I'm panicking. It was my choice to do this, take the radioactive iodine capsule instead of the opperation but now I'm scared.
I am a type 1 diabetic with grays disease . I was treated for hyperthyroidism for years before my doctor said to end all meds (block and replace) and see what happens?
Well summer last year, not quite a year off my meds it came back so I was told something else needed to happen.
My reason for not wanting the operation is because of my diabetes and possible infection and my utter bad luck in life.
I was told that the iodine would kill off half of my thyroid and hopefully fix me. I was told that I could not be around my son for 20 days but once I had the meeting with the doctor which has to be one week before treatment , it was all changed?
I was told that all my thyroid was to be killed off in case it came back and then I would be under active but would be treated for this the rest of my life.
All my life is fine, I'm diabetic and take care of that daily. Also I new it might happen anyway. Might!
My worry is being under active and feeling just as bad but there being no going back.
I have been under before due to too large a dose of carbimazole. It was just as horrible and I got fat so quick. My doctors at endo have said for years that my dosage is fine and I'm level, but I have at times felt so bad, tired, depressed, sweating and made to feel that it's all in my head.
This is why I don't trust them to get my Levo dose right and I might be jumping out of the frying pan and into the fire?
Please can anyone help me or share any insight?
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sbrady
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I am hypothyroid and someone will advise who has had RAI. I know that, for instance, if you had thyroid cancer it is appropriate to remove it. This is from an article in Pulse Online by Dr Toft who was President of the British Thyroid Association but I have also read that many who have had RAI regret it:-
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.
I can understand your panic it is quite understandable although i am not in the position to advise you, Shaws has more knowledge than I
I went from being overactive to now being underactive, so like you rightly say now medicated for life.
It's are hard decision for you to have to make what with you being a diabetic, what a difficult position your in........i wish you well what ever route you decide to opt for.
I feel sick I can't stop crying. Why is it so hard to get the truth from doctors on this illness? I just don't understand. I will not be going on Monday. Thank god I came on here.
Looking through lots of links the consensus seems to be RAI but, if you didn't see the link which is the above link, this is from a patient's perspective. Once you know all the pros and cons you have time to decide what's best for you.
Hi , I also have Graves and due to come off my meds in 2 weeks time to try for remission. If it comes back I have decided to go back on meds.Remember some people do ok with RAI but they dont come on the site as they are well.However omce it is done there is no going back . Therefore as you are unsure you are doing the right thing to put it off.Thete is no rush you can cancel and say you need more time yo make your decision. X
Hi, I'm Graves too. I stopped my block and replace treatment almost a year ago and I'm just a step ahead of p1pp1ns.
When I stopped I was very anxious as I had been told (twice) that if I relapsed I would be given RAI so I went to see my GP and explained how I was feeling. She said I didn't have to have it and they could not refuse to treat me if I refused. She also said that if I reached the stage where I had had three rounds of block and replace then I would probably have to think about RAI.
I've seen articles where people have been on antithyroid drugs for a very long time with no ill effects. If you are managing your diabetes and are stable then speak to your GP about it.
My main reason for not wanting it was that even if they destroy your thyroid - you still had Graves Disease also once your thyroid is gone its gone.
I also didn't feel confident that I in future when I became under active I would be given enough thyroxine or even T3 to keep me feeling well - I was then told by the endo that I wouldn't become under active but I don't believe that - I think most people who have had RAI do within quite a short time.
I also felt they were doing it for their benefit and not mine - thyroxine is cheap - they zap your thyroid then you are discharged and packed off to your GP so they have got rid of you.
Good luck, I agree with what p1pp1ns says - there are probably lots of well people out there who have had RAI - they just don't one on here because they are getting on with their life.
Yes you're both right there probably are those who have done well with this treatment, however there are enough heartbreaking stories on here and other articles I have read to make me stop and rethink things.
My treatment so far by my doctors at endo have made me suspicious and can not quite believe how little they told me to begin with and continue to withhold information.
All I ever hear from them is that my levels are fine. In reality I have been on a rollercoaster- depression, night sweats, confusion, utter exhaustion, tremors, breathlessness.
These are not all the time but since 2009 when first diagnosed I have had to constantly remind myself that I am not going mad and that I did not feel this way before.
Thank you for your replies, it is extremely helpful xxx
I had RAI late last year, within a couple of weeks all the overactive thyroid symptoms had gone & I felt much better. Three months later I then went underactive & started Levothyroxine, with a few adjustments to the dosage I seem to be stable now. For me RAI was the right thing to do but I understand not everybody agrees.
SBrady, my sister had RAI for Graves late 2011 after 11 months of remission failed. Ostensibly RAI was advised to avoid worsening of thyroid eye disease. We've since learned that surgery is probably a better option for Graves patients with TED and I think her eyes have worsened slightly. Other than that she has been well and stable on 100mcg Levothyroxine and has only gained about 8lbs, eats well, although less than when she had Graves as she isn't constantly starving, and recently ran her first 10K.
I do echo the others comments not to be rushed into having RAI and destroying your thyroid if you have any doubts. There are members who have happily been on Carbimazole for years, one more than 10 years.
I thought if you had TED a total thyroidectomy was recommended rather than RAI or if you do have RAI then they have to stabilise your eyes first.
How are your eyes sbrady? If you have thyroid eye disease which can go with Graves you should be seen by an ophthalmic consultant and let them advise about the RAI.
As clutter says, there should be no rush. Make sure you know all the ins and outs of what they want to do and once you are happy with the explanations you have been given you can decide what you want to do.
when first diagnosed my eyes were very bad, swollen and very red but my eyeballs were never pushed out. I have never lost the swelling but it has improved a lot. It just get worse when my levels are out and I now get swelling under my eyes as well? x
I have also read that RAI will worsen thyroid eye disease , I hope yous sister continues to do well. 10K run???? Oooh I dont run not in heels lol that is brilliant x
It's a difficult decision. One I hope I don't have to face. I chose to alter carb dose according to monthly blood tests. 18 months on I am on just 5mg every other day. The aim is to come off in September. I have just started with medical herbalist to boost my chances. I see an acupuncturist, have a monthly massage. I feel well. I ran a 10k in May and will do everything not to have RI and the link from stop the thyroid madness is why..... but it is a very personal decision. x
I also am being scheduled for RAI and very nervous. This is my third round of hyper with a flare up and by far the worse. Each time I stayed on the medicine about 12-18 months and then it would go in remission. This time I went into A fib (4X's for hours)and had to stay in the hospital to get it under control. Very, very scary! I have never felt so bad in my life and the nervousness (anxiety-whatever it is) is through the roof. It is a very difficult decision to make-one I really don't want to make-but I know I do not want to ever feel like I felt this time when it went hyper. I have talked to several people who have had RAI and they did fine with it.
I will be very interested to learn what you decide and how you are doing.
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