo said she had never seen this before.  

Excuse me, WAT?  

In men estrogen should be below 60. And  And only pregnant women should be that high.  I'd have that retested.  If it's still high that could be your problem.

[kevieb]

Guess my screen name is a bit confusing---I'm female.  it was way high fo a woman--but it was retested and was much lower--my obgyn thought it must have been a spike from ovulating, although he did admit he had only seen levels that high a few times.

My levels are still too high, though, and my testosterone and progesterone were too low as of my last blood work.

[Gibbon1]

Okay lol. I'd still worry if your estrogen was consistently high.  I'd be looking for a doctor willing to take a step back and look at the big picture without being boxed in by another doctors previous diagnosis.