Has anyone experienced a major improvement by t... - Thyroid UK

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Has anyone experienced a major improvement by taking NDT as opposed to Levo and/or Lio?

kittenmittens profile image
12 Replies

Hello there,

I have had Hypothyroidism since 2015. I felt terrible on Levo only and now take 75mcg of Levo and 46.25mcg of Lio.

My last blood results were:

TSH less than 0.01 (Range 0.3-5)

FT4 8.7 (Range 9-21)

FT3 6.8 (Range 3.10-6.8)

I have tried higher doses of Levo with lower doses of Lio but that did not help.

My Endo won't prescribe any more than 40mcg of T3 as my bloods show it is right at the top of the range, so I increased it by 12.5mcg myself, this made no difference so I am dropping back to the 40mcg.

I have been diagnosed with ME but I still sometimes wonder if my thyroid is still contributing to my problems (problems being exhaustion, feeling cold, some pain at times mostly in legs).

So, my last resort where my thyroid is concerned might be to try NDT, and I was wondering if anyone has had a major improvement in symptoms by taking NDT as opposed to Levo and/or Lio?

Thanks for reading :)

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12 Replies
SeasideSusie profile image
SeasideSusieRemembering

Hi kittenmittens

I know we're all different and many people get on well with NDT, but it didn't do anything for me when Dr P put me on it about 20 years ago. We tried different combinations - NDT alone, NDT plus T3, T3 alone, nothing helped.

Looking back now, I realise that vitamins and minerals weren't checked back then, and when I checked them 2-3 years ago I had severe Vit D deficient, low ferritin, low folate.

I'm just wondering if you have all the building blocks in place for your thyroid meds to work properly for you.

Have you had nutrients tested - Vit D, B12, Folate, Ferritin.

Have you tested adrenals - cortisol and DHEA (I tested mine and there was a problem there as well).

I now have optimal nutrient levels, adrenals are getting there, and because I had a conversion problem I added T3 to Levo and with much testing/tweaking doses I now know where they need to be. Optimising nutrient levels and working on adrenals has certainly made a big difference to me.

Just a thought :)

kittenmittens profile image
kittenmittens in reply toSeasideSusie

Thanks SeasideSusie, I'm happy with my nutrients and the supplements I take. Cortisol was tested and was a bit high but the GP said that was nothing to worry about (661 nmol/L (range 240-600). Haven't had DHEA tested, is that something my Endo would be willing to test do you think or is that something Dr's tend to get humpty about?

SeasideSusie profile image
SeasideSusieRemembering in reply tokittenmittens

I don't know if NHS do DHEA, it's something that the private 24 saliva adrenal test does, cortisol plus DHEA.

kittenmittens profile image
kittenmittens in reply toSeasideSusie

Ah, thanks for the info :)

greygoose profile image
greygoose

How about trying a higher dose of levo with the same dose of lio? Some people need their FT4 higher. Although, we don't really know what your levo of FT4 is, because you haven't put the ranges. Please, always put ranges with results. :)

kittenmittens profile image
kittenmittens in reply togreygoose

Hi Greygoose and thanks for the reply,

Sorry, I forgot about the ranges, I've added them now :)

I discussed adding more Levo but the Endo says that would push my T3 level up and if that happened he would want to reduce my Lio. I could try self medicating with a bit more T4, that could be another option to try.

greygoose profile image
greygoose in reply tokittenmittens

It would indeed.

It depends how well you convert whether extra T4 pushes your FT3 up. In any case, it could be that you need your FT3 slightly over-range. :)

kittenmittens profile image
kittenmittens in reply togreygoose

Yes, that's what I thought, but the 12.5mcg increase that will have taken me above range, hasn't made any difference unfortunately :(

greygoose profile image
greygoose in reply tokittenmittens

Try another 12.5. :)

prussianblue profile image
prussianblue

Yes I have, I don’t feel well on T3 only, or Levo, or Levo and T3. Keep going, your body tells you what you need, it’s just a shame it’s a case of trial and error. I think the T3 in NDT is different to the T3 in T3, and I feel better with both. Good luck

kittenmittens profile image
kittenmittens in reply toprussianblue

Hi Prussianblue, thanks for the reply. When you say you feel better with both, what else is it you take with the NDT? Also, when you say you feel better, is it a big difference?

shaws profile image
shawsAdministrator

Most times our blood test results only state where they are at a certain time in the day.

The best way is 'how we feel' as that's how it used to be done before blood tests were invented when we had small increases in NDTs. (the original thyroid hormone replacements since 1892) until we felt well.

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