I was diagnosed with an overactive thyroid / Graves Disease in 2015. Between 2016 and 2021 I was on "block & replace" treatment - 40mg of carbimazole daily along with 150mcg of levothyroxine. My thyroid had stabilised by 2021, after which point I was taken off all medication.
I relapsed with an overactive thyroid 18 months later, and in mid-2022 I started on 40mg carbimazole as treatment (not block & replace this time but a tritration regimen), since which time my dosage of carbimazole has reduced down to a maintenance dose of 5mg as of April 2023. My latest thyroid blood tests came back at the end of March 2023, at which point I had been taking 10mg of carbimazole daily, and at the end of March my thyroid results showed that I had a slightly underactive thyroid! Which is quite incredible to say the least, especially given I had also just reduced by carbimazole medication from 20mg daily down to 10mg daily.
I am telling my story now, because I believe I have worked out how to control my overactive thyroid. As far as I understand it, and I am not expert just a patient, but the thyroid essentially processes iodine to create the hormones T4 and T3 which then regulate various bodily functions. So the amount of iodine in your diet may be critical - consume too much, and that may lead to overactive thyroid problems.
But what is interesting to note is that authorities add iodine into certain foodstuff in different countries, due to the fact that in the early part of the 20th Century there were problems in Western countries with a lack of iodine in people's diets, which was causing significant developmental and health problems. In the US for example, they add iodine to salt. In the UK they add it to dairy products (they actually include it in cattle and poultry feed), so in the UK you get iodine in many dairy products such as milk, cheese, greek yogurt and eggs for example. It just so happens that I used to love eating dairy.
So the long and short of it is that having too much iodine in your diet, I believe, can cause / exacerbate an overactive thyroid. The recommended daily intake (RDI) of iodine in the UK is 150mcg. In January of 2023 I calculated that in my usual diet I was consuming 2 to 3 times this amount of iodine, and I had no idea. Just because I happened to love dairy food. In January I cut my daily intake of iodine through dairy food down by 2/3s, down to just under the RDI amount. And hey presto, 12 weeks later my blood test comes back showing that I now have a slightly underactive thyroid, despite having being diagnosed as having an overactive thyroid for the last 8 years!
My medication has been cut to 5mg of carbimazole since April 2023, and if my next blood test comes back in 12 weeks showing I still have an underactive or normal functioning thyroid, I am hopeful I will be taken off all medication altogether. I will continue to consume just less than the RDI of iodine in my usual diet.
So were you initially diagnosed with Graves Disease and had/have positive and over range antibodies for Graves generally expressed as either a TR ab - a thyroid receptor blocking or a TSI - a thyroid stimulating reading ?
Graves is an auto immune disease that tends to wax and wane throughout one's life, and for which there is no cure.
Graves is said to be a stress and anxiety driven AI disease and considered life threatening if not medicated and generally diagnosed when the thyroid gets attacked as the thyroid is a major gland responsible for full body synchronisation.
All the Anti Thyroid drug does is put you in a holding pattern, while we wait for your immune system response to calm down - and the 64 million $ question is why is your immune system causing such mayhem ?
The AT drug blocks any excess thyroid hormones building up and it needs regular monitoring and adjusting whilst your Graves is raging and driving up your thyroid hormone levels and then often titrated down so that your T3 and T4 levels do not fall too far through the ranges with you then experiencing the equally disabling symptoms of hypothyroidism.
Graves is poorly understood and badly treated AI disease but we do now have some research papers you may find interesting :-
I was diagnosed back in 2003/4 at age 56 and treated with Carbimazole but told at my my first endo appointment I was to have RAI thyroid ablation the following year - I wish I knew then what I know now, as I was well on the AT drug and would have preferred not to hae invasive treatment.
i now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and am self medicating as the NHS refused me any treatment option other than T4 monotherapy.
I also found the Elaine Moore Graves Disease Foundation and excellent research tool along with Elaine's very first book Graves Disease - A Practical Guide - elaine-moore.com
P.S. I realise I haven't answered your question as I think it a little more complex than simply reducing your intake of iodine rich foods.
