Coming to the end of block and replace for Graves Disease

Having seen my endocrinologist two months ago and due to see again in May, He has stated he very much doubts that i will go into remission as my goitre is large, i was very hyperthyroid with a FT4 83 (12-22) and high level of antibodies on diagnosis. He is now pushing for RAI or Surgery which i do not want either and to compound the problem further i have been hypothyroid TSH 31.7 for quite a while as i am taking Carbimazole 40mgs and Levothyroxine 100mcgs which has been increased from 50mcgs to 75mcgs and finally to 100mcgs. I have no faith with Levothyroxine as it does not seem to work for me, as i feel rotten! so very reluctant to have my thyroid destroyed. i asked if i do go hyperthyroid again about staying on Carbimazole on a low maintenance dose and my endocrinologist is not happy to do this. Is there a reason why you can't stay on Carbimazole on a long term basis? Thank you for your help

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  • Neeka, I think your problems with Levothyroxine are likely to be that you were on an insufficient dose when on a high dose of Carbimazole and your thyroid levels weren't monitored frequently enough to prevent your TSH rising so high.

    Some members have been on Carbimazole for years, one for decades. It has to be your decision whether or not to have RAI or surgery and it's certainly not something to undertake before researching it carefully. If you have thyroid eye disease it may be better to have surgery as RAI can make it worse. It's irrelevant whether your endo is happy or not if you decide you prefer to continue on Carbimazole, it has to be your decision. If you have Graves antibodies there is less chance you will have a permanent remission. If you become hyperthyroid again you will be prescribed Carbimazole even if you refuse surgery or RAI.

  • Hi Neeka1, I am sorry you are having to make decisions which you are unhappy with at present. A member who has Graves will respond. I am hypothyroid.

    This is an excerpt from an article by Dr Toft. I don't know if it will be helpful. It's question 5 in the article:

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

    If you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft.

  • Hi Neeka, your post sounds just like I was feeling towards the end of my B&R except I felt ok on it - presumably because I was on the correct amount of levo for me.

    A couple of visits before I stopped I was told RAI was the next step should I relapse after I stopped B&R and become hyper again. I told them both times that I did not want RAI. The second time the doctor held her fingers up as if she was holding up the pill and said that it was 'only a tiny pill and if it didn't work the first time I could have another one'. They just didn't seem to get that I did not want RAI.

    No way did I want RAI I was really worried about it but I knew it was best to stay stress free so I booked an appointment to see my GP and said that I didn't want RAI could I be forced to have it? Answer was 'No' I then asked if the hospital could refuse to treat me if I said I was not having it and the answer again was 'No' after that I went home and got on with my life.

    RAI was not mentioned at my signing off visit - I figured because the discussion I had with my GP had made its way to my hospital notes ( my surgery and hospital note share)

    I also bought Dr Toft's little book Thyroid Disorders, published by the BMA and highlighted all the bits that said it was possible to stay in B&R for extended periods, I downloaded any items he had written that said the same sort of thing and pasted them into the back of the book so I went to all my visits clutching my 'evidence'. Dr Toft is very 'establishment' so I felt it would be much harder for anyone to argue with one of their own.

    My reason for not wanting to lose my thyroid is exactly the same as yours - I was allowed to get a bit hypo during my treatment and I felt absolutely awful and I didn't feel confident that I would be given enough levo to keep me feeling well.

    I feel that giving RAI or TT ( unless the patient can't take carbizole or PTU for any reason) is just a way for the hospital to get rid of you back to your GP who as I said, may or may not be willing to give you enough levo to keep you feeling really well.

    I felt well on B&R and didn't want to take that risk.ive heard of people who have been on both B&R and Carbimazole alone for extended periods of time but I know I needed to have a decent amount of levo to feel good - I had worked my way up to 100mcg levo plus the carb when I stopped.

    Good luck if you have to put up a fight to stick with anti thyroid drugs

  • Neeka

    I have been on carbimazole for over four years, I have refused rai and surgery. I recently went hypo so have reduced the carbimazole from 20mg to 10mg, still not totally right but am much better, just a matter of getting my dose right.

