Autoimmune reaction to NDT?

I just got blood tests back after struggling to get onto ndt and here are the results:

Ferritin 104.4 (20-150)

TSH 5.68 (0.27-4.2)

Total T4 56.5 (64.5-142)

Free T4 9.32 (12-22)

Free T3 4.03 3.1-6.8

Thyroglobulin antibodies 94 (<115)...was 96.4 in Feb

Thyroid peroxidase109.7 (<34)...was 46.6 in Feb.

Also my vit D is 54 (insufficient is 25-50 and we are just coming out of winter), B12 480(insuff is 140-250), folate 45.4 (8.83-60.8) and ferritin 104.4 (20-150)

I think I should swap to T4/T3 combo and increase my dose. Any thoughts anyone?

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26 Replies

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  • Shanza,

    You are undermedicated. What dose NDT are you taking and how long have you been taking it?

    You need to supplement 5,000iu D3 daily for 3 months to raise it to around 100. Take vitD 4 hours away from thyroid meds.

    B12, folate and ferritin look fine.

  • Okay, I'll take vit D as suggested. The main problem though is my antibodies that have increased. I am feeling ill with it and simply can't get up to a therapeutic dose on ndt. I have tried since Feb and now I think i should move to combination t4/t3 as I read somewhere that ndt can cause an increased autoimmune response in a minority of Hashimotos patients and I think this may be what is happening to me.

    Does anyone have a suggestion as to what a good starting dose of t4/t3 would be and what dose to aim for given that my gp was content when I was on 80mcg of liquid thyroxine prior to Feb?

  • Shanza,

    Your antibodies have risen because your high TSH is over stimulating your thyroid gland.

    1.5 grains is equivalent to 100mcg Levothyroxine so you will need more than 80mcg liquid thyroxine. Are you intending to resume taking liquid thyroxine or will you try Levothyroxine tablets?

  • Are you daying that if i increase my dise of ndt my antibodies will go down? I am on 3/4 grain ndt at the moment which I thought wad the equivalent of 75mcg of levo? My thoughts were I would go back to the liquid and take t3 alongside in a dose that mimics our natural ratio but I don't know if this is the right way to take t3...?

  • Shanza,

    Yes, antibodies should go down when you are optimally medicated. 1 grain NDT has 38mcg T4 + 9mcg T3 which is equivalent to 65mcg T4.

    If you resume taking 80mcg liquid thyroxine try adding 12.5mcg T3 split into 2 doses 8-12 hours apart but have a thyroid test including FT3 6-8 weeks later to check levels.

  • Thank you. So maybe I should try bumping up to 1 grain ndt first, before trying the t4/t3 route? At the moment I take 1/2 grain around 6.30am and 1/4 at 2.30pm. When would you advise the last 1/4 grain?

  • Shanza,

    I think it's easier to tweak NDT than to start over with something else. Why not add 1/4 to 2.30pm dose and another 1/4 at bedtime. You can add another 1/2 grain in two weeks.

  • I'm a bit nervous to do that as the last time I tried to raise the dose at 2.30 by 1/4 grain, I got bad palpitations and anxiety and couldn't sleep(those symptoms now settling), along with the thyroid area ache starting and joint pain increasing (which I still have now). Do you think that perhaps raising the dose by half a grain overall I might avoid those symptoms?

  • Shanza,

    I can't see why raising 1/4 grain would cause palpitations and insomnia but 1/2 grain wouldn't. If you prefer raise in 1/4 grain increments. If you get palpitations or insomnia just cut back to the previous dose and try again in a week.

    Joint pain was probably due to low vitD.

  • Okay. Thanks I'll do 1/4 grain increase to begin with and take vit D

  • When you raise NDT your own thyroid reduces its contribution, so the symptoms you have maybe more a slight worsening of being hypo until the ndt gets to work.

    With those labs , there's definitely need for more NDT , and if it were me , I would be going up a half grain immediately and looking to raise again in two weeks or less. And personally I don't think I would look at another blood test until I was up another grain.

  • Hi shanza,

    I am in a similar position as you, although my TSH is much lower than yours.

    I am also wondering if a T4/T3 combo will suit me better.

    I take 1.5 grains of W.P. Thyroid and could get any higher without getting pals. and high B.P. which was maybe understandable as at the time my FT3 was 5.2. It has now dropped to 3.58.

