Worried about past RAI treatment

[Sunnydevon]

Hi everyone, I was diagnosed with Graves’ disease in 2003 and had Radio iodine treatment in 2005. I’ve been on levothyroxin since and apart from palpitations and being anxious (always been anxious) I’ve just muddled along and done what the docs have said re my dose. Since December I have had a tight throat and sore stomach. Seen ENT and had endoscopy and both looked ok apart from lax valve in stomach. At this time I had a copy of a letter which was for my GP from a cardiologist after ecg which mentioned my previous RAI treatment. It worried me as I didn’t know why it would be relevant? I then started googling RAI and it’s made me worry as some research has shown you could be more at risk from some types of cancer. I’m now constantly worried about it. At the time doctors told me it was harmful to stay on carbimazole and I was probably worried about my heart. I was nervous about treatment and couldn’t go through with it on my first appointment. Any thoughts would be gratefully received.

[Sunnydevon]

Thank you for your response. I’m sorry your husband had such bad health. I wish I had carried on with carbimazole but I trusted what I was told. I was just under 40 when I had treatment.

[bantam12]

As you can't turn the clock back is there any point in worrying over something you can't change. We are all at risk of all sorts of diseases and illnesses and there are always going to be scare stories about various treatments.

I chose to have RAI about 18 years ago, I'd already had surgery which failed, I've been well on Levo since. There must be many many many 1000s who've had RAI because it's been used for a very long time but nobody focuses on the ones who are well and getting on with life.

If you worry about risks you would never take any meds or have any treatments, life is a lottery for everyone.

PS I would have no worries over doing it again.

[Sunnydevon in reply to bantam12]

Thank you so much for your reply! I think if I had been really overactive I would feel differently, like it was really necessary but I don’t think I was. The Endocrinologist just said it was the best option so I hesitantly went along. You are right though, it’s done now and I have to try and stop worrying. Thank you for your positivity.

[bantam12]

As you already know I am not alone in being well after RAI, there are others on the forum who are well and happy with their decisions.

[Sunnydevon]

Do you mean these patients were ill because of RAI?

[pennyannie]

Is it really sunny in Devon, I am in Cornwall, and it is overcast and cold ! ( Could be me ) ???

I was diagnosed with Graves in 2004/5 and put on Carbimazole for fifteen months orso before I had radioactive iodine therapy, you can find further details on my profile page.

I think it is difficult managing one health issue, let alone the addition of TED and hypothyroidism that this method of treatment gives you. There doesn't appear to be any aftercare other than Levothyroxine which can be limited in returning you to optimum health.

The other issue is that of monitoring your bloods on a TSH that is not the most appropriate measure once your thyroid axis has been broken. If you feel well on your medication I am very happy for you, if not, it might help showing your doctor Professor Toft's Counterblast.

What's done is done, I too have read much about radioactive iodine, and am upset I was given no option, and like you, trusted what I was told. The reality is very different, and yes, given my time again I hope I would be better prepared to fight my corner and not leave myself open to all sorts of other health issues.

We are where we are, you in the sunshine - me under a cloud - this forum is amazing, it has helped me equip myself to get my health back on track.

It can be a bit daunting, there is a lot to take in and I found the reading and retention of knowledge very challenging, but it needs to be done in order for you to take charge of your own health,for in my experience, there is very little help elsewhere.

[Sunnydevon in reply to pennyannie]

Hi Pennyannie, it’s a bit chilly here today too. Thank you for your reply. I’ve got myself into a bit of a pickle worrying about this and haven’t helped myself reading all sorts of medical things online that I don’t really understand.

I’ve had a few health issues that worried me and I panicked a bit about the RAI in case it had caused something serious. The forum is good for advice and there are some lovely helpful people but i find it worrying if you see people saying stay away from the RAI whatever you do. It makes me feel I’ve made a massive mistake. Anyway thank you again for your reply and I hope the sun comes out for you soon.

[pennyannie in reply to Sunnydevon]

Well, to some degree I think we both made a mistake, but I wasn't given any option, were you ? Putting it in plain language I was lied to, weren't you?

Graves Disease is an autoimmune condition and is not cured by radioactive iodine ablation or surgical removal.

Graves Disease is in your blood, the only difference now is that it is not life threatening as the thyroid has been killed off and can't go overactive ever again. You may now have, other issues to contend with, like hypothyroidism and thyroid eye disease. You may be lucky, and not have any issues in which case you are very lucky.

There is a book, Graves Disease - A Practical Guide by Elaine Moore, an American lady who has this health issue - there is also a website, but you need to remember that medical protocol differs depending which side of the Atlantic you are on, and that in itself gets very frustrating realising that there are options available in other countries that we are not offered.

[shaws Administrator]

Your husband's experience is truly awful in a 'supposed to be' modern era.

[Sunnydevon]

I was told the RAI was safe and that it was the best option for me. I didn’t really use computers at that time really either,so wouldn’t have seen any online information. I wasn’t really hyper which makes me feel worse really. If I’d been extremely overactive I feel it would have been more necessary.

Anyway I will look for the book you have recommended. Thank you so much.😊

[Sunnydevon]

Hi reallyfedup123, I’m not in Cornwall. I think that was another member. I have been having symptoms of a tight throat and sore stomach which have both been looked at. Sorry to hear you are so allergic, I didn’t know that about the water in Cornwall.

[Sunnydevon]

I’m awaiting blood test results. I am on levothyroxin. I don’t have hiatus hernia. I haven’t been checked for Helicobactor Pylori recently but have in the past and it was negative. Thank you for your reply.

[morehead]

I worry about RAI giving me other cancers too.