Autoimmune thyroiditis

Hello Everybody. Im new on here. Have been looking through post to try and get a better understanding of what doctors told me whats wrong.

Iv been feeling unwell for about three months now. I thought I just had a virus and would get better soon but i didnt. I first started by having poorly eyes which was very sensitive (still are) to cold or light,they started getting blood shot for about 2 weeks but then got better by themselves I went to the doctors about this but they said there was no sign of infection and there was nothing they could do. I had patches of dry skin which realy itch again I went to doctors they did give me steriod cream because they said it was infected. TBH I thought nothing of these two things but then I started getting pins and needles when i had lack of energy and one morning woke up with a serve headache and then I started having headrushes all the time (like when you stand up to fast and you can feel blood rushing to your head)...but these are constant and over EVERY little movements like even turning my head. Then I just felt extremly tired and every little thing seemed hard work. I lost my voice for few days and now it is constantly hoarse, last thing was all smallest noises seem extremly loud and I find my self always cold.

So I went to the doctors and they sent me for blood tests told me I had hypothyrodism, they said my levels where dangerously low and so I had to start taking levothyroxine asap. However I felt no better so after a week I went back to the doctors and they told sent me for another blood test, when the result came back they told me all my levels are now how they should be but I have had something called autoimmune thyroditis and thats whats caused my hypothyrodism but I would be better in a few weeks they also put me on vitamin D. I left it over a month hoping I would get better (like the doctor said)but really struggled to cope feeling so unwell especially while looking after my two young children, so I went back and the doctors have now put me on beta-blockers now which give me sleepless nights or nightmares. Iv been told all my levels are now what they should be but I cant understand why I still feel poorly and they doctors have refered me to the hospital and Im worried about further tests and what for.

I do feel abit better than when it all started because most the syptoms I talked about earlier seemed to be at bay however I have found a link to my eating habbits and feeling unwell. I have always struggled to eat 3 set meals on time a day and tbh still do, but Iv found I now HAVE to eat 3 meals a day and cant go more than 4 hours with no meal because if i dont eat all the symptoms come back, starting with the head rushes to the tiredness then i get pins and needles bad starting in my hands then legs,feet. Iv been tested for diabetes and told I have not got that. Im starting to feel quite fed up and just want to understand how I can permenantly get better.

36 Replies

  • If you can get a print-out of your latest blood test results for your thyroid gland and post them with the ranges. We shall be able to help you further. You will learn that few doctors know how best to treat patients. The make their decision on the TSH alone and ignore symptoms.

    Your doctor should do, if he hasn't already done so, give you a Full Thyroid Function Test. This should be at the earliest possible and fasting. If you take thyroid hormones you should allow 24 hours between dose and test and take it afterwards.

    TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. Get a print-out with the ranges and post for comments. If doctor wont do these you can get a private test from a recommended lab and get a small discount and also get a small sum which helps run their office.

    If you have thyroid antibodies and they're high you'd have an Autoimmune Thyroid Disease called Hashimotos.

  • Yes that is what my doctor had told me I have had but tbh I still dont quite understand, is this something that should of by now gone away?

    I will phone up tomorrow and ask for my results, do I have to pay for the print out? Thankyou for your reply

  • Actually when I was informed the doctor said it was call auto-imune thyrodidtis disease which i have had so I asked (because I had researched) Is that also what is called hashimotos but the doctor told me yes similar but not exactly the same. Im quite confused to be honest and just wish i could find a way to make myself feel better constantly instead of living on threat of becoming ill suddenly (like before) or just when im due a meal.

  • No, it's your doctor that is confused. Hashimoto's thyroiditis and autoimmune thyroiditis are one and the same thing. It's just that doctors don't like calling it Hashimoto's, for some unknown reason.

    Are you still taking the levo? You should be. Hashi's doesn't just go away. It's there for life. It will gradually destroy your gland so that you will be permanently hypo, and need levo or some other form of thyroid hormone replacement.

    The problem with Hashi's is that it doesn't just come and go, it has what we call hyper swings, where suddenly, there will be too much hormone in your blood, and you will have hyper symptoms. Then, it will go back to hypo. In order to reduce the severity of these swings, people find adopting a gluten-free diet very helpful.

    A lot of your symptoms sound like nutritional deficiencies - which are veyr common in people with hypothyroidism. Ask your doctor to test your vit B12, folate and ferritin. And, if you get your results and put them on here, people will help with supplementation. But, while your waiting, you could try taking some selenium - you can safely take up to 200 mcg without a test. This will help with converting your levo into the active hormone, T3, and will also reduce the antibodies.

