Help please

Hey there. I had a total thyroidectomy in 2010 and since then I've been taking 100mcg thyroxin every day. It's never changed and I've always felt fine. Over the last few months I have started to feel drained, tired all the time and the usual hypothyroidism symptoms of tingling fingers/arms/feet, confusion over simple things and aching all over. I went to see my GP again yesterday and I need another blood test. They won't up my dosage with testing but I feel that I am not believed when I explain how I feel all the time. When my results come back 'normal' or 'no change' but I know there is something up, how can I get them to consider upping my meds to see if it is that? I'm already on vit D so it's not that, I take supplements daily as well. I don't think I can cope much longer feeling like I've not slept or that I'm going mad because I have forgotten how to use a cooker! Any help or suggestions gratefully received!

8 Replies

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  • Have you had your calcium level checked ? Sometimes the parathyroids are damaged or removed during thyroid surgery, this can lead to low calcium which would give you the symptoms, especially tingling.

  • Have you had your B12 tested? Is it 1000? If not, low B12 can cause those symptoms, too.

    Although, I have to say, you're on a very low dose of levo for someone with no thyroid. Ask for a copy of your results and post them on here. Could be you're under-medicated.

  • This is why I keep going back. Had b12, vit D and calcium done regularly and all OK apart from vit D - was very low. I've asked if I can have levo increased but they keep saying levels are fine. It's so frustrating when I know what my body is doing. My sister also had Total and she has been up and down on meds but I stayed the same

  • Going up and down isn't necessarily good, either. it means they are just dosing by the TSH.

    Do you have the actual numbers for the B12 and calcium? Fine is an opinion, not scientific fact.

  • Will get them when I get my tft blood results from today. The person I normally see is brilliant and gives my results as exact figures but the receptionists just say 'all normal no further action' which really winds me up.

  • Yes, it would me, too! lol Like they're medically qualified, or something.

  • If anyone has had a total thyroidectomy and is on levothyroxine alone, (my view and some doctors - I'm not medically qualified) would say that at the very least you should have liothyronine (T3) added to your T4 (T4 maybe slightly reduced).

    I have a thyroid gland but levothyroxine didn't make me well, in fact I was much worse with far more symptoms after being diagnosed with a TSH of 100.

    T3 (liothyrone) is a Godsend to me and I am now well. I am not saying everyone would react the same way as we are all different).

    hormonerestoration.com/Thyr...

    Also new Research (link below) has shown that T3 is necessary (the BTA guidelines say T4 only but I am afraid they are so far behind up-to-date info).

    thyroiduk.org.uk/tuk/resear...

  • Hi there just for a quick update! I had my blood results back last week and surprisingly my thyroxin is working... my levels are the highest they've ever been in the 6 years without a thyroid. So much so they are so high I'm at risk of becoming overactive again with no actual thyroid. Obviously there is something more going on so I have gone for more blood tests yesterday. Fingers crossed I get some answers! Thanks for all you help though x

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