Is my thyroid dead?

Hi, I'm a 56-year-old female, was diagnosed with Hashimoto 3 years ago and have been gluten and soya free ever since. I'm on 100 mg Levothyroxine and healthwise it's been a rollercoaster. Past ultrasound scans showed a 1 cm cyst and a 3 mm swelling on the left lobe.

Last blood results were TSH 0.28 (0.3 - 6) and Free T4 18.6 (9 - 24).

In June 2015 the endocrinologist said my thyroid would probably be dead by the end of that year. On my most recent ultrasound scan, in October 2016, I was told my thyroid was very small, with no inflammation. So my question is, is my thyroid dead?

If my throid is dead, does this mean I no longer have an auto-immune disease, and there is therefore no longer any need for me to be gluten and soya free? Would be lovely to eat without having to read every label in the supermarket!

The doctor had said that when the thyroid dies, there should be no more hyper/hypo swings, and the medication alone would regulate my metabolism. As you may know, the NHS will only test antibodies once, to confirm an auto-immune.

Would be very grateful for any input.

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14 Replies

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  • I'm not sure how you tell if your thyroid is dead. I was told mine was, several years ago. But, when in 2013, I came off my thyroid 'meds' for 6 months (don't ask!) my gland sprang to life and managed to put out a little T4 - and perhaps some T3, I don't know - but, it kept me alive for six months without too many symptoms creeping back in. So, now, I don't know if it's dead, or just inactive because I'm on a full replacement dose.

    However, if it is dead, then you're right, you will no longer have Hashi's. And, therefore, you should be able to eat gluten unless you are sensitive to it, or have Coeliac. But, I would not recommend you eat any unfermented soy, because that will mess with your 'meds', too, not just your gland. Unfermented soy is an absolute no-no! :)

  • As the thyroid dies away you will get stable hormone levels. Antibody levels return to normal a after few years in patients who have their thyroid removed. The only way to know if you will be OK is to try coming off your restrictive diet. Maybe there are patients who have tried this who can advise.

  • Following on from Greygoose's post I forgot to say that when we are on thyroid medication the thyroid shrinks. If we come off the medication and there is still some active tissue it can resume producing some hormone. Thus, if the thyroid is very small and you are on levothyroxine you can't be certain it is dead. It might well be but to answer your question you will probably just have to see what happens when you include gluten. If you can afford getting a private antibody test it might be an idea although you would still have to rely on a gluten trial.

  • You can only really determine that yourself and see how you feel if you started eating gluten. However, I would warn that for me, it is gluten that triggers me to autoimmunity, my thyroid went donkeys years ago but I started to get multiple autoimmune diseases that did not resolve or stop until I gave up gluten. I would suggest that if gluten was the trigger that started your immune system attacking your thyroid, then it may well just trigger your immune system to attack something else instead as maybe your body didn't like it in the first place? even though mine supposedly died well over ten years ago, it has still shown signs of life every now and again so not sure how true that it??

    Did gluten free helpyou in any way, did anything else resolve itself?

  • This is correct. I was advised just today my thyroid is dead. I am a Ceoliac, which is an autoimmune disease and most likely the trigger to what has happened now. So if this did trigger your thyroid issue, do not start with gluten again, you will end up excessively ill, just as you would have been due to your thyroid issue.

  • Saggyuk I was told my thyroid was very small and shrivelled and highly unlikely to have any function, after an ultrasound scan. Certainly sounds like mine was a total goner. I have autoimmune thyroiditis and am hypothyroid but had no goitres.

    I still found going gluten free after this was helpful.

    I have some signs of thyroid eye disease and myasthenia gravis but all tests have proven inconclusive i have some signs but not enough signs to merit a definate diagnosis and no antibodies have been found. 30% of ocular MG suffered show no antibodies so even that is not fully diagnostic.

    I also have osteoarthritis/ankylosing spondylitis first presenting when I was 23. It can be a precursor to thyroid disorders I have read.

