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Radioactive Iodine Treatment

Posted , 12 users are following.

jessm014
jessm014

Hi everyone,

I'm wondering if any of you have had this radioactive iodine treatment and how it affected your thyroid and body in general? I was diagnosed with Graves in April of 2014 but was told this had been ongoing for at least a few years. I haven't recieved any form of treament.. I tried Tapazole and got all the side effects so my doctor said she didn't want to try any other kind of medication as my body seemed to be very sensitive, now she's telling me this iodine treatment is my only option. I'm nervous about it because I was told having this done may not even help with all my symptoms but will cause me to go from hyper to hypo.. it sounds odd but I'm just getting used to dealing with my body the way it is and am nervous about the changes and symptoms that would bring on. Any advice you guys have would be VERY helpful! Thank you thank you!!

 

0 likes, 18 replies

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  • Sue1247
    Sue1247 jessm014

    Posted

    I'm also consdering RAI as I'm currently stabilising from the third attack of Graves.  It's become very unpredictable and debilitating and I don't want to spend the rest of my life wondering when it will come back. again, which it will if left untreated.     I would  be very interested to hear from people who have actually had the treatment rather than those who just have an opinion. 
  • Nisee
    Nisee jessm014

    Posted

    Hi Jess,

    I've read many bad reports of RAI, I have refused it myself.  People have been very ill afterwards.  I'm following an autoimmune diet to reverse my condition.  The medical profession don't really believe that diet can change things but our immune system is mainly located in the gut and if we heal it, our immune system can begin to heal.  

    Got to go to work now, you can send me a private message if you want to find out a bit more about it.

    All the best,

    Nisee

    • Sue1247
      Sue1247 Nisee

      Posted

      Nisee, I've tried all the diets but they are not helping me.  I would prefer to take a natural route but it isn't helping.  As I said in my previous reply.  I would prefer to hear from people who have had the treatment rather than ones who only have an opinion based on hearsay.  . 
    • Nisee
      Nisee Sue1247

      Posted

      Hi Sue, I guess we can but try.  On the autoimmune protocol you have to cut out all dairy, eggs, grains, glutent, legumes (beans peas etc), nightshades (tomatoes etc).  I am in the process of trying, I have read many good reports of changed lives, maybe it's hearsay until you experience it personally, but I would rather try. Healing the gut seems to make sense because over 90% of your immune system is based there.
  • dawnemma
    dawnemma jessm014

    Posted

    Hi, I have had the RAI treatment, I had this done on the 12 Feb, apart from the inconvenience of staying away from people for a couple of weeks, I can say that I had a few sweats and thirst but that was really all, I was and still am on a load of steroids as my doctor was concerned with the graves, and it affecting the eyes, touch wood everything seems ok, I had a blood test done four weeks after treatment and they came back satisfactory! I have to have another test 1st April as I have to see doctor at the hospital on the 8th April. To be fair, I actually feel a lot better, I feel more myself after such a short time already, I heard bad things about this treatment as well and was anxious but everyone is different, and I can only give you my results and experience, I hope whatever you decide is right for you, and gives you the results you need. I was diagnosed in July last year and to be honest this treatment was really quick for me to deicde and no matter what meds I took they couldn't control the thryriod, one minute over next under in a matter of days, it was madness, fingers crosses this has really helped me. I hope this kind of helps you, good luck. Dawn
    • jessm014
      jessm014 dawnemma

      Posted

      Hi there,

      I'm so glad to hear things are getting better for you and that the treatment has helped! You're all so right in pointing out that everyone is different; we all have very different experiences with the disease, different symptoms and treatments have different results for all of us but just hearing that it does get better makes a world of difference for me. Thanks so much for your response, I'm still considering all the positives and possible downsides of this treatment but this definitely helps!

       

  • blackberry
    blackberry jessm014

    Posted

    Hi Jess

    I understand how you feel about getting used to your body and the changes you are experiencing.  It can take a while but you will find a new balance.

    I was diagnosed with Graves in July 2013, I took propylthiuracil (PTU) which reduced my symptoms, then had a thyroidectomy in Dec 2013.  This means I now take synthetic thyroxine forever, but my TSH levels should be fairly stable long term.

