[GracieGrey20]

#1060742

Hi,
I was originally diagnosed with very mild Graves in 2012 – no meds, just a wait and see and use of Propanalol for my racing heart. I had a scan and it was only 32% uptake and labs were just over the high normal with a TSH of 0.05. I went into remission on my own and have been feeling pretty good for a few years. Two weeks ago, starting feeling horrible, went to endo, had labs and results were Graves again! This time worse than the first:
TSH 0.01 (range 0.34-5.00)
T3 426 (range 80-200)
FT4 4.7 (range 0.9 – 1.9)
My doc started me on Methimazole 10 mg. 1x a day in the morning. After 6 days on this dose, she just upped me to 10 mg. 2 x a day b/c I’m still feeling crummy. I’m really scared because first, I don’t know why I relapsed so hard (no really intense stress or anything like the first time – although it is bad allergy season right now so maybe that?), and I’m terrified of the side effects of Methimazole. I guess I just feel alone right now and am looking for a bit of support. I go back next week for 1st set of re-check of labs plus all the liver, blood cell stuff too. Thanks so much – I’m glad I found this site!

[Liz1967]

#1184455

I was only on methimazole for about six months, after which I had a thyroidectomy, but lots of people on this board are so you should be getting good advice from them soon. It is not uncommon to go out of remission. You should feel better once they get your dose adjusted and things get under control. You are not alone on relapsing. I think only about fifty percent of people achieve remission at all and lots of those relapse. Hope you feel better soon.

[GracieGrey20]

#1184456

Thank you for your response Liz. I actually am feeling slightly better today on the 20 mg. dose, so feeling a bit more optimistic about the Methimazole…when I first went into remission, my friend wanted to get me a t-shirt that said “I beat Graves” and I said, you never “beat” Graves but it can go into its cave for a while and sleep
You said you had a thyroidectomy after 6 months of methimazole – was that because it didn’t work or stopped working for you?
Thanks again for responding.

[Liz1967]

#1184457

While my numbers were usually within range on methimazole, I chose total thyroidectomy for several reasons, including the toxicity of the drug itself, the low chance of remission in people also having the eye disease, the better chance of burning out of the eye disease after thyroidectomy, and the ups and downs and frequent labs on antithyroid meds, in addition to the slightly higher risk of thyroid cancer for Graves patients. I felt back to normal within a few months of thyroidectomy, Synthroid is easy to dose, my labs remain normal and I pretty much forget I have Graves, except for the eye disease reconstructive surgeries! With no thyroid, the antithyroid antibodies have nothing really to attack, since my eye disease has burned out, and no mechanism by which to make me feel bad, they dont attack Synthroid! This was just my choice, I was done with feeling off and having Graves affect my life so much. It did halt the progression of the eye disease too. Lots of people remain on antthyroid drugs for years and years, some go into temporary or permanent remssion, and some choose radioactive iodine. Explore your options. It is nice there are options at least.

[Ellen_B]

#1184458

Hello,
I have known and talked to many Graves’ patients over the years. It seems that every one’s Graves’ experience is different. I have heard doctors say that Graves’ goes through active periods or flares. After a flare is done the thyroid quiets down.The length of time of the flares varies from individual to individual. My understanding is that the antithyroid medication does not stop the antibody attack. The antibody levels rise and fall on their own. The reason for taking the antithyroid drug then, is to allow individuals to ride out the flare by keeping their thyroid hormone levels where they belong. The best thing I like about the term flare—is that it can be temporary. Finding out from others how temporary is a temporary is helpful. Listening to others who have successfully ridden out a flare is very hopeful. It is possible to find that out by doing what you are doing– reaching out to others who walked the journey and amazingly enough more than just survived—even done well.

[GracieGrey20]

#1184459

Hi, thanks for the words of encouragement! I remember the last time (2012) and never thought I would feel good again and I DID, so I’m hoping this will be the same. I really like the idea of it being a “flare” and just having to ride it out until it burns itself out. The one thing that brings me down is the wackiness of my lab results this time vs. last – I definitely feel worse this time, but yesterday I was up and about for a while and up and down stairs which I could not do only 10 days ago so Yea!! Still feel crummy but a less crummy than 10 days ago. Today is day 11 on the Methimazole and I go Thursday for my two week check and make sure it’s working and not doing anything bad to me. The feeling of isolation and aloneness in Graves is intense so having this forum to know I’m NOT alone is super helpful. I’m also finding meditation tapes very helpful too. I don’t think others know the extent of the fatigue, etc. “Take a nap and we can go out”. I wish a nap worked. Anyway, thanks all for listening and responding.

[Author]

Posts