Has anyone diagnosed with Graves disease had a successful remission without surgery? If yes, how long did it take and how did you know you were back to normal? I am debating the surgery vs long term use of thryoid suppressants.
The main reason docs don't like to use thyroid suppressants long term is due to the possibility of side effects (liver problems and white blood cell problems). I think the occurance of side effects is rare, but must occur often enough to warrant the warnings given. And, I think that if you are going to achieve remission, it happens within a year to 18 months, and after that docs pretty much "throw in the towel" on trying them any longer.
I took Methimazole for nearly 15 months, but could never stop taking it completely - at the time of my TT, I was alternating 10 mg and 5 mg daily. I felt better for taking the Methimazole, but felt SO much better still after the thyroid was gone totally.
I think I read that 40-50% of those who take ATDs for 12-18 months can achieve remission of the hyperthyroidism, but I know the instances of the disease recurring down the road is pretty high as well.
I also have Graves. I was at a level of 18.5 when I was supposed to be under 4...Not quite sure wich chemical now that I have read other posts. Anyway I went on Methimazole 20mg for approx six months at wich time my level dropped under 5. My doctor slowly brought me down in mg over the next 4 to 5 months and within a year I was at the correct thyroid level. At this time we brought the dose down to 5mg. we took blood samples every 3 months and stayed at that dose for six months. We then continued dropping the dose over the next six months to where I was just taking a small piece of a pill. My thyroud level stayed at 3.9 for the entire last year. My doc then completely took me off the Methimazole. Now it is about a year and a half from when I quit taking the meds and over the last several weeks I started feeling pretty bad. I just started taking Propranalol again as my heart is atrial fibrulating now. My doctor is talking about killing the thyroid, but I still want to give the Methimazole another try or continue taking it. I will repost how we treat at this point, but I definanty think that it is worth taking Methimazole instead of surgery for now as it did work very well while I was taking it and I was taking so very little mg of it toward the end . After the first six months I was able to get back in the gym and start working out, but it did take several months for me to start regaining my strength and energy.
i AM IN REMISSION, BUT WONT DISCONTINUE MY MEDS. ft3 AND ft4 AND TSH ARE WHAT DOC HAVE LABS FOR, THIS IS INDEED HOW HOW WE ARE FEELING (HYPO OR HYPER OR JUST RIGHT) HOWEVER, WHAT MOST DOC DO NOT DO, NOR EVER HEARD OF, IS ANTIBODY TESTING, THESE 2 TEST NEED TO BE DONE ONCE A YEAR, TO COMPAIR, AND JUST BEFORE REMISSION... THEY ARE THE ACTUAL GRAVES MARKER AND THE POTENCY OF THE ANTIBODY.. EVEN IF WE FEEL GOOD... DONT STOP MEDS UNTIL THESE 2 TEST ARE NEGATIVE (FREE OF GRAVES)
TRab (or some states only do TBII)~ DO WE HAVE GRAVES?
TSI~HOW STRONG ARE THE ANTIBODIES CURRENTLY?
without getting these tests done, there is no way to determain if you are in remission!!!! 90%of doctors never heard of this.... Please feel free to join our Yahoo graves support group to learn this. Many of us are in remission, and some for over 10 years!!!! there are a lot of groups that are pro RAI and pro TT ~do not kill the victom (thyroid) kill the disease! I now teach local endo's this, and FINALLY some are listening
Ft3 Ft4 and TSH change often as the antibodys change... that does NOT TELL US IF WE ARE IN REMISSION, WHEN THESE NUMBERS ARE GOOD... i repeat only TRab (or TBII) and TSI
I was just today diagnosed with Graves Disease. My FT4 and T3 are both 2.1. My TSI is 535. My doctor wants to put me on Tapazole 10 mg per day. What is your yahoo support group? I'd love to join to learn more.
I was diagnosed with Grave's Disease in 2005 after the birth of my first child. I took 16 pills of PTU every day until after the birth of my third child in 2008. I stopped consuming anything with aspartame and slowly was able to decrease the amount of PTU until finally 8 months later I was completely off of any medication! I am still in remission...alomost 4 years later!!! I am convinced that it was aspartame that played a major role in having Grave's! I never had surgery or RAI.
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