    What did your doctor give you for your vit D? And how much? I ask because doctors are notorious for prescribing the wrong thing when it comes to nutrients!

  • thankyou for your reply im taking - fultium D 800 iu for my vitamin D and my levo is 100mg im now also on propranolol (beta blockers) 40mg..which i hate tbh because i have to take 3 tavlets a day and they r giving me horrible nightmares or no sleep which is hard becuase im already quite tired.

  • I don't think that's a high enough dose, really. But, it depends what your results were.

    Your levo is also a low dose. When did you start taking that? Have you had a test since?

    Why are you taking beta blockers? They interfere with your levo.

  • tbh I dont really know why doctor put me on beta blockers Im worried they wasnt sure why i was still feeling unwell and tried to just put it down to anxiety as they know they were refering me to the hospital. I really hate taking them and keep thinking il just stop but it says on the pack DO NOT STOP TAKING UNLESS DOCTORS ADVICED. the doctor did test my blood and pulse ect just before deciding to give me them but didnt tell me if it was high or low ..iv always been kind of ok with blood pressure and im 27 now

  • oh and i started the levo in june but was out on 50mg then it was upped to 100mg but dct told me my results are correct with that dose, she was going to up it anyway but told me it could be risky possible making me hyper instead of hypo .. and i didnt really want to make myself any more ill so i agreed to stay on 100mg

  • Oh, more doctor rubbish! Taking levo cannot make you hyper if you are hypo. It's a physical impossibility. Levo does not make your gland start working again - and over-working, at that. It just replaces the hormone your thyroid can no-longer make for itself.

    You could become over-medicated, but that doesn't happen at the drop of a hat. And, if she does her job correctly, and tests your levels every six weeks, she will see if you're over-medicated, and can reduce the dose. Honestly, they do talk a load of rot!

    So, if you've been on 100 for more than six weeks, tell her you want a blood test, now. Then, get a copy of the results and post them on here, and we'll be able to set your mind at rest.

    For the beta blockers, I suggest you ask her why she prescribed them. Yes, they can be for high blood pressure, but your high blood pressure is more than likely due to your low thyroid hormones - it's a hypo symptom.

    Tell her that they make you feel ill, and you would like to come off them. Then, she can help you come off them gradually - you shouldn't stop cold turkey, even though you haven't been taking them for long.

    She can't force you to take something you don't want. She is there to advise you, not dictate to you. You have a right to say what you want and what you don't want. :)

  • thankyou i will make an appointment asap to see her and il phone tomorrow for the results thankyou for all your advice x

  • You're welcome. :)

  • Some beta blockers interfere with levo.I am on beta blockers for angina type symptoms that started when I took levo and do not seem to have problems with the type I am on.

  • Your heart can race after a bit of physical activity for a few days after stopping a beta blocker.

    The information is vague, but it's best to allow a two to four hour gap between taking your levothyroxine and the beta blocker.

    I was on atenolol for a few months, taking it an hour after my levothyroxine. Despite increasing the dose of levothyroxine several times, my TSH stayed fairly constant.

  • oh i didnt know that i have been taking the levo and beta blocker together in the moring..then one at dinner and one at evening. I was thinking of just cutting down to the two beta blockers but worried abit as it says do not stop takin unless doctor adviced on pack, im going to ring doctor tomorrow and ask about the beta blockers

  • I was on the minimum dose, and just one a day, so tapering off your dose (if you and your doctor decide to) should be done more cautiously. My cardiac consultant gave me no advice whatsoever!

  • oh i didnt realise it was dangerous. thankyou for telling me

  • Take nothing but water with levo and leave 1 hour before food/ coffee and two hours before vitamins and at least four hours before the beta blockers.

  • When we're hypo our pulse is usually low and it can make our heart struggle.

    Go to the date December 20, 2003 on this link. Excerpt:

    Dr. Lowe: Most likely, your lack of progress isn’t due to something missing from your treatment program, but to something included in it—propranolol. Recall that in Your Guide to Metabolic Health, we explain that for patients to achieve optimal metabolic health, they must abstain from using metabolism-impeding drugs. Propranolol is one such drug.

    Propranolol is a beta-blocker, and it’s a highly effective antidote to thyroid hormone. It’s so effective that many patients who are overstimulated by thyroid hormone (as in Graves' disease) use it. Propranolol relieves these patients’ overstimulation by indirectly blocking the cellular effects of thyroid hormone.

