Graves

Hi

I have Graves' disease was diagnosed 3 years ago, since then my levels have been up and down like a fiddlers elbow. Am sick of not feeling completely well. Saw consultant this week after being off carbimazole since December. Before I had even sat down he said you are hyperactive again. Which I knew as had symptoms so was'nt surprised, just disappointed. He asked if I would consider RAI but said he had no views on it either way!!! ( HELPFUL. NOT)

Am wondering if anyone has had RAI did it work, do they feel better. Am sick of having no motivation and low moods all the time. Am back on carbimazole. The parting comment from my consultant was you could have something much worse. Any comments would be appreciated.

Ali xx

29 Replies

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  • When my husband age 39 was in your shoes he was advised on no account accept RAI

    He accepted surgury but that was the wrong decision too since the idiots failed to test for hashimotos and graves running in tandem

    End result is severely damaged muscles and joints which thyroxine made 100 times worse

    Only now thanks to Armour Thyroid is he well and happy at age 72

  • Well, obviously, he doesn't have a thyroid gland problem. They can be quite flippant but probably don't see the patient after the procedure.

    I am hypothyroid and wouldn't wish it on my worst enemy. I will copy and paste below advice from Dr Toft, who was President of the British Thyroid Association. Once you have RAI, I believe you will become hypothyroid and some members who have had this done will no doubt comment:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    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.

  • Thank you so much for your reply Shaws. Have researched myself but there is so much conflicting information. Thank you for the advice from Dr Toft it has really helped. I think I will continue with carbimazole and just keep praying that I go into remission.

    Ali

  • Yes, I think that's wise at present and hope everything settles quickly. This is a book which members have said is helpful.

    thyroidlifestyle.com/#!auth...

    If you cursor to the green Healthunlocked bar at the top of the page and press the square box on the right a search box will show and you can look at previous posts/questions for Graves.

  • Not sure whether it is better that the guy had no views on it either way. My lot can't wait to use it as the next step should I become hyper again after just a short spell on B&R. Even though I've heard of lots of people who are quite happy having had RAI I don't want it and certainly not as a first option.

    I've got the article Shaws has sent you at the ready should I relapse and I completely agree with what she says about hypo being no fun. The reason I don't want RAI is because I don't want to take the chance that I might become hypo.

    I became hypo when I had too much Carbimazole and I felt really, really awful, so no way do I want to be like that permanently - even though the consultant I saw when I stopped B&R told me that RAI was just a little pill ( she even held up her fingers showing an imaginary little pill) I would be fine and that they could even give me a second round should the first lot not work and when I said I didn't want to become hypo she said that was very unlikely, most people didn't - without a thyroid! Well call me cynical but I just don't believe that.

    If you could guarantee that you would be listened to have a doctor who treated you by how you feel and not by TSH only and then treated with exactly whatever made you feel well be it NDT or whatever was best for you, then fine but there are an awful lot of unhappy hypo people out there who are not getting the treatment they need to make them feel really well. So, I would much prefer to hang on to what I've got - as they say 'once it's gone it's gone'

    Hyper is horrible but hypo is just as horrible in a different way. Your choice of sticking with carb sounds good to me. :-)

  • Hi Fruitandnutcase

    Thank you for your reply it is a minefield this hyper and hypo thyroid problem, but I don't like the idea of killing my thyroid with Rai. Will stick with the carb.

    Ali xx

  • Were you on the same dose of Carbimazole all the time? Have they suggested Block and Replace?

  • Hi Silver_Fairy

    Was on block and replace after being on 40mg of carbimazole for 6 months. Consultant put me on 100 mcg of levothyroxine with 40 mg of carb. Did not agree with me felt so ill. After 18 months came off meds to see if I went into remission did not.

    Changed my consultant as I didn't think block and replace suited me.

    New consultant didn't believe in block and replace and put me on a low dose of carb which suited me much better. Was ok for a while then back in December stopped carb but by February hyper symptoms started to rear their ugly head. Appt with consultant was April 30th he told me what I already knew. I had gone hyper. So has started me on 20mg for a month then drop to 10mg.

