Wrong diagnosis?

[kelley1013]

4 yrs ago i was diagnosed with graves disease and since i was about to move out of state and lose medical for a while my dr treated me in a hurry. After being assured that Graves disease was most likely what was wrong with me and having to sign a million wavers I was given a low dose of radioactive iodine and sent packing. Within 2 weeks of the treatment I was in the ER, I'm not sure what the level was but apparently I went from dangerously over active to crazy low. I saw the dr, a couple days later who looked at my reults like it was impossible and put me on 50mcg levothyroxine.
Over the last 3 1/2 yrs i have been having my blood tested every 6 mo and my dose raised and raised and I'm up to 200mcg now. The last 6 mo dr has been testing every month and my levels are totally inconsistant. it rises and falls between 21 and 37. Then a month ago I went in and was feeling worse than ever and no surprise I was at 46. She sent a referal to an edocrinologist and raised my Rx to 225mcg. I hadnt yet made it to town 10 days later (still taking 2000mcg) when I was feeling strange and went into the clinnic. My blood pressure and pulse were through the roof asnd I was completely out of it. I was rushed to the ER where they said my tsh was now 9. Ive been feeling great since then, loads of energy, lost 10lbs. Until yesterday when I woke up tired and muscles hurting as bad as the lowest I've been. I am waiting on test results from blood work taken today. My dr doesnt have a clue whats going on. The ER said my symptoms intitated a thyroid storm but said it was impossible since I was still underactive and accused me of doubling up on my meds.

Any thoughts on why my tsh would be rollercostering while on a steady dose?

[Lori575]

Have you been tested for Hashimoto's as well?  I Had Graves which went into remission and 15 years later I was told I was hypo, which happens in the later stages of Graves sometimes, however, I had many more issues and they did a ton of testing and found I had very high antibodies for Hashi's as well.  With Hashi's (and maybe even Graves too), since your immune system is attacking the thyroid, it will try to stay alive by spurting out extra hormones.  This can cause the fluctuations in levels sometimes as well.  Hope you feel better very soon!

[Smilerdeb]

Looks like you was overmedicated and they went by the TSH and not the FREE T3 and FREE T4 ...which in actual fact, determines the dose of thyroixine meds.
To have that happen to you...your FT3 wouldve been sky high which caused the storm.
As Redhead said...a Pit. tumour can make the TSH erratic (I had one removed a few weeks ago).
But I would seriously be re-evaluated on the TSH, FT3, FT4.
Dont let them dose by TSH alone.

[redheadaussie]

Have they bothered to check for a pituitary tumour? There are TSH secreting tumours that can stuff you right up!
Also you might have a pheochromocytoma. This is a tumour on your adrenal gland. Often missed by doctors intent on looking at the symptoms being from thyroid issues. High blood pressure, tiredness are two main symptoms of a pheo. This can change at any moment and go back up again, as adrenaline is surged through the body, giving high blood pressure.
I'd be getting them to look at those two issues.
Are you sure it was 2000mcgs? Or was that a typo?
Cheers