Hello everyone, not sure if this is going to help anyone but i'm having RAI treatment today at 4.00pm. I was very ill about three years ago (hospital for two weeks) following a serious thyroid storm and had block and replace that worked for a while, gradually been getting more and more over active, was referred for RAI treatment had a scan was told I needed to get it done fast! So I thought I'd drop a note on here, to let anyone who's interested, how it goes! will update later...
Hi Neil
Good luck for later. My friend had RAI twice and it worked successfully the second time.
I will be interested to hear how you get on.
Emma x
Good Luck!
Hi Neil,
I'll be following your progress. We exchanged posts 7 months ago when you were feeling good and telling me to hang on in there because I was feeling rotten ! Last time I saw my Endo he was pushing me towards RAI but as yet I'm not giving in.
Good luck and keep us updated
Christine xx
Good luck, hope it went well. Will be interested to know how you get on as I have opted for surgery but am still unsure if that's right for me x
Hi everyone, just a quick update after 4 hours of being radioactive! Feel fine - a bit of a headache but nothing really! Thanks for the comments - i'll keep you all posted with my progress.....now a glass of wine!
Thanks for posting this info. glad to hear you are feel ok. Keep us updated because I have a feeling this is the road I am going to have to take.
Take care
Emily
OK just over 24 hours in post RAI and dont feel 100% but nothing too bad. Feel a little bit tired, a bit 'palpy' and getting out of breath easily but really nothing I'm worried about!. I'll update in a day or so....or sooner if something bad happens!
I had RAI done in November 2015 , I was drinking plenty of water felt thirsty , my head felt hot every time but gradually felt much better but now I've become under active and was on thyroxine, they had very bad effect on me . I started losing hair , dry skin again , the good part is I put weight on which is my average weight , now I have stopped thyroxine and I take liothyronine tablets every other day feel better with this tablet . Let's see how it goes for u ,
Hello everyone, well its a week since I had RAI and I feel fine! no real side effects to report...a general feeling of not felling quite right and little bit tired but nothing major! It's a bit bit weird still having to sleep in the spare room and watch yourself being too close to people when you feel ok but other than that - no problems at all. Going back to get my bloods done at the beginning of May so will see then how it worked - I'll keep you all posted. But if you're having this treatment soon and are worried - don't be! it's really not bad at all!
Thanks for the update so glad your feeling ok and I hope this continues for you. Really appreciate these updates as I too might be on the road to get this done.
My biggest fear of it all is the possible weight gain when you go under active. Has this been discussed with you ??
Regards
Emily
Hi Emily, I know what you mean - but in all honesty no one has mentioned this to me! One of the good things about being over (if there are any) is that for me anyway, is that weight either falls off is almost impossible to put on! it's like being a teeneager again (without all the angst!). A friend of mine had RAI and has stuggled with putting weight but todate I haven't! I used to excersise quite a lot but since I've been over the endo told me to stop so that is also worrying me a bit! I have graves and had block and replace about 3 years ago that I thought had worked but it crept back and they suggested RAI - what about you?
HI Christine, apologise I meant to write earlier but you know being radioactive and all that! How are you feeling now?
Neil
I was for about 8 years borderline over active and have been on and off block and replace, stopped for about 3 years and then I had a relapse last February (which was not nice) all the typical symptoms and for the last year we have been trying to get my bloods in the normal range with Medication making me go under and then overactive and my weight goes up and down not by much in and around 10lbs or so... I was booked in for RAI last July but I chickened out ( Google is my worst nightmare) reading too much info!! Still back and forward getting blood test now m. I have been steady for a little while now. I'm scared to get the RAI, end up under active and then gain weight. I'm sure this sounds so silly (
Thats the one thing that it doesn't sound! Anyone on here will tell you that unless you have been ill with thyroid issues be they under, over or a mixture of both you really can't imagine what a nightmare it is! I was worried about getting RAI and it did cross my mind not to get it done and try block and replace again BUT i'm glad I got it done! I know what you mean about Google though - too much information and people tend to write more negative things than positive!
Hi Neil, so glad you're feeling ok after being radiated . I actually feel much better now than I have done since I started Block & Replace 2 years ago ! I decided to reduce the Levo myself about a month ago. I was feeling anxious/panicky all the time and so breathless when I exerted myself (just going upstairs to bed or just walking 20 yards) so I came to the conclusion that I was over-medicated with the Levo - I reduced it from 100 micrograms a day to 75 micrograms every other day and so far so good - I've had just a couple of anxious days out of the 4 weeks. Last blood results were the best I've had in a long time so fingers crossed. I see Endo on 4th April and going to hopefully stop taking Levo altogether and try the Carbimazole titration treatment and hope for remission this time. I still don't fancy RAI or surgery should I not have a remission but putting on weight if I did have RAI is the least of my worries - as long as I didn't put on more than 2 stones I'm so thin because of being so Hyper that I can afford to put 2 stones back on. I'd be more worried about having to take Levo bcause I don't think it's a medication that altogether agrees with me. Everyone goes HypO after RAI and surgery don't they ?
Keep on keeping well Neil and updating us
Christine
Forgot to ask what the urgency was for the RAI after the ultrasound ? Did you have nodules on your thyroid like me ? I've only had one ultrasound and that was in 2014, at that time I didn't need to have the Fine Needle Aspiration because although the ultrasound showed quite a lot of nodules, the blood was flowing freely through them so were "benign" nodules then. Do you know how often we should have an ultrasound ?
Hi Christine - the urgency after my scan for seemed to be high! The consultant said I 'lit up' during the scan that I needed to keep taking 15mg of carbimizol daily until three days before me scan and then to stop for at least 7 days after my treatment. I had my scan on the Monday and my treatment the following Tuesday. My scan was using a gamma camera where they inject you with a radioactive dye and have to lie very still in a giant camera with a huge metal plate about a millimeter from your nose for 20 minutes!! Quite claustrphobic but i managed fall asleep!!
OMG - couldn't do it unless they knocked me out !! I was bad enough having an MRI scan for a back problem and CT scan for another problem !
haha! I know what you mean!!