    I did not consider the radioactive treatment at the time as I was pregnant so it was not advised, and I didn't like the idea of  eating radioactive material.

    My understanding is that carbimazole is the usual treatment of choice for Graves disease (PTU if you are pregnant)  and then if you don't stabilise on this, radioactive or surgery are the treatments.  Surgery sounds drastic but actually it wasn't too bad, I have got used to it.  After both surgery and radioactive treament, you are right, you become hypo (which seems crazy after being hyper!) but hypo is much easier to treat as you just take thyroxine tablets.

    It took my body a while to adjust, but a year on I feel much better than I have done for several years.

    Another friend of mine with Graves did not want any medical intervention and has successfully treated herself by changing her lifestyle - becoming vegan, doing meditation, avoiding environmental toxins as far possible as these can interfere with the immune system.  Her endocrinologist has supported her through this, though I imagine most doctors woudl rather treat medically.

    I hope this is of help to you.  You're not alone and it will get better.

    All the best, J

    • jessm014
      jessm014 blackberry

      Posted

      I'm so glad you're feeling better and it's great to hear about your thyroidectomy experience, my doctor hasn't mentioned much about it so I honestly haven't taken much time to consider it. Was it difficult being pregnant with graves? I'm curious how this would affect your body and symptoms. It's so interesting how different methods work for different people, did your friend have a lot of physical symptoms or was it a bit easier for her to keep this under control through diet change and meditation? I find I have any and every symptom associated with the disease. Yes this is a good point, my doctor is very "no-nonsense" and really doesn't have the time (or maybe she doesn't have the knowledge) to discuss these more natural life changes as treatment. Thanks so much for this, it's very helpful!

       

    • blackberry
      blackberry jessm014

      Posted

      Hi  Jess, Can I ask which country you are in?  I'm in the UK and I've never heard of tapazole - they use carbimazole and PTU in the UK.  Maybe worth asking your doc about those?

      My friend that used lifestyle change had less severe symptoms, but also the disease can go into natural remission anyway so it's impossible to tell if she recovered due to her changes or just a natural remission of the disease.  I think most docs are pro-medical treatment but I think looking at lifestyle alongside that can only help, eg I stopped drinking chlorinated water, tried to do meditation, be kind to myself, etc.

      Sadly I lost 2 pregnancies before the Graves was diagnosed and I lost another one 6 months later.  I understand that if the Graves is well-controlled it shouldn't cause any more likelihood of miscarriage.  If it is not well-controlled it can cause micarriage, premature birth and other problems.

      I found the British Thryoid Foundation website helpful but basically have done a lot of research myself as the docs don't have much time to explain things and GPs have limited knowledge.  Are you seeing an endocrinologist?  The good news is that once your levels are well managed I think you should have improvement with symptoms.  Mine have mostly all gone (I had palpitations, breathlessness, swollen ankles, bad digestion, weight loss, swollen eyes, irregular periods, mood fluctuations, headaches).

  • Sick_is_no_fun
    Sick_is_no_fun jessm014

    Posted

    Same thing happened to me this past end of January. I got nasty side effect to Tapazole. My Endo want me to do RAI or thyroidectermy. I have Graves' disease, so I just don't believe it is a solution for me. I was very hyper, couldn't walk. After cleaning the drug out of my system, I retake Tapazole for less than 1.5mg daily, and try my best to do what I can, like supplements and herbs. Now I can go up/down stairs, do some light housework. I am getting my energy back. But I know I am not out of the woods yet. And I understand everyone is different. I just want to say if you really feel uncomfortable to do RAI now, there is an option out there to try. And do it when you are ready. If you do it now, you are forever done, no regret.
    • jessm014
      jessm014 Sick_is_no_fun

      Posted

      It's interesting that you had these side effects as well but then began taking Tapazole again, did the side effects come back once you starting retaking it or was the doage low enough that this wasn't an issue? My doctor was very quick to get me off the medication and I haven't taken anything since.. she didn't even want to try anything else. I hear ya, it can be so hard on your day to day life.. I've never met anyone in person who also has Graves and people around me brush it off thinking it's an easy disease that just makes you have low energy but I have so many physical symptoms as well. I've actually been to two different neurologists for more testing and have an MRI coming up to check for multiple sclerosis because my symtoms are very similar to that disease. What kind of supplements and herbs do you use? I'm glad that your energy levels are getting better, even a small bit of improvement goes a long way! You're so right and I think for me the RAI treatment will be my very last option.. I would really like to try alternative, natural methods before jumping into that. I know it's different for everyone but I've read a lot about the risks and it makes me far too anxious about it. Thanks for your reply, it means a lot!