    I think I'd agree that it is the autoimmunity one is trying to keep at bay and the hypothyrodism is just one facet of it - I see it as a symptom rather than the cause.

    I am not eating gluten again just in case it provokes more autoimmunity problems.

  • Is that what you were told by the Endo - "dead thyroid"?? what a strange way and frightening way to describe the future of your thyroid function.

    Your TSH levels appear to be low which to me does indicate that your thyroid is not working. The TSH is your own natural hormone. The medication should therefore take over the function of the thyroid if it is no longer working permanently. I would imagine in time, you might need a higher dose of medication.

    I have a partial gland which has never worked and my TSH on my last blood test was 0.09. My current dose of levothyroxine is 200 mcg and 20mcg of the lithyronine - I am in the middle of the T4 and T3 ranges. I also tested positive for antibodies along time ago.

    I feel a lot better on this level and as I have said many times, I feel that this is my natural dose. I would ask your Endo or Dr if they intend to increase your medication in time. How do you currently feel in yourself?

    Make sure they regularly check for B12, ferritin and Vitamin D deficiency.

    Take care :)

  • JOLLYDOLLY He said it was "very small and shrivelled, in fact very small indeed and highly unlikely to have any function". I had the ultrasound scan because my mother and sister both had cancer of the thyroid. It had stopped working about two months before because I had come close to a coma just as I started Levo. I was quite relieved to hear it was so small and definitely not cancerous. I never had a goitre either. No point in him telling me it was looking good for a regeneration as it clearly was not! As I take a replacement dose and need about the same as I ever did, I guess he was right & it is a total gonner, at least cancer is probably off the agenda unless it starts elsewhere - got my bro in the guts 😢

  • Hi TSH110, I am glad it is not the "C" word. It must be a relief too. But I am sorry that both your mum and sister have gone through it. I have never understood the goitre side, they used to say that to me when I was growing up about having the thyroid meds under control because I was potentially a candidate for the goitre but a Endo confirmed "in his opinion" that there was no evidence to support it in my case.

    I was in a coma as a baby hence how they found out with me, so I know how serious it can be. Lets just hope that the doses they give you of levo is correct and you can try and get back to normal ( ha ha she says). Please post your ranges when you get your results, I am not good on reading them but have picked up a few tips along the way from the good people here and my own results.

    Are you going to get them to check for B12 deficiency, anaemia and vitamin D deficiency> as they have similar symptoms and traits as thyroid conditions and can walk hand in hand with them. Me, being greedy have the lot! :( Always here for a chat. You are not on your own. Take care and keep in touch :)

  • JOLLYDOLLY my mum survived it first time around and had 8 extra years but it got her the second time when it came back. My sister had total thyroidectomy because it was also in her chest cavity all nasty and deformed but still working! She is fine. My brother copped for it at 36 which was really tragic. Sounds like you have been through the mill with thyroid stuff!

    I self medicate with NDT because I never really felt well on levothyroxine (sister and mum were fine on it) I just go on how I feel - mostly I feel very well but have been plagued by mysterious bone/joint/tendon aches last two weeks which seems to be resolving. Trouble is I work as a gardener staRt at 7:30am finish at 5pm get home and run off to the allotment till night fall so might have overdone it! I don't seem to be hyper but I always did have a lot of energy till I was badly hypo. I keep meaning to get blood tests then I think oh keep it simple like they did in the olden days. If I rest instead of going to the allotment I just fall asleep so I prefer to keep busy and achieve something! Come August I can relax a bit as things start to slow down. I have read atrophic (non goitre) autoimmune hypothyrodism is the most common kind but seems to me most people mention goitres and lumps here.

    Off to tend my crops now 😎🌱💐🍓

  • There is a way to test it but you only get it, I would imagine, if you're actually undergoing RAI treatment. Your chances of getting it are extremely remote, but there's no harm in asking about it.

