Hypo symptoms after reducing NDT: Good morning... - Thyroid UK

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Hypo symptoms after reducing NDT

selenipap profile image
13 Replies

Good morning! As many others, I’m still struggling to adjust my medicines (I’m doing this alone, as where I live, I didn’t find any doctor that knows how to treat people using ndt and from my experience with 3 endos, they just check my TSH and they adjust the dose according to it…). 

 I was diagnosed with hashimoto’s and a thyroid nodule 3 years ago. I was put on Euthyrox which wasn’t working for me. My hypo symptoms did not get better, and I continued putting on weight (17 kg up since my thyroid issues begun). I switched to ndt (thyroid-s) since last year, which seems to work better for me. When I reached 3 grains other than some hyper symptoms (see below) I started feeling myself again. I lost 6 kg and I had lots of energy. But, since last May, I started having onycholysis both in my toenails and fingers and some other hyper symptoms. My FT3 was already above the range so I gradually decreased my dosage to 2.5 grains.

My latest blood results (14/10/2022) showed that FT3 is ok, but FT4 is low. My ferritin, B12, D3 are in the “normal” range and the my gp doesn’t agree on taking any supplements. He also advised me to further reduce my medication as my TSH is low…  

Any thoughts on how to proceed? Shall I add ¼ of ndt back for my FT4 to go up?  

Thank you!

 

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selenipap
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13 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Your GP doesn't need to agree to taking supplements. Gp's are not trained in nutrition and often keep us unwell due to that lack of training. Supplements can be bought over the counter and monitored by private blood tests as required.

Your ferritin is not optimal - needs to be 50%+ of it's range. Could be causing hairloss and a range of other symptoms including sleepiness. People here recommend eating chicken liver pate a few times a week to raise that level.

I don't see a result for folate. Do you have one?

Vit D needs K2, also best taken in oil for absorption. Magnesium required too. There is a calculator here to work out how much to take. grassrootshealth.net/projec...

Low 30 nmol/l or 12 ng/ml or below

Adequate 50 nmol/l or 20 ng/ml or above

High 125 nmol/l or 50 ng/ml or above

For B vitamins Thorne Basic B is good to bring low levels up.

selenipap profile image
selenipap in reply to Jaydee1507

Dear Jaydee1507, thank you very much for your suggestions for supplements. Probably ferritin is a big issue for me, mostly because I'm on a plant-based diet, and in general I find it difficult to eat meat and especially liver. I'll start taking supplements to raise it. As for my folate levels, I never had a test as our NHS includes only TSH, FT4 and iron/ferritin. The rest of the tests (B12, D3, FT4) is on me, but next time I'll add the folate as well. Thank you!

pennyannie profile image
pennyannie

Hello Selenipap :

Your results " look better " on 2 + 1/2 grains.

With NDT you dose to relief of symptoms as NDT was used successfully for over 100 years and long before the science of blood tests and patients were just given different sizes of pig dried pig thyroid nuggets to chew on until they found a size that worked best for them.

The blood tests, results and guidelines were all introduced to be used with Big Pharmas's synthetic T3 and T4 which was launched on the back of NDT in around the middle of the last century.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels and when I researched for myself I read that ferritin needs to be at least over 70 to support thyroid hormone conversion :

I take NDT and feel at my best with a ferritin at around 100 : my active B12 at 75 ++ ( serum B12 over 500 ++ ) folate at around 20 and vitamin D needs to be up at around 100u sing UK ranges.

Om NDT your TSH will likely be low suppressed and your T4 lower than when on T4 monotherapy BUT your T3 should be higher and you track on the T3 not the TSH or T4.

selenipap profile image
selenipap in reply to pennyannie

Thank you for your reply. I'll take the advice and add some supplements to boost my D3 and Ferritin. As for switching from the chemical hormones to ndt, for me definably was the best decision I made. I agree with you that TSH is expected to be suppressed and personally I don't see it as the main problem. But I'm still worried about my FT4, as it's now is at the same level as before I started the medications. And I feel that this is contributing also to my general feeling of not being well.

pennyannie profile image
pennyannie in reply to selenipap

Well some people add back in a small amount of T4 with their NDT so if you haven't tried this maybe it's something to think about ?

selenipap profile image
selenipap in reply to pennyannie

Definitely I will! And it's good that T4 in my country can be bought over the counter!

pennyannie profile image
pennyannie in reply to selenipap

Lucky you !!

Where are you - I thought I knew but now can't see anything telling me this ?

Imaaan profile image
Imaaan

Your ferratin, b12 and vitamin D can do with a boost as been mentioned by others. As for your free t4, you can ask your doctor to prescribe you 25 mcg. Split it in half with a pill cutter if it doesn't have a scoreline and take 12.5 mcg with your morning dose. I use ndt and t4 and its been keepingmy free t4 at a good number

Im interested in possibly purchasing Thyroid S . Did you experience any symptoms as you switched from t4 to Thyroid S ? How much Thyroid s did you take when you first made the switch? Did you completely stop taking the t4 or did you slowly titrate down?

selenipap profile image
selenipap in reply to Imaaan

Dear Imaan, thank you for this suggestion. I'm thinking of giving it a try, although I had a bad experience with T4 but maybe in this low level will not do any further harm.

When I switched to thyroid-s I was taking 100 mg of Eythyrox. I switched directly to 2 grains of ndt. then gradually, and according to my blood results, I went up to 3 grains (best time of my life 😀). Due to a nails issue I had to stop and go back to 2.5 grains. In general my experience with thyroid-s is very positive. Not any issues, other than finding a good supplier or another way to make sure you will always be able to get a bottle.

Imaaan profile image
Imaaan in reply to selenipap

Thank you for taking the time to respond to me and sharing your experience with Thyroid S.

As for the t4, if you were having symptoms with it you can try another brand. Another option is trying out beef glandulars to see if they can raise your free t4.

arTistapple profile image
arTistapple

I will leave the technical stuff to wiser others. I just wanted to mention specifically the onycholysis. I had this before I was ever diagnosed with hypothyroidism. I had no idea what it was and as I only go to the doc with ‘major’ stuff (rarely) I just thought I would work through it. I spent time out in the Middle East and I thought it was down to tramping about in the sand and dust. I knew it would take about a year to totally renew the nails. I was hypothyroid. What else was I doing but slumping around all the time? Waiting was something I became very good at doing. The small nails grew through in a matter of weeks. One toenail grew through looking relatively normal over the year but the other had more trouble. One day the nail just fell off and underneath there was a virgin nail. The nail which fell off was like a piece of laminated very dry hair. I look after both finger and toenails better, now that I know my hypothyroidism turned them into husks. Flexitol. Expensive but it works, alongside presumably my thyroid meds.

selenipap profile image
selenipap in reply to arTistapple

Thank you for sharing your story, It really gives me hope that one day I may get my nails back. At the moment my toenail has been half-ruined for a year now. Five of my fingernails are also half-ruined (turned white) for 6 months now. I can't really tell why, but researching a bit made me think that it was because of high (or higher than I needed) ndt. Now that I reduced them I see some progress (very slow, if it's not my imagination...), so I hope they will get better with time. Thank you!

if you want to raise your t4 without raising your t3 you could introduce a small bit of t4 (levo etc.) to your dose?

It may be that you are a good converter and need more t4. Some on ndt may convert less well and need more t3.

I wouldnt worry about a suppressed tsh :)

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