Help Rai monday

[wendypartridge]

Having RAI on monday ,, can any one tell me what to expect , I have had GD for 3 years thanks any info would be great xx

[amala57]

Can I ask why you are having it? Is your graves not controlled by medication ? I had RAI 2 years ago and now wish I hadn't. However we are all different and some people may do well post RAI. Just think very very carefully. It cannot be reversed.

[wendypartridge in reply to amala57]

I am having it done because i have had the treatment with carb stopped carb with in months i was ill again and they dont want me on carb long time because it messes with the bodies bone marrow

[amala57 in reply to wendypartridge]

I was on carbimazole for 13 years, I had no problems with it. The only problem I did have was that every time I got a cold I would get a fever. I now think that that may have been due to low vit D! My gp kept on at me to have RAI or surgery, so in the end I gave in. I have not felt good since even though all my blood levels are "normal". I have since found out that Dr. Toft, who was president of thyroid uk, said " there's no reason why carbimazole shouln't be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occured within a few weeks of starting the first course." This quote is from an article in pulse magazine. I just wish I had known this before I had RAI!

However as shaws says, we are all different. You have to make the best decision for yourself. I wish you good luck with whatever you decide to do.

[amala57 in reply to amala57]

Sorry error!!! Not shaws, bantam 12. Appologies shaws!

[bantam12]

It's a doddle, I went to Nuc Meds department, swallowed the capsule and went home. There are some rules to follow afterwards, hospitals vary in what they advise. I more or less carried on as normal just limiting close contact with the children, I still did the school run as long as they were in the back. You should drink lots, double flush after a wee, I had no side effects and went hypo within 4 weeks which was a relief as having had Graves on and off for many many years I wanted done with it. No problems since, very well on Levo, wish I had done it sooner.

Hope it goes well and don't be put off by negative stories, you have to do what's right for you.

[wendypartridge]

Thank you , very helpful x

[Raventhorpe in reply to wendypartridge]

As bantam12 says it's easy enough just take tablet and then go home. I was told not to sleep in same bed as partner for 4days after and not to sit next to him for a few days.also had to have two weeks off work as worked with public and told to keep away from grand children for 2 weeks. Just make sure they test your thyroid levels after 6 weeks then again at 3months as you can go hypo very quickly , they left me for 6 months without a test and I ended up very ill in hospital.

[wendypartridge]

oh dear not good at all . I hope your feeling better now x

[amala57 in reply to wendypartridge]

I had the same , they did not follow me up. My tsh was 50. I am now stable enough but have very high Hashimoto (TPO) antibodies. This has affected my thyroid eye disease and I have to eat only gluten free food, probably for the rest of my life.

[Raventhorpe in reply to amala57]

It was 7yrs ago when I had Rai and because they didn't test when they were supposed to I ended up cycotic put in mental ward till they realised it was thyroid level so transferred to hospital in there for 10 days while they got levels right enough for me to go home. I thought everybody was trying to kill me, never want to go through that again, it took me 2yrs to get over. That's why I warned you to make sure they checked levels as would not like to think anyone else had to go through what I did.

[wendypartridge in reply to Raventhorpe]

OMG that's terrible

[Annie007 in reply to amala57]

No follow up with me either!

One of the reasons I have no confidence in my endocrinologist 😏

Time again....I'd be more informed; and if I could know how I feel now, wouldn't have had it done

Anne

[wendypartridge]

Thankyou ladies , how do i make sure on the follow-up ? pretty scary

[bantam12 in reply to wendypartridge]

Wendy don't worry, if for some reason you don't have a follow up appt with your Endo just get bloods done at your GP.

[Annie007 in reply to bantam12]

Agree with bantam12

Find out what tests you need and the timings and make sure you get them done

I was very preoccupied/naive at the time of my RAI, but I can't waste my time looking back, just be more prepared for tomorrow

Anne

[Raventhorpe in reply to bantam12]

Don't worry, I was very naive when I had mine done endo said see you in 6mths for bloodtest and I thought that was it, thou went to gp repeatedly in the 6 months after Rai with what I now know was hypo symptoms she gave me antidepressants.if your aware that you could go hypo then you can ask for thyroid to be tested.there are guidelines in place from royal college of physicians.extract from document- Rai in the management of benign thyroid disease clinical guidelines state follow up checks should be performed at6-8weeks with a further set of thyroid function tests at12 weeks, follow up should be continued in patients who remain euthyroid with measurement of thyroid function tsh and t4 at 6/9 and 12mths and there after annually is essential to detect late onset hypothyroidism you can always refer to this if you have problem getting follow up bloodtest. Hope this helps.x