If you choose RAI or surgery, you WILL need to take levothyroxine to some degree for the rest of your life. It is inevitable.
As for the Tapazol, I am not sure what to tell you. There was a member posting the other day saying RAI was barbaric and that in Europe and Japan, patients are normally treated with Tapazole long term, for decades, and surgery or RAI is only a last ditch effort if drugs fail.
The product sheet for Tapazole provided by the manufacturer suggests liver problems can develop. Most Endos will tell you you cannot be on the drug longer than eighteen months to two years without risking damage to your liver.
If you google Methimazole Liver Damage, you will find lots of info indicating that if you have liver problems, you should not take it. It looks like there is a 2% chance of liver failure in cats, and other studies that indicate it reverses liver damage in rats.
So...I don't know. I did find one link that supported the information that the member I mentioned above was giving in regard to treatment in the Orient as compared to treatment in the West.
I ran across a couple of case studies (on humans) that described liver faiure and it sounded quite rare, but there was also talk of platelet changes in the blood (agranulocytosis) as another rare side effect.
Nowhere did I read that there is a set number of years you can take it. Two Endos I saw both said it was short term therapy.
Seems to be conflicting opinions on the matter. The more I probe the subject the more it looks like your doctors are right, as long as your liver is in good shape.
I sincerely thank you two for spending time to reply as I m getting extremely frustrated w/my thyroid.
None of my family members have thyroid so I couldnt' ask for their advice.
My family doc referr me to a Specilist in ophthalmic plastic surgery, he is not helping a lot as I went to visit him twice, all I did was to check and see if i have double vision and he roughly check to see if the inflamation is getting worse, and of course there can't be any mearsurment for inflamation so I don't find that very helpful, the only information I got from him is that, if my eye keeps bluging to a point where my eye lid couldn't close, they will have to take a tissue inside my mouth and paste it to my lower eye lid so that my eye lid can close entirely, the eye is really bothering as I got tired very easliy because of the dryness (I will start trying flaxseed oil)
In re to surgery, I was considering surgery but I heard that there is a high chance I will become a hypo which really doesnt solve the problem, it seems like there is no safe solution and all the treatment has certain level of risk, and the worse thing is, all the treatments don't provide an absolute solution and it has to depends on how my body reacts, so my next question is, since my thyroid specialist and fam doc have been telling me that they have patients on tapazole from 3-5 years and they never recommand me a new treatment, is it normal to be on tapazole for that long period of time?
I have TED and learn way more about it from AR-10 than any of my doctors. The information above is really helpful, especially the hot phases which explains why sometimes my eyes are better/worse. Thanks AR!
Kinson- I am struggling with the same decision, surgery or RAI. I have been medicated for almost 1 1/2 years, but will probably make a decision and opt for surgery if it hasn't self corrected. Do you have a family history? My mom never self corrected so she had RAI but my grandmother's thyroid stopped over porducing and she was medication free after that. So I am trying to wait the full two years before making a call. But my eyes are better when I am euthyroid....and most people on the forum says it takes the eyes a full 2-3 years to get better although my eye doctor says they will never change. But screw him I am an optimist. Try flaxseed oil, it helps the eyes lubricate themselves and I don't live without it.
Tapazole is hard on the liver, so you really don't want to take it the rest of your life.
RAI is likely to make your bulging eye problem worse.
Surgery seems like it would be your best option, but it is certainly not risk free, especially when you are hyperthyroid.
It's a very difficult decision to make. None of the options are good. You will need to gather as much information as you can and weigh the risks.
To me, the most atractive choice would be surgery, but there are several risks involved, and taken to the extreme, there is the risk of death. That makes it hard to call it the best choice.
Thyroid Eye Disease (TED) is caused by antibodies related to your Grave's Disease. There is very little the doctors can do about TED except repair the damage after it occurs. There are special lubricating eye drops that will help aleviate symptoms, and Prednisone is sometimes used to reduce inflamation.
TED has "hot phases", and during a hot phase the tissue behind the eyeballs swells and fatty deposits are introduced. When the swelling subsides, there is more tissue there than there was before. There is no way to predict when a hot phase will occur, how long it will last, or how many times it will occur.
Repairing the damage is called orbital decompression, and it involves surgery.
If you are in a hot phase, RAI may not worsen the condition. I don't know. If you are not in a hot phase, Prednisone may prevent a hot phase from occurring during RAI, but it is not always effective.
Your doctor should have sent you to an eye specialist at the first sign of TED. Not any eye doctor, but a specialist that understands TED and can track the disease by taking measurements. You should see an eye specialist while you are mulling over your options.
Some of the above may be inacurate. I am not sure exactly how the tissue behind the eyes is damaged, and fatty deposits may be incorrect. I'm relying on memory, which for me is dangerous, and I have not experienced TED personally. Someone who has been through it would be able to give you better information.