Thank you for your detailed and thoughful response. Yes it is unusual and frustrating that so little is really understood as to why thyroids malfunction in the first place.
My consultant is currently pushing me to have radioactive iodine treatment, but I am not inclined to do that just yet, so what you say about regretting getting the treatment you did is useful to hear.
In answer to your 64 million $ question about why my immune system caused such mayhem.... Good question! At the time I was diagnosed in 2015 I had had an extremely stressful year. I won't go into details but I had been pushing myself to the maximum to get a major project done, at the same time I was smoking a lot of cigarettes, drinking lots of coffee (with lots of milk in!), not eating healthily, working 12-14 hour days and dealing with a lot of mental stress. I figure all of those things combined pushed my thyroid to malfunction like it did.
Since then I have taken many steps to look after myself better, I quit smoking completely 7 years ago, I eat more healthily, I look after my mental health better and deal with stress better. And as such I feel a lot better, and my thyroid has been more manageable. I do just wonder whether this low iodine diet could be a last step, but I do totally understand what you say about it likely being much more complicated than I suggest. We shall see I guess, but instinctively this feels right to me, and if the blood tests continue to support my theory I will keep my fingers crossed.
Thanks again for your response and the best of luck with your health in future.
present these 2 links to your consultant and express your concerns about the RAI treatment and please do your own research.
hopefully there will be no need for invasive surgery but if push comes to shove thyroidectomy is cleaner and much more precise than ingesting this toxic substance that we now know is taken up by other organs and glands in the body and a potential cancer risk.
There is likely a genetic predisposition to Graves with someone maybe a generation away from you with a thyroid health issue- and can also be trigger by a sudden shock to the system like a car accident or unexpected death of a loved one, or appear ' simply out of the blue ' :
You will find Elaine also has a section within her website on alternative and more holistic treatment options and also covers life style and stress suggestions, and yes work/life balance is another area that likely needs reassessing.
Yes those links are very useful, and give me even more reason to resist RAI treatment. So thanks. I will raise them with my consultant if needed.
And yes that website of Elaine looks useful, a lot of her lifestyle suggestions include many things I have done which is great, but I will read through looking for more suggestions.
Interestingly in one of her articles Elaine says "Various environmental agents have been found to trigger the development of Graves’ disease. These include...excess dietary iodine"...
So that actually backs up what I am suggesting in my post which is good. It certainly shouldn't harm me to reduce my intake of iodine to the RDI as it turns out I had been consuming far more than I should have been.
Elaine's forum and her very first book - Graves Disease - A Practical Guide instrumental in my understanding of Graves - though 10 years too late for me !!
Glad yo have already found facts that would appear to be in line with your current thoughts.
I cannot argue against your belief that you can control your overactive thyroid by reducing your Iodine intake. However, I can offer a possible alternative explanation for your " Hypo Graves ". I started B&R 7 years ago on 10mg Carb/ 50mcg Levo. I have slowly transitioned to being hypo and am now on 5mg Carb/ 100 mcg Levo. According to Elaine Moore this is not uncommon and can be transient or permanent. I have always been negative for TGAb and TPO but remain positive with TRAb. The likely explanation is there has been a shift from Stimulating TRAb to Blocking TRAb dominating.
Ok thanks for the reply asiatic. Time will tell for me I guess. It just does seem a very large coincidence that the first time I try a diet low on iodine, my results flip so dramatically. We shall see, it wouldn't be the first time since I was diagnosed that I had been wrong about how best to deal with it. Good luck.
People refer to thyroid hormones as T4 (thyroxine or levothyroxine) and T3 (triiodothyronine or liothyronine).
T4 = a molecule of tyrosine (an amino acid) with 4 iodine atoms attached.
T3 = a molecule of tyrosine with 3 iodine atoms attached.
The thyroid produces all the body's supply of T4 and about 20% of the body's supply of T3.
The remaining 80% of the body's supply of T3 comes from conversion of T4 to T3 in various organs of the body e.g. liver, gut, kidneys plus others, by removing one atom of iodine from T4.
Since iodine is a fundamental ingredient required for making thyroid hormones a person who reduces their iodine intake would make it harder for the thyroid to create T4 and T3.
