First a little bit of background about me. I am 49, living in Ireland. I have Graves's disease diagnosed by an endocrinologist who did antibody test etc.. After diagnosis I underwent 18 months on Carbimazole and then came off for a couple of months but my T3 and T4 shot back up again (and TSH shot down to zero) so I am back on Carbimazole for the last six months or so. I'm hoping it will go into remission because I do not want to have RI or surgery.
And now my query, I bought a red/near infrared lamp for a completely different (skin related) issue, so nothing to do with Graves' or thyroid. It's just after I bought the lamp I read somewhere that people with overactive thyroid should not use an infrared sauna. I am going great lengths to cover my thyroid area while I use the lamp. But I can't seem to find any further info about infrared light and overactive thyroid. I'm wondering if it's safe to use once I cover my thyroid. I know that light therapy energises the cells so it wouldn't be a good idea to shine the light on my thyroid but is it safe to use it on other parts of my body? Does anyone have any insights?
I'm also wondering what are the chances of my Graves' going into remission eventually? Or what is likely to happen if I just continue to take Carbimazole? I hate taking it but I see it as the lesser of two evils. I really don't want RI or surgery. I have a history of breast cancer and my body has been through so much that I don't want to do any more invasive procedures if I can avoid it.
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MyNameIsAugust
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Whilst I can't answer your question we do now have a couple of research papers you might be interested in copying for yourself and your medical team - if push comes to shove :
Do you have copies of your T3 and T4 blood test results and has your AT drug been titrated down at all ?
When metabolism is running too fast, as in hyperthyroidism, or too slow, as in hypothyroidism the body struggles to extract key nutrients through food and non optimal levels of ferritin, folate, B12 and vitamin D can compromise your health further.
It's a fine line getting the patient neither hyper nor hypo - so it might be worth asking the doctor to run these core strength vitamins and minerals if they haven't been run recently.
Thanks for your reply pennyannie. Yes, when I first started on Carbimazole it was about 40mg a day and gradually it came down to 5mg and then I stopped. Since I restarted on it again I have been on 10mg. They have been testing my bloods monthly, until this month we are waiting two months between tests. I don't have the numbers in front of me. I have been keeping an eye on Ferritin, Folate, B12 and D and they are within "normal" range but I don't know what the optimum levels are and whether I am close to optimum or not. At one point I was overdoing the Vit D and it got too high so I don't want to take a supplement that I don't need.
Perhaps at the end of my first 18 months of Carbimazole I should have weaned down from 5mg more slowly, might that have helped? TBH I was just so glad to be coming off meds because I never really needed or took meds until I had breast cancer at age 42 and since then it's been one thing after another. So when I came off the Carbimazole last December it was my first time med free since cancer and it was a big milestone for me, it felt like I was reclaiming my pre-cancer norm.
I'll just have to wait and see what impact if any the red/near infrared light has on my bloods.
Yes, it's interesting as this current research flies against the 15-18 month window generally suggested on the NHS for treatment with AT drugs.
Yes, you could have chopped the 5 mcg in half and gone with 2.50 mcg a day and tailed off or stayed on that little bit longer -
who knows -
as unless the Graves antibodies are rerun it seems pointless suggesting remission as we are looking at an auto immune disease that tends to wax and wane - with common triggers being stress and anxiety.
I had RAI thyroid ablation for Graves back in 2005 and became more unwell some 8 years later - and when I started my research into this poorly understood and badly treated AI disease as the NHS were on no help and referred to me as a conundrum !!
Having been refused any treatment options other than T4 - Levothyroxine in 2017/18 I now self medicated and am taking NDT and much improved staying away from the NHS ?
P.S. For reference I now know I feel much improved keeping my ferritin at around 100 : folate around 20 : active B12 75++ ( serum B12 - 500 ++ ) and vitamin D around 100.
I too have been on carbimazole for the past 3 to 4 years. I am currently pursuing RadioFrequency Ablation at Reading Hospital as I have a large toxic nodular goitre . As of yesterday (!!) I have had results of cardio appointment and have a slightly floppy mitral valve I have had lots of episodes of palpitations not fast just heavy and worrying.
I reduced dose to 2.5 at one point and like you came off altogether only to go back up again. Initially i was hypothyroid and Hashimotos and I have pursued a lot of dietary and supplement journeys with a Functional Medicine Practitioner and medical herbalist which has really helped but has been very costly. So as soon as it was confirmed that I was AI (2013) I stopped gluten, sugar, soya dairy corn ate loads of protein lost pounds and felt much better. ( I was very unwell) I have since relaxed this diet and eat goats cheese, goats milk kefir, fermented veg and some sugar. I think diet can make a big difference. If you want to find out which foods you don't tolerate - people are different - then try the programme Amy Myers THE AUTOIMMUNE SOLUTION it's tough but not as difficult as you think it will be and reveals alot.
Not yet ! I'm due to have a nuclear scan first on 10 Nov but currently I'll so perhaps not !! Then he'll do the RFA a lovely consultant at Royal Berkshire but yet to have the treatment . Delay delay delay .
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Graves Disease - can you be in normal range but eyes continue to get worse?
Book about red light therapy
Post op after TT, I have Graves Disease and very severe TED
Carbimazole didn't work!
