Radio-Iodine Treatment.

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Hi all , im just going through my second bout of Hyperthyroidism and ive been told by my consultant that its time to make a choice.

Since its come back then there sure that it will again and again so measures need to be taken.

Now I dont fancy going under the knife... so im looking at the Radio-Iodine treatment and aside from the keeping myself away from people for a set time period it seems to be the right choice.

Can anyone on here whos had this treatment give me a run down on how this effected them in the long term after?.

its ok me reading provided litrature but thats based on the default subject but id rather have insights from people who have actually gone through this.

input is greatfully appreciated.

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10 Replies

  • Posted

    OMG this is exactly what has happened to me - I'm at the hospital this afternoon! I look forward to hearing what people haveto say!
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  • Posted

    I had my RAI treatment 3 and a half years ago and, after a bit of juggling thyroxine dosage I've been stable ever since. I was down to once yearly blood test but recently had a 6 month one which showed I'm slightly under medicated so would suggest 6 monthly blood test is best if your doc will do it, once you are stable. You just have to remember to take the thyroxine every day. I've forgotten maybe 4 times over the whole 3 years and I normally take as soon as I wake up then it leaves a while before eating breakfast which is recommended. All in all I'm happy with it. I was allergic to carbimazole (badly) and didn't fancy PTU longterm which is why I opted for RAI. Just had to avoid close contact for a few days after I took the dose.
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  • Posted

    I have also gone into 2nd "bout" of hyper after being on the Block & Replace treatment for approx. 20 months and was advised by the NHS specialist I am seeing that I need to consider RAI.  He told me that if B & R treatment doesn't work the first time, then it is unlikely that you are going to go into remission from Graves/Hyper.  However, I feel that my GP (NOT the specialist) stopped my B & R treatment after 20 months at a time when I was still having issues with some symptoms AND although my blood test at that time showed within the ranges - I have learned since then that the results may well have been "within range" BUT were on the high/low end of the range and hence why I was having symptoms of extreme fatigue, feeling extremely cold and feelings of anxiety/panic.  I have also learned since that time (through this forum and another forum I am a member of) that GP's know very little about this disease.  I have also learned that the specialists are far too quick to suggest RAI or surgery as the next treatment because after either the patient becomes Hypo and allegedly Hypo is easier to control than Hyper is (from the perspective of the Specialist NOT the patient I may add).  So, the last time I saw my NHS specialist and he recommended RAI, I told him that I would like another "shot" at B & R replacement and the treatment stopped when I FEEL "within range" and not when the blood tests SHOW "within range".  This was in October and have been on Carbimazole 40 mgs and Levothyroxine 100 micrograms daily since and with 2 appointments to see the specialist cancelled since then due to him being ill.  I am still having a few symptoms (anxiety/breathlessness) so may need the medications tweaking but will have to wait until I get another appointment when the specialist is back in good health - no point in me going to see my GPs about it because I have NO confidence in them after the disaster of my B & R treatment being stopped at totally the wrong stage.

    Best regards

    Christine

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  • Posted

    I have worked for physicians and hospitals for over 35 years as a medical secretary, administrative assistant and medical transcriptionist.  During this time, while I like and admire physicians including the ones that treat me, I have come to understand that physicians are not Gods and do not deserve "blind trust" from their patients.  This is because traditional doctors are trained to treat symptoms, not look for causes of disease or treat patients as whole people not just their disease name.  When I was diagnosed with Graves disease in 2007, knowing that there was a pill treatment for it and from my medical transcription years knowing that this was what children with Graves were treated with, I was determined to keep my thyroid.  I feel like that about any body part.  If the good Lord didn't want me to have it, he would not have given it to me.  And I was right.  I have had two good endos but while their input and training are helpful, if I wanted to really heal, I had to do my research and become responsible to make choices for my treatment.  At diagnosis my Free T3 and Free T4 came into the normal range immediately on 10 mg of Methimazole but my TSH remained at 0 after 2 years.  At that time, of course, the push was on by them to get RAI or thyroid surgery.  My sister-in-law had RAI and she said you never feel the same or normal afterwards.  I did a lot of research and experimenting and here's what I found.  There was an article published in a medical journal by an Italian endocrinologist that showed scientifically that hyperthyroid patients benefit greatly from taking 3,000 to 4,000 mg of Regular L-Carnitine per day as they lose this amino acid from their muscles thru urination when they are running hyper.  Then it made sense that they lose a lot of other vitamins, and minerals as well.  I was deficient in Carnitine, vitamin D and Magnesium for starters and started taking these supplements for replacement.  I felt better and for the first time in 2 years my TSH rose from 0.  Not much but it was an improvement in the right direction and I was able to lower my dose of Methimazole.  Then I experimented with different types of carnitine  and I found one that really raised my TSH and lowered my Frees very quickly into the normal range when taken with a very low dose of Methimazole (5 mg) because it helped get the methimazole and vitamins and minerals into the cell nucleus.  I also learned that you do not stop medication when your thyroid tests are normal but do so when your thyroid tests are normal and so are your antibody tests.  My Endocrinologist was astounded when after my last visit with a TSH of essentially 0.12 at the next visit it was 1.5 and I showed him the bottle.  So from then on, he took care of my Methimazole dosage, lowering it as necessary and I took care of the rest (diet, supplements).  It is interesting also that this disease is not treated the same all over the world.  In the UK, Block and replace with extremely high doses of both meds is the standard.  That is never used in North America where they are quick to push RAI or thyroid surgery.  In Japan, where they experienced radiation negative effects after the drop of the atomic bomb in world war II, they wouldn't even consider using that.  Also doing RAI or surgery does not get rid of the antibodies because this is an autoimmune disease, not a thyroid disease.  If I and many other hyperthyroid patients can get into remission, so can you if you want to but you will have to become an empowered patient and take responsibility to learn all you can about other factors of this disease, as well as other treatments and take responsibility for making choices.
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    • Posted

