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5133140 tn?1364528769
Central Hypothyroidism
Just wondering if anyone in here has Central Hypothyroidism?  I am a 32 year old female and I've been told I most likely have CH and need to have an MRI done, but have not done so yet.  I'm currently taking synthroid to help with symptoms.  Just wondering if their are others here with this disease and your experiences.
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657231 tn?1453836403
I have central hypo. Mine came about post-op pituitary surgery.

If you are going to have an MRI - make sure it is a good pituitary MRI - dynamic - and that the place has experience. Dynamic is not a machine but a technique. It means the contrast is given while you are still in the machine and the uptake is recorded - that way the smaller lesions have a better chance of showing up.

Basically, CH is treated the same way as any form, but you should have a good endo (mine is a neuro-endo, a pituitary doc which you should find if you have anything on your pit) to do testing on all your pit hormones if they find anything. From my experience, one set of testing is not enough, and you have to make sure the testing is done well - as in proper time, proper way (fasting usually) and handled by the tech properly - some tests are fussy (like ACTH and renin).

I actually had my thyroid removed before my pit surgery and had a hard time regulating it until after my pit surgery finally was the last piece - but it was the hormones from the tumor that was the factor messing up my regulation, not my pituitary exactly. Cortisol, for example, can suppress TSH.
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5133140 tn?1364528769
Wow, thank you for the information.  I will be sure to ask about the MRI being Dynamic.  

I am curious what your diagnosis was before surgery?

My first endocrinologist (he has since retired), I believe ran hormone tests in addition to thyroid panel and did not see anything that would indicate I have a tumor, just said I would need an MRI to be sure.  
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657231 tn?1453836403
I would get copies of those tests. One set of tests cannot rule a tumor in or out, and your MRI may be normal (even if you have a tumor, it can be tiny, or mis-read).

I have have a multitude of diagnosis' - most of them wrong... my pit tumor was found in 1992 but most docs told me to ignore it. I actually had two - both Cushing's and a prolactinoma.

My testing was all over the place - high. low and normal.
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5133140 tn?1364528769
I just went to my docor's office yesterday to sign a release to get a copy of all my labs since 2008.  Now that I'm understanding the illness better, I'm very interested in looking at my labs.

When did you have the surgery if you don't mind me asking?
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657231 tn?1453836403
Yes. I had both pituitary and adrenal surgery (as well as quite a few others).

I always advise to get copies of tests. I found out later when I gathered mine up that I had a lot of abnormal stuff but had been told I was either ok, or normal... and also found out my testing time was wrong etc. Sadly, pit patients have to know or we don't get diagnosed.
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5133140 tn?1364528769
Wow, you have been through a lot.

Right about having to know and educate yourself.  I have so many questions about tests that haven't been done yet for my next appointment.   I should get all my lab copies today, I can't wait to look over them.
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657231 tn?1453836403
Use the links in the health pages (over to the right) as a start. Just make sure you use reliable sources in your searching.
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5133140 tn?1364528769
Do you happen to know if the ACTH Stimulation test is approved or considered experimental?  I read that it is not done very often....so just curious if my insurance is going to cover it.
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657231 tn?1453836403
I don't think it is experimental. I don't think it is done often as the disease is just not a common one - but the test is a standard one for diagnosis. It should be covered.

I do know for my growth hormone stim test the insurance company gave me a lot of issues even though - egads - they won't give you the meds without the stim test then had the nerve to tell me the test was not necessary! I sent them some nasty letters and it took a year, but I got my $$$. A lot of that was coding errors on their part!
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5133140 tn?1364528769
I'm glad you got paid back.  I hate dealing with medical insurance issues.
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