    My TPA antibodies have risen like yours but only by 4.2 and are just under top of the range.

    Have you tried a T4/T3 combo before?

  • No I haven't. Don't know how to take it yet either! I'm in contact with a private gp in London who will advise me but I would like to get patient experience advice as well. That has been very helpful so far...

  • I think the ratio in NDT does always suit everyone and maybe a T4/T3 combination would be better, but like you I am not sure how to change over.

  • Lucylocks,

    There is 57mcg T4 and 13.5mcg T3 in 1.5 grains so 50/75mcg Levothyroxine alternate days and 12.5mcg T3 would be a starting point.

  • Many thanks Clutter,

    if I decided to change over, could I maybe take 75mcg. levo. per day plus the 12.5 mcg. T3 as both my present levels are low and I have hypo. symptoms.

  • Hi Both. Just thought you might like to hear my 2 pennies worth. When I switched over to NDT it took me awhile to settle down - a good 6 months. During that time I had many of the symptoms you describe. I started on Nature Throid but then decided to witch to WP Thyroid which I have found to be better. Getting the right dose has stopped palpitations.

    Clutter knows what she is talking about and helped me a lot. I think it takes a good 6 months or longer to bed in to a new medication, especially if you have been under medicated for quite awhile and also have other deficiencies. I found I had to also take a B supplement and magnesium to start to feel better. Finding the right NDT is no different to suiting another brand of medication - we are all different. Personally I think you might need to be a bit more patient and get the right dose before switching from NDT to something else.

    I hope that helps.

  • Yes it does help. Thanks for that. It's difficult to know how long to bear with symptoms before deciding to try something else unless someone has been there already and can advise. How long did it take you to get to your optimum dose?

  • About 6 months but that was with the change to WP Thyroid after 2/3 months. My antibodies also did a few flips but settled again.

    Do you have another autoimmune conditions as they can influence things? I have two others, Sjogrens and Hughes Syndrome. It complicates things as Im obviously taking medications for those.

    Ive never regretted taking the NDT which was recommended by a Prof of Endocrinology. So many of my gut problems have just gone away.

  • I should also add, what is your Vit D doing as that can influence antibodies. A world famous immunologist gives his patients Vit D as a matter of course as he says it reduces inflammation and therefore antibodies.

  • Thank you, but I have been taking W.P. Thyroid for 15 months now. I had a hard time raising it to 1.5 grains.

    I had a couple of good months towards the end of the summer last year, then symptoms crept back in. I had trouble raising it further as my T3 was at a good level at 5.2 but now my T3 is low I a may be able to raise now.

    I shall try another increase and then if this does not help I think I will try T4/T3 combo.

  • I would say that Sticky blood mentors vit d idea is a good one. The dead giveaway was your comment that things were better for a couple of months at the end of the summer, this is exactly when your vit d would be at its naturally acquired highest before dropping off over the winter.

    I have just taken loading doses to fix my deficient vit d and my insufficient folate and b12 and the reduction in fatigue levels is amazing. Granted I am around optimal levo dose already but prior I was sleeping for England 12 seemed to be minimum requirement. Two days ago I woke up after 10 hours with that muggy too much sleep feeling - for the first time in years!! We all know that we need proper nutrients but I dont think we realise what a physical effect poor levels have, I certainly didnt.

  • Thank you Phoenix605,

    I did wonder about the Vit D connection.

    I felt dreadful around this time of year, four years ago and my Vit D was 22.

    My Doctor gave me the run of the mill 800iu. but I purchased my own and I started supplementing 6000iu daily. I now use 3000iu daily.

    My last test was in February and it was 71.

    I have just realized, I have been taking iron since February and wonder if this has had an effect on my NDT working.

    Glad you are feeling better.

  • I asked the forum about vits and the consensus seemed to be that vit d is best around the 100 mark, b12 above 500 and up 7-800 if you can manage it, folate mid range and iron above 70 just for thyroid hormones (natural or synthetic) to be absorbed and converted properly. Iron and calcium can both stop your meds being absorbed and must be taken well away from meds, at least 4 hours. I know most also recommend taking 1000mg vit c with iron to aid its absorption snd combat constipation iron causes

  • I was told today my wp is on backorder over a month. They shoved me on nature.

  • Thank you,

    I need to get my Vit D up then. My others are at pretty good levels.

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