Grave's disease relapse

[xxl02]

Hi there,

I have had Grave's disease for over 10 years now. I could not bring myself to have it removed, therefore on and of meds (carbimazol low doses). Now I got a checkup from my doctor again and she advised me to start 5mg carbimazol again. I looked at the Data and it is following

T3: 5,8 (lab 3.1-6.8) normal

T4: 21,8 (lab 12-22) normal

TRAK 2,81 (0-1,75) elevated

TSH 0,067 (0,3-2,5) too low

Well seems I am back in with it. Usually I went well with the carbimazol and could reduce it quickly to 2.5mg and finally I was only taking crumbs, like homoeopathic doses. Grave's disease has never affected me severly, some people seem struck with it. Thank you for your opinions.

[Clutter]

XXI02,

There's no reason why you shouldn't take Carbimazole for years if you need to. Any intolerance will usually show in the first 90 days of taking it. ncbi.nlm.nih.gov/pubmed/286...

[kaz86]

You and I seem very similar with our Graves Disease journey. I've had Graves' disease nearly 8 years now. I've had 4 short periods of remission ranging from 4 weeks to 7 months. I take Carbimazole and like you titrate to the smallest dose possible, which in my case is 0.625mg every third day when nearing remission.

I've refused RAI and surgery, which didn't go down very well with the three Endos I have seen over the years. For the last 4 years I've been under the care of my GP. As Clutter has said there is no reason why we shouldn't take Carbimazole for years.

It might be an idea to have your thyroid levels checked in 4 weeks time, especially if you experience any hypo symptoms, as you might find 5mg is too big a dose, since your FT4 isn't quite out of range.

[xxl02 in reply to kaz86]

Thank you so much. This is quite encouraging. Always felt like I was the only one that was undecisicve, because the grave's does not so much harm as it does to a lot of other people. The doctors are for the fast solution and in one report they wrote 'uncompliant' because I refused to decide for a surgery or RAI.

[kaz86]

Sorry for the delayed reply, but I just wanted to say there is no reason to be ‘persuaded’ into having RAI/ surgery all the time your body responds well to anti thyroid medication. Drs/ Endos seem to think it's the perfect solution…after RAI/surgery, just pop a pill for the rest of your life and you'll be fine. For some, it brings positive health but in my opinion, it's more like Russian roulette… you never can be quite sure of the outcome. I'm very lucky in that I feel very well, except when I have a relapse.

Elaine Moore runs a very informative website/ forum in the states. She is a retired scientist who specialised in immunology for over 30 yrs. She had Graves' disease herself which resulted in her having RAI which left her with health problems.

If you'd like to PM me to ‘compare notes’ then you are more than welcome.

[xxl02]

Thank you for that support. So got new results yesterday and well my thyroid seems to be firing up again. I feel no effect though. Blood pressure is normal or slighlty too low.

T3 was 4.31 (2.10-4.30)

T4 was 1.80 (0.8-1.70)

TSH was <0.01 (0.30-4.00)

TRAK 4.65 (up to 1.75)

So far I have been taking 5mg of Carbimazol, but with the TSH down I was considering to up the dose slightly. Usually at the beginning the higher dose will help and then can be decreased. The doctors just see the levels and are afraid of a thyroid storm, but how often does this happen, if blood is checked on a regular basis and medication adjusted. That is why the doctors want an operation or an radiotherapy. I am determined to keep my thyroid just some time longer. Here they also begin with 'Ablation' , which is minimal invasive. But no idea if this is suitable for grave's.