Radiation treatment for Hyperthyroid

[Taraharp]

I have been taking carbimazole for 4 years now for hyperthyroid, my latest blood tests are normal. Last year I had left ventricular problem with low ejection fraction but this is now low normal. I take ramipril and the thoughts are that it was a virus that affected my heart muscle. The thyroid doctors now want me to undergo radiation treatment for my thyroid. I presume this will result in me being hypothyroid and needing thyroxine. I have always been symptom free from the hyperthyroid so am unsure what to do as I dread having an under active thyroid and also I do not like the idea of radiation. Please advise me if you can. Thankyou

[SeasideSusie Remembering]

Taraharp

You don't have to have radiation treatment just because the doctors want you to. If you are fine on Carbimazole and want to stay on it then do so. I have an acquaintance who has been on it for many years and is doing very well. Don't let doctors bully you into doing something you don't wish to.

[Taraharp in reply to SeasideSusie]

Thank you for the reply but their issue is my heart failure last year and they say that being hyperthyroid affects my heart but I do not have atrial fibrillation and never had. They say that only by radiation treatment I can be cured!

[SeasideSusie Remembering in reply to Taraharp]

But if your results are normal then it's controlled by the Carbimazole and you're results are not technically hyperthyroid.

They say that only by radiation treatment I can be cured!

You may be "cured" of the hyperthyroidism but you will very likely become hypothyroid with all the problems that brings. Read the forum and you will see how many members can't get appropriate treatment for their hypothyroidism because doctors will only look at TSH and not the thyroid hormones so they are left undermedicated and ill.

[Taraharp in reply to SeasideSusie]

Thank you for your reply Seaside Susie, it helps to have some support as whenever I look online everything points to having radiation but this treatment seems to be a bit hit and miss.

I will wait until I see my cardiologist again. Thankyou

[greygoose in reply to Taraharp]

Being hypo is equally bad for the heart. But, doctors want to zap your thyroid because it's easier for them, not you.

[Taraharp in reply to greygoose]

Thankyou for the reply. My thoughts are also that once my thyroid is gone there is no return. I did not know that being hypo was bad for the heart. Thankyou again. I feel I have made my decision.

[greygoose in reply to Taraharp]

You're welcome.

[SilverAvocado in reply to Taraharp]

Yes, I suspect by 'cured' your doctor means out of their hands and into treatment for hypothyroid instead.

[pennyannie]

Hello Tara

Why were you put on Carbimazole some 4 years ago ?

Are you with an auto immune condition such as Graves Disease ?

If so, Graves is an autoimmune disease and as such, it's for life, it's in your blood and DNA.

I too was told I would be " cured " in 2005 and had RAI 1-31 thyroid ablation, and am now managing my Graves, plus thyroid eye disease ( a known side effect of this treatment that you may not have been told about ) and hypothyroidism.

Swopping one set of symptoms for another isn't necessarily the best option, and if you are happy on the anti thyroid medication, I read of people on this site who have stayed on ATDs for years with no health issues.

I too was fine on Carbimazole but told I couldn't stay on it and that ablation was the treatment of choice. I took this to mean it was in my best interests but no, it's the cheapest most cost effective treatment for the NHS but it is not necessarily In your best interests. It's a quick fix, a twenty minute outpatient appointment and a discharge back out into primary, freeing up another slot for another out patient waiting list time target.

Living without a thyroid comes with it's own set of problems especially when you can't access the full spectrum of thyroid hormone replacement on the NHS if and when you need them.

The thyroid is a major gland responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, and can be likened to being the conductor of all your body's orchestral parts.

Please do your research and there is an article by Professor Toft, the endocrinologist, that needs to be read :- Thyroid Hormone replacement - A Counterblast to Guidelines.

It is on this website, but I'm sorry, I don't know how to resurrect the link for you - on the third page, a third of the way down he writes :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 131 or surgery in patients with Graves disease, irrespective to age or number of recurrences of hyperthyroidism."

Of all the treatment options, from what I have read, staying on ATDs is the best option, followed by surgery and very, very, lastly RAI treatment, which is a toxic substance and known to effect other glands within the body.

Personally, if I could have my time again I would have stayed on the ATDs.

I am now self medicating and buying my own thyroid hormone replacements as I found no help or understanding with my health issues that slowly deteriorated the longer I listened to my doctor.

I know this must all come as a bit of a shock, as I too thought the doctor must know best -

This site has helped me get my life back, please read all you can, and you do not have to agree to anything if it doesn't sit right with you.

[Taraharp in reply to pennyannie]

I did not realise that there were so many problems associated with hypothyroid. I had a scan which said I had a toxic nodule which they say does not go away hence the carbimazole. As you say the doctors say the only way to cure me is to have the radiation treatment. At my last appointment when my blood results were just within normal Ibws happy to be discharged and followed by my go by the hospital doctor then rang me to say he had been advised by the consultant that I would need treatment in the future meaning radiation due to my heart condition. I said that I would wait and say but as you say they do put you under pressure. They also told me of the severe side effects of long term use of carbimazole.