    Sorry if I have been long winded but think I will stick with the carb.

    Thanks for your reply.

    Ali xx

  • Did 40 mcg a day for six months not make you totally hypo? I was on 20mcg a day for a month and my TSH didn't move in all that time although my T4 went from 38.5 to 15.6 then

    My dose was then raised to 40mcg a dayfor two months and my TSH went from 0.03 to 7.0 in that time. My body didn't half feel awful, hair falling out all over the place, body felt like it had been hit by a bus, could barely move I felt so stiff and sore so I can't even begin to imagine how you felt after six months on that amount.

  • Block and replace didn't work for me either. I was on 40mg Carb and 125mg of thyroxine for 18 months. Relapsed within a month of stopping. After' I asked to try Carb only and titrate my dose. I am now on 2.5mg every other day. I have refused both RAI and surgery but don't know how long they will allow me to take the Carbimazole and/or when I will be discharged

  • Hi Silver_Fairy

    Apparently you can take carbimazole long term someone on this site sent me a link which is very helpful, will send you it when I work out how to private message you if that's ok, it is about the pros and cons of RAI and surgery. It is from a leading specialist.

    Ali xx

  • You can put the link on this thread if you want? I think I have a link somewhere on my laptop about long term Carbimazole but it's whether the Endo will let you, that's the problem!

  • I found this very useful:

    livingwithgravesdisease.com...

  • I am hypothyroid and wouldn't wish it on my worst enemy. I will copy and paste below advice from Dr Toft, who was President of the British Thyroid Association. Once you have RAI, I believe you will become hypothyroid and some members who have had this done will no doubt comment:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    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.

    This was sent to me by Shaws.

    Ali xx

  • I definately cannot have RAI as I have TED and dont want surgery as I have right sided heart failure, so Im going to have to try persuading my Endo to leave me on Carbimazole. She insists that the small dose I am on isnt doing anything, but I know that if I stop I will relapse.

  • As the small dose suits you I don't see any reason why your consultant shouldn't carry on prescribing it. Especially as you can't have RAI .My consultant is prepared to prescribe it long term for me.

    Ali x

  • Thank you hampster1 will take a look :)

  • Ali, if you have Thyroid Eye Disease (TED) RAI is NOT recommended as it can worsen the eyes. I'm sorry I don't have the link.

    My sister has Graves and was recommended RAI to prevent her TED worsening in Nov 2011. I think her eyes are worse now and am trying to persuade her to see an eye specialist. She's doing alright on Levothyroxine and prefers to be a little under medicated after all the years of being hyper.

  • Hi Clutter

    Thank you for your reply. I do not have TED and I have been told also that RAI , makes TED worse.

    Wonder why they recommended RAI for your sister. Sorry to hear her eyes are worse. Have read a lot these last few days about RAI and why it is given to so many, I think it is a money issue.

    Ali x

  • She was on BUPA so it wasn't an NHS cost issue. The endo she saw privately I also saw on NHS. I suspect there is an NHS mindset that 18-36 months on Carbimazole = no cure so let's zap the thyroid :(

    There have been a few posts where Graves patients have had to strenuously resist attempts to make them undergo RAI when they've been successfully coping on Carbimazole for a few years.

  • She needs to see an Ophthalmologist really.

  • You know that thing about leading a horse to water... :(

  • My story is long, complicated & appalling, but I would definitely NOT recommend RAI for Graves. Ten years on from starting symptoms,( which went undiagnosed & wrongly treated with psychotropic drugs for 6 years) I am still unwell, hypo, although Dr. P. is doing his best to help.) The RAI brought out the latent Graves eye disease, which I knew nothing about beforehand. I just don't respond to treatment as expected. Not surprising really, my system was wrecked by total mismanagement.

    Good luck!

