I've got an overactive thyroid due to Graves disease and because I reacted badly to the carbiomosel drug I'm down to have surgery to remove my thyroid on the 11th March.
I know I will still have graves disease/autoimmune problem so removing the thyroid doesn't change that.
I am wondering if there is a way to save my thyroid using diet and I wondered if anyone has done this, got any thoughts or an I just overthinking?
I know getting the operation is the easy option and I will be able to move forward but it does seem extreme way of doing it
thank you for any thoughts
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JudyP13
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A few members have tried natural / diet / holistic approaches but none have reported long term control, especially when levels are dangerously high as can occur with Graves.
Chemically carbimazole & PTU are quite different & work slightly different but doctors become very concerned when Carbimazole induces neutropenia (lowers white blood cells) drs tend to not want to risk trying any antithyroid as they would be responsible if it worsened your WBC count.
Well dr really needs to be testing with TSH & FT4, you also need lab range. Level still high. Dr prefer it under control when possible, usually lugols iodine is given before surgery. Has this been discussed with you?
Yes I have to start taking it on the 1st March. Its just me wondering what else is possible other than surgery but its also pretty late in the day now as well
Hi Purple Nails, just re reading your reply and wondered about the PTU. My white blood cells returned to normal after stopping taking the carbimazole and having an injection, but the dr is against me taking PTU as could have the same effect or might not. Would you in the same situation push for trying PTU? thank you
I’m not sure what I would do. I think I’d start by asking the doctor why you should or shouldn’t try.
I think it’s possible that because the literature refers to both carbimazole & PTU both as having rare chance of causing rare reaction with WBC drs group them together when it possible PTU could be tried & your reaction would be different.
Drs aren’t used to switching to PTU - if it’s non life threatening skin rash they seem prepared to, but they assume patients would not want the risk when there’s a more serious health issue occuring. you may want to take the chance & this is the argument I would make if I felt strongly.
Drs also factor in that long term you may end up undergoing thyroidectomy & this treats the issue definitively now, which is much quicker resolution. You & your dr should be in a partnership & ultimately you are in control of your treatment.
You might like to read of the alternative and more holistic treatment options as detailed in Elaine Moore's books and website which we now need to access through the archives :-
Thank you for the links Pennyannie. I've started following the natural endocrine solutions hence why my question came up. Will check out Elaine Moore. The reason I was told for not being able to have PTU was because of the sudden drop in white blood count. Even the ENT surgeon who is taking my thyroid out asked the same question and was told that it was contraindicated 🤷♀️
I suffered terribly with carbimazole had a terrible reaction with it and my TSH went up to 119 just on 15mg but not only that it threw all my bloods out too! but I’m good with propythiouracil so it’s gotta be worth a try?
It just seems so drastic surgery and RI? I keep going overactive <.05 and have a nodule but I have no symptoms whatsoever so when my endocrinologist suggested surgery or RI I point blank refused so he’s upped my PTU so here’s hoping? Good luck JudyP
yes it also raised my liver markers and threw all my bloods out? I refused to take it then my endocrinologist prescribed ptu. But given that I have no symptoms if ptu doesn’t work I’m not having further treatment ie RI or removal? Too drastic!!
I opted for RAI not surgery as my GP said that he had patients with problems following surgery - ie regulating calcium levels due to parathyroid damage. But that was in 2012.
I’ve just started PTU after 6 months of trouble on Carbimazole and changing endocrinologists due to moving back to Australia from the UK. I was seeing an endo recommended on thyroid UK who kept decreasing my dose to counteract the side effects but that would only last about a month until they started again. I was getting a lot of side effects from Carbimazole and my TSH hadn’t budged. The new endo said it shouldn’t take that long for TSH to move up and I shouldn’t have been getting all those side effects so straight away changed me to PTU. I’ve always had low white blood cell count and that was still low with Carbimazole but didn’t get worse and wasn’t/isn’t low enough for concern (so far). I had started on 20mg carb and gradually decreased to 5mg every second day due to all the issues it was causing me. I’ve only been taking PTU for three weeks and started on a low dose of one tablet (5mg) a day. I will increase to two tablets a day next week and see Endo in two more months so still very early days. He said it will impact my liver enzymes but different ones to Carbimazole. He didn’t mention WBCC. He said though that he is a proponent of taking the medication longer rather than just the 18months recommended traditionally as the research is now saying there is a greater chance of remission that way. I had also heard this on here so I would also see if I could give it a shot if I was you provided your white cell count doesn’t decrease.
I have been gluten / dairy free since first diagnosed and avoid coffee, low sugar, eat very clean but my antibodies have only decreased marginally, it hasn’t moved my T3 and T4 in the same way Carbimazole did. I also tried Bugleweed tincture and lemon balm but that didn’t budge anything for me either. For me I need to focus more on stress reduction / meditation too I believe as I’ve had a lot going on the past year or so when I was first diagnosed and I’m hoping being back “home” now will help me too.
Good luck, I hope you might be able to investigate PTU as an option for you as well first. Maybe a second endo opinion might help you too.
Hi judyP13❤️I'm intrigued that you were told your graves and autoimmune problems would continue even after thyroid removal..🤔..I assume your having full thyroidectomy as you have graves disease.
I was told the exact opposite, in that after thyroidectomy all my symptoms would go [ they haven't] and I would no longer have any autoimmune problems [ I have autoimmune problems to this day] thyroidectomy in 2019 due to graves thyrotoxic because like yourself I couldn't take either anti thyroid drugs.
I don't think trying a different diet will change anything, both my T4 and T3 were very high T4 being 100..[ range..11.00..22.00] T3 was 36.9 and my TSH was undetectable in essence no saving my thyroid 😔.
thank you Birkie, its more of an assumption - I haven't been told that by the doctor but from reading various sources including the Natual Endocrine solutions website I got the impressions that taking out the thyroid just removes the symptoms but I still have the autoimmune disease which could then attack something else.
It's interesting what you say though about your results - my T3 is 21.6. I know my TSH is <0.01 - is that undetectable ? So I may be in the same position in that there is no saving my thyroid but did they not suggest PTU either for you?
I tried both anti thyroid drugs there are only 2 available cabizmol and PTU..I've now developed primary hyperparathyroidism aswell and are under a specialist in Liverpool.
No matter what my surgeon told me I still believe I have antibodie issues.
In the US, Propylthiouracil - PTU has a black box warning for hepatotoxicity (liver failure) and a common adverse effect of myelosuppression (bone marrow production of blood cells).
But what Gravie says with her doctor in Oz makes sense. Surgery is a much simpler approach than the frequent monitoring of CBC and liver enzyme that would be needed with PTU. I would think if you combined the medication, monitoring and taking measures to eliminate as many sources of inflammation as you can (mainly via a good diet, correcting any deficiencies and trying to lower stressors) you might be more likely for a possible remission. (Side note - avoiding parathyroid damage during surgery depends on how skilled the surgeon is. Same with vocal cord damage.)
I thonk auto-immune conditions tend to run in flocks — if you have one you likely have others — but what triggers them for one person doesn’t necessarily trigger another. My SIL had lupus and hashi’s; in addition to some levo, she kept symptoms at bay by totally avoiding sugar - a diet of mainly grass fed beef (her own) and green salad. She was still fox hunting over fences at 80.
Thank you Patti for your input I really appreciate it and also the info on the warnings about PTU - lots of food for thought although I do feel my dr here will just overide my thoughts aobut it
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