RAI on Wednesday : Had RAI on Wednesday and now... - Thyroid UK

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RAI on Wednesday

LilacBulldog
LilacBulldog

Had RAI on Wednesday and now have a really bad sore throat like never before and couldn’t sleep last night for coughing to almost being sick. Got worse as the day has gone on today and dreading trying to sleep tonight. I did have a cold at the start of the week so I don’t know if it’s that or a side effect from the RAI. RAI to treat graves after about 5-6 yrs off and on carbimazole so I didn’t want to delay the treatment because of a cold and they said it was fine at the hospital. Is this something I should worry about or just the cold taking hold?

21 Replies
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As you had a cold it's probably connected with that rather than RAI but if you are worried see your GP.

I had no side effects from RAI at all other than a bit more tired.

I had a sore burny neck and sore to swallow throat after RAI, cleared up after a few weeks. You glands are probally raised too with it with a cold and after treatment. Obviously if it gets worse get it checked out.

I felt very fatigued for a while after and make sure if you feel really unwell a month after make sure you get some T4 soon. I dropped very fast and found I was very hypo should have been treated sooner for that. Another thing make sure you take Vitamin D and B12, look for advice on here for taking it and amounts when you go hypo.

I didnt get any info like this last year and have suffered as a result, this forum will give you allot of support.

Take care x

Thanks for the replies. I think it’s probably a bit of both that’s making me feel ill. Just had another sleepless night coughing. Just bad timing I guess getting a bad cold at the same time. I already take a blue capsule for vit d but have never had anything for B12. I’m getting bloods done after 3wks and seeing consultant after 4wks to check how things are going. Can I ask is this going to change my life for the better? I keep saying this time next year I’ll be a new women but maybe it’s wishful thinking!!!!!!

After one of my RAI scans (for cancer, not graves) I had a really sore burning sensation, and it impacted my sleep for several nights.

I also was a bit congested, so wondered if they were connected.

On the other hand, the RAI is supposed to be burning and destroying thyroid tissue, so it may just be that. That's exactly what mine felt like.

I was in bed the whole time I had RAI, and ended up treating it like recovery from an operation. I think that helps with the expectations. Don't expect to be up and about and completely fine, take care of yourself and be aware it's a substantial intervention and you're putting your body through a huge shock.

When I had my higher dose of RAI as an inpatient for 4 days the guy in the room next to me didn't sleep for the whole process - they had a library of horror films and he was up all night watching. On the other hand I was lights out by 7pm each night. It's a substantial treatment so it's kind of just waiting it out however you can manage.

I didn't have any throat problems when I had my RAI for graves just a bit fatigued, there is a nasty bug going round that's causing very bad sore throat and bad cough so maybe it's the two things combined that making you poorly but if it doesn't improve perhaps have a word with doc.Do make sure they check your thyroid levels regularly as I also went hypothyroid very quickly which wasn't picked up on and became very ill. There's lots of great people on here with a wealth of experience and will be able to give you support when needed. I wish you well.

What sort of a comment was that last reply? I decided after years of battling to get this under control to have RAI. It’s done. I just wanted a bit reassurance that’s all. I also have diabetes insulin dependant and have found it very hard having both diabetes and graves and I’m hoping if my thyroid problems get sorted it will help with diabetes. My endocrinologist is fantastic and very caring and it was advised to be the best course of action for me now. They advised it about 2 yrs ago however at the time my mam had just been diagnosed with lung cancer with only a few months left and I didn’t want to be isolated from her so I opted to go back onto carbimazole but when they tried to wean me off again my TSH went straight back down to 0.01 so here we are. 🤷🏼‍♀️

It all depends on how well your resulting hypothyroidism is treated. I don't know what the relationship between diabetes and thyroid is, apart from the fact they are both autoimmune. You'll still have the Graves antibodies (if you had them before), but at least you won't have hyper attacks, so you should feel a lot better one you recover.

Hi

Don't worry .. we are all very different . 😁

I imagine you've had loads of time to research this disease and make a clear decision based on your knowledge.

I have Graves' disease and I had it very severely too.

My GP told me to either have RAI or Surgery to remove my Thyroid but

I wasn't happy with that, so I found myself an Endocrinologist and he helped me by prescribing Carbimazole and i quickly got my levels

lowered but i was afraid , very afraid of going into HYPOTHYROIDISM

but he assured me we had it under control.

I became EUTHYROID .. that was in 2014 and I've stayed that way since🙏

Not by accident I may add... but by Adressing my Faulty Immune System

with supplementing all that my out of control Thyroid had robbed me of whilst i was in the worst state of Graves' disease .

