Thyroid levels not settling any help

Thyroid levels not settling any help


Just need a bit of advice of possible. I hurt everywhere. Recently diagnosed with fibromyalgia, had a total Thyroidectomy in 2014. I have graves and acquired hypothyroidism now. I'm on 225mcg of levo (ordered my first lot of ndt yesterday, haven't started yet). My levels are all over the place. My TSH- goes from being "normal" to 27, then most recently 17, then it went back up to 21. I never miss my dose, and I don't know why it keeps going up and down. I take folic acid now because my folate was low, and take vit d and other supplements. Nothing is helping. Anything I can do to bring my tsh down?

10 Replies

  • I'm sorry you are feeling so bad. I think to give someone levothyroxine alone when they've had a thyroidectomy is awful (my opinion and I have a gland). Your TSH is also swinging around and have they checked you for thyroid antibodies?

    I don't think you are converting your dose of levo to sufficient T3 (that's it's job) so why don't they check your Free T3 and Free T4 as that is the most informative when patient is complaining. I'll give you a link which explains these.

    Also if you have Fibromyalgia I'll give you another link which is self-explanatory.When we're not improving we do as you've done, research, ask questions and put two and two together to get a result and many on this forum have done so.

    You don't have to read all at once just take your time as I've given quite a few links.

    I know how painful insufficient hormones can be (by that I mean what they prescribe other than levothyroxine).

    When blood tests are due it should be the very earliest possible, fasting (you can drink water). Also allow 24 hours gap between last dose of levo and test and take afterwards. This gives the best result for us. Food interferes and TSH drops throughout the day so might mean the difference in GP adjusting doses (not good).

    I'd try T3 first before NDT because if you are Thyroid Hormone Resistant T3 is needed and some of us cannot convert T3 properly, i.e. in levo or NDT.

  • Thank you for your detailed reply. I had some blood tests done on Friday and I believe for the first time ever my rheumatologist has requested my thyroid antibodies to be done but not sure about my t3. I'm hoping when my ndt comes it will help because I think like you said I'm not converting at all, so levo is doing absolutely nothing basically lol. My ndt can't come quick enough. I'll have a look through all those links you sent now xxx

  • Lumac,

    Do you observe the following:

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

  • Hi clutter , up until about 4 months ago I was taking all my tablets (levo and supplements, including lansaprazole a proton pump inhibitor, altogether!). No one ever told me that PPi tablets like lansaprazole affect the absorption of levo ... Not even my endo who prescribed it. It was only after doing my own research I found out that it should be taken 4 hours apart. I now do take them seperatly but I'm still getting the swinging TSH level xxx

  • Lumac1988,

    Coeliac disease is the most common reason for malabsorption of Levothyroxine. Ask your GP to check tissue transglutaminase (ttg) to rule out gluten intolerance. If ttg is negative your GP should refer you to gastroenterology for further investigation into possible malabsorption. Even if coeliac disease is ruled out you could try a 100% gluten-free trial for a few weeks anyway to see whether absorption improves. You need to continue eating normal amounts of gluten daily for six weeks prior to ttg testing.

  • Hi clutter i had a coeliac test on Friday so waiting for results of that. I've started going gluten free cause I feel better when I don't eat gluten xx

  • Not only is the Levo affected by the PPI - so will your B12 and other vitals. Do you know your B 12 level ?

    B12 Deficiency is a neurological condition - not just a vitamin one 😊

  • I am sorry for how you are feeling. Yesterday one of the admins posted a few videos on B12.

    The first one is a bit long but so so informative. Please watch them. (((Hugs)))

  • if you are like my husband and others who have originally had Graves and then surgury only NDT will restore you to health

    it can take a year on full replacement dose to really get well but you also need to be sure your vitamin levels are perfect and ensure that you only use stainless steel or glass or cast iron cookware

    never ever use aluminium or non stick coated or foil or electric frypans,slow cookers etc and phone your water co to check if they use alum or any form of aluminium or flouride in their treatment plants

  • Fibromyalgia is poorly treated under active thyroid.

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