      Linda

      I admire your determination and desire to take control of your treatment but, for some of us, RAI has worked very well and I feel I have a normal life. I've never had such a bad experience as the effect carbimazole had on me and wouldn't touch that medicine again, ever! Nor did I want to risk possible bad effects of PTU. And I do have good background knowledge as I'm a veterinarian.

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    • Posted

      I am glad you are not suffering because of your choice.  I also think with regard to Carbimazole/Methimazole, many doctors prescribe too high a dose of it and patients suffer because of this as well.  And in the UK with the Block and Replace method, a high dose is inevitable which I do not think is the best choice for treatment.  While some people do okay with the choice of RAI as you have,  more than at least half do not do well on synthetic T4 hormone replacement and once this choice is made, it cannot be undone.  Because it does not destroy antibodies, many people develop thyroid eye disease after RAI as well.  I joined a thyroid association and the first woman I met there had the obvious signs of thyroid eye disease with bulging eyes.  She had RAI and she said she saw 5 physicians before being diagnosed,  and none of them knew what she had.  When I told both my GP and endocrinologist about this, they both said, "That's so sad".   When examining the 3 methods of  treatment, physicians should honestly describe the pros and cons of all methods including medication.  What I have seen from other patient's stories is that medication is prescribed incorrectly with much higher doses than needed being prescribed and with no knowledge about other factors of hyperthyorid diseases and prescribing lower doses. 
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    • Posted

      Diagnosed in 1992 and having bouts of remission albeit for 18 years and relapses and only being able to take PTU as I'm allergic to Carbimazole, I cannot wait to have my RAI. I have Graves and did have eye involvement in 1992, however this is now inactive. I simply cannot risk losing any more of my life to this hideous disorder,  I have read about L Cartinine and supplements but I don;t believe this actually proven to stop the antibodies? I hate PTU, my levels are normal with TSH 2.2 from unrecordable, however the PTU is still causing me joint pains, I stop my medication in 2 weeks, when I go to Ireland for a week before the treatment, I am so excited with the prospect of being free from all but the thyroxine supplement should I need it. I will cross every bridge as I come to it. I believe my relapse came as a result of the death of my husband, so I am doing this alone and I do feel empowered. Good luck everyone!
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  • Posted

    Hi there I was just wandering how you were getting on?  I am 3 months post RAI and feel fantastic! I know I may go hypo but at the moment I am enjoying feeling better than I have in ages, I'm back at Pilates and walking. My levels were fine 4 weeks post op albeit my TSH was still on the low side. I have bloods done again in a couple of weeks. I am not taking any meds. I have regained about half a stone, which is really what I lost when hyper. I really hope things work out for you.
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    • Posted

      Hi , long overdue update.

      Had the treatment about 8 weeks ago .

      I feel pretty good , had a few hot flushes and still get the odd one now and then. 

      Those were and are unpleasant but the doc assured me thats normal.

      My thyroxin levels didnt go down for the first few weeks and I wont know till the 2nd of next month if they have in fact actually gone down at all.

      My thyroids not as swollen as it was , which is reassureing .

      Still off the Carbimozole but still taking Prolpranolo daily.

      Hoping for the best.

       

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  • Posted

    Go for it, absolutely nothing to worry about, it's not an instant cure, but there is no serious temporary side effects I just had hot sweats which will settle down, weight gain is a myth your body will return to its normal healthy state, not necessarily your hyperthyroid state.

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