traceykelly

diagnosed with hyperthyroidism 4 months ago although doctor thinks i have been suffering from it for 2 years. take 30 mg carbimazole and doctor wants to increase it but i am always getting throat infections and having to stop taking it until i have a blood test. my thyroid levels are comming down a little bit but still feel very unwell. when i was first diagnosed my gp wanted me hospitalised but the specialist thought it would be ok to be treated at home. now my specialist is talking about surgery. i wonder if the specialist has given the carbimazole a chance as it is working

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  • Hi traceykelly. I've got Graves. I was first diagnosed in 2012 and put on 20mcg for a month while I waited for an appointment with an endo. After the month I had blood tests and got a letter from my endo saying to double the dose - my TSH hadn't increased at all in that time and my T4 had changed but not by much. Two months later I actually saw the endo and by that time I had been taking 40mcg a day and had gone from being very hyper to being very hypo.

    I was going to be treated with 'block and replace' - basically they completely block your thyroid priduction with the carb then gradually replace it with thyroxine - so at that point they said to stop the carbimazole for 'a few days' which I did but to start the Levo straight away which I also did. I had blood tests every six weeks and my levo thyroxine was steadily increased to 100mcg a day while the carb stayed at 40 mcg a day until eventually in November 2012 - 8 months after I started the thyroxine and 11 months after first being diagnosed all the thyroid meds were stopped and I've been waiting and watching ever since :)

    I was told (several times !) that should I relapse I would be given RAI - no way did I want that because I felt well on the anti thyroid meds - especially when I was also getting enough thyroxine - although like you I had the odd sore throat / swollen glands but nothing that showed up on the one and only blood test I had.

    I spoke to my GP about not wanting to have my thyroid zapped and was told that the hospital cannot insist if I don't want it nor can they refuse to treat me. I felt a lot more relaxed after that - which is good for us Graves people - and am still in remission - long may it last.

    Do you have a copy of your results with the lab ranges - that's the numbers in brackets next to them? If you do post them on here and let people see what they think. If not, get a hold of them then post them Also have you had your vit D and B12, ferritin and folates checked too? Ideally you want them to be near the top of their ranges to benefit your thyroid.

    Often doctors will say 'you're fine' when your results are only just inside the range and you would feel better if they were at a different place within their range.

    As far as I can see there are people who stay on carb for years which is what I hope to do should I relapse. As long as you are able to take them then there is really no reason why not. Even Dr Anthony Toft who is a real 'establishment' person mentions that in his little book 'Understanding Your Thyroid'

    If I were you I would do as much research as you can, there are lots of books around, you can go onto the Thyroid UK website - there is a massive amount of information on there, you can look at the links on the right hand side of this page, you need to get yourself as well informed as you can and get yourself a list of all your tests results with their ranges.

    Don't let yourself be pushed into making any rushed decisions. Obviously if you had serious problems with carbimazole and couldn't take that or PTU or if for example you had something like thyroid cancer then obviously you would have to consider surgery or RAI ( even I would do that ) but if that's not the case then research and put your case. You could ask for a second opinion with a different endo at another hospital. Louise at TUK has a list of thyroid patient friendly doctors and endos. Or you could post and ask members in your area to private message you if they know of someone good.

    Last thing - I'll shut up now - if you aren't already taking it, when I started carbimazole my pharmacist told me I should take vitamin C along with it. As it was I was already taking 1000mcg slow release vit C+zinc every day. So it might be worth you doing that.

  • Four months is no way long enough! You need to wait at least 4-6 weeks between changes in dosage anyway. If 30mg of Carb is bringing your levels down it seems daft to increase it as you can be over medicated and end up hypo.

    Have you been tested for Graves?

    If you are developing throat infections on a regular basis I would ask to change from Carbimazole to PTU, see if that suits you better.

    Please dont be rushed into having either surgery or RAI, do lots of research, then decide. If there is any risk that you may develop Thyroid Eye Disease, you should not have RAI.

    Also, ask your GP if he/she will test your vitamin levels. Hopefully, someone will give you the list of ones that are regularly tested.

  • Your story surprises me. I had hyperthyroidism when I was in my 20 s. They said I was very ill. Had lost lots of weight. Tired. Depressed had a goitre so big it looked like an egg pushing out of my neck. I took the meds and many months later started to feel better. I did not take meds when it got in normal range for years. I stopped them myself. The goiter also disappeared. Now I am 50 and have hypothyroidism and take 100 mg Thyroxine. For 2 plus years I was going to the GP with symptoms and 2 as told it was menopause. . Eventually I asked for a thyroid test and found it was very low. Blood test and thyroxine for the rest of my life. No other info. That was it. Still have symptoms.. good and bad times. So researches myself. Now take a multi vitamin and vitamin d3 daily. Take evening primrose and starflower oil to balance hormones. And seem fine. Now and then I get tired so I take macca root to boost my energy

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