ndt dosage advice after results please - Thyroid UK

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ndt dosage advice after results please

Knackeredandcross profile image
28 Replies

I have been taking NDT for 8 weeks and had my blood test yesterday. Results are attached. I initially felt much better but in the last couple of weeks I have felt the fatigue creep back in a little so was thinking I may need to increase my dose a little following my blood test.

I normally take 2 grains in the morning and 1 grain in the afternoon but the day before the test I split the afternoon one and had my final 1/2 grain 10 hours before the test was done and I was also fasted.

my endo said when he gave me the ndt that he expected my t4 to come down to around 15 but it’s actually gone up from 18.6 (same range).

I was just looking for some insight into these results please. I am still symptomatic but it presents as if I’m over medicated? What would you suggest I do next please? All my vitamin levels are optimal so I’m not sure how to proceed.

thank you in advance

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Knackeredandcross
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28 Replies
SlowDragon profile image
SlowDragonAdministrator

This suggests you are on too high a dose

Being over medicated can cause fatigue too

Suggest you reduce by 1/4 or 1/2 grain

Retest in 6-8 weeks

Knackeredandcross profile image
Knackeredandcross in reply to SlowDragon

thank you 🙏🏽 I think because I didn’t have any other hyper symptoms I assumed I was still under. I’ll try that, thank you very much

FancyPants54 profile image
FancyPants54 in reply to Knackeredandcross

I have discovered that too much NDT for me also causes me great fatigue and general malaise. I feel horrible. My temp drops too. I used to think I needed more. Now I'm trying to always try less first.

greygoose profile image
greygoose

You have Hashi's, don't you? That could very well be the cause of your elevated levels. If so, they will go down by themselves eventually. So, if you're going to try reducing your NDT, do it without involving the doctor, because you're going to need the full dose again when the levels go down.

Knackeredandcross profile image
Knackeredandcross in reply to greygoose

thank you, yes I do. I’ve got an appointment with the endo next Monday and I need to send him my results prior. Do you think I should try and hold off reducing a bit longer if that’s the case? I didn’t know hashis made a difference

greygoose profile image
greygoose in reply to Knackeredandcross

Hashi's can make a huge difference. It's an autoimmune disease where your immune system wrongly identifies the thyroid as the enemy and tries to destroy it.

The immune system repeatedly launches attacks on the thyroid - some small attacks, others large - during which the dying cells release their store of hormone into the blood. This causes levels of FT4 and FT3 to rise, and the TSH therefore drops.

But, it is only temporary. The excess hormone will be used up/excreted, and FT4/3 levels will drop back down to the way they were before.

All this action is random and unpredicatable, and makes finding the right dose of thyroid hormone replacement difficult. But, eventually, the thyroid will be entirely destroyed, and levels will settle down to 100% hypo and you will be totally dependant on thyroid hormone replacement.

Doctors seem to have absolutely no understand of all that, and will often accuse patients of 'abusing' their THR, when it actually has nothing to do with their dose. They will then slash the dose and when the patient goes back to being hypo, they often have great difficulty in getting the dose raised again, which is why I suggest not involving the doctor in your dose reduction, but do it yourself. However, when your endo sees those results, he will doubtless want to reduce your dose, anyway! Perhaps you can expalian to him in a way he will understand? (Like talking to a child! lol)

So, it doesn't really matter if you reduce/stop your levo before seeing the endo but it might make you feel more comfortable for a while. Just be careful not accept a reduction in your prescription, that's all. :)

Knackeredandcross profile image
Knackeredandcross in reply to greygoose

thank you very much 🙏🏽 I don’t think there’s much left of my thyroid. At a recent ultrasound she described it as very small

greygoose profile image
greygoose in reply to Knackeredandcross

Sounds like you have Ord's, then. Same thing as Hashi's without the goitre. And that would probably be why your FT3 is only slightly raised.

Knackeredandcross profile image
Knackeredandcross in reply to greygoose

Thank you, the endo said it wouldn’t make any difference 🤪🤷‍♀️

darkacademia profile image
darkacademia in reply to greygoose

How is the dose calculated?

greygoose profile image
greygoose in reply to darkacademia

The dose of... levo? Levo is a hormone, th ethyroid hormone T4. With all hormones you need to start low and increase slowly. With T4 that measn starting on 50 mcg - 25 is over 65 or with a known heart problem - and increasing by 25 mcg every six to eight weeks. Increases may need to be smaller as you approach your sweet-spot.

