Help Needed with NDT Dose Should I reduce or Increase Still feeling Rubbish

[TrishG67]

Hi I have now been on NDT since June 2020. Started on half a grain working upto 1.5 grains until March 2021. I was starting to feel a bit better and noticed a positive difference up until my Endo introduced HRT due to numerous ongoing symptoms. In fairness I now feel lots better with lots of the menopause symptoms, however, I noticed my thyroid symptoms returning. So back in March this year, following advice from Endo, I increased upto 2 grains of NDT. However, I still get palpitations jittery feeling, restless legs, constipation etc. Just had bloods done with Medichecks so I can see where I am now at. Results are below. Both my GP and now Medichecks are telling me to reduce the NDT due to extremely low TSH. But I still don't feel well and have sadly never got to the "optimal" stage, although I did feel like I was heading there before HRT. Any advice from you knowledgable people would be so appreciated

CRP - 1.1 mg/l ( 0-5)

Ferritin - 107 ug/L ( 13-150)

Folate Serum - 18.4 ug/L ( >2.9)

Vitamin B12 Active - 127 pmol/L (25.1 - 165)

Vitamin D - 118 mol/L (50-200)

TSH - 0.01 mIU/L (0.27 - 4.2)

Free T3 - 4.8 pmol/l (3.1 - 6.8)

Free Thyroxine - 17 pmol/L (12-22)

TGAB - 1575 iu/ml (0 - 115)

TPAB - 107 iu/ml ( 0 - 34)

Thanks all

[SeasideSusie Remembering]

TrishG67

Both my GP and now Medichecks are telling me to reduce the NDT due to extremely low TSH.

If they know you take NDT then they don't understand how to interpret test results when on NDT. TSH is always going to be low, below range or suppressed when taking NDT, it's the T3 that it contains that does this.

Free T3 - 4.8 pmol/l (3.1 - 6.8)

Free Thyroxine - 17 pmol/L (12-22)

These are the important results, with FT3 being the most important. FT3 tells you if you are overmedicated. Your FT3 is only 46% through it's range which most patients on NDT would find to be too low. There is plenty of room to increase your dose of NDT if you are symptomatic.

I see from past posts that you know you have Hashi's, are you gluten free? That helps some people but there's no guarantee.

Your vitamins are all good.

[TrishG67 in reply to SeasideSusie]

Hi Seasidesusie many thanks for the reply. Yes I have tried gluten free. Unfortunately I am not certain it has helped. I tried strict for months then now I cut it out as much as possible. My antibodies come down slightly but not much. This is such a long game and trial and error. I have spent thousands trying to feel well again and am so fed up I am still not good. You shouldn't have to pay private for blood tests, private consultation, then prescription. Any way I may trial a slight increase In the NDT just panicking the TSH will go lower and wander what harm could that do? Thanks again

[SeasideSusie Remembering in reply to TrishG67]

TrishG67

just panicking the TSH will go lower and wander what harm could that do?

All I can say is that I have been keeping a record of my results for nearly 25 years now, my TSH was suppressed on Levo and is suppressed on Levo plus T3. It's only been in range, at the very bottom just scraping in, on 3 occasions in all those years, and when it was in range my FT4 and FT3 were so low I was very unwell.

Depending on which lab does my test (private or NHS) and how low their machine measures, my TSH always comes back as <0.02 or <0.01 or 0.005 or <0.005

[TrishG67]

Oh thanks that's so reassuring . I have had two calls from my GP surgery alarmed at my TSH result, then my latest bloods from medichecks recommended I lower my NDT too 🤦‍♀️.

[MikeM46 in reply to TrishG67]

I found Medichecks clinical comments equally TSH “focused”. Just because they offer full TFTs doesn’t mean they would deviate from the “established rationale” re TSH. Would probably get shut down pretty quickly if they did!

[HashiFedUp]

I’m in the same boat as you i think. on levo and ndt and tsh suppressed so lowered levo and now feel somewhere between ok and pants! its so annoying this constant game of dose then bloods then dose then bloods! i feel your pain. woke up at three am this morning feeling awful…

[pennyannie]

Hello Trish :

The TSH was originally introduced as a diagnostic tool to help confirm a case of hypothyroidism, and was never intended to be used once the patient was on on any form of thyroid hormone replacement.

The ranges and guidelines were introduced to be used alongside synthetic T3 and T4 launched by Big Pharma in the middle of the last century as the treatment for hypothyroidism.

NDT had been used successfully to treat hypothyroidism for over 100 years, prior to the science of the blood test and ranges, and you simply dosed up, chewing on little pieces of dried pig thyroid, until your symptoms abated.,

We now have NDT in tablets, referred to as grains, and each grain generally contains around 9mcg T3 + 38mcg T4 : and offers full spectrum thyroid hormone replacement.

I'm now 3 years into self medicating with NDT and my TSH is 0,01 and this is ok :

Depending on my timing of the blood draw, my T3 comes in at around 90% and my T4 at around just 30% through these ranges - I take this to mean I'm converting well the T4 into T3 as I have very little suplus T4 in my system.

Some people run with a high T4 as well as a high T3 - it doesn't really matter, what matters is taking enough NDT to reduce your symptoms of hypothyroidism.

Some people split their dose, some do not - it is very much trial and error.

Optimal vitamin and mineral assist in the conversion of T4 into T3 :

I have read that some people feel the need to increase their thyroid hormone replacement when they introduced HRT.

With Hashimoto's you have the added issues of possible leaky gut and read of many people following Dr Izabeela Wentz in dealing with the issues unique to this auto immune disease.

I'm with Graves post RAI thyroid ablation in 2005 and now managing lingering Graves, thyroid eye disease and hypothyroidism.

[serenfach]

Your TSH is low because your body is getting the necessary hormones. It is a bit like the GP saying you should be thirsty when you have just drunk a pint!

I would go up a smidge with the T3 level being where it is. My TSH is 0.003 (on NDT) and the GP read it as 3.0 so did not fuss!

[TrishG67]

Thanks so much everyone for your advice and kind words. I really appreciate you taking the time to post. I will try increasing by half a grain more NDT and see how I get on with that. Stay well 🤞