Graves Disease - latest results

[Valarian]

Haven't got the full set, because the endo didn't have access to a printer in the clinic (but can collect from GP):

After 5 weeks of 2x 40mg/day Carbimazole:

TSH < 0.01

FT4 - 18.7 (9-19.1)

FT3 - 7.9 (2.6-5.7)

TRAb +ve

So FT4 has come down a lot, and is now just within range, FT3 is still over range. The wasn't expecting TSH to have changed at this point, by he did think the FT3 might have come down a bit more .

I began to feel better within a week - so much more energy, and the muscle weakness had gone (beyond being generally unfit after doing very little exercise for several months !), so the results weren't a surprise . I no longer feel hot, hungry and thirsty all the time. I had begun to wonder if I would ever feel well again, and it was quite stunning how quickly I did !

I have had hives on my feet and lower legs a few times, mostly when I've been on my feet all day. They usually go within a couple of days (I'm taking antihistamines for hay fever anyway) . The endo was a bit puzzled by this - if it were a reaction to the drug , he'd have expected it to be there all the time, unless I stopped taking the tablets . Has anyone else had a reaction of this sort ?

The plan is for me to remain on the same dose of Carbimazole for the next three months (with monthly blood tests) . If all goes well they expect to begin titrating the dose down (without thyroid replacement) in three months time, although I will remain on Carbimazole forr at least 12 months. The endo has warned me that even if my thyroid does start behaving itself, there is a 50% chance of recurrence, and that if that happens, he would suggest looking at RAI - I'll cross that bridge if I need to (Has anyone here been taking anti-thyroids for the long term - i.e. beyond 18 months ?)

I've also been taking amlodopine for high blood pressure , which was diagnosed at the same time as the thyroid problem This resolved the breathlessness and tremor before I started the Carbimazole, although my heart rate is still a little high.

The only downside so far is that my weight has begun to creep up I'm conscious that I've been able to eat pretty much what I want without any consequences over the past few months, so need to get my appetite under control pronto !

[Clutter]

Valarian,

There's no need to rush to RAI ablatement or surgery if remission fails. Patients can stay on carbimazole for years. Any adverse reactions are likely to happen during the first 90 days of taking Carbimazole.

[Valarian in reply to Clutter]

Thanks Clutter.

As I'm still hoping for a decent period of remission, I didn't pick that up with the endo, but that was my thought too.

It's a large teaching hospital and they seem to have quite a bit of research going on. So I'm hoping they'll be willing to listen if necessary. I think one of their reservations is that lots of people just don't stick to their regime - I mentioned that I'd missed a couple of doses at the beginning, when I still had a lot of 'thyroid fog', and he just laughed and said not to worry - he has some patients who stop taking the tablets as soon as they begin to feel better !

[Clutter in reply to Valarian]

Valarian,

I don't know why there is such a hurry to render hyperthyroid patients permanently hypothyroid when remission fails. If you refuse RAI or thyroidectomy they can't insist and will have to continue anti-thyroid therapy so don't worry about it now.

[Fruitandnutcase in reply to Clutter]

They're in a hurry because once your thyroid has gone you are shipped out to your own GP and are no longer their patient to worry about.

Mine was a large teaching hospital too and there was talk of RAI should I relapse almost from the start, I was treated with block and replace and felt pretty well on it once I was at the right levels.

After I was discharged I began to worry about it all and stress is something I want to avoid so I made an appointment to see my GP and asked if I had to have rai and if I refused it could they either insist or refuse to treat me and the answer to both questions was no.

If you do lots of reading and even just ask around you will find that quite a lot of people have stayed on anti thyroid drugs for long periods at a time.

I think the little book Understanding your Thyroid by Dr Toft talks about it and I think Louise at Thyroid UK might have an article by Dt Toft that was published in Pulse so it might be worth getting a hold of that. Go online and research it and get a hold of as much evidence as you can to support your case.

[Qwerty12345]

Hi. Glad you are feeling better. Like you, I felt miles better very quickly after starting treatment for graves. I developed hives after around 6 weeks on carbimazole. They weren't sure if it was a reaction to the drug or not but I was switched to the second choice drug which is ptu, just in case. I was on treatment for just over a year. So far so good in the almost two years since!

[Valarian]

Glad to hear that Qwerty, hopefully that will encourage people who've only just been diagnosed.