Switching to NDT or adding T3? : Hi everyone... - Thyroid UK

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Switching to NDT or adding T3?

Becsf profile image
3 Replies

Hi everyone,

Related to my earlier post about sources of T3 and NDT I'd like some advice on whether and how to take these.

I had an appointment with an NHS endocrinologist this week who dismissed my symptoms and refused any dose or medication changes. He insisted that the following results were 'optimal' (although he conceded the iron was low, but said that this wasn't related to my thyroid and my GP would need to investigate that). My latest (Nov 3) results are:

T4 - 16.4 pmol/L

T3 - 3.9 (3.10-6.10) (most recent T3 result before this was July when it was 4.6)

TSH - 1.88 munit/L

Iron level, blood - 7.0 nmol/L (11-36)

Iron saturation % blood - 14.2% (20-40)

Ferritin level, serum - 51ug/L (14-148)

Folate - 14.7 (2.9-50)

B12 779ng/L (160-295)

Vit D - 113nmol/L (51-250)

9.30am test, no levo or food taken that morning, stopped biotin supplement there days before. Current levothyroxine dose (since around May I think) is 112.5mcg per day.

I had reduced my iron supplements (iron bisglycinate) because my test in September had the iron at the very top of the range. I have now gone back to the high dose. I think the fluctuation can be explained by the dose change and the fact that the latest test was taken at the end of my period. I'm also taking a B-complex (one recommended on here), magnesium, vit D, zinc, selenium.

I am also trying to conceive. I weigh about 60kg.

I think I need to raise my T3. It's never been this low, usually it's around 4 or 5, and my T4 is always around 16, even after dose increases. I do feel I have less energy than I used to, and have cold feet but nothing too bad.

As I seem no longer to be able to get any medication changes from the NHS I'm considering either switching to NDT (sourced privately) or adding in T3 (also sourced privately). I wondered if anyone here had any experience to share on this or advice on which option to pursue and how to make the changes (e.g. do I reduce my T4 dose when adding in T3, or if moving to NDT how best this is done). I'm particularly interested in hearing from anyone who's done this in order to increase their chances of conception, and if they've been successful.

Thanks so much!

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Becsf
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SlowDragon profile image
SlowDragonAdministrator

Well you are under medicated, poor conversion and ferritin and folate too low

Looking at previous posts you are strictly gluten free?

What about dairy free?

List of thyroid specialists and NHS and private endocrinologists who will prescribe T3 or some will prescribe NDT

Choosing an endocrinologist who’s both private and NHS

See privately initially and then transfer

healthunlocked.com/thyroidu...

Levo plus T3 is probably more “acceptable “ to medics when pregnant

Becsf profile image
Becsf in reply to SlowDragon

Yes have been strictly gluten free for about a year. Tried dairy free and then tried reintroducing - seems I get a slight tummy ache after eating butter but am fine with milk/cheese/yoghurt (and am having keffir regularly for the probiotics). Do you think it's worth cutting these out as well? I read keffir is more likely ok because it's fermented.

Hashihouseman profile image
Hashihouseman

the Endocrinologist cannot know what is ‘optimal’ for you!…. (Unless you present long term frequent blood testing and symptom diaries, then maybe it can be deduced).

A key indicator is the ratio of free T3: freeT4 which in all large scale population studies of healthy thyroid parameters is about 0.33

Your age/sex peer group will have a bearing on what is healthy normal for TSH fT3 fT4 and even if you are outside those norms and yet optimal for you, these norms are a good place to aim for until you can figure out otherwise. From memory your peer group norms are 14-15 fT4 4.4-4.8 fT3 and 0.75 - 1.5 TSH.

And here’s the critical bit….. TSH often has a pronounced circadian rhythm. It peaks at 2am and bottoms out at 2pm or thereabouts. So when you test needs to bear that in mind and ideally all your tests should be at the same time of day/night EVERY time otherwise the significance of dose related changes can be obscured by the natural rhythm. I would dare to suggest that if your TSH is healthy normal 1.88 would be the result from a 2 am blood draw but is possibly indicative of hypothyroid stress if it is repeatedly at that level in the morning when it should be falling and nearer to 1.

The other thing the clinicians often underestimate is SENSITIVITY! Tiny changes, particularly in fT3 have a huge symptomatic effect, so being near enough in their eyes is for their convenience not your health and highly likely NOT optimal!

You say you skipped levothyroxine dose before the test….. that just perturbs the body and is best avoided - another reason to do finger prick blood tests at home as late in the evening as you can manage before going to bed. That is also the best strategy for consistency & comparability in ongoing monitoring , which is most usefully done monthly within a few days of the same day of each month. It also puts you in complete control of your data and your evidence for treatment regimen. You could also try split dosing levothyroxine, which helps avoid any negative feedback impeding T4 - T3 conversion and have less impact on blood test timing….

NDT is a bit of a double edged sword and in my experience the whole replacement regimen is most easily managed with combination of Liothyronine for T3 and Levothyroxine for T4, BOTH ON NHS PRESCRIPTION:) I would also hazard a guess you need less T4 with only a small amount of T3 to give more normal healthy blood levels fT3 fT4 & TSH. I dropped T4 from 125 to 100 with just 5 mcg T3 and ‘my optimal’ is about 6.5mcg T3 and 90 mcg T4 which is a fiddle to dose but the symptom response around tiny changes just shows how sensitive these things are - and I have never met or heard of an endocrinologist actually getting that fact!…. let alone being compassionate and supporting treatment regimens that reflect it!

The NHS constitution enshrines concordance in patient centred care as our right. This means the damn consultants are our partners in finding our health and HAVE TO SUPPORT our presentation and preferences that may be unique to us! Anything less should be subject of formal complaint. Liothyronine is available on the NHS and the more that take it up the more widely available it will become. Hidebound doctrinaire clinicians should not be allowed to stand in the way!

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