Graves/Thyroid concerns..would appreciate input - Immune Disorders Message Board

adepo4u · 01-24-2008, 11:53 PM

Hi all, new to the site. Was diagnosed with Graves 3 years ago and have been "normal" range for about 18 months. I went through all the variations of Tapazole dosage from hyper to hypo back up again until we figured 10mg a day would work. That's where I've been for almost 2 years. My bilirubin total has been elevated for a long time (side effect of tapazole i am told), so last labs endo decreased me to 5 mg. Labs last week showed no change in bilirubin (4.2) and .2-1.2 being normal range, so he wants me off meds for 6 weeks to check remission status. He was to do RAI, I say no, since I have the TED/GED (not sure of proper name now) and that would mean high doses of Prednisone for months. My T-4 Free is 1.2 (middle normal) and TSH, 3rd Gen is 2.51 (middle normal), but I really feel lousy and have for months. I am tired and irritable, always feeling buzzy, achy and extremely emotional. My eyes are ugly, but stabile for now. I do get headaches a lot and just tired of being tired.
The worst is my concentration is awful. I have a high-concentration job, which I struggle to do now..and sleeping doesn't happen for me.

Does it sound like anyone else out there? I am so worried that when I do my next labs my bilirubin will still be high or I will be hyper again and he won't want me on tapazole. Are my only 2 options Tapazole or radiation? My endo isn't the friendliest of the bunch, not sure if i need a new one after all these years.

Just would like feedback, my husband think i just complain too much, i don't think anyone really understands unless you are also living it.
Thanks for the input, I appreciate it.

boatkitten · 01-31-2008, 09:04 AM

Graves disease itself causes bilirubin changes.

In fact, many things in our bodies change while we are affected by Graves (heart, skin, digestion, etc - the link below will give you all the details). These things may take a long time to normalize after getting our thyroid back under steady control. But while most of these go away after treatement, in some people, they will always remain abnormal.

Anytime our thyroid hormones are allowed to drift up or down out of range, these abnormal conditions can surface again.

One other thing you want to check is your Free T3 levels. Your TSH is actually on the high end (New ranges for TSH don't go above 3.0). The majority of people who "feel well" have a TSH between .6 and 2.0.

If your FT3 turns out to be low, that could be the reason you don't feel that great.

Take care!
Val