Yay ! Graves', TFTs FINALLY in range :) :) :)

[Valarian]

It's exactly a year since I first started on Carbimazole (40mg/day, titration).

This may seem like a very small thing, but apart from a period last October where my TFTs went straight through the range, and dropped out through the bottom, my results have been obstinately above range. Ok, so I was still on 30mg/day Carbimazole when the bloods were drawn, but even so.... FT4 18 (9-22), FT3 6.5 (3.5-7.8)

My endo is still concerned that my thyroid is proving difficult to get under control, and he did say we might need to talk about 'other options'. He listened when I said that I felt it was a bit soon, and agreed when I said that my main concern was that the treatment was irreversible. He's signed me off to stay on carbimazole for another six months before we discuss 'other options' again. He also mentioned that he'd heard of a small study in China where they'd had a 65% success rate treating a first relapse with anti-thyroid treatment, and that although this has yet to be replicated, he was willing to give it a go.

I'll take this for now. I do get that if my thyroid levels really can't be kept under control by no more than a low dose of carbimazole we may have to discuss those 'other options' again, but for now, it feels as if I'm in with a chance

[shaws]

I am pleased for you and also that the Endocrinologist has held out some hope that you may be able to keep your thyroid gland. Also that he is obviously reading up on up-to-date research.

[Raventhorpe]

I'm so glad for you that finally you have your graves under control. Don't let the endo bully you into having RAI as some are prone to do. I was on and off carbimizole for 12 yrs and felt very well on it but because I kept relapsing the endo said I had to have RAI and to be honest it was the worst thing I ever did cause being hypo is awful and getting the right medication is difficult it has taken me 8 yrs to get the NHS to prescribe t3 for me and all that time not feeling well, very fatigued and dizziness, haven't been able to work since having it done and now wish I'd have researched it first. But I wish you luck and good health in whatever you choose to do.

[Valarian in reply to Raventhorpe]

If my thyroid results keep coming down, I should be ok even if I have to beg to be allowed to continue low dose carbi for the long term. The problem arises where the levels are continue to yo-yo from over range to under.

Thank to advice from people like yourself, I feel better informed the implications of RAI.

I’m not saying I’d never have RAI,,but I would want to discuss policy re T3 before agreeing

such a final option

[Cat4health]

Yay!!!!! Congratulations! So happy for you! Hold out and those other options may actually include positive options!!

[Valarian in reply to Cat4health]

It really does seem time they found a new treatment.

[Rmichelle]

Woo woo😊😊 i can understand your excitement as it as taken you a long time to get them levels in range!! Well done lady.😊 i too am in range and like you still suffering blasted symptons-i have just started a taking 2.5mgs of carbi every other day now to try and lift my frees as they are very lower range hopefully this will do the trick, aaw so pleased for you valarian-its great!! My endo wants me on titration doses until feb 2019 and if im still symptomatic then its coming out🌟🌟

[Valarian in reply to Rmichelle]

Thanks Rmichelle

I know that one of the other consultants at the same hospital has pointed out that a lot of hypo people don’t feel right on levo alone, and they shouldn’t be ignored. If it does come to the point where RAI (or even surgery) appears to be the best option, I will definitely be asking what their plans are should I feel worse after RAI than before. But fingers crossed ...

[Rmichelle in reply to Valarian]

Great-your endo sounds good. 🌟🌟just enjoy being in range for now-can i ask where your frees are V as mine are still bottom of range ...hence my lower dose to try and bring them up!😊

[Valarian in reply to Rmichelle]

FT4 18 (9-22), FT3 6.5 (3.5-7.8), so still quite high. Shame I can’t share some with you !

My carbi has been reduced from 30 to 20mg/day, with a review in 6 weeks.

[Rmichelle in reply to Valarian]

I dont know what anybody else thinks but i would say they are quite good-mine are ft3 3.8 ( 3.00-6.00) ft4 13.6 (12-22) are you feeling better than you were? Im hopeful they will raise on new dose but if not endo will say every 2 days🌟 long may this conitinue for you.😊

[Valarian in reply to Rmichelle]

Yes, generally, although I’ve been feeling a bit tired. Could just be that I’ve been busy, it’s very easy to blame everything on the thyroid.

Endo told me a while back that they treat 18 as acceptable top of the range for Graves’, even though the reference range goes slightly higher.

[Valarian in reply to Rmichelle]

When is your twelve months up Rmichelle ? Why wouldn’t they take you off carbi altogether at that point if you’ve been in range for a while ?

You mention next Feb, but I think you joined this forum soon after me .

[Rmichelle in reply to Valarian]

Yes i started carbi in August 2017-so it will be a year then-he said the longer you are on it the better chance you have and in his hospital that is the preferred choice, he said my frees were still quite low in range and that is why i am still having symptons-looking back on my copy bloods i felt alot better when my frees were around the higher end like yours but sadly i hit hypo in december from being on a too high dose. I think different hospitals do it differently.😊 lisa254 has just got her levels up now and feeling more like her old self and is managing a few hours back at work-she is on 2.5mgs a day for the last 8 weeks and her endo possibly will take her of carbs in july aslong as she is in range still, her frees are in the higher range too. But great news also eh.😊😊

[Fruitandnutcase]

Sounds good. When I first went to see an endo he told me all the different methods of treating Graves and finished by saying my hospital used the ‘fast method’ for treatment which took a year! That didn’t seem fast to me but it implies (to me anyway) that titration could take more than a year so well done for managing to get your guy to keep prescribing carbimazole.

I went totally gluten free a few years ago and in that time my very high thyroid antibodies (and my CRP - I’ve got inflammatory arthritis and a few other autoimmune conditions) have reduced massively.

So it might help your body if you were to try that - on the other hand I had been in remission from Graves for about a year probably before I did it and I wasn’t taking any thyroid meds although I am taking hydroxychloroquine for the arthritis. I don’t know what would happen to antibodies if you are still taking carb. It might be worth a try as it’s the antibodies that are the problem in Graves. I just felt that it had to be a help to reduce them if I could. I signed up with CoeliacUK for help with knowing what ingredients etc were gluten free and you get a wonderful ‘bible’ that lists GF ingredients and foods plus website help and a magazine. If you have no experience of being GF then that’s how to start.

I think it’s encouraging (well it is to me!) that your endo had actually heard about the Chinese study and was willing to give it a go so good luck.

[Valarian in reply to Fruitandnutcase]

I can’t say I’m mad keen but if it gives me the chance of avoiding RAI, it may be worth a try.

I was encouraged too - open-mindedness always helps

[Rmichelle in reply to Fruitandnutcase]

Hey fruitandnut that made me laugh "the fast method" i think they should rename that!! Snail- like method maybe😊 my Endo said the same 18months on carbi and no less, better chance of remission he said but then backed it up by saying 50% chance of remission. 😮 i think the treatment does need reviewing.

I do not know if gluten free has helped my antibodies as im celiac anyway but anything is worth a go. I should get a retest of my antibodies to see if reduced. 😊 the sun is shing here calling my name😊