I thank you again for your reply and others as they reassure me that I have made the right decision.

[SilverAvocado in reply to Taraharp]

You can get the Counterblast paper here. For me it comes up in a small box. Hopefully you can find a good way to read it.

rcpe.ac.uk/college/journal/...

[pennyannie in reply to SilverAvocado]

Thank you - I really need my niece to show me how to do this - I know I keep making excuses for myself - maybe need to tad more NDT !!!

[ling in reply to Taraharp]

Tara, what did they say are severe side effects of long term use of carbimazole?

[Taraharp in reply to ling]

Mainly due to low white blood cell count and therefore resistance to infection. Of course this can be checked with blood tests

[ling in reply to Taraharp]

The risk of that is always there when you're on carbimazole, with the highest likelihood of it happening in the first 6 months of starting the carbimazole.

I read above that your hyperthyroidism is due to an active nodule/s. Maybe you will find this article useful -

Local thyroid tissue ablation by high-intensity focused ultrasound: effects on thyroid function and first human feasibility study with hot and cold thyroid nodules

ncbi.nlm.nih.gov/m/pubmed/2...

CONCLUSION: HIFU is a safe and effective method to treat benign, solid, complex, hot and cold thyroid nodules preserving thyroid function.

The procedure is already being offered in hospitals around the world; in the UK as well I believe.

[Taraharp in reply to ling]

Interesting study, thank you for the link I will bear it in mind.

[SeasideSusie Remembering in reply to pennyannie]

Excellent reply from a Graves patient's perspective pennyannie

Here is the link to Dr Toft's article if you'd like to make a note of it

rcpe.ac.uk/sites/default/fi...

Taraharp - link to article Pennyannie mentioned.

[pennyannie in reply to SeasideSusie]

Oh, you and the other " guys " saved me a couple of years ago now - and I am so grateful to you all and feel indebted.

So I just pop up with my " tuppence worth " when I think I can offer something relevant.

Thank you for the link, I need to learn how to do this - I think by now I can recite Toft's words !!

just seems so sad that those who are in a position to change the system can't read and prefer dogma.

[SeasideSusie Remembering in reply to pennyannie]

Your tuppence worth is very valuable, please do keep on posting, nothing like passing on personal lexperience

As for the links, you just copy the URL from your browser bar at the top and then paste it into your reply.

[pennyannie in reply to SeasideSusie]

I'm with dyslexia and just reading instructions sends me into a spin - ( throw back to school days ) so I'm a practise makes perfect " kind of a gal " - I have nieces but they go too fast with those little fingers, , and actually can't explain in my logic, what they are doing - they just do it, whilst I seem to want to know how it all works ?

So, have just learnt what the URL stands for -

I tend to copy and paste using scissors and sellotape - let's all have a smile - as I don't think I've any of them hanging around on this laptop either !!!

Thank you for your kind words and continued support of this amazing website.

[SeasideSusie Remembering in reply to pennyannie]

My son is dyslexic so I am used to doing certain things for him and understand where you're coming from

I don't "do" laptops unless I use a mouse - can't be doing with those fingerpad things you stroke (very technical term ) and my laptop died so I just use my PC now (or read stuff on my tablet).

Are either of these any help

wikihow.com/Copy-and-Paste-...

computerhope.com/issues/ch0...

[pennyannie in reply to SeasideSusie]

You are a " star " in every sense of the word - thank you so much.

[SilverAvocado in reply to pennyannie]

Pennyannie, if you use your mouse to click and hold on a word it will be highlighted with a block of colour around it. This means you've selected the word!

Then click on it with only the right mouse button and a little MENU should pop up. This is a white box with a list of options in it. There are several things you can do to this word, for example DELETE it. One thing you can do is COPY . This means your computer is holding onto a copy of that word, and you can tell it to PASTE the word somewhere else, which means put a new copy of it somewhere else.

You can try out doing this while writing a comment on this forum.

1)Try to SELECT one of your words by clicking and holding on it until you see it is HIGHLIGHTED.

2) Then try to right click and hold it to see the MENU pop up.

3) Choose COPY from the MENU. The word you picked is now stored on your computer.

4) Right click and hold your mouse somewhere on the page where you're allowed to type things. You will see another MENU pop up and PASTE will be one of the choices. Click on PASTE, and you should see your word appear!

This sounds like a lot when you see it written out, but once you get used to it it feels quite simple. This makes writing emails or anything else easier, because you can edit your work easily. If you write a paragraph but then want it to go at the top of the email instead of the bottom you can COPY and PASTE the whole thing and put it wherever you want.

There are lots of other things you can do on the computer by learning about HIGHLIGHTING, right clicking to see a MENU, and COPY AND PASTE, so it is worth giving it a try. Now that you know what the things are called you might be able to get your nieces to show you how to do each thing on your own computer!

I hope this is some help! Experiment and mess around with these things, you've got to give your hands practice in doing things and it's the hands that learn it more than the brain.

