On long NDT (ERFA) trial, latest test results, ... - Thyroid UK

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On long NDT (ERFA) trial, latest test results, any thoughts on these would be helpful.

SmPea profile image
12 Replies

TSH 0.01 mU/L (0.27-4.2)

FT3 6.39 pmol/L (3.1-6.8)

FT4 15.2 pmol/L (12-22)

Tga 28 IU/ml (< 115)

Tpo 43 IU/ml (< 34)

Ferritin 117.0 ug/L (13-150)

Folate 7.70 ug/L (> 3.89)

B12 Active 76.2 pmol/L (37.5-150)

Vit D 111 nmol/L (50-200)

CRP 0.71mg/L (0 - 5)

Mid July Private Endo said there was scope to raise ERFA by 1/4 grain as previous FT3 was 5.72 pmol/L while on 2 grains daily. I tried the increase but heart palpitations too strong so remained on 2 grains. The above results show FT3 has risen quite a bit even though I have remained on 2 grains. FT4 has also risen from 14.8 pmol/L to 15.2 pmol/L. If I continue on 2 grains will I end up with FT3 over range? Should I stay on 2 grains?

Currently heart rate good, temp 36.0, feeling reasonably well, gluten free, supplementing Vit D/K2, Thorne B, Magnesium High Potency (just started again). Main issue constipation and disrupted sleep.

Since having Thyroid Peroxidase Antibodies in 2017 over 900 IU/ml and Thyroglobulin Antibodies over 200 IU/ml both have consistently come down to now Tga is in range and Tpo is almost in range too. Any thoughts on what this means if anything?!

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SmPea
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greygoose profile image
greygoose

Since having Thyroid Peroxidase Antibodies in 2017 over 900 IU/ml and Thyroglobulin Antibodies over 200 IU/ml both have consistently come down to now Tga is in range and Tpo is almost in range too. Any thoughts on what this means if anything?!

Probably means that there's not much left of your thyroid to attack.

Antibodies tend to be highest just after an immune system attack, when they come along to clean up the blood. As more and more of the thyroid is destroyed, the attacks become less and less frequent, so antibody levels drop because they are not needed. :)

SmPea profile image
SmPea in reply togreygoose

Thanks GG does that mean even if both antibodies become in range I will always be hypothyroid but have no flare ups?

greygoose profile image
greygoose in reply toSmPea

Pretty much, yes. You'll certainly always be hypo, at any rate. But, probably won't have much in the way of Hashi's swings anymore.

SmPea profile image
SmPea in reply togreygoose

😀 that’s good to know

pennyannie profile image
pennyannie

Hello SmPea :

It looks as though 2 grains is about the right dose of NDT for you.

It does take time for NDT to bed in and as you have been on this dose sinc July I very much doubt your T3 will keep rising.

Your antibodies have dropped back down so let's just hope that the Hashimoto's AI disease has run its course and will not cause further issues.

It can be reassuring to run blood pressure, pulse and temperature charts for yourself - I self -medicate with NDT and as I built up my dose in 1/4 increments I monitored these twice daily - my blood pressure and pulse remained constant but my temperature rose from 35.4 to 36.6 where it still hovers some 5 years on.

SmPea profile image
SmPea in reply topennyannie

That’s what am thinking 2 grains are right for me. I am seeing Private Endo on Monday and see what he thinks.

It’s quite amazing to me if I have finally found the right medication and dose after all these years!

pennyannie profile image
pennyannie in reply toSmPea

Good - as to the constipation - try drinking more water and vitamin C sorts me out.

You will still be hypothyroid so whilst NDT may have fixed the majority of your symptoms you'll still need to keep an eye on maintaining optimal vitamins and minerals and be aware that as we age the goal posts may change and read that some people adjust by a 1/4 grain up or down with the seasons, finding they need a little more in the colder months.

SmPea profile image
SmPea in reply topennyannie

Thanks really helpful info 🙂

in reply toSmPea

Triphala's good for constipation.

Gillybean1 profile image
Gillybean1

Hi SmPea,

I find that the timing of when I take NDT effects my gut profoundly. Paul Robinson suggests the AM dose of any T3 or NDT containing T3 is better taken no later than 8am for a 1st dose (so the earlier the better to meet our cortisal optimally) and if there is a second dose that day, to be taken no later than 3 pm.

I have by no means mastered my sweet-spot yet, but for me taking NDT earlier than he states or at least by those times he states, makes a huge difference to my gut motility, sluggishness etc.

You didnt say 'how' you take your meds, but maybe this might be of help to you.And I agree with other, Vit C ,and approx 2 litres of water a day.

Aloe Vera juice used. as and when can really help too.

Every best wish, G

SmPea profile image
SmPea in reply toGillybean1

I’m taking 1 grain around 6.45am I try to take 1 grain around 2.30pm depends when I’ve had lunch. Sometimes it can be nearer 3.30. Interesting what Paul Robinson says about timing of NDT dose.

I think I’ll give Aloe Vera a go.

Thanks for your thoughts.

Gillybean1 profile image
Gillybean1 in reply toSmPea

You are very welcome. It a long haul, but many here have found a quality of life......we must never give up. G

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