I’m debating whether to get radio-iodine therapy to treat my hyperthyroid. I have been diagnosed with hyperthyroid for 7 years now. I was very bad at taking any medicines and didn’t take anything for years. I don’t have any of the symptoms that is normally associated with hyperthyroid. I feel pretty normal and have not lose any weight over the years. 8 months ago, my doctor said it’s time for me to do the radioiodine therapy treatment. I’m having many doubts about getting the treatment. Since I don’t have any symptoms, feels like I’m going to be signing up for hypothyroid and will have other issues such as gaining weight and also having to take hormones the rest of my life. Am I wrong to think this way? I did also get a second opinion from another doctor and he also said I should get radio iodine. I’m really worried about gaining weight since I’m already a bit overweight. I am 51 year old female and 203 lbs. really would love some insights from someone who has done it and their experience after therapy.
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LALady2000
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So we can offer better advice, can you tell us more about your thyroid condition, eg any ongoing symptoms other than weight gain, current medication (if you are taking any?), plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
I have no symptoms. I have never been a thin person so my hyperthyroid wasn’t noticeable for me. I didn’t gain or lose weight having hyperthyroid. I guess you can say over the years I have gained weight, but I think that just purely not being super active and laziness. I’m curious looking at my numbers if you think I should do the radio iodine therapy. I have been high for quite some time.
My numbers seems to somehow was better then, and then it came back. That was without any medications at that time. I’m also not taking any medications now. I’m just worried if I do radioiodine it is irreversible and I can’t go back after it.
I would 10O% ensure correct antibodies are tested, as advised by SlowDragon I was initially misdiagnosed as Graves, but later antibodies showed Hashimotos.
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
I don’t take any medicines at all right now. I haven’t taken anything for awhile. I took some maybe two years ago and was very bad at taking medicines partially because I didn’t truly paid attention about hyperthyroid. I didn’t have any symptoms and ignored it. My bad for that. I am from California.
If your hyper remains continuous a low dose of antithyroid will likely bring levels into range.
Your previous hyper didn’t persist, you need to find out why you have become hyper. Elevated TPO indicated autoimmune, but could be autoimmune thyroiditis or Graves.
Doctors seem quick to treat with RAI. I have a hyper nodule and drs made arrangements to treat me with at first appointment, I delayed (indefinitely) and remained on carbimazole.
The doctor told me that taking hormone meds is far safer than carbimazole. I heard that from 3 doctors. Seems like should be true right? What made you continue on carbimazole?
You are absolutely right to take your time over giving this all due consideration. It's a huge step to be taken, and not to be taken lightly. And if doctors try and hurry you along and hassle you to make a decision, just tell them to bog off! It's your body, life and health, not theirs. They just want to be able to close the books on you, they don't really care about your welfare.
You don't give us a lot to go on, but looking at the numbers you've supplied, it would seem to me you never had hyperthyroidism in the first place. Your Frees have never been that high, nor your TSH that low. I think there was just a lot of medical knee-jerking going on due to your low-ish TSH and doctors energetically jumping to conclusions and forgetting to thing logically.
So, looking at it like that, please don't do anything hasty. Find out about antibody testing, first and foremost, and if it's never been done - which it most likely never has - get it don't know or refuse to make a decision.
Thank you so much for your input. I am trying to sss if I have any more info from my blood test. I was told I have hyperthyroid 7 years ago. Like I had mentioned before I never felt anything and was truly invisible to me. According to my doctor that suggested the radioiodine, she mentioned that having it for 7 years has been too long and that it will not correct itself.
To be honest, I got a second opinion and he too was quick to say it’s much better for me to treat it than have problems such as a stroke later in life. My general doctor also said the same thing since it’s been years. I will ask for the antibody test. I wonder if it’s because Americans are quick to treat? I have heard Europeans will deal with issues differently.
I found this. Apparently my first endo doc did test me for antibody. She retired and I saw a different doctor after her. So these tests were from 2018.
OK, so what we have here is consistantly low TSH - but not low enough to be hyperthyroid - well within range FT3 and Hashi's anti-bodies (basically). And nothing that points to hyperthyroidism. I think US doctors are pretty much like doctors everywhere, too damned lazy to do the correct testing and just taking the easy way out. They haven't a clue what is wrong with you and are making no effort to find out.