It is common knowledge that water is H2O (i.e. 2 atoms of hydrogen and 1 atom of oxygen for one molecule of water). If you removed the atom of oxygen from water it wouldn't be water any more it would just be hydrogen.
The same logic applies to thyroid hormones. If you didn't have the iodine what you would be left with would be an amino acid called tyrosine.
This seems like a reasonable idea for someone who has hyperthyroidism. But iodine has functions outside the thyroid and those functions might suffer if iodine was too low.
Extra-thyroidal iodine exists in several other organs, including the mammary glands, eyes, gastric mucosa, cervix, cerebrospinal fluid, arterial walls, ovary and salivary glands.[
Thanks for the reply humanbean, and for the info which is interesting. I won't pretend to understand how my body works and realise I have most likely over simplified something that is extremely complex, but I will go ahead with the lower iodine diet and see what happens as an experiment. I should note that I have only reduced my iodine intake to what the recommended daily intake is as set out by the NHS, so I won't be depriving my body of the iodine it needs hopefully. Thanks.
Yes, yes, yes - you are on money, as they say. I too reduced iodine (here in the US) mostly by removing iodized salt from my kitchen. And you are also on dot when it comes to dairy. They don’t “add” iodine here in the US, but they do wash the cow udder in iodine - no rinsing, just apply the milking machine and zoom!
You are also right about other modern diet hidden iodine, and by the time we are done many are way over the recommended 100 mg of iodine per day. Some people can just eliminate any excess - but some of us can’t (I know for sure I am one through DNA testing positive for the MFTHR genetic polymorphism). The thyroid is the canary in the coal mine and you are very astute to have caught it. It took me 30 years! Congratulations for being so in tune with your own body!
Dr Christianson (an online alternative med endocrinologist) has been healing thyroids / reducing reliance on pharmaceutical thyroid hormone replacement therapy for that many years and has the research to prove it . He wrote a book years ago entitled Thyroid Reset (more recently). It became a New York Times best seller because so many people found that his advice (on reducing iodine) helped 70% of those who tried it. I will send a link if you are interested.
In the meantime, trust your gut, better still, your thyroid. You are so headed in the right direction.
Wow! Thanks for your positive and supportive response, I wasn't expecting that but really appreciate it.I'm just amazed that it has taken me 8 years to make the connection between iodine in my diet and my thyroid, I'm shocked tbh that no consultants have even asked about how much iodine I consume. I'm a little shocked too that this is a widely known issue, and that more has not been done by the authorities to make the connection between iodine consumption and thyroid problems. Given the authorities add iodine to our diets, are they not liable for any health problems that then may lead to?
But thanks for your response that gives me confidence. I have just had a quick look at the book you mention - it's interesting too that a low iodine diet is also recommended for people who have an underactive thyroid as well!? That is very confusing!
Right, I have Hashimotos disease - or rather I HAD Hashimotos disease. Took various thyroid hormone replacements over the years. One more thing.
You are right to be surprised about the positive support, but wrong to think that it is so widely known. In fact, even though I have been thyroid hormone replacement free for 3 years now - and have been shouting it from the mountaintops here and everywhere else. (My Dr. believes!) the naysayers far outnumber those that want to accept that overdosing on iodine is a big cause of thyroid dis-function. It simply cannot be that simple, right? And I don't do the blood tests and even if I did I would not publish them. (after all of these years, I'm of the opinion that first the blood tests / Dr.s make PROVE you are sick - and then they provide the LIFELONG prescriptions that cost millions - to make you "well". It is not in mainstream medical's best interest to find a simple solution) I have come to know that there are many factors that influence TSH, TPO, FT3, FT4 - mostly thanks to Dr. Chistianson - thyroid / pituitary gland are just a couple. Estrogen / progesterone balance / imbalance are also factors. What me and my Dr. (an MD) trust is how I feel. And I feel so much better. Nothing like your own thyroid hormone. (and I still do take minute amounts of bovine dessicated thyroid a couple of time a week - sometimes not at all). After 30 years, it may take awhile for my thyroid to recover - and there is a chance that I may never be able to use the "cure" word. Occasionally, I will indulge in a little dairy (can you believe that??!! I know better!) It's after such indulgence that I can hear that familiar call from by body "a little more hormone" please.
