[Bobbi]

#1062719

None of us here are going to be able to explain your doctor’s reasoning — that needs to be done by the doctor. And, more importantly, none of us here is qualified to contradict your doctor if, indeed, your doctor does have medically sound reasons for suggesting that you remove your thyroid. We’re just patients like you.

If you are frustrated with your doctor’s advice, it might help to seek out a different doctor and get a second medically sound opinion.

Wishing you a good day.

[shimself]

#1018104

I’ve had graves for 3-1/2years with Thyroid Eye Disease inc diplopia

The disease is no longer active (or hardly- there is still a low level of TRAB).

My doctors wanted me to have my thyroid glands removed totally. They cannot show me that this has any advantage over staying on a block/replace regime. My TSH and FT4 have always been within the required ranges for the last 3 years. Why shouldn’t I stay on block (40mg/day carbimazole) and replace (100ug/day Levothyroxine) forever?

(I’m in France so cost isn’t driving my treatment choices.)

Thanks

[shimself]

#1062720

Bobbi wrote:None of us here are going to be able to explain your doctor’s reasoning (for thyroidectomy) — that needs to be done by the doctor. ……

It was just what they generally do, not in any formal way "evidence based". I’ve said no and they’ve said OK.

I’ve done quite a lot of research, and what I’ve found is that it’s generally said that methimazole is a time limited treatment for a couple of years only, but I’ve not found an explanation why. All I have found is that if there are problems they are most likely to show up in the first few weeks of use. So, to put it another way, does anyone know why one shouldn’t stay on methimazole block/replace for ever?

Thanks

[Ewenme]

#1062721

I have been on Methimazole for what would have been a year in March (diagnosed March of 2010). Since my last labs were approaching normal, my doctor told me to discontinue it. This also happened last August–I was going hypo, and my doctor said to discontinue it, which I did; only to go hyper again in another month, at which time I started it again. I don’t know of any reason you cannot stay on ATD’s indefinitely as long as you tolerate it well, and are monitored for any adverse side effects. In fact, in Europe they do not do RAI at all. The only choice besides ATD’s is surgery. Since you are residing there, I suppose I’m not telling you anything you don’t know. I have decided that if/when I go hyper again (I’m pretty sure I will ) I will do something more permanent, like RAI, since it is my opinion that it is easier to regulate thyroid hormone levels after RAI/thyroidectomy than it is to try to control a rebellious thyroid with ATD’s ” title=”Wink” /> Just my opinion. Hope that helps.

[Kimberly]

#1062722

Hello – Block & Replace is not commonly done in the U.S.; I believe this is because of concerns over potential side effects from using large doses of anti-thyroid drugs.

There is one study that I am aware of (Azizi, et. al. – 2005) that looked at methimazole usage over a 10-year period and did not identify any serious problems. However, the average dose was in the range of 2.5 – 10 mg/day, which is quite a bit less that what you are dealing with.

I’m not familiar with the healthcare system in France, but do you have the option of seeking a second opinion as Bobbi suggested? Ultimately, *all* of our treatment options have pros and cons, so you definitely want to make a decision that you are comfortable with.

[RebeccaJT]

#1062723

Hi

I am in England (so I’m in Europe ” title=”Smile” /> ) and I can vouch for the fact that we definitely do do RAI here (can’t say for France but definitely in England). I am on Carbimazole only although I have discussed block and replace with my doctor. He said that block and replace was not a long term option because of the high quantities of drugs involved, but that carbimazole only (ideally a maintenance dose of 5mg per day) could be used for ten or twenty years with no problems provided that the patient tolerated it well and was monitored regularly.

I also have eye disease (TED) and I am seen by an eye surgeon – the eye surgeon if very keen for total thyroidectomy, my endocrinologist is not! I think sometimes its just the different perspectives of different kinds of doctors – surgeons typically are going to see surgery as the solution, and doctors are perhaps going to look at other options.

I am not giving you any advice here, as said earlier, I am just another patient. However in my case my endocrinologist told me that surgery should be a last resort as it is an irreversible procedure and in his opinion, because of my case history, he felt that I would be one of the few people that did not tolerate surgery well, and would not feel 100% restored to health on synthetic thyroxine. This is not the case for everyone, just in my particular case. RAI has also been ruled out in my case as I have TED and the risk to my eyes is, in both my doctors’ opinions, too great.

Therefore, despite having some doubts along the way, I have decided to go with carbimazole only for as long as it keeps me in normal ranges and functioning normally. Also my doctor said I have a 45-50% chance of remission. 1:2 are pretty good odds for me at the moment, and I’m willing to give remission a shot before looking at more aggressive treatment options. However, I have had moments where I have thought I couldn’t stand another day feeling as ill as I did and surgery looked very tempting!! I’m happy to say that I feel a bit better and am feeling more determined to tough it out on drugs.

I’m not sure that helps you but just thought I would share my experience.

Best of luck

Rebecca

[Author]

Posts