RAI Treatment

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I've had Graves disease for some 9 years and couldn't be stabilsed.  Any stress would set it off again although I even went into remission once.  I felt awful for most of the time even though on carbimazole and was unable to make plans as I'd never know how I was going to be feeling. I'd tried all the alternative methods with supplements etc. 

On 1st February I had RAI and  can only say I wish I'd done it sooner.  I went hypo very quickly with a TSH of 42 (even than wasn't as bad as being hyper) and was prescribed levothyroxine 75mg.  I quickly started to feel better and I can now honestly say I have had a life changing experience.  Even my swollen eyelids have gone and I have twice the energy I had.  If there is anyone considering it and resisting for whatever reason I can only say go for it.  You may swap feeling awful to feeling good as I have.  

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  • Posted

    I have had Graves for years as well.carbimazole swapped heart palpitations for bone pain and nausea.i feel so ill.

    They offered me RAI

    ive decided to have a thyroidectomy , because of personal reasons. I'm scared, but like you...need to take action to get my own self back.

    im encouraged you feel better on the Thyroxine. I have thyrotoxicosis  , it won't go down. 

    I feel so sick just going shopping.

    i hope to catch up with you soon, and have positive words to say.....xx

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    • Posted

      I had every symptom going and so anxious I ended up in A and E just before Christmas with a panic attack.  Don't be put off by others who want to keep their thyroid rather than to seek something permanent.  I'm sure the thyroidectomy is right for you and you will be put on thyroxine immediately as your treatment works as soon as the thyroid is remove.  I can't believe I let myself suffer so long. This site is for people who are concewrned about their symptoms.  There are many out there who had treatment and don't bother to post that they're feeling better.  

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    • Posted

      Hi Sue1247, nine years is a long time to be suffering. I am very glad that you are feeling good again.

      Like you said, many people on these forums post when they are in distress but forget to even consider giving a feedback after they are feeling better. ​Thank you for taking the time to share your experience.

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    • Posted

      I have been made to feel like I've given up/in , a bit!

      but, I know my body, I can't keep feeling like this when supplements and meds don't change my levels at all.

      my heart is struggling, and if I don't do something while I can, then if it gets worse I won't have any way of managing my disease at all.

      im taking action. 

      Yes, I'm scared, and disappointed . But I know there are people out there, like you say, who neglect to post how they feel after surgery or treatment..

      pall im certain of is that if I don't have the surgery, I don't see any way of stopping how damn I'll I feel all of the time. This disease is relentless. And because I look good, I make an effort, I feel people won't recognise I'm ill..unless I'm bleeding!!! It's showing now, the strain of trying to live with the pressure, the anxiety and nausea. I was in hospital on Christmas Day as my levels roared up unexpectedly.

      my GP said I was anxious and dosed me with Valium !!!!

      long term, I'm on the offensive , I want my life back xx

      thanks for listening xx

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    • Posted

      I just had a thyroidectomy on June 30th and home recovering from it. It's not that bad but not a walk in the park either. I chose a thyroidectomy because I suffered from Graves' ophthalmopathy otherwise I would have chosen RAI. Right after surgery my calcium levels dropped. That's a side effect of the parathyroid glands getting stunned. Doctor put me on calcium tablets and Cacitrol for a few days and it seems  to be working. I'm not feeling any tingling in my extremities. Voice-my voice got really hoarse a few days after the surgery. It is still quite hoarse and I can't speak loudly. I sound like Marsh Simpson. I'm hoping it gets better in the next coming weeks. Everyone reacts differently to surgery. One of my coworkers had a thyroidectomy and neither her calcium levels nor her voice were affected. The scar is not too bad but not that great either. I was put on Synthyroid the next day after surgery. I felt really tired the first five days and now I seem to be getting my energy levels back. My chest feels a little congested and I'm hoping this also improves. It is not a simple surgery no matter what you hear. Just make sure you can take off a good two weeks or more. Your body needs to heal. On a positive note, I noticed almost immediately the swelling on my eyelids slightly decreased a little . That'll be my next surgery-orbital decompression. Good luck to you. Make sure you get a good surgeon for your thyroidectomy.

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    • Posted

      I have heard similar Just give it time.  Mind my asking if you arein the UK? I ask as I am considering going ahead with surgery as well.

      Thanks

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    • Posted

      My surgeon is a little brusque but assures me he has done lots of these and has an excellent recovery rate for his patients.

      hes intending to leave my parathyroid glands alone , if possible, and  we are all hoping it will be straightforward.

      thanks for everyone's advice x

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    • Posted

      I had originally considered Mt. Sinai thyroid clinic in NYC but they don't accept my insurance. They are one of the few who do thyroidectomy using local anesthesia. I cannot tolerate general so I wanted to have my overactive nodule removed under local and twilight. Best of luck to you!! Please let us know how you're doing.

      hugs

      Jaye

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  • Posted

    Sue, you've given me hope...thank you xx

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    • Posted

      Jan, if your lifestyle means you can cope with the slight isolation go for the RAI - you just swallow a trablet.  No side effects at all.  I was lucky that I had a very supportive endo and that the treatment acted quickly (but then I was given a large enough dose to render the gland extinct so I didn't have to have a second round).  I had to share this as it has totally changed my life.  I'd put up with it long enough and wasn't getting any younger.  Carbimazole isn't a safe drug whereas very few people have an issue with Levothyroxine and even then it usually a reaction to the preservative rather than the hormone itself.  I've had none of that and most don't.  Eat healthy, look after yourself and go for it.  I could kick myself for leaving it so long.  

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    • Posted

      Can't have Rai 

      my eyes X 

      but I didn't want surgery ...had to decide to go for it as I'm so ill x

      i will update after my surgery on the 28th xx

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    • Posted

      Jan, I had eye disease.  If fact it was that which led to my diagnosis as my left eye was droopy.  I consulted a very eminent surgeon in the area first and he advised me to explore RAI before I committed to surgery.  The consultant felt my eye disease wasn't too bad and put me on a course of steroids as a precaution.  I always thought RAI and eye disease were not an option but it worked for me.  I actually came off the steroids very quickly too as they didn't agree with me (I have other auto immune diseases and don't react well when my system is suppressed) .  The treatment didn't make it any worse and it then gradually started to clear up and my inflamed eye lids are now normal and I no longer have a droopy eye.  Whatever you choose, a permanent solution is the only way forward or you'll spend the rest of your life on Patient UK saying how bad you feel, as I did.  

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    • Posted

      I can't do steroids anymore,my throat reacts xx

      surgery, and a positive out look ...

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