  • Hi Trixie 64

    So sorry to hear about your appalling treatment. I had a similar problem

    Kept getting told I was depressed and on the menopause, but I knew it was more than that. Really felt dreadful and in desperation I was able to initiate my own blood tests. My GP panicked when the results came back as the T4 and T3 were very high and I got to see a consultant within 2 weeks. It makes me sad that they immediatley think it's in your mind and lots of people suffer through misdiagnosis.

    Hope you are know getting the correct treatment, my thoughts are with you.

    Ali xx

  • Thanks Ali,

    My problem was that the Graves affected my brain so badly right from the start, that I lost all interest in everything, all motivation and all ability to think for myself. The ADs, antipsychotic and anxiolytic no doubt made things 10 times worse. GP did prescribe beta blockers for my palpitations, but obviously neither knew nor cared why I was having them. My physical symptoms were "all psychological."

    At last someone persuaded me to get a second opinion, something I'd lacked all motivation to do before. The second GP took one look at me & ordered a whole raft of blood tests, which the first GP hadn't done in nearly 5 1/2 years! Result .... extremely overactive thyroid. (Free T4 82.9. Range 9-23. Free T3 >27. Haven't got range to hand at the moment.)

    Unfortunately, because my mental abilities were so lacking, I allowed the endos to give me RAI after only 2 months on Carbimazole, without understanding the implications. All I knew was that I wanted to get out of the hell-hole I'd been existing in for all those years. It caused a roller coaster of being hypo, then hyper, being told to stop Carb, then, no, start Carb again, etc, then finally, after 16-20 months, I gained 2 1/2 stone in weight, became so breathless I could hardly walk. TFTs "normal". Diagnosis:heart failure.Prescription:Beta-blockers. Result:worsening symptoms.

    That's when, in desperation, I started searching the internet & eventually discovered Dr. P. who probably saved my life.

    I'm optimistic by nature, so I'll get there in the end!

    Trixie xx

  • Hi Trixie

    Your story moved me to tears. Someone should be held accountable for your appalling mismanaged treatment.

    It is no wonder you had no control over what was happening to you with levels that high.

    I am so pleased you have found a Dr that is concerned about your well being. I wish you all the best for the future and someone once said to me "what doesn't kill you makes you stronger.

    That is certainly true about graves. We need to hope that in the future there is a better way of treating it. We are armed if any of our family or friends get this dreadful disease god forbid, but there is a genetic link.

    Ali xx

  • Dear Ali,

    I tried complaining to the GMC. Waste of time, effort & energy; they just defended the GP, as others on this forum have found. More stress in fact.

    My story is actually even worse than I told you; I could have died, but still the GMC didn't care. I'm single, no family except an older brother, who also didn't try to help because of his own unshakeable faith in NHS doctors. The GP told him that it was all in my head, so my brother believed him! In fact, he & his family did me down while I was unable to think straight. He now refuses to make amends.

    You're right about the genetic link, which I've read about & know from Dr. Peatfield. I've got proof of my genetic predisposition. You're also right about what doesn't kill you makes you stronger; I know that's true. It's just that the spirit is very willing but the flesh is still weak.

    I'm past tears; it's my determination & strong will that keep me going now.

    As I keep saying, onwards & upwards!

    Many thanks for your understanding.

    All the best to you.Stick to your guns, which is what I'm doing now.

    Trixie xx

  • Hi Trixie

    Bless you ,you have been strong and will go from strength to strength. Remember there are people on here who care.

    Sending you hugs

    Ali xx

  • Elaine Moore's book on Graves Disease is very useful - it examines the disease and the various treatment possibilities in great detail. (The author is an American doctor who had undiagnosed hyperthyroidism for many years and was then treated with radioactive iodine; she warns against precipitate action, particularly since surgical and iodine treatments are irreversible).

    Another useful book, by Susan Blum, is on treating autoimmune diseases (Graves is one of them) by diet and lifestyle changes. I'm following her recommendations at the moment (not eating any dairy or gluten). On 10 mg carbimazole daily, and feeling (touch wood) pretty well.....

    Best of luck!

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