After the Block and replace treatment finish

[Tjeyar]

My endocrinologist have just ended my block and replace treatment after around 18 months.One week past,I feel insomnia,weight loosing and so on.I have grave disease and TED in my left eye.My eye symptoms not cured yet.Any ideas.Does my 18 months treatment worth and Will I be cured?My next appointment will be in 2 months.Thank you.

[Valarian]

Only way to know for sure is to have another blood test. When is the next one due, and how long have you been off carbimazole ?

The chances of remission aren't great - somewhere between 30-60% - but there is still a chance.

If it doesn't work, given your TED, RAI is probably not the best alternative option.

Good luck !

[Tjeyar in reply to Valarian]

In two months,Just one week no carbimazole

[Fruitandnutcase]

I know when I came off my block and replace - after exactly a year - I felt it took a while for my body to get used to feeling ‘normal’ again so don’t panic. What were your most recent blood test results? My bloods have gradually increased since my block and replace stopped - I’d say I’m going a bit more towards hypo readings than hyper.

What were your antibody levels like. I knew that a lot of hypo sufferers followed a gluten free diet with good results so although I had been hyper I went totally gluten free to try and get mine reduced - it worked and I haven’t eaten gluten since. You could give that a try.

I’d say, I know it’s probably not easy but try to relax, eat well and don’t panic. Your body has been through an awful lot so it might take a bit of time for it to feel ‘normal’.

Yes agree with Valarian, if you have TED and don’t get another chance at block and replace I’d try to avoid radioactive iodine if you can.

[Valarian in reply to Fruitandnutcase]

Interesting, Fruitandnutcase.

Those of us on titration probably have some idea of the likelihood of achieving remission by the time get to come off cabimazole altogether (not that I've reached that stage yet), but the end of B&R has always struck me as a bit like stepping off a precipice.

[Fruitandnutcase in reply to Valarian]

I know, know what you mean about titration. Although block and replace is maybe easier for doctors to control in a way.

It felt really odd going from all those pills holding me together to absolutely nothing - in a day. Nothing disasterous happened although from what I remember a while to get used to the new ‘normal’ and stop worrying that I would relapse at any minute.

I had been symptomatic for a long time before I was eventually diagnosed so it had been a very long time since I had known what a normal body felt like.

[purple64]

I have graves and an eye problem, not TED, at my last endocrine appointment the dr said that RAI probably wouldn't be an option due to the fact I already have a problem with my left eye. Trouble is its a clinic appointment and I never see the same dr each time which is frustrating as they all have different opinions🙄.

[Fruitandnutcase in reply to purple64]

It is indeed. Like you I never saw the same person twice. I didn’t mind if yI didn’t care for the doctor I saw but when I liked someone it was a bit disappointing never to see them again.

If I were you I’d decide which treatment option you prefer and hold out for that.