If all of the above rhetoric brands me as a tad radical, then so be it. I fought for every inch of the present good health. All of that to say, get ready. You will not find encouragement for the "too much iodine" cause of thyroid problems, and you may well be severely admonished to ignore the theory. My advice? Stand your ground , firmly. Continue to educate yourself on daily requirements of iodine (for we must have some). In another 20 or 30 years the MD world, the nutrition world...they will catch up. It wouldn't be the first time something that was thought of as "if a little is good, a whole lot will be great!" have come full circle. Balance is the key.
If it's not too imposing, might I ask? Have you ever took pre-natal vitamins? Oh, and if I was a betting woman, I would not place any money on lawsuits against any who advise put iodine in our food, vitamins, etc. Not going to happen.
Another great response thanks, you cover a lot of the same thoughts I have been having myself there, it's comforting to know I'm not alone in my thinking. I really liked your line "Nothing like your own thyroid hormone" - exactly right and precisely the reason why I have resisted definitive treatment thus far.Yes I expect to get a lot of kickback from my consultant next time I see him, as I know he will completely dismiss these theories about iodine, I can't wait to hear what he says about me being underactive now since I changed my diet. But yes, I will resist and take my own path, I have enough experience with consultants to know 1) they can't even agree on what the best treatment is 2) they don't know everything and 3) they don't necessarily have our best interests at heart as you alude to.
Re. your question about pre-natal vitamins, I'm actually male so not relevant to me!
😀
Thanks again for your response though, I really appreciate it. And you should be very proud about having found a solution to your health problems, well done.
🤭. Oops! You are (sadly) among the very few males with thyroid disease! Or maybe many men suffer without seeking medical help for the thyroid?
My husband has found some root disease causing (genetic) factors for hemochromatosis - quite accidentally! It saved his heart, pancreas, and bones. He slowed down on the iron and received many pints of blood extraction over 18 months and amazing! He is right as rain. Can you imagine how many medicines he would be taking right now to treat all 3 maladies (and more) if it had not been for that one very caring and thorough Dr. - who tested his blood for over 200 different factors just because he was so sick with a flu - like illness?!! (Decades before COVID). He was in his late 40’s when it was found - a very active 67 year old now. Yes, blood tests have their place. Blood tests for thyroid disease have been more than a little lacking (both in “diagnosing” and in thyroid hormone titration) in my humble opinion and long languishing experience.
It’s impossible to answer to your questions because it seems that your TSH receptor antibodies were never tested. As soon I went private and had them check along with TSH, FT4 and FT3, a pattern emerged: my Graves is barely active and my various relapses are actually an inflammation of the thyroid: that’s why only 4 to 5 weeks of 15mg of Carbimazole put my FT4 and FT3 in normal range and my TSH reappears after 2 to 3 months of the allowing me to reach 5mg within 3 months. And from then, I have to decrease every month, otherwise my thyroid goes under active even with 2.5mg of Carbimazole every 3 days. Take care.
Wow that's very interesting thanks. Yes maybe I need to request that my consultant does further tests, though I expect they will be unlikely to do so.Very interesting that you are able to control the thyroid so quickly once you go back on carbimazole, I have been surprised how quickly I have got down to 5mg of carbamiazole tbh.
Do you know why your thyroid becomes inflamed and becomes over active again when you relapse?
I think my relapses are due to emotional stressors related to my childhood and psychological abusive parents. I’m menopausing too which is a factor - according to my endocrinologist and he hopes my thyroid will settle once fully menopaused. The NHS is unable to test THS receptors antibodies properly so you’ll have to get private.
Well you are legally entitled to copies of all your medical records :
You can register with your primary care provider for access and can view your records online :
If your surgery hold no details of diagnosis - contact the hospital and ask there
Maybe contact the endo's secretary and just ask to be sent a copy of your diagnosis letter detailing what you have been diagnosed with and the medical proof of which antibodies were found positive as you seem to be missing this for you own records.
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