    I'm always baffled when a doctor prescribes propranolol for a hypothyroid patient. If the patient isn’t taking thyroid hormone, propranolol is likely to worsen her hypothyroid symptoms. If she is taking thyroid hormone, the drug will nullify most benefits the patient would otherwise get from the hormone. Hence, there’s no sense whatever in a hypothyroid patient taking propranolol,

  • oh thankyou for your advice, where would I get the selenium from and im not sure all about the gluten free diet, I really wouldnt know where to start :(

  • You can get it on Amazon - that's where most of us buy our supplements. There's plenty of choice, but how about this one for starters :

    I'm afraid I can't help you much with the gluten-free diet, I don't do it. But, if you put up another post, asking for help, I'm sure you'll get plenty! :)

  • thats brill thankyou i shall take a look :)

  • A book called gluten free on a shoe string is a good start to read. Good luck

  • Some charge a nominal sum for paper/ink. Some don't. It's always better to get a print-out as mistakes can be made by the person on the phone or writing it down.

  • Try not to worry too much at present till we get your results. Also I have just looked up Autoimmune Thyroiditis and it is also called Hashimoto's so the antibodies can wax and wane but going gluten free can help reduce antibodies. Also pins/needs the B12 should be tested.

  • I think iv actually had all these test done, i remember reading them on the blood test's paper i had to give into hospital before i went but I will phone them tomorrow and ask. Im not sure what is the B12 Is testing for though?

  • B12 is a very important vitamin. :)

  • yeh thankyou I think i actually saw the vitamin in asda and was very tempted to buy it because the bottle was reduced to 70p but i decided against becuae i remeber reading on the levo tablets leaflet it saying if i take any other medicines to tell dct first

  • You shouldn't supplement B12 without getting it tested first. And, once you've started supplementation, you have to come off it for five months to be able to test it and get a true result!

    Besides, you don't get quality supplements in Asda! Or any other supermarket. I bet it was cyanocobalamin, which you can't absorb, and that's why it was cheap.

  • oh right well im glad now i decided against it thankyou. I just thought maybe it would help me. I just feel like im on borrowed time all the time until i start feeling ill again and getting fed up tbh..also doctor said it would be some time before hospital referal comes through :(

  • Sarah, This will help you understand how your thyroid and adrenals work. Also a link about the blood tests you want to check out.

  • Thankyou

  • oh just researched b12=anaemia. Yeh I think iv defo had that test I remember dct telling me im not

  • It's not just low B12 that causes anemia, it can also be iron anemia. They don't seem to distinguish between the two.

    But, just because you don't have anemia, doesn't mean that your levels are optimal. You could still be deficient in both B2 and iron. You really must get hold of your lab test results, so that we can see exactly what was tested. Otherwise, we're just guessing. :)

  • sarahbear88 Hashimoto's is autoimmune thyroid disease. This is where the antibodies attack the thyroid and eventually destroy it. It won't go away. Hashi's isn't treated, it's the resulting hypothyroidism that is treated.

    To help reduce the antibody attacks you should adopt a strgluten free diet. Gluten contains gliadin which is a protein which triggers the antibody attacks. Many members have found this helps enormously. Some people also need to be dairy free. Supplementing with selenium also helps reduce the attacks as does keeping TSH low or suppressed so you need a dose of thyroxine which will do this.

    To achieve the optimal dose of thyroxine you should be retested 6 weeks after you are originally prescribed thyroxine and dose increased, retested after another 6 weeks, dose increased, etc.

    When having thyroid tests always book the first appointment of the day, leave thyroxine off for 24 hours and fast from the night before, you can have water only. Breakfast and thyroxine when you get home after the blood draw.

    Here's some reading about Hashi's to help you understand what it's all about.

    What is the Vit D you have been prescribed and dose? Hopefully not Adcal. Usually they don't give anywhere near enough so if you post your Vit D result members can advise. You will also need to supplement K2-MK7 and magnesium as these are co-factors needed when taking Vit D but your GP won't tell you this because he doesn't know.

    The pins and needles are probably low B12 so get all the tests mentioned by Shaw's, post the results with reference ranges and members can advise.

  • Thankyou for your reply and help im on fultium D3 800 IU..for my vitamin d. I will have alook at those links thankyou

  • If you are deficient 800IU ISN'T enough.

    Some doctors knowing this and not being able to prescribe anything else under CCG guidelines tell patients to take 5-8 per day. However you can easily buy your own online.

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