[CurliGirl in reply to pennyannie]

Hello PennyAnnie,

Wow, I found your reply here very useful and has confirmed what I feel in my gut about my Hyperthyroid (Graves). I have resisted RAI and my condition is very well controlled with carbimazole. I have never had any of the symptoms associated with Graves and only found out that I had it by accident following a routine blood test. Going hypothyroid (following RAI) scares me to death but the nurses & consultants are very blase about this and have tried to persuade me that I can have thyroxine and all will be fine - your reply confirmed what I suspected and that it's all about NHS finances and what's easiest for the them NOT me. Many Thanks for sharing your story - it has helped me lots!!

[pennyannie in reply to CurliGirl]

Hello there CurliGirl

You might like take a look at the Elaine Moore website.

This lady has Graves Disease and went through RAI in the late 1990s. She found no help within the system so wrote a book to help others in the same boat.

I'm not sure that we are any further forward now, and in some ways I think we have gone backwards.

She has now a Graves Foundation in the States, and works full time researching and advising on all things Graves. It is stateside, so medical protocol maybe slightly different but it is an invaluable research platform, much like this amazing website.

There is an open forum and definitely worth dipping into if you haven't already.

[Greekchick]

Hi Tar,

My endo has a patient on Tapazole now for 11 years. If you do not have AFIb, have acceptable blood work, and are well controlled with no liver enzyme issues or frequent infection, you may be best staying where you are. I became resistant to Tapazole after 2 years myself and had other issues precipitating a TT - otherwise I would not have had the surgery.

Have you been tested for Graves? If not, please do get tested - RAI is not recommended for those with Graves and you will face great difficulties afterwards.

I concur with the others who have answered you and wish you all the best of luck.

[Ossuryak]

Try and get your stress levels down , meditation,tranquil music playing,massage, or what ever makes you relax . It all depends on what condition your heart is in as the last thing you want is a thyroid storm. I have had Radio active iodine in 2012 to take out my thyroid because of heart problems ,carnt say I feel great but having heart problems isn't good either. Have you tried Ashwaghanda. And I would get a second opinion from cardiologist and endocrinologist. Thoughts are with you.

[Summer64]

When I had Grave's I was put on antithyroid meds but was told I mustn't stay on them for more than a year. That was 2005. I wonder why it's different for you. Is it a post code lottery thing again? I deeply regret having the radiation. I'm fine if I get my T3 added in but just look at the issues we are having with that now.

[210155 in reply to Summer64]

It seems to depend on which Health Trust you're being treated in. I have Graves and was put on block & replace for 9 months and then told that if I relapsed I would have to have radioactive iodine. I know of people in the neighbouring Health Trust who have been on carbimazole for years. They just don't seem to know much about it as my endo confirmed when I asked him about what I could do to help, e.g. going gluten free, etc.

[Taraharp in reply to 210155]

I thought that continuing with meds’ was the cheapest option on the nhs because if you need thyroxine that is also a cost.

I have certainly felt under pressure to have the radiation but my choice is clearer now thanks to this website. Thank you for the replies

[pennyannie in reply to Taraharp]

Hey there,

Well if the meds you referring to are thyroxine they are dirt cheap.

The ATDs are much more expensive and it requires out patient appointments and follow ups and some continuity of care from the hospital which over time, has a much greater cost to the NHS.

[cazmania7]

So gutting reading all these comments. I was hyper and told the carbimazole medication CANNOT be taken for life as it is damaging and was told I should have the radio active thing. Now I am under and feel half dead and live a half life. I am due to start NDT next month which I pray will hope but boy, reading this, if I knew I could have stayed how I was I would have!!!! My life has been stolen. Best of luck to you with what you decided. Everyone is different and your experience may be fine whatever you choose

[Taraharp in reply to cazmania7]

Thank you, I will try to continue with the meds then and have discharged my self for now hoping that my blood tests do not get too bad. I hope you feel better with the Ndt and you will stabilise.

Thank you again for your reply

[Gingernut44]

Please don't be bullied into having RAI treatment - I was because I was told I couldn't stay on Carbimazole for more than a year. The mistake I made was thinking they had the best intention- yes they did but for them not me. I feel the same way as @Cazmania7, they have stolen my life and are quite ambivalent about it. Wait to see what the Cardiologist says before you make any decision

[Taraharp in reply to Gingernut44]

Thankyou I will wait, however I am not so sure that Cardiologists know about thyroid issues.

[Gingernut44]

Probably not but they will know more about your heart issues that an Endo

[Bible1000]

Hi I had it done 4 years ago I have cancer not related to my thyroid. Wish I had left it alone, I take thyroxin but it a roller coaster. After all this time. I was advised to have it done as my thyroid was high. Should have listened to my nagging doubts. D x

[Thomas1922]

I had Graves disease and had sub total thyroidectomy in 1978/9. I was left thinking all was okay and was not seen again and on no medication. Around 1995 I was told I was overactive again and went for the radiation treatment. I have never felt really well since. I wish more information had been available in the 1990's but sadly there wasn't. Look into everything you possibly can before undergoing treatment.