Newbie - meds & diet questions!

Hello, I've been having my bloods monitored by doctors for years, as my results are indicative of sub-clinical hypothyroidism. Recently they also tested for antibodies, and confirmed that they are present, confirming Hashimoto's. My mother has hypothryoidism, so this runs in my family, so it's looking fairly conclusive that full on hypothyroidism is on the way. My confusion is that, for the last few times I've seen the Dr I've been told I could start a trial of Levothyroxine "If I want to" ..... I'm so confused, as I only want to take medication if it's necessary, not on the basis of just "wanting to". I can't remember all blood work results, but I think he said my TSH results were 5.6, and that I wouldn't have to start taking anything 'til it reaches 10 (my hormone levels are still within normal range). Was I right to say "no" and to continue to just monitor, or have I been foolish and rejected meds that would make me feel better?! My other question is about diet. I keep reading online that people with Hashimoto's ought to avoid gluten in their diet, but neither my Dr, or the Endo, have even mentioned this. I had thought of asking for them to include testing for gluten sensitivity in my next lot of blood tests, but I don't know whether they'd be open to that idea. Is it something that medical professionals recommend, or is it just internet rumours rather than medical fact? I don't want them to think I'm making unreasonable demands and being faddy, but on the other hand, if there is a link, surely they should consider it? Has anyone else persuaded their Dr to test for this?

8 Replies

  • Hi Mandshef, welcome to the forum.

    I wouldn't say you've been 'foolish', you doctor didn't explain things very well. But, it would have been advisable - for reasons that I don't expect your doctor even understands!

    How much do you know about Hashi's? I would advise you to read up on it and get to know your disease - if you haven't already. Hashimoto's Thyroiditis is an autoimmune disease, where the immune system slowly destroys the gland leaving you completely hypothyroid. There are two reasons why you would be well advised to accept the thyroid hormone replacement - and that's what levo is, it's not a drug - now, rather than later :

    1) You already have hypothyroidism. You become hypo when your TSH reaches 3. But doctors don't know that, they've been taught that it's ten! So, if the symptoms haven't started already, they soon will. It has to be said that the ranges are just down-right sadistic, because a person with a TSH of 2 can feel absolutely awful. So, to have a range that goes over 5 is just cruel.

    2) Giving your body thyroid hormone, supports your gland during the antibody attacks. Also, if you get your TSH down to zero, it will even limit the attacks - no gland activity = no antibody activity. But, that's another thing that doctors don't know.

    You are going to find out, in your long journey, that doctors know next to nothing about thyroid. And it's very rare to find one that knows anything about nutrition, and/or how it affects disease. I doubt your doctors know anything about gluten - and if anybody told them, they would probably laugh. But, that doesn't mean that they are right and those that go gluten-free are wrong. I have to say that gluten-free doesn't suit everyone - it did nothing for me. But, it does help a lot of people feel better and lose weight. And, I'm pretty sure that it has been scientifically proved to reduce antibodies.

    Another thing that has been proved to reduce antibodies is taking selenium. But I don't suppose your doctors know about that, either.

    And, on the subject of nutrition, all your nutrients need to be optimal for your body to be able to use the hormone that you're going to be giving it. So, it would be a very good idea to ask your doctor to test you for vit D, vit B12, folate and ferritin. These are the basics.

    When you go for your next test, go as early in the morning as possible, and fast over-night. When you are on levo, leave 24 hours between your last dose and the test. Always do your tests at the same time of day, and in the same way, so that you can compare them.

    And, lastly, always always ask for a print-out of your results. It is your legal right to have one under the 1998 Data Protection Act. Then, if you have questions, post them on here - with the ranges - and people will be better able to answer you. When you get the results for you nutrient tests, post them here, and we will advise you on supplementation - because your doctor won't be able to! lol

  • Thanks so much for your helpful response! I am learning already. I must admit, until recently I was being treated for severe vit D deficiency, so I had already been tested for that. Not sure about the others though. I get the impression from reading posts on this forum, that I'm going to have to learn to be a bit more assertive with Drs! And why they can't explain things as you have just done ... if they'd given me all the info of course I'd have said 'yes' to treatment. I was going to wait 6 months 'til my next blood tests are due, but I'm now considering a return trip to the docs a bit sooner (hopefully armed with some helpful advice this time!). Thanks greygoose :)

  • They can't explain things because they don't know. They only have a very basic - not always correct - knowledge of thyroid. They don't know all the ins and outs. Actually, your doctor is very unusual to offer you treatment with a TSH of around 5 - not even over-range. Most of them want to wait until it's over 10! They can't explain what they don't know. :)

  • I'm kind of in your position as well, although not gotten to the part where my doc says 'you can start medication if you want to'. Then I would feel as you do, should I just jump in now, or should I experiment with dietary changes first? Or do both simultaneously? I've been reading around a LOT over the past couple of weeks and have come to the conclusion that one's gut needs sorting out regardless of whether you are going to take meds or not. In fact, maybe taking meds but NOT sorting out one's dietary issues is contradictory and will limit one's progress.

    I did go gluten-free on the advice of those here, but as yet have not seen any benefits apart from a fall in my BP. My antibodies went up again, so either the gluten-free takes awhile to kick in, or I need to do other changes. My doc actually mentioned I might want to test for Coeliac but also said if I'd pretty much given up gluten then I'd not get a useful result, and also agreed the test can give false negatives. So you could go down that route but be aware it might not answer that particular question, but it does appear at least some GPs connect the dots between Hashimoto's and gluten.

    Right now I'm awaiting my next appointment to see if my doc will give meds, but whether she does or not I'm going to be embarking upon some kind of 'gut reset' diet as I believe I could do with an overhaul, I don't feel great and it's clear there's a lot going on inside that is out of kilter. My advice is to arm yourself with as much info as you can, there's an awful lot to read, but I think the only way we can feel better is to take control ourselves. :)

  • That's interesting Jadzhia, as I am also embarking on a gut improvement program! I'm trying to eat more 'active' yoghurt, more fibre etc. I am aware that you need to still be eating gluten for it to show up on any tests, so I'm reluctant to start removing it from my diet until I've spoken with the dr again. It's going to be useful I think, to have contact with others in the same boat.

  • I helped my gut and got rid of a diabetes type 11 diagnosis, by taking VSL 3 sachets for a month.... Here is the link.... You can buy them on amazon, ebay, all sorts of places....

    Xx g

  • MandShef, don't over-do the fibre when you're on thyroid hormone replacement. It will affect your absorption of the hormone.

    Whilst nutrition is important, and could - theoretically - decrease your antibodies to without the negative range - it cannot health the part of your thyroid that is already damaged. And there is damage because your TSH is over 5. Your thyroid will not regrow, so you will still always need the thyroid hormone replacement. The most you can hope to do is avoid further damage.

  • Thanks again. I really value this advice.

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