Do I have an alternative?

[Helen-Melon]

Hi all, new on here so be gentle! I have had hyperthyroidism on and off since 2011. I have had two episodes of illness, both remedied by Carmibazole. Apart from being really ill pre-diagnosis, the drugs have worked for me and I have no symptoms, am happy and healthy.

Recently, my routine blood test found that the disease is back and my consultant tells me that I have no choice but to have radioactive treatment to deal with my hyperactive thyroid. This is my second relapse and she says that it is obviously not going to get better itself. She doesn't want to keep me on Carmibazole because it has harmful side effects (although she has not mentioned this to me before).

I have not been keen to do this in the past. I wanted to see if the drugs would work long-term. I don't feel ill at all and don't relish the thought of stopping my thyroid functioning at all and taking drugs for the rest of my life. Nor do I want to make myself unwell working out what dosage of thyroxine is right for me in the meantime.

I am pretty fed up because I thought I was pretty good at spotting the signs of hyperthyroidism and had just skipped into the appointment, after a year of appointments being cancelled and moved, to be told everything was fine.

I've just turned 50, started a great but demanding new job, my kids are at crucial stages in their school life with exam results pending and I have elderly parents who need me too. I feel great and was taking everything in my stride. But the thought of a year or two of medical treatment, even when I don't feel ill, has really bought me down.

This is the third consultant I have seen. She seems very nice but I feel like I am being told off every time I go. She is bored and dismissive when I ask if there are any alternatives and a bit impatient that I don't relish the treatment she is offering.

I wanted to ask if any of you had experience of any alternatives? Obviously, if I have to have the treatment, I will. But I would be interested in others' experience. Thanks. x

[Raventhorpe]

Hi helen-melon you don't have to have the Rai treatment if you don't want to, the endo can't make you. I was on and off carbimizole for 12 yrs and was fine, I had Rai 7 yrs ago at my endos suggestion am now hypo and on levo for rest of my life and it was the worst thing I ever did. Suggest you get a new endo who is more sympathetic. There is no other alternative treatments that I know of, it's carbimizole or Rai. If I were you I would do some research before deciding and be very sure it's what you want to do and you are not being pushed into it. It's not the easy fix that the endo says it is .

[Helen-Melon in reply to Raventhorpe]

That's what I have heard from my friends who have had the treatment. Thank you for taking the time to reply. xxxxx

[humanbean in reply to Raventhorpe]

It's not the easy fix that the endo says it is .

It is for the endo! Once the patient has had RAI the endo doesn't need to see them again, and how the patient feels is of no interest.

[Helen-Melon in reply to humanbean]

Thanks for the reply. This has always been my instinct too. xx

[Clutter]

Helen-Melon,

Recent research has determined that it is quite safe to take Carbimazole for years and that any adverse effects are likely to occur within the first 90 days. You don't have to agree to RAI or thyroidectomy if you are comfortable taking Carbimazole.

[Jazzw in reply to Clutter]

Yep - this is only an abstract of the research article but you can see enough of it to see that long term use is mostly safe: ncbi.nlm.nih.gov/pubmed/286...

[humanbean in reply to Jazzw]

The whole paper can be seen here :

sci-hub.io/10.1089/thy.2016...

Please note that papers sometimes disappear from sci-hub, so download a copy if you want it.

[Helen-Melon in reply to humanbean]

Thank you! x

[Helen-Melon in reply to Clutter]

Thanks for this. The first consultant I saw was a working mother of three and sort of understood where I was coming from regarding managing your health and life responsibilities. She had me on a lower dose of Carmibazole for a longer period, a year and a half, and the problem didn't reoccur for two years. This has given me real confidence to challenge the view of my consultant. Thank you. x

[Tanguera11]

I agree with all of the above advice. I've been taking Carbimazole for the past eight years due to Graves. My endo discharged me a couple of months ago, as I refused his constant pressure to have RAI. However he did say if there were any changes not to hesitate to return. Like you, I have an active and energetic life and don't want the destruction of my thyroid to compromise it.

[Helen-Melon in reply to Tanguera11]

Thank you. I think this has all really helped me make my mind up that I am going to ask for an alternative. 80 per cent develop hypothyroidism as a result? Hardly a great success rate. x

[bredia]

Hi Helen, I too have the same hyperthyroid, and also Graves disease. My Father has the same, Grandmother did too. My Father was given 4 times the dose they give now and killed his thyroid and is now on synthetic meds for the rest of his life, and they have not agreed well with him. He gets hives and has no choice but to take them. 100% agree with you about the radioactive iodine, why kill something you cannot live without. It is like taking your heart out and replacing it with a pace maker to me. I honestly do not think they know enough about the disease to guess. My grandmother had the surgery and they took out some of it and left a little and she never had another problem. I am not brave enough to go that route so I am on Methimazole. I have been on it about 20 years. I have not had a problem unless I stopped the med. and it went crazy. Until recently when I started working 6 days a week, 8 hour days, and it became a bit much and very stressful. Now 2 months later my thyroid levels skyrocketed. My goiter is very large and my pulse is 109 at rest. So my dr upped my dose and I am going to see what happens. My main point to you is that the meds do work long term. I was only on .5 mg once a day, until the stress. I will let you know what happens If you would like. Keep you thyroid, they dont know what is best, especially if you are feeling fine, trust me you know how you are feeling, they don't. I had problems the same way with Dr,'s. Had to change 4 times already for the same reasons. Good Luck, Dianne

[Helen-Melon in reply to bredia]

Thank you very much. I am on 15ml a day at the mo and going back in ten weeks. If it has solved the problem, I am going to suggest a 5ml a day tablet, which is the dose I used to be on. xx

[bredia in reply to Helen-Melon]

They upped my dose to 30 ml a day, it seems to be helping a little bit. I go back in 2 months. Good luck Dianne