Thyroid didn't work, then it did, now it doesn't!!

Hi, I am new to this page and wondering if anyone can help me. I was diagnosed with under active thyroid after suffering with constipation for 2 yrs. They didn't test me for thyroid as I was a size 6/8 so they assumed I have stress related IBS. I was on 50mg Levo for 6 years but in 2010 they increased my dose wrongly to 75mg and caused me to get racing heart and lost loads of weight etc, made me quite poorly. Had to start on beta blockers as having panic attacks until thyroid back to normal. Since this my thyroid was all over all the time and they couldn't get the meds right.

I was taking different amounts at different times of the day and split doses to try and get a balance. In the end I stopped taking everything and in 2012 after loads of blood tests they found my thyroid had started to work again! Since then I have had checks and it's been normal. I started to feel abit sluggish and foggy brained over Christmas and putting a little weight on so decided maybe needed another test. I am bang in the middle of the range for T4 (range 10-21) but my TSH is 4.39 (range is 0.27-4.2). My doc knows I'm really sensitive now to Levo as suffered irregular heart beats since 2010 error so only wants me to take half a 25mg Levo tab a day to see if this slight dose will put me back into the range.

My argument is that why can it just work ok on its own and could it be anything else. He said flatly no but after reading all your comments and other sites and what people say about vitamins and other levels, I'm not convinced. We really want to start a family and I know my thyroid needs to be correct for this to happen and if this means taking the Levo I'll have to but I just wondered if anyone has had any experiences of the TSH just been slightly out of range and whether gluten free, diary free and getting my vit levels checked will make this much of a difference. I'm finally learning to cope with my funny beats now and then and haven't had any panic attacks for ages that I'm scared the Levo will start all this again. I know I could be wrong but I just remember all the going on and feel scared to take. Thank you for reading this.


4 Replies

  • I think that your TSH results bouncing around all over the place suggests that you have autoimmune hypothyroidism (Hashimoto's Disease). Going gluten-free helps lots of people who are hypothyroid and it does reduce antibody levels in some people.

    Getting your vitamins and minerals (vitamin B12, vitamin D, folate, ferritin and iron) up to optimal levels will also help how you feel, and should improve your T4 to T3 conversion.

    Low iron can affect the heart. Low vitamin D can cause aches and pains. Low vitamin B12 can cause brain fog, memory issues and dementia-like symptoms, as well as neuropathic damage to the body. (This is a very simplistic summary, but I'm sure you get the idea.)

    On the basis of the TSH results you give you appear to be very under-medicated. If you find levo hard to tolerate there are other medications - T3 and NDT (natural dessicated thyroid), but they are very hard to get out of doctors because of expense and for other reasons. It is possible to treat yourself, but before doing that I would suggest asking for a different brand of levo to any that you have used before (keep records of make, batch number and batch expiry date from now on.) Another possibility is asking for liquid levothyroxine. Some people with tolerance problems cope better with this.

  • You may have a fluctuating thyroid like the women in my family. Without meds our thyroid tests go back and forth. My Aunt and I are wiped out if we don't take the levo but my mom and sister don't take any. I would think about waiting on the meds and seeing how the test looks next month unless your symptoms are bad.

  • With reference to wanting to get pregnant, read this page :

    Read the section entitled "Pre-existing overt hypothyroidism". It gives you an idea of what you should expect from your doctor.

  • Thank you for these comments I have made an appointment to return to the doctors to have all of these checked. This week since I posted last I have cut out all gluten and diary and have stopped taking my propanolol which really I only took because of anxiety issues but I read that this can interfere with the function of thyroid also and I must admit I do feel marginally different already. I notice that I don't seem to feel as tired on an evening and have more go in me. I also don't think my cloudy brain feels as bad? Whether this is just psychological I don't know but I do think my diet has made things slightly better.

    I'll still have all the tests for vit and minerals as suggested by others and see what that says.

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