Hi Shirley,

Thanks for the reply.

My dr wants to to stop the beta-blockers cold turkey. I did question him about that since I heard/read its best to tapper down, he said I didn't need to since my levels were so low and went off into a bunch of medical jargon.

You are correct when you say that TSI is not helpful with treatment (but helpful with remission - as explained below) that's why we are treating this with 2week intervals then watching freeT4's and as well as making sure freeT3's and TSH are following suit. Once the freeT4's are within ranges we will begin with maintenance dosing, watching my labs as well as symptoms.

Some of the readers out there might not know this part and this is where it gets a tad tricky. Euthyroid means normal thyroid function and does not mean Graves disease is in remission (The thyroid gland is the victim, not the cause). For Graves to be in remission, you must not have any (or very very little) TSI (thyroid stimulating immunoglobulin) which causes the production of the thyroid hormone. TSI is the direct cause of hyperthyroidism in Graves’ disease. TSI will continue to be elevated if there are still environmental triggers. This is why some research states its best to stay away from processed foods, cigarette smoke (and why cigarette smoke can increase likely hood for TED), etc and eat healthy. Stress is also included in this as we have read all the research lately about this.

So my suggestion to all the readers out there is get as much info as you can about TSI as I only condensed this last part. Its always best to keep asking questions, talk to your dr's, and be your own advocate.

So now we know a little bit about TSI which by reading what I just wrote, is why it is important for remission.

Ok, so this is my take on it all. I have read remission can occur any where from 18% - 80% in patients and I have an idea why that is. I don't think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it's magic all on it's own.

After saying all this, this is why I said:

Naisly
Once the antibodies are normal (TSI) will be the time to start to ween off of the atd's and head into remission and this can take any where from 1-2 years, if not longer.

So depending on how you live, your ‘environmental triggers’, Shirley is right in saying it can take years for your TSI levels to normalize this is why lifestyle changes are important for your immune system to heal, but if the case was your TSI was still high, many people do fine staying on a small maintenance dose for many many years. I know someone who has been doing so for 30+ years, and look at Kimberly here, she has been on it for 7 years?

So remember, just because your euthyroid, doesn't mean your ready for remission. You must be both euthyroid as well as no TSI.

Couple facts I'll throw in - You will always have Graves disease even if you remove your thyroid, by either surgery or RAI. TSI will raise dramatically after RAI and why the chances to get TED is higher, and slightly after surgery. Graves is an autoimmune disease and with any autoimmune disease your chances to have an other one is 2x as likely.

Anyways I'm sorry, I've probably confused you all even more, but the best advise I can give you all is to educate yourself!

~Naisly

Great email! You have reflected in what all of us (Graves' people on a panel) said. EDUCATE YOURSELF! It is complicated, but we really need to have a clue about all of this.
Thank you for your wonderful post. My EYES are so tired, so they need to go to bed now. Thus, a short note tonight. May you never get TED~!
Shirley

catstuart7
Naisley your plan sounds awesome How did you find this amazing doctor?

So sorry I missed your post - But there really isn't an easy answer. All I can say is, when I went into his office I had already planned ‘pretty’ much what I was looking for by educating myself beforehand. I learned a whole lot about TSI/TPO/TSH/Free's, remission, and dosage. I began to understand how the medication was reacting with my own body and the effects on previous labs.

And to be honest, I went in to see him for only a heart monitor, but I knew my heart issues where directly caused by Graves, so it was obvious to me that this would come up.

And Shirley,

Thank you! I do hope your eyes have improved.

~Naisly