       

    • Sick_is_no_fun
      Sick_is_no_fun jessm014

      Posted

      I know. I never thought about going back to Tapazole. My brother email me "can you take a lower dasage?" I said "I've been there, I won't go back again. It was hell." But I was getting worse. So I dared myself to take 2.5mg Tapazole. Rash again. Days later, I started to take 1.5mg. People said Carnitine helps. But have to be high dasage. My body is very sensitive. While I was taking 25mg Atenolol (which covers palpitation), over 2000mg of Carnitine made me palpitation. Now as I cut down Atenolol to a low dosage, I can only take 200mg. Higher than that I'll have palpitation. I take most vitamin and mineral I can take. I avoid iodine which makes me feel worse. But again, as I cut down Atenolol, the problem exposed. The supplements gave me palpitation too. Adjustment again. I have to say the whole process is not easy.
  • kitykat14
    kitykat14 jessm014

    Posted

    Jessm014, trust, i know just how u feel, because i felt the same way.

    I was scared to death when my doctor told me that RAI was my best

    way to go for treatment, for me! Surgery was'nt a option. I gotten RAI, and it' ok

    It was scary, I did'nt know what to expect. It's a very tiny pill I took, after I swallowed it I could not be around my family for a couple of days, now that was the

    hard part for me.....but it's been what....2yrs now and i feel just fine, my doc said i do not have to take more.....after that you have to take Synthriod, which is another small small pill, but i think i gotta take that for the rest of my life, i did not gain a lotta wgt, i got my wgt back)thank god, i changed my eating habits, and i exersise

    more. Oh by the way Synthroid is a Hormone replacement pill...that's all, will not harm your body, if u take it right....hopes this help

    Cathy

    more

     

  • suzanne39910
    suzanne39910 jessm014

    Posted

    Hello

    I am not sure if you have already opted to follow through with he RAI treatment but I strongly urge you to get a second opinion and think this through before you go through with this. This treatment may work for "some" people but for Graves patients if can exacerbate your symptoms and make you feel worse!! I had RAI treatment in 2008 due to a specialists advise because of a thyroid goiter. I was never properly diagnosed with Graves Disease at the time. I was given too much Radioactive Iodine and never give thyroid medication and told to call when I started feeling tired. The opportunity to call never happened. I started falling asleep while driving, hit a car in a parking lot, could not stay awake, had no idea who I was or anyone else was. My TSH level was greater than 150.00 - the lab could not even give the doctor my correct level because it was so high. The doctor did not know how I was walking or functing. I dealt with this for 2 years before finally going to the Mayo clinic where they properly diagnosed me and brought my levels back within range. There are 2 years of my life I have no memory of. I had a hysterectomy during this time due to the RAI tx, I now have sleep apnea, I take adderall to help me stay awake during the day and trazadone to help me sleep at night. I am half the person I was before this treatment. Once you do this treatment you cannot REVERSE THIS. This is an aggressive chemical treatment you are putting in your body and you will never know what it is truly damaging. If I had to do over again I would have opted to have the surgery on the thyroid with no chemicals being involved and I would have most certainly had a second and third opinion.

    Hope this helps. Could luck to you

    • Sue1247
      Sue1247 suzanne39910

      Posted

      No I havent yet and have an appointment on Thursday to discuss.  Something permanent will have to be done.  I'm sorry youve had a bad experience but there are many more people (who don't bother to post on Patient UK) who have found RAI very successful.  I don't know at this stage what will be recommended  I'm extremely surprised they left it to you to call when symptoms set in and I've been having regular blood tests that will continue after whatever treatment I have.  If RAI worked so quickly on you then so would have surgery so I think you've just been unfortunate. 
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