Graves Decease

I was diagnosed with Hyperthyroidism at the end of October but I had been suffering since July. my T3 was 34.7 an my T4 was 84.5 Are these extraordinary high or in line with what we suffer? I'm taking carbimazole 20mg twice daily. It's helping but my God do I itch! I also get more tired quickly. Has anyone experienced this?

Thanks in advance

Ryan

17 Replies

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  • Hi Ryan

    Yes my results were nearly the same as yours, T4 was at 86 and I was a shakey miserable mess.

    Get some antihistamine and the itching should go quickly.

    You don't say if you have seen an endocrinologist yet?

    Just don't let them push you in to deciding what treatment to have to quickly.

    I decided after reading on here how other people felt and stuck to my guns.

    Read as many comments for Graves' disease as you can, you will get to understand your own body better than the specialists and in time hopefully like mine they will work with you.

    It's a very long journey but you do get back to normal.

    I'm still on carbimazole and thyroxine and feel really good and it's been over 6 years.

    Hope you feel better soon.

  • Shaky miserable mess with pounding heart just about sums me up too.

    I couldn't agree more with your comments Duster. I'm impressed to hear that you have been on block and replace for six years. I'm in remission but I saw my GP and told her I do not want RAI if I should relapse - I was told at practically every visit that should I relapse it was RAI for me.

    Considering I was like you and felt really well on it and felt dreadful when I became hypo during my treatment - three months on 40mcg a day carbimazole with no blood test after the first one which was after taking 20mcg for four weeks with no change. There was no way I would want to take a chance that I might be permanently hypo if my thyroid was killed off.

    So Ryan - if you are taking 40mcg carb a day make sure you are getting regular blood tests otherwise you could end up hypo, like I was, which while being completely different to being hyper, is most unpleasant too.

    I also kept a daily diary of how I felt - only a quick line or so - and that was really useful when I started taking levothyroxine along with the carbimazole, I could see where I felt best. Always kept a note of your blood tests and their lab ranges, that along with your daily notes will be useful too. It also helped me see that even if I didn't feel as if I was improving, I actually was.

    That and read and research as much as you can about the thyroid in general and Graves in particular. Good luck, I hope you feel much better soon, Graves is no fun at all. My first question when I discovered this site was 'Will I ever feel normal again?' and yes, I do. Didn't feel like I would at the time though.

    Forgot to say, my pharmacist told me to take vitamin c along with the carbimazole. Unfortunately I was so stunned by life at that time I didn't ask why but I took 1000mcg slow acting vitamin c plus zinc every day and I often wondered if that was why I felt so well.

  • Hi duster

    I too, have Graves and am currently on 20mg carbimole. Diagnosed in May 2015 and developed Thyroid eye disease in Feb 2016. I now bounce between hypo and hyper and the endocrinologist just adjusts my carbimozole constantly. I feel like a human seesaw and never feel well. I have researched supplements and currently take calcium with added D and K vit, magnesium, selenium, black currant oil and B12. My symptoms have left me unable to work and am spiralling into debt. I am very interested in the fact that you are on both carbimozole as well as Levo. No one has ever suggested that was possible and every time I see my endo she says if the carbimozole doesn't work I should consider removal of the thyroid gland. I am adamant I won't do this but feeling so ill all the time is making me desperate. Can you tell me what the thinking is behind taking both as I would like to poss. discuss this with my endo at the next appointment in 20th Dec. Thanks.

    Claire

  • yes I had the graves eye disease to and was successfully treated with a high dose steroid iv over 6 weeks, it was magical for me, only suffer with dry eyes sometimes now.

    The treatment I am on is block and replace, the carbimazole stops the thyroid releasing the hormone, so a thyroxine tablet has to be taken to replace it.

    I have refused rai as this makes your eyes worse and after recovering so well from ted I am adamant to stay as I am.

    Surgery has also been suggested and I have turned that down to.

    My levels do fluctuate sometimes but a little adjustment to my thyroxine soon sorts me out.

    I was originally told that I could not stay on carbimazole indefinitely but at the last hospital appointment as I am doing so well on it I've been told I can.

    Hope you get sorted soon.

  • You know, every time I saw someone they would say 'and your eyes are fine' and I'd tell them they weren't really.

    My eyes didn't bulge but I have got the driest eyes ever, I can't do without artificial tears and at that time I was getting sort of vertical double vision - especially when I looked at things like credits on TV or car number plates, basically anything with writing, plus if I read for too long I couldn't see much when I looked up.

    I think the reason they said my eyes were fine wasso that they could go ahead and do RAI if they wanted to, when RAI isn't good if you have TED. It used to really bug me.

    I'm so glad to hear from someone who has been on block and replace for such a long time. It's really good news.

