Graves Disease, Off Carbimazole, Am I in Remission??

Hi All,

I would really appreciate your views and comments as I am really confused and upset by my latest Endo appointment.

After going through about a year of weird health issues I was finally diagnosed with Graves Disease Nov 2012(TSH 0.01 FT4 30 FT3 9). I was put on carbimazole at 40mg for two weeks, to then reduced down to 20mg.

When I was next tested I still had a suppressed TSH but my FT3 and FT4 where much better and were middle of the range.

Over the next year my carbimazole has been reduced(lowest dosage 10mg) and my bloods started to going towards Underactive. TSH 5.4, FT4 9 FT3 4.

I have steadily been piling on weight, 2 stone since August and I never had the luxury of loosing some weight when I was overactive(one symptom I wouldn't of minded).

I went to my doctor rather than my endo as they just kept telling me my levels were in range and seeing me every 4 months.

Even though they said I was in range I felt awful!! My hair had started coming out again and was just not feeling normal.

I asked the doctor if my levels could be wrong for me as everyone is different and she agreed that I had switched to underactive and to come of my medication and see how I go with bloods done every two weeks so that they could keep a close eye on me.

Finally someone was listening to me and my feelings rather than just looking at the numbers and saying you are ok because the numbers say you are.

Three weeks after coming off my carbimazole and my bloods were TSH 4, FT4 17.

Six weeks off medication and my latest results are TSH 1.4 FT4 13.9.

My doctor said I'm heading towards overactive again because my TSH is low. I don't understand this as my FT4 is lower too? She wants another test in two weeks time.

Whilst all this was going on my Endo left and I got a new one.

I went to see him for the first time today and he said because my body hasn't responded well to carbimazole I should have the radioavtive iodine or a thyroidectomy.

My old endo said to try 18 months of medication not one year and I actually feel quite normal for the first time in ages.

I told him I didnt want his options and asked if I should go on a maintenance dose of 5mg of carbimazole and he said its not the way to treat it.

I really dont want to do any of his options. I have two young children and there is no way I couldn't see them for two weeks and I dont want surgery.

He also wants me back on 10mg of carbimazole even though when I was last on that amount it made me underactive.

I want to try for remission. I'm happy to carry on with medication. I wasn't flipping back to overactive I just kept getting lower and lower FT4 and increased TSH.

I'm also scared as I have read TED can more likely occur if you have these procedures??

Sorry to go on, I just wondered if anyone had anything similar happen to them or if you could advise??

Thank you x

3 Replies

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  • Hi Nichola,

    In Feb my TSH had almost flatlined and my T4 was nearly 70 I'd lost a stone and had palpitations, also tearful. I was pushed to RAI but did a lot of research and decided to go for Carb. They wanted me on block and replace but I chose to go for monthly blood tests and reduced if carb worked. I am not on 2.5mg daily and feel very well. Bloods all fine. I gave up wheat completely, very little caffeine, lots of herbal tea and cut back on dairy, checked out LowFod Map diet - recipes great but hard to give up onions and garlic (so didn't)..... try to reduce stress with monthly acupuncture and massage (expensive but worth it) rarely get palpitations now (only if I knock back the red wine) and have started jogging and going to the gym again to reduce the stone I put on (realise was lucky with this amount). Feel OK but don't take it for granted. Also take supplements, L-Carnitine is supposed to help with hyper, L Glutamine and Aloe Vera with gut health (immune response triggering Graves can be exacerbated by leaky gut) Vit C, Vit D, Vit B's, good oils. If you ever go to GP or endo please take someone with you who takes notes and gets the questions you have put together before you go before medical staff....... It is a scary illness and one that doctors would like to treat radically. I am not on carb for another 16 months but it's so little if the bloods remain OK I am going to push for longer. xxxx

  • I wouldn't let your new endo rush you into anything. He can't force you to have any treatment or take any meds (he can prescribe them if it makes him happier but that doesn't mean you have to take them). Keep telling him you would rather wait. You can keep cancelling/postponing appointments if he is insistent. It sounds as though you know more about your thyroid than he does. See what the next blood test comes up with. Your endo seems to be trying to treat your TSH level, not your thyroid. A TSH of 1.4 is not overactive, those results seem more underactive (low T4) than overactive.

  • My sister was treated with carbimazole for 3 years, in remission for 10 months and had recurrence with mild TED. Endo recommended RAI or surgery to prevent progression of TED.

    Surgery requires an overnight stay and probably preferable if you have young children rather than working around the quarantine required for RAI.

    Read up and don't be rushed, its not as easy managing surgical hypothyroidism as "taking a pill every day for the rest of your life".

    If the endo insists on prescribing 10mg just cut the tab in half or quarters f you can't persuade him to prescribe 2½.

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