  • Thanks, everybody. With lots of help and support from HealthUnlocked I was managing my Hashimoto up until 2 months ago, when I began constantly sweating and overheating, having night sweats and I've become exhausted from lack of sleep. This lack of sleep has made me feel jittery and irritable and I'm anxious because I don't know what's causing these new symptoms. I'm 56, not had a period in a year, and I was sailing through menopause with very few symptoms. Got bloods done at doctor's, FSH test confirmed menopause. Blood pressure was high for the first time ever. My doctor feels that, based on my low TSH, all my symptoms suggest I have gone hyper - she said that as my thyroid is no longer fighting back against my medication, it's easier now to find the correct dose for me. She wants me to reduce my dose of Levothyroxine, and this scares me because on 75 I was just hypo and ill all the time.

    Hi JollyDolly - you suggest that since my thyroid isn't working then I might need a higher dose in the future. I'm confused. So why does my doctor want to reduce my dose?

  • Andree,

    Even if you were informed your thyroid is deceased, the levels will go up and down until they can figure out which is perfect for you. I have gone through exactly what you have stated. Sweating, no sleep etc. JollyDolly is correct, your doctor would want to increase your meds if your thyroid in not working. I was scared about lowering my dose (my results came back dangerously high) also for the same reasons, but did on the advice of my doctor. A low TSH means you are Hypo, not Hyper, therefore you need an increase in medication. It will be trial and error over a period of 12 months. Everybody is different and really depends on what other medical issues you may have, immune wise. The main positive is the fact they know you have Thyroid problems. Mine was not detected for years and I have lived through hell for a long period. The recent excessive low again had me in bed for one and a half weeks, but I bounced back well again, and quickly this time. Your doctor needs to establish which TSH level is perfect for you overall. As mentioned, everybody is different. My GP was going by the standard ranges, including the T3 and T4, but due to other medical immune problems I have, those ranges are not correct for me. I wish you the best of luck, and do hang in there, things will sort themselves out eventually with the right guidance.

  • Andree

    My hot flushes were blamed on the menopause but continued a long time after it ended then I was diagnosed with overt hypothyroidism. I got sweating and vacillating changes in temperature when I was on levothyroxine and basically felt cold all the time bar the hot interludes. I switched to NDT felt a normal temperature for the first time In years and the night sweating temperature vacillations virtually vanished. I do still get an odd one worse in winter when one is supposed to need more thyroxine to feel well. You can only try modifying the dose to see if it ameliorates them. May be you need more T3 rather than less T4. When a doctor tried to reduce my dose from 125 to 75mcg Levo I demanded to be referred back to my endocrinologist (took them 9 months to get me optimised I was in a dreadful staTe on 75mcg as they titrated up) I called the endo's secretary who advised me to demand a referral back to them and to refuse any change on medication until I was seen by them. That GP immediately backed down as I told her and brandished my results on 75mcg Levo from the endo she claimed none of it was in my notes which seems very odd - or perhaps she had not bothered to read them? I switched GP's fast the new one had read all my notes when I saw him - deserves a blooming medal it is an encyclopaedia británica! He has been much better. You mention you have seen an endo say you want to see them again before meddling with the dose. You may be like me and get short bouts of hyper as your thyroid dies and throws out thyroxine in sudden bursts but I was not diagnosed so was not on any medication the last bout was really pronounced, then nothing but artic hypo so the thyroid must have completely died. Yours sounds identical to what I was told about mine from an ultrasound scan and that was 2 months after I finally got diagnosed and on medication. Endo thought mine was highly unlikely to have any function. Perhaps yours is spitting out its final store of thyroxine. If it is the final hyper stage it will soon stop. I'd go for endo referral. With no test for free T3 the picture is incomplete. They did not treat until my blood test showed I had become hypo as the first showed I was hyper. It only hit me in reality a few days later, I went berserk for a few weeks! It was not very nice.

    Night sweats can be a sign of lymphoma (a popular cancer in my family) just for your information.

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