    I will stay on the carb forever if necessary. It's your body and you know how you feel.

  • Well done duster, I love to hear from people like you. 😊

  • Your post jumped out at me because the people who have been in your situation that attend my Support Group all say how they regret having RAI and/or a thyroidectomy. There were all told that they will be fine, that they will just need to take a little white pill each day but they have all had problems on levothyroxine.

    You have to decide what you want to do but speak to as many people in the same position as possible rather than just listening to an Endocrinologist who hasn't experienced it.

    Sue

    thyroiduk.org

  • I had rai a few years ago to shrink my thyroid and I'm glad I did.even though I ended up with an underactive thyroid.it is much easier for the doctors to manage a under active rather than an overactive thyroid.mine went on for a couple of years before I finally had rai.im only on 25 mg thyroxine a day now after initially being on 125 a day.judging by the other post others are reluctant to have it done .and know everyone is different but it worked for me .hope this helps

  • Hi there

    I felt I had to add comment as I have been diagnosed for 7 years now, with my first T4 reading at 91. I vividly remember the endocrinologist telling me I would never be well and I must have been poorly for so long I wouldn't know what 'normal' felt like! I felt bullied into agreeing to have the RAI but I stood my ground and said I needed to think about it. The consultant shouted at me and said well that's what you've been referred here for!!

    So I sobbed as I left and vowed to get myself well. I have been teaching fitness part time now for the last three years after getting my instructors qualifications, I eat a healthyish diet, cutting out most processed food although chocolate at hormonal times is still a given! I also visit an acupuncturist who specialises in fertility and hormonal problems and this has kept me fairly steady.

    However, I personally find that stress has a massive part to play and last year was particularly stressful. So I was not suprised when I asked for a blood test and it had gone to 46. I was also told this time by endocrine that all this time my TSH had been suppressed so it was never "right" and this time I did as I was told and took the recommended dose of carbimazole even though I thought it was too high, surprise, I was now under with a T4 reading of 10! I also gained 1.5 stone in weight on a healthy 1400 calorie a day diet.

    So, I have been self medicating, ie none, since and the gp has agreed monthly blood tests to keep an eye and interestingly my tsh is starting to recover for the first time in 7 years.

    My advice? Listen to your own body, stand your ground with 'experts' but get all the technical info from them and keep your own blood test results. I have come to realise this conditions recommended treatments are far from one coat fits all and you can manage your condition with a good nurse practitioner and a supportive GP

    Best of luck!

  • HI Everyone

    Thank you for taking the time to reply to my post. I feel more confident in asking to remain on Carbimazole if i don't go into remission as RAI is a definite NO NO! and the thought of surgery turns my stomach, so i feel the first option is for me. I will also talk to my GP as well. Good luck to you all and thank you for your advice and support and i will let you know how i get on :)

  • A brilliant older doctor at Salford Royal Hospital advised me many years ago NOT to have radioactive iodine treatment because I also have what they now call thyroid eye disease (grave's eye disease).

    I'm so glad I followed that advice rather than what the endocrinologist advocated.

    Having been hyper then hypo on the thyroid treadmill, I've seen many symptoms eventually disappear . But it can be a very long process to get medication & treatment correct.

    Good luck.

  • I think you should take your time to think about what to do ,i had a TT be 8 yrs in May ,i don't know whether it was the right thing i just try and persuade it was. i have thought that if i had had access to a computer at the time so i could of done abit of reseach maybe i would of said no.

    Don't know if this is any help but when i did block and replace the GP was told by the hospital that they had to do bloods every 4 wks due to the Carbimazole .so was always quite well.I think it says on the information leaflet that bloods have to be done quite regular.So it maybe worth looking into having bloods more regular so your meds can be controled better .

  • This is not a direct answer to your question, but have you looked into or considered going gluten and dairy free between now and when you see you doctor? You may be surprised to see the difference it makes. You don't have to have Celiac disease for gluten to impact the immune system. Eliminating gluten (and diary) does not work for everyone, but may be worth trying to see. You have enough time to tell and for the doctor to see a significant improvement in your test results.

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