Hashi's is an autoimmune disease that slowly destroys the thyroid, and swings between high and low levels of Frees. But the high levels are transitory, so no reason to zap the thyroid. Basically, the thyroid just becomes more and more hypo.
No definititive diagnoses should be made, and no action taken solely on the basis of a low TSH - which is what they've done and what they want to continue doing, and it is wrong. So, before anything else is said or done, insist on getting the Graves' antibodies tested: TRAB and TSI. And, only if they are possitive do you have a decision to make. If they are negative you do not have hyperthyroidism as such and RAI would not be the right treatment. So, when you get the antibody results you take it from there.
"I am confused why you say hypo? I’ve never heard any of my docs say I’m hypo. They all said I’m hyper."
That's because of the low TSH. doctors believe that any TSH results below-range has to be due to hyperthyroidism and don't tend to look at your other levels - they don't understand them, anyway. But your FT3 and FT4 are not saying hyper at all. And we have yet to establish why your TSH is so low - we may never find out. But it cannot be taken as a stand-alone result. It has to be looked at in conjunction with the other results or else you get false diagnoses like yours.
I'm not say that you are hypo - I don't believe you are. But the high TPO antibodies suggest Hashimoto's Thyroiditits, which eventually results in hypothyroidism. But doctors wouldn't know about that. They don't learn about it in med school.
"Do people usually take multiple antibidy tests?"
When there's a doubt about the diagnosis, as in your case, yes. If it's an open and shut case of either hypo or hyper, either Hashi's or Graves' antibodies are tested.
"As in the one test stays the same for the rest of your life?"
Antibodies fluctuate all the time, but once you've had a positive results, it means you have the disease and that stays with you for life, whatever the antibody level when retested.
However, it's a lot more complicated than that because antibodies can cross over, and Hashi's antibodies can be found in people with Graves', and vice versa. Which is why it's best to test them all when there's a doubt.
No, I'm not a doctor. Just a patient that has had to learn or die!
Like all of us here GG isnt a doctor, but she is a very experienced patient with decades of knowledge and insight, frankly in my opinion that trumps doctors hands down. Nothing beats lived experience. Like all our admins and long term members who've had to struggle and learn the hard way.
RAI is a blunt instrument, rather like cracking a nut with a sledgehammer, and its irreversible. I wouldnt be rushed into making any sort of decision until you know exactly what you are dealing with. Especially as you appear symptom free.
I presume your have been diagnosed with Graves Disease and had / have positive over range TRab / TSI / TSH Thyroid Receptor antibodies ?
Graves is an Auto Immune disease for which there is no cure - and considered life threatening if not medicated and the medication is an Anti Thyroid drug -
The issue is not one of your thyroid - but one of your Immune system - and all the AT drug does is ' buy you time ' while we wait for your immune system response to calm down and hopefully in time, your thyroid reset itself without the need for any medication.
If well on the AT drug I 'd suggest you just stay put as it reads as though your symptoms were not severe nor life threatening - considering you had periods of forgetting to take the AT drug - and apparently no worse - or have I got that wrong ?
I am post RAI thyroid ablation for Graves Disease 2005 and would not recommend anyone take this toxic substance now known to cause cancer of small bowel and breast - amongst other things.
Please do your research - treatment for primary hypothyroidism is not just 1 little tablet daily for the rest of your life - I became very unwell some years after RAI and found no help nor understanding within the NHS and refused any treatment option other than T4 monotherapy.
Having been refused both T3 and NDT I now self medicate with NDT and am much improved as to how mainstream medical would have me.
The most well rounded of all I researched is that of Elaine Moore - elaine-moore.com and if in the States - going by your name - Elaine has a forum much like this UK patient to patient forum where you might find more advise within your zip code area as to who supports long term Anti Thyroid drug treatment - if you currently are feeling pressurised.
Thank you for your response. I really appreciate it. I too am worried about the irrverseable nature of RAI. My endo doc did have me talk to one of her patient that had the procedure and that patient seemed to be very happy. Although she is not in my age group at all (in her 30s) I was never good at taking any of the meds that were given to me. I started with a doctor and by the time she was evaluating me, she had retired. I didnt find another doctor until a year later because of being busy and life. Once I found her it was in the height of Covid. At that time my numbers were high then 6 months later they were not. All of this is without taking any meds. 6 months later they were high again and right away she said it’s time. It’s just going to continue to being high. Once she told me to get RAI, I waited. 6 months later I got another blood test and my numbers were high again. So here we are now and after talking to another sndo doctor he too recommended me to get RAI. I have to say I’ve learned more tonight finally reading so much info about it. I wish I had known what I know now when I got my second opinion.
