Radiation for Graves..: Hi Diaagnosed in 201... - Thyroid UK

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Radiation for Graves..

KevJenn profile image
6 Replies

Hi

Diaagnosed in 2017 with graves after a 185 hear beat. I had the added bonus of atrial fibrillation which is my main enemy to this day. It is essentially ruining my life. Also diagnosed with celiac last year but that s okay..I avoid Gluten and everything is fine there. THE AFIB continues to be a problem and two years later I am still going up and down with three methizanole treatment. I had a horrid week with atrial fibrillation and was slightly hyperthyroid on my latest blood work. I am seriously considering Radiation iodine and take my chances with hypothyroid. Has anyone hear had it done and did you feel better or worse? I suspect a lot of people who got better after it just dropped off the forum but thought I would ask.

Appreciate your time.

Kevin

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KevJenn
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ling profile image
ling

Hi Kevin, u may want to post in the HU Arrhythmia Alliance and British Heart Foundation forums as well, to cover more ground.

Going hypo will technically stop the tachycardia that triggers AF. But whether that stops the AF for all who get RAI, I am not able to comment on that.

Best wishes.

Abbey21 profile image
Abbey21 in reply to ling

Hi, I suffered with SVT which I think is a little similar to AF, I'm hypothyroidism but still got quite frequent attacks of 160/180 beats pm, I finally had a catheter ablation 2 years ago which sorted me out, maybe this would help you, hope you get it sorted because I know how this an really affect your life, good luck with it all

ling profile image
ling in reply to Abbey21

KevJenn

ling profile image
ling in reply to Abbey21

Informing Kevin of your post.

Thanks Abbey : )

pennyannie profile image
pennyannie

Hello there Kevjenn

As you probably know Graves is an autoimmune disease and as such it is for life.

It's in your blood, your DNA, and ablating your thyroid rendering you hypothyroid doesn't actually solve the underlaying problem, which is one of your immune system attacking your own body.

Living without a thyroid comes with it's own set of problems especially when you can' t easily access the appropriate thyroid hormone replacements, namely, T3 and T4, on the NHS.

I would suggest you do the research into RAI. In my opinion it is the least attractive option and this treatment can also induce thyroid eye disease. RAI is a toxic substance that you take by mouth, in tablet or liquid form, it burns out your thyroid and is also known to be taken up by other glands within the body. It is a quick fix, a 20 minutes out patient appointment, and it is appealing and being " no surgery " . It is the cheapest and most cost effective option and commonly referred to by the NHS as the treatment of choice.

I am with Graves Disease diagnosed 2003 and treated with RAI in 2005. I became very unwell in 2013/4 with what I believe were the long term consequences of drinking RAI.

I had no help, acknowledgement or understanding from the NHS, though visited, over a two year period, rheumatology, gastroenterology, and ultimately endocrinology.

I am now self medicating having trialled both T3 and NDT myself after both treatment options were refused to me on the NHS.

They both worked, and have chosen to treat myself with Natural Desiccated Thyroid and am getting my life back, by myself, self sourcing my thyroid hormone replacements and taking private blood tests to monitor my progress.

Thanks due in the main part to this amazing website, I'm getting back on track.

You might also like to take a look at the Elaine Moore website. This lady has the disease and found no help herself going through the treatment so wrote a book to help others in the same boat. She has now dedicated her time to her Foundation and website which is all things Graves for all Graves patients and their families. There are chapters on stress management, holistic and alternative treatments, diet and life style choices and is one of the leading, most respected research units into this poorly understood and badly managed autoimmune disease. It is Stateside so medical protocol is a little different but an excellent resource with open forums, so there is free exchange of information which in itself, starts the massive learning curve, you might need to take yourself on.

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