Going To See My Endo Tomorrow!

[boymommy3]

I am so excited to go see my Endo tomorrow! When I first started seeing this one, we didn't discuss POTS because a cardiologist said that I didn't have it.

I have been so impressed with this new Endo with my thyroid issues so I am very hopeful for a good appointment with him tomorrow. I sure hope I am not disappointed!

I also finish with the King of Hearts tomorrow and I go back to the cardiologist next week.

Also, on another note, does anyone know why we can't post of these forums form a Kindle? I am more tech stupid than savvy!

[corina]

Really happy for you, hope s/he will come up with answers!

Can't help you with the Kindle question, I'll ask within our moderating team!

[boymommy3]

Well....I went to see my Endo today and it was encouraging and disappointing at the same time.

The disappointing part is that he isn't very familiar with POTS at all. I was soooo hoping he would be and that he could really help me sort through my thyroid/pituitary and POTS/dysautonomia issues. So that is a major bummer!

The good part is that he seems like a really do doc and he is super thorough. I believe he is really trying to get to the bottom of some of my issues. I have suffered from Hyperthyroidism for 15 years and have kind of been a mystery to my docs. After several years of dealing with it early on they finally discovered a hyper functioning nodule on my left lobe. I had surgery to remove it and my ENT said that would do the trick. He also said that it was unlikely that half a thyroid could sustain someone and it would eventually just go kaput and I'd need replacement thyroid hormone. Well....that has NEVER happened! I have continued to be hyper functioning much of the time and it has been a roller coaster ever since. This Endo I am seeing now is the first one who has really tried to figure me out. He is currently checking me for some very rare things since all the normal stuff keeps coming back fine and he is also trying to get to the bottom of wether it's my thyroid that is acting up or if it's actually my pituitary. Apparently this can be difficult.

My POTS symptoms came on two years ago after having very low potassium levels and what seemed to be thyroid issues. Now I am beginning to suspect that these dysautonomic issues may be stemming from what ever else wrong and that if we can discover that and cure it, then my POTS may go away!

That is at least my prayer and hope!!!!!

I will be off to the cardiologist next week to discuss the results of my King of Hearts that I just returned today and see what he has to say. I am beginning to think I have seen every "ologist" there is! I go to the doctor more than my parents!

[sue1234]

Glad you have a thorough endo!

Did they check your TSI levels for Graves?

When you say you are hyperthyroid, is it your TSH that's low or your FT4 is high, too?

I'm without a thyroid and on replacement. I've adjusted my levels for the first few years and then settled fine on a dose. For some odd reason this year my TSH keeps coming back really low. I don't feel hyper at all. My FT4 was just over range once, but upper normal the next, so not sure why my TSH shows up super low.

[boymommy3]

My TSH is low (in December it was essentially 0) but my FT3 and FT4 are really normal. I have gotten these kinds of lab results before. The last time they checked my TSI and did an Uptake, I didn't test positive for Graves. He is rechecking EVERYTHING right now. I thought I was going to need a blood transfusion after they got through drawing blood today!

My case is very confusing to me and any doctor I have ever seen.

Are you on synthetic thyroid? Are they checking your FT3 as well. If not they totally should.

Also, I am sure you know, but your TSH comes from your pituitary. In your case, since you have no thyroid at all and you aren't symptomatic then it seems to me that you could have a pituitary issue.

Don't take that to the bank or anything, I am not a medical professional, but it's worth asking your Endo about.

[issie]

How many are supplementing with T4 and T3? How do you feel without a thyroid? Are you extremly tired and did you gain weight? Did you ever feel that you balanced out again after the removal? Did things get worse, POTS wise? I have a thyroid biopsy in a few weeks ----again. We will see . . . .

Issie

[sue1234]

Let's see, Boymommy and Issie:

--- First, I'd like to say that I have had thyroid whacky issues years before POTS, and even after its removal(during POTS) and getting situated on meds, my POTS has been unchanged. I did not gain any weight after removal. I was only tired the first few weeks of getting my levels up to far. After that, I felt my usual "wired but tired" that I've felt for the last 15 years of my life!

--- I am on synthetic levothyroxine. I tried Armour many times, before thyroid removal and after, and I within a day or two get really hyper-feeling. I have never been able to tolerate it. I have also tried Cytomel(T3) alone, or in combination with my T4, and I again feel very hyper(shaky, HOT).

--- My FT3 is usually in the lower third of the range, never over midrange. For some reason I can't handle it any higher.

--- I am wondering about pituitary, also. My TSH is usually around 0.4 (0.3-2.0), and I feel my "best" around there. In the last 6 months or so, my TSH has been around 0.03 or so. Initially my FT4 was around 12.5ish (?-12.0), so I went slightly down on my meds. Then I still had a super low TSH, with the FT4 coming back in range.

Boymommy, please post back what you find out. I am kind of wondering about the same issues, and would love to know how your scenario plays out.

Issie, good luck on the biopsy.