These days, there's a tendancy to start that patient on a dose according to weight, but that's all wrong, in my opinion. That approach was started for people who have had their thyroids removed, not for people who are hypo, and the dose was then titrated up or down according to the patient's needs. If you start someone who has been hypo for a long time, on that kind of dose (can't remember the exact numbers) it's tends to be too much for a lot of people and makes them feel worse. But, it's easier for the doctor, I suppose.

darkacademia profile image
darkacademia in reply to greygoose

Like this? ➡️ ncbi.nlm.nih.gov/pmc/articl...

And this (use a translator) ➡️

endowiki.it/index.php/news/...

greygoose profile image
greygoose in reply to darkacademia

I'm sorry, I haven't got time to plough through the first one - the beginning doesn't seem very relevant, anyway. And the second one, I've no idea what they're talking about - what perfusion? Can you make your question a little more precise, please?

darkacademia profile image
darkacademia in reply to greygoose

How do doctors customize the dosage? do you know if they use a formula or something?

(English is not my native language)

greygoose profile image
greygoose in reply to darkacademia

Well, it depends. If they dose by weight, then there is a formula - but I can't remember what it is.

But, if they do it the old-fashioned way, they start low and increase slowly - as should be done with all hormones. With levo you start at 50 mcg and increase by 25 mcg every six to 8 weeks until symptoms gone.

helvella profile image
helvellaAdministratorThyroid UK in reply to greygoose

My blog has numerous formulas!

In my sarcastic moments, I might say: Using a formula for calculating doses is such a good idea, let's have several of them all with different results.

helvella's calculation document and spreadsheet can be can be found by following this link:

helvella - Estimation of Levothyroxine Dosing in Adults

A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.

helvella.blogspot.com/p/hel...

darkacademia profile image
darkacademia in reply to helvella

grazie mille ♥️♥️♥️

greygoose profile image
greygoose in reply to helvella

Nothing wrong with a good old-fashioned sarcastic moment. I heartily agree with you. Many a true word spoken in sarcasm.

darkacademia profile image
darkacademia in reply to greygoose

Grazie ✨♥️

greygoose profile image
greygoose in reply to darkacademia

You're welcome. Helvella knows more about these things than I do. :)

pennyannie profile image
pennyannie

Hello Knackeredandcross :

Yes it looks like you are now taking too much NDT.

Did you build up your dose in 1/4 grain increments weekly/fortnightly ?

Are you monitoring on blood pressure, pule and temperature twice daily while experimenting to find your best dose ?

The fatigue isn't exclusively a hypo symptom.

NDT does usually present with a lower T4 and a higher T3 than when on T4 monotherapy.

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

yes, I increased gradually although I was switching from t4/t3 combo so I don’t k ow if that makes a difference? My blood pressure and temperature are as low as they always are. Nothings really changed other than feeling a bit more tired the last week although I did have a medical procedure that involved sedatives so it could even be a knock on from that?

pennyannie profile image
pennyannie in reply to Knackeredandcross

Well, yes, i would think there would be some ' knock on ' from that:

How much T3/T4 were you taking prior and where did your results look like ?

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

I was on 125mg Levo and 18.7mg t3 and these were my results

pennyannie profile image
pennyannie in reply to Knackeredandcross

3 grains of NDT ( Thyroid S or Armour ) breaks down to 27 mcg T3 + 114 mcg T4 :

Efra would be slightly less 24mcg T3 + 105mcg T4 :

I think you have built up your dose too fast and the first blood test should be after 6-8 weeks of taking 2 grains - just to check that you are going in the right direction and then you slowly increase in 1/4 grains and when you think you may have gone too far - drop down the previous dose and let that bed in for 6-8 weeks and then run a blood test.

I find NDT is a much slower and more subtle treatment option and my symptoms continued to improve for a good 9 months once I'd settle on my daily dose.

I'm with Graves and post RAI thyroid ablatio 2005 and self medicate and much improved on NDT.

Just read that you have Hashimoto's which throws a spanner in the works as your own daily thyroid hormone production is not a constant and liable to erratic swings from your immune system -

I would still suggest that you reduce your dose as your body is likely in a heightened state and why you feel somewhat fatigued compared to where you were a few weeks ago.

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

thank you very much, that’s what I’ll do and see how it goes 🙏🏽

Brightness14 profile image
Brightness14

I had been on NDT for years and just a quarter will push your levels to high. Perhaps reduce by that amount for a few week and see how it goes. My FT4 level was always around 19 or 20

but yours is too high and your FT3 is over. I always felt OK going slightly over but I self sourced my NDT so never had to answer to a GP or Endo.

Knackeredandcross profile image
Knackeredandcross in reply to Brightness14

thank you 🙏🏽

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