Dxd Hypothyroidism, but low TSH, low T4, high cortisol

[Tig114]

I originally had low TSH, low free T4, and now high cortisol. They checked me for cushing's (haven't gotten the results back yet) and when I say originally- I mean that is what it was before I was put on levothyroxine for hypothyroidism in 2006. I was sleeping over 15 hours a night and was so fatigued, I couldn't do anything! Now TSH and T4 are in normal ranges. I feel better than I did, but I am still having headaches, memory loss, and other issues. I am also insulin-resistant and have orthostatic hypotension. I was wondering what are good tests for pituitary tumors/adenomas (or anything related) and if anyone has experienced this before. I get the feeling that levothyroxine and metformin are NOT what I need to be on.

[rumpled]

You still need more testing!

BTW, a lot of pit patients end up knowing more than 90% of the docs... some of friends know more than 99%!

[Tig114]

sweet, I feel like this is never ending- although that could be due to the fact that I have to stay up most of the night for an EEG. The neuro is doing EEG and an MRI, which I want anyways. I figure I would like worse case scenario ruled out first. You think those tests would show a pituitary problem, or should I still check on the testing?

I thought I had renin tested. . .can't find it on my computer, I'll look for it later. My thyroid anitbodies- none, Total T3- normal

I think after all of this I should just become an endo. . .I think I could make some good money at this after all the drs I'm going to go through, haha.

[rumpled]

First high cortisol, now normal low - sounds like me - and I had cyclical/episodic Cushing's disease. I also had to doc shop to get help as do most as they have no clue. A neuro does not know how to treat Cushing's- you need a neuro-endo. The cortisol could be causing the POTS - the renin/aldosterone axis is screwed up - has either of those hormones been tested?

POTS is either not treated (you have to learn behavioral things to adjust) or you are given things like florinef to raise the BP - it can vary. Too much water can flush out the electrolytes and that can be bad.

You need a Cushing's specialist probably - or at least some endo that can look at the whole pic - I have been there - they first told me all my issues were thyroid, then were not (LOL), and it was the blame game all around until it finally came around that it was all my pituitary. And I did have the thyroid, pcos and all the other crud too.

[Tig114]

Hmm, interesting. That has a familiar ring to it. Are there things you can do for dizziness? When they dxd me with orthostatic hypotension- they told me I was dehydrated and had me drinking each day a minimum of 10 bottles of water 32 fl. oz. each. I was drinking 12-13, because I thought it was funny and I was trying to prove a point. I was curious, though, what do you do for that or POTS?

Just to update- I did the urine cortisol test and came back low, but in normal range- like 11- that seems extremely odd to me. However, the endo still did not seem concerned and said if the labs are fine, my thyroid couldn't possibly be causing memory issues and sent me to the neuro that I will see on tuesday. I also talked to my dad- he said I go through doctors like tissue paper, so I think I might being getting a knack for this. Haha

[rumpled]

It is postural orthostatic tachycardia syndrome. It is an autonomic issue.
It means your body does not react right when you stand and  your BP lowers instead of raises when you stand - hence you get dizzy.

[Tig114]

What is POTS?

[rumpled]

Ah - they saw one thing, treated it and you did not get better!? Sheez, that never happens. Much.

Ok. I say that because that happened to me. First I got thyroid pills. Then I got metformin (I hated it, or rather it hated me) and I never got better - but finally I got diagnosed with Cushing's.

Good tests are to get to a good doctor - as a neuro-endo, who will run the battery of pituitary, thyroid, androgens, vitamins, minerals etc, and see what is going on - which is testing blood, urine and saliva. Cortisol will effect a lot of things - hence the blood pressure issues. Some will have high blood pressure, some do not - I never got it - I stayed low. Abnormally so. I also have POTS. A few of us do.