Advice please

I have ordered NDT as although I don't seem too bad on levomI haven't got optimum health either. Also have read on web a FDA report on how synthetic thyroid such as levo is very unstable and unsafe in that the potency can vary from batch to batch.

My question is could some dear soul advise me on starting dose and should I take a reduced dose of levo with the NDT or stop the levo? Have gleaned from others posts that levo stays in system up to five days. I want to be prepared mentally on what to do before my NDT arrives.

Do I tell my doctor I am to self medicate with NDT I am afraid he might refuse to test my bloods.

Any advice would be very helpful as I am very ignorant of this.

I have a blood test coming up next week but think it is because one of my test results were a bit high. Test results (June 30th) were:

TSH 3.61. (0.35-4.5)

FOLATE. 12.3. (4.6-18.7)

B12. 389. (>180)

Hb 145 (120-160)

HbAlc 145 (<41=normal)

Ferritin 92 (13-150)

I assume the high one he means is the HbAlc as he said it could have been that I might have knocked myself or had a scratch which could have made the reading a bit high.i dont understand what the HbAlc means.

hope someone can help me with this.

10 Replies

  • Well, the HbA1c is high, assuming that isn't a typo. It's a test used to diagnose diabetes actually - see here:

    But your TSH is also rather high, suggesting you do need an increase in Levothyroxine - are you still on 75mcg? Many feel better when they're medicated enough to get that TSH reading under 1.0. Pity there are no FT4 or FT3 results there, as those are needed in order to really work out what's going on with your thyroid. However, many GPs are told (and believe) they need nothing but the TSH.

  • Yes I am still on 75mcg levo but doc says because I look and sound so well he didnt seem the need to up my dose. Sorry yes the HbAlc was 40 not 145 (typo)

    No they dont obviously do the t3/t4 if tsh is in range.

    thanks for your advice.

  • LOL, maybe you should go in with unwashed hair and look at your feet the whole time. If you were as well as your GP seems to think you are, you wouldn't be buying NDT!

    Honestly, GPs. I never get anything but "lose weight" when I go - I'm just not good enough at acting "ill". 😧

  • And I'm not sure what he thought was too high, if it wasn't the TSH - which is definitely too high for someone on Levo.

  • Yes it seems like you are being conned because they have the power over your meds and your body.

  • Win, If you don't feel bad on Levothyroxine with TSH 3.36 why not try adding half a grain (30mg) to your Levothyroxine rather than a full transition to NDT. You are undermedicated on 75mcg so half a grain may make a positive difference.

    1 grain is roughly equivalent to 75mcg-100mcg Levothyroxine.

    If you decide to switch:

    Week 1: Reduce Levothyroxine to 37.5mcg and introduce half a grain (30mg).

    Week 3: Stop Levothyroxine and increase to 1 grain.

    Week 5: Increase by half a grain if necessary.

    You can increase further but do so in quarter grain increments at fortnightly intervals so you don't overshoot your 'sweet spot'. You should hold at 2 grains for 6-8 weeks and have a thyroid test including FT3 before increasing further. You can order thyroid tests from Blue Horizon and Genova via Blue Horizon do a comprehensive thyroid panel and vitamins for £89 after the TUK discount.

    Your GP might agree to monitor your bloods if you tell him you are self medicating NDT but it will only be helpful if he agrees to test FT4 and FT3 in addition to TSH.

    B12 is low, 1,000 is optimal. Supplement methylcobalamin 1,000mcg sublingual lozenges, spray or patches and take a B Complex vitamin to keep the other B vits balanced.

    Ferritin and folate are good.

  • THANK YOU Clutter for your comprehensive info it is just what I needed as I havent got a clue about these things.This forum is a God send.

    I now can feel confidence about self medicating instead of confused and fearful.

    I have upped my b12 after you gave me some advice after showing the blood tests of june 30th. and i sure feel much better for it.

    i will post my comments of my progress if any when I have any in probably a couple of months or more.

    Bless you

  • I would simply replace 75mcg of Levo with 1 grain of NDT for a week

    then replace a further 75mcg of levo with 1 grain of NDT

    and continue increasing by half a grain every 3 weeks till you feel better

    It can take at least a year to feel really well on NDT because damaged tissues need to heal

    Don't bother telling your Doctor because its doubtfull he can tell from blood tests if your careful not to take any thyroid meds for at least 24 hours before hand

    When your well and bouncing again is the time to educate GPs

  • Maybe because levo has been withdrawn and its potency suspected? Start on alow dose with NDT and build it up over a few months, personally I stoped taking levo for 2 weeks before starting NDT as the levo was not working. Whatever you do DONT directly swap the levo for NDT as it will be too much for your system to handle, there is everything you need in NDT, T1, T2, T3, T4 and calcitonin.

  • Great advice from you all and so informative. I will keep thinking on it all and it has helped me to be less fearful of self medicating. Thank you all with a big hug!😀

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