I’m supposed to get RAI next week hence I’m up stressing about it.
Reading what else has been written so far - this looks more like Hashimoto's Auto immune Disease which presents with transient swings in hyper type symptoms and is not treated with an AT drug.
Please read the research paper I sent you - why would anyone want to agree to a reduced Quality of Life - 10 years on -
especially when their symptoms are not compromising their life too much anyway ???
Cancel the RAI - and please do more research - check out the Elaine Moore 's Stateside forum and share your thoughts there as well - and ask to a recommendation of an understanding endo in your zip code area as you will likely need thyroid hormone replacement as your thyroid becomes disabled by the TPO antibodies and Hashimoto's AI disease and you need an endo who runs and prescribes on T3 and T4 readings and offers you all the treatment options for hypothyroidism.
I will thank you so much for your time. I should have join a forum a year ago. I’ve been so busy with work and like I said, I have no symptoms. I will be back to share any more news. In the meanwhile I will check out Elaine Moore. May I ask, are you a patient too?
Yes - I was diagnosed Graves Disease 2004 and had RAI thyroid ablation in 2005 - becoming more unwell around 8 years later - and getting no help in mainstream medical -
I thought maybe - ' that Graves had come back ' -
only to find out via Elaine Moore 's first book that Graves never went away -
and then found this website as I was getting nowhere with my doctor - and like a Humpty Dumpty have had to put myself back together again as best I can as have many of us on this amazing forum.
Details on my profile page - just press the icon alongside my name and that takes you to all I've ever written and replied to on the forum :
If you get lost - reading around - just press your Profile icon that is sitting alongside several icons - My Hub - Chat - Post - Alerts - and Menu - ( all top right on my laptop facing me ) -
No worries - and it is not too late for you to change your mind and suggest you explain to your medical team your reasoning - show them these research papers - and ask for their thoughts ?
It is a myth that all who are hyperthyroid lose weight, and that all who are hypothyroid gain weight.
Statistically, across the whole population, that might be broadly true. But individuals can have no significant change of weight - or go in the opposite direction.
There are many possible thyroid-related reasons for gaining or losing weight but they don't all work in the same direction.
So yes, your fT4/ fT3 and TSH levels are pointing towards you having a greater risk of Atrial Fibrillation leading to stroke etc.
consistently producing levels of T4+T3 that are just a bit too high for your body will result in TSH being supressed. and it's the higher T4/T3 levels that cause this increased risk of A-Fib, rather than the TSH
but , as for what to do about it , when not symptomatic ..... personally i'd want to know with more certainty what i was dealing with, and what had been firmly ruled out , before making any decisions . ie :
if any Graves antibodies are involved? (TSI / TRab test needed)
or , is there an autonomous thyroid nodule causing your persistently high T4/T3 levels. (some sort of scan needed)
or is it a very long introduction to hashimoto's.. which is initially causing your mildly hyper levels of T4/T3 ,but will eventually damage your thyroid to the point that T4/T3 production becomes too low.
in the meantime , (until you know with more clarity what is causing your T4/T3 to be over range), if it were me ,even though symptom free, i'd consider taking a small enough dose of antithyroid drug regularly to get T4/T3 just back into range and see how you feel on that (use it consistently this time, and keep good records of dates/ dose changes /how long on dose before blood tests etc , other wise things will just get more confusing when trying to interpret blood results )
when discussing 'risks' with you , i bet your endo's have conveniently forgotten to mention that it is now universally accepted in thyroid research that about 15% of hypothyroid patients on levo are 'dissatisfied' with their treatment with their quality of life being affected sometimes very significantly , (and it could be a lot more than 15% of us in reality )
RAI will in nearly all cases result in becoming hypo (eventually ~ it might take a few yrs to get there) , and if you are one of those unlucky 15% , there's no way to get your thyroid back, and they won't be very interested in you at that point.
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