NDT dosing - self medicating - advice please?

I have been on NDT 1x grain for just over 2 weeks and was going to get a BH blood test done 6weeks from starting. Then I read on here somewhere that increasing the dose by maybe half a grain every 2 weeks is one idea and then get bloods checked when symptoms improve.

My TSH was 2.95 (0.4-4.20) in July from 4.39 last March after being on 25mcg Levo from April to July.

In March Free T3 was 4.51 and Reverse T3 was 23, Total T4 was 100 (65-142),

Free T4 was 14.86 (9-23) in March but went up to 17 by July on 25mcg Levo.

From July GP agreed to increase dose to 50mcg Levo, but low dose meant that symptoms still haven't altered at all.

On 6th September I started self medicating NDT after GP told me she would not increase Levo any more in future from 50mcg so I felt I needed to take charge from there on.

Could people give me their ideas about whether to stay on 1x grain of NDT for 6 weeks and then get Full Thyroid bloods done or should I try increasing by half or quarter grain every 2 weeks to see if symptoms start improving.

I do know that some of my vitamins and minerals were down at the time of the last blood test, so have been trying to boost Vit D, Calcium, Folate, Ferritin both in diet and supplements but don't know what their current levels are yet until next blood test. I am aware of the need to keep these all at optimum levels too.

Any guidance to help me move forwards would be very much appreciated.

My next move will be to try T3, but tbh I found NDT easier to get hold of and thought it was the next best step to try first.

Thanks in advance

Jbthyro x

13 Replies

oldestnewest
  • If I were you, I would increase by half a grain, every two weeks, until you get to 2 grains. Then stick at that for six weeks, and then get tested. No point in spending money on unnecessary tests. :)

    Do you think you really need to supplement calcium? It's not a good thing to take calcium supplements unless absolutely unavoidable. Take vit D3 will increase your absorption of calcium from food, so you should be taking vit K2 with it, to make sure the extra calcium goes into the bones and teeth, and not the tissues.

  • Brilliant greygoose, thank you so much.

    I am only tackling calcium in diet at the moment and take vit D3 and vit K already so that puts my mind at rest because I was worried about supplementing calcium too from things I have read on this forum.

    I will try that increase with the NDT.

    I am due a blood check with the GP in October, is that likely to look scary to her after being on NDT? I am not telling her at the moment so that she keeps prescribing T4 in case I need it yet to combine with the NDT! Who knows yet!

    so grateful to you

    Jbthyro

    x

  • Well, your TSH will go down considerably, but who knows how far. It's unpredictable. But, it is much too high at the moment. But, if she wants to reduce your T4 a bit, that won't matter because you aren't taking it, anyway! lol

    However, you are going to have to come clean, one day. But, if I were you, I would wait until I felt much better, because then you can say to her - you see! It works! :)

  • thanks greygoose,

    they were my thoughts too, so thanks x

  • You're welcome. :)

  • That's what I did!

  • Well it depends on how you feel? NDT dosing is by both symptoms and blood. So, really, how do you feel? Do you feel- not great/ok/fine/great/awesome?

    I started NDT in June and was originally on 75mcg (but so not feeling great)- I increased 1/2 every other week until 2, held for a month then tweeked till now I'm on 2 1/2 grains which sounds like a lot more but I feel awesome, my body temp is a bit better and heart rate is no longer in the low 50s (damn, I knew I wasn't that fit).

    If you're not already, I suggest you start keeping track of your body temp (do it same time every day) and heart rate as that's a good indication of improvement and going over the top. If you are not feeling great on 1 grain (but hopefully better), then add 1/4 or 1/2 grain every other week, reviewing every time your body temp, heart rate and symptoms. You might not need to go all the way up to 2 and your body might not be able to take 1/2 (the last 1/2 grain I added had to be done by 1/4 every other day to start) that's why it's really important to start listening to your body closely. It'll tell you when to stop and when it might want more.

    Good luck!

  • Thank you vixvixvix, my basal body temp has been 36.5 for over a month, no change since starting NDT, and pulse seems to be decreasing slightly from 80 down to 77.

    Symptoms not improved at all, seem to have more aches and pains in fact (originally diagnosed with Chronic Fatigue 15yrs ago but exhaustion disappeared once on a gluten free diet due to celiac disease diagnosis). So it is the muscle and joint pains that give me most problems and all the other typical symptoms of hypo including losing outer 1/3rd of eyebrows, crimped tongue, puffy face along the jaw line and plantar facitis.

  • You could be low in zinc, too. Low zinc causes muscle pain. And zinc is necessary for good conversion - and it works with vit D, too.

  • ah, I have started taking Zinc over the last 2 weeks so I'll keep that up too then.

    Thanks

    x

  • :)

  • Oh no! That sounds horrible! One thing physically I would suggest that if you're not using insoles for PF, you should definitely go and check your gait/ standing position is correct. PF could be due to flat feet and that has knock on effect on ankle, knee, hip tracking leading all the way up your body. This means that your muscles, joints and fascia are pulled into funny places, hence pain. It's super easy to get insoles (though by the time you got a few pairs definitely not the cheapest) but it's worth it. I'd recommend the footactive ones (which is NHS approved).

    It takes a little time for our body get used to new medicines, so keep going with the extra 1/2 and holding pattern. And obviously you can play with the supplementation more once you get the bloods done.

    Also, not all ndt are the same so just because this brand might not work for you, doesn't mean they all don't work for you- but this will be something to look at a good few months and increases down the line.

  • Ha, ha! "I knew I wasn't that fit", made me smile.

You may also like...