  • Hi Duster,

    I am intrigued about this mix of thyroxine and carbimazole. My endocrinologist told me the block and replace was incredibly old fashioned and they don't offer it any more which is why I am being treated with tritation (carbimazole only). Apparently this means they have to give you less so its less harmful... who knows!

    I feel fine now though after 6 months back on carbimazole although I am getting fat! I lost so much weight that going back to a size 10 has madam feel like a whale. I realise a size 10 is 'normal' but after being a size 4 for months i feel massive.

    Ryan - a tip with the antihistamine; get 4mg dose from the doctor so you can take 3 tablets a day. I found that managed the itching far better than one big dose and it made me less sleepy. And yes 80+ is high and considered very active Graves. I'm afraid there's a good chance it will come back after treatment. And yes the doctors will push for RAI or thyroidectomy but don't give in unless you really know what it means and you're comfortable with it. I have resisted so far as I don't feel eradicating the thyroid is the answer given symptoms of Graves still appear once its gone.

    Good luck and hope you feel better.

  • Hi Lizzie

    I was originally on block and replace for 10 months but relapsed within 3 months.

    So restarted again. Originally I took 40mg of carbimazole which caused sickness so dropped to 20mg.

    At the moment I take 10mg carb and 100mg thyroxine and am very well on it.

    I did ask about titration but was told it was no good for me.

    As I'm doing so well I think it was the right decision.

    I think it also depends on which area you live as to what the endo thinks is best.

  • Yes I have discovered the postcode lottery! I went to see a private specialist in another trust and she told my the block and replace was the best option for me, but my NHS endo won't consider it so guess I go private or stick with the carbimazole.

    It cost me £300 to see the private specialist once so afraid I'm stuck with the NHS.

    Interestingly the private doc I saw said she is in the middle of a new drug trial for Graves and the results were really positive. Apparently it is a drug they use for other autoimmune diseases and it is far easy to medicate with and has less side effects than carbimazole. However... it won't be available for 5 years. Irritatingly I can't remember the drug so I am keeping my eye out for news of it.

    There's always hope!

  • Lizzie do you get your prescriptions free

    I do as I take the thyroxine. I don't know how I would have managed without the free prescriptions.

  • No! How did you get it free? I was told only the Diabetics could get free prescriptions and that I earn too much (ha! always a good one).

  • My doctor said to fill a form in and she would ok it and to make the best of it. Hardly ever went to see her before illness so she said I was entitled to it.

  • Well that's lucky. I guess I will be paying forever. Can't complain really. The NHS is a good service even if I dislike my endo!

  • hi Ryan

    I was very similar to you 30 months ago and those levels are dangerously high as you know. Do you know what has triggered this? For me it was amiodorone (a drug used for treating atrial fibrillation), it wrecked my thyroid gland and I was on 80 mg carbimazole daily until they did a total thyroidectomy last March. Like duster said read a lot and get to know what caused it coz believe me you don't want your thyroid gland removed! Get several opinions if you gave to coz some endos are; well I don't want to say it! You need to understand your body now more than ever before and you need to trust yourself.. Good luck

  • Hi Ryan, that seem dangerous already. Yes do some research about grave disease and hyperthyroid, that would be helpful. Refrain from eating salty foods and sweets. Eat gluten free and NON-GMO content foods. Don't smoke and don't drink alcoholic breverage. These will help you get back to normal.

  • People with hyperthyroidism often become very depleted of nutrients, especially Vitamin D. You can help yourself by supplementing with a reasonably high dose. (at least double the RDA). If you can get your doctor to test you for B12, Folate, D, and Ferritin you can find out what you need. You need to have at least average levels of these to optimise your recovery speed. I believe taking Vitamin D helps prevent osteoporosis in Graves disease sufferers. Good luck.

  • Hi Ryanm78. I was diagnosed with Graves May 2015. I had the entire gamut of hypothyroid symptoms from painful leg joints to heart palpitations, hair loss etc. I have been on a varying dose of carbimazole since diagnosis. I too suffer from itch - particularly my scalp and legs and oh my god, the exhaustion! My kids wonder what's wrong with me - I fall asleep if I sit down, wake up each morning feeling like I haven't slept and I have brain fog all the time. If I go and do even the most tiniest errand like walk down to the shops and back - I'm done in. I thought this was just a few more symptoms of the Graves itself ..do you think it's the drugs? I wonder..🤔

  • I think it's probably the Graves that does it, once the drugs kicked in and got me over the worst of it I was still taking the same carbimazole and levothyroxine but wasn't tired so it probably wasn't the pills.

    I was SO tired back then and it didn't even feel like normal tiredness. I have really elderly friends who had far more energy than I had. I used to get up feeling totally exhausted, drag myself about while fantasising about going back to bed.

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