It's worked. Many people though like you have chosen RAI or Surgery and have gone HYPO but have managed to control that.

I'm sure your sore threat is just an after effect of your treatment and hopefully it will soon dissipate.

good luck

luv Mx🌹

CJ183
CJ183
in reply to madge1979

Hi Madge 1979., just reading your recent reply to lilac bulldog about her thyroid removal . You mentioned that you had addressed your faulty immune system with supplementing all that your out of control thyroid had robbed you of during your worst stages of Graves disease ! I am just wondering if you would be willing to talk about what you did to address your faulty immune system ? I would be interested to know as I have been thinking about getting some tests done (immune panel tests) . I have Hashimotos . Thanks for reading, love CJ 183 .

dusty2
dusty2
in reply to LilacBulldog

If you still feel the same tomorrow you could phone the hospital to check with them. I expect you will have been given the paperwork with advice on what you can & cannot do & the phone number of who you should speak to if you need advice should be on it.

I just had a metallic taste for a day or 2 after RAI & a bit fatigued.

I would just ignore the previous comment as it is not being helpful in any way & just tactless.

Hi there. I had RAI two years ago to treat Graves that kept recurring. Same as you I guess. Yes I did have a very sore throat for a couple of weeks and the consultant wasn’t surprised as it can be a short term side effect after treatment. I did research the RAI treatment and I was Ok to have it rather than having Graves that kept coming back despite treatment. You will be carefully monitored now and as soon as your levels rise( they will!) they will start you on levothyroxine. It takes a while to get the levels right, as it does for carbimazole, but it will get sorted eventually. I can honestly say I feel OK now but of course will be taking the thyroxine tablets for ever.

There are lots of people on this form who have problems but luckily in the main it’s worked fine for me. Good luck!

Thanks for the kind words. Yes I do have the antibodies aswel as a multi nodular thyroid. I am in no doubt that I’ll end up under active which has been my concern as I don’t want to put on weight. I never did get the weight loss side effect of over but I’ll probably get the weight gain of under lol. I know I’ll take thyroxine for the rest of my life but it would be carbimazole otherwise and that wasn’t working. I just want to feel better in myself. No racing heart, sweats, anxiety, buzzing then crashing amongst others. I’ve always found if graves out of control diabetes is good and vice versa. I know they not connected but metabolism and eating plays a big part. Just want to get thyroid sorted and then just concentrate on the diabetes but again maybe wishful thinking. Still don’t know if this throat is due to RAI or a cold. I’m swaying towards the RAI as I’ve never had a sore throat like it before almost struggling to breathe when I start coughing. Hardest part is trying to keep distance from my 2 bulldogs as they don’t understand they can’t have cuddles at the moment 😩😩😩

I can see where you are coming from with the Graves and Diabetes, before I had RAI the carbimazole stopped working and my appetite was out of control. My blood sugar would drop so quickly due to Graves making me so hungry, so this would cause a spike in blood sugar levels. I did not have much choice as after years on and off carbimazole it had simply stopped been effective. I had a slight burning sensation and dry throat but no coughing.

I work in a pharmacy and there is a nasty bug going around causing a very bad throat and coughing. some have even lost their voice. We are certainly getting above average customers coming in with concerns over the severity and duration of symptoms. Try and drink as much as you can to flush both out your system. The worst part is though is to feel unwell and not to be able to cuddle your pet. This was an ongoing concern with me as to how to explain to my aging cat why she could not sit on my lap. Except you need to take it easy for the time being and look forward to those cuddles from your Bulldogs.

Hi LilacBulldog. Are u feeling better?

God bless you

Thanks Ling, Yes I think I am. Seem to be getting over this winter flu thing. Still have a sore throat and feel quite sleepy but better than I was. Still not sure if it was effects of the RAI or the flu/cold. Keep waiting for the miracle that’s going to happen haha. I’ve lost a couple of kg which is always a plus but maybe due to being off my food when not we’ll. Appointment with the consultant came through for 14 feb. Lovely way to spend Valentine’s Day. I’ll have my bloods done the week before which will be 4 wks after treatment. See what the situation is then ????

Hi LilacBulldog, I wanted to know how you were doing?

I had RAI 3 days ago for Graves disease, I am also a type 1 Insulin dependant diabetic, well controlled. I was also previously on Carbimazole for 3 years - went into remission twice for a month each time and then it came back. Quite interested to hear how you are getting on now?

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