PLEASE HELP - Should I increase NDT?: I would... - Thyroid UK

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PLEASE HELP - Should I increase NDT?

Canu
Canu

I would really appreciate your help, as I am not feeling at all well. I switched from Levothyroxine to NDT almost 3 weeks ago. I started with 1/4 grain, increased to 1/2 grain and have now been taking 1 grain Armour for the past 6 days. On the 2nd and 3rd day of taking 1 grain I felt better but then I progressively got worse again. I feel exhausted, have trouble getting out of bed in the morning, feel a bit depressed, have slight palpitations, slight ringing in my ears and my temperature this morning was 36.3 C and yesterday afternoon 36.7 C. This all indicates that I am undermedicated, but when I was taking levothyroxine, I was taking 50 mcg for 5 days per week and 75 mcg twice a week and was only slightly undermedicated. If my calculations are correct, then 1 grain Armour is a higher dose than the levothyroxine I was taking.

My blood test results while taking levothyroxine were:

TSH 2.05 mlU/L (Range: 0.27 - 4.20)

Free T4 21.58 pmol/L (Range: 12.00 - 22.00)

Free T3 5.54 pmol/L (Range: 3.10 - 6.80)

Blood tests for various vitamins and minerals from 2 weeks ago were good (except for folate which was slightly high from taking B-complex and iron saturation which was only 25%, with TIBC mid-range and Iron on upper end of range).

I weigh 53kg and I'm in my early 40's.

My blood pressure reading today was 100/67, which is a bit high for me - when I was healthy it was about 90/70 to 80/60 (from since I was 19 and for about 20 years).

My pulse today was 60 (resting and I don't exercise).

Should I increase Armour? Any other thoughts? I would really appreciate your help!

16 Replies
oldestnewest

Hey there again Canu ;

Well it will take about 6 weeks for the Levothyroxine to fully leave your body during which time it's advised to slowly increase by a 1/4 tablet/grain NDT weekly .

So after a month on NDT you would be at 1 grain : maybe you have increased the NDT a little too quickly for you ?

It's said that 1 grain NDT equates to about 75 / 100 Levothyroxine : but speaking from my own experience I think it's very hard to put a number on it - and I just dosed NDT until my body told me to stop, and then dropped back down a quarter grain and have stayed put .

I'm on 1 + 1/2 grain/tablets of NDT - I was on 125 Levothyroxine - I was converting until such time as my thyroid gave up completely and my cognitive functions became so compromised I couldn't even string a sentence together.

Canu
Canu in reply to pennyannie

Thank you so much for your reply pennyannie! I really appreciate it and it makes me feel supported at a time where I feel so unwell and have no proper support from those around me, who just can't understand what I've been going through. It must have been so difficult for you, losing cognitive function to such a degree! I hope you had support while you went through that.

Yes, I did increase a little quickly but I really felt the need to. I would feel better on the 2nd and 3rd day after increasing and then I would feel gradually worse again from the 4th day onwards. It's the same now. I felt better 4 days ago and have been feeling gradually worse these last 3 days. I feel I want to increase again, but I'm afraid to because I felt really horrible when I was taking too much levothyroxine. To me it felt worse than being undermedicated.

pennyannie
pennyannie in reply to Canu

Well the other issue might be your Hashimoto's.

Do you recognise any of these symptoms as a ' hyper Hashi's swing " ?

And what would you normally do ? Drop a dose or two of Levothyroxine until the

swing swung back ?

No thyroid hormone works effectively if the vitamins and minerals aren't optimal - my ferritin needs to be up at around 90 / 100 :

Canu
Canu in reply to pennyannie

I don't think I'm having a hyper Hashimoto's swing. I feel hypothyroid.

When I was on levothyroxine I'm not sure if I had Hashi's swings, I think I was just overmedicated. I remember feeling hyper for a few days continuously and eventually decreasing my dosage to feel better.

I think my vitamins and minerals are pretty much optimal or close enough. The only thing I haven't tested is my saliva cortisol. Blood cortisol levels were OK.

pennyannie
pennyannie in reply to Canu

Ok - so when these swings on levothyroxine finished - did you then restore the Levothyroxine dose to where before the ' swing ' happened ?

As I understand it, with each ' hyper swing ' your thyroid becomes more damaged and disabled, and over time, your dose of thyroid hormone replacement will need to go up, and when your thyroid finally ' packs in ' you will need to introduce T3 if you had not already.

The only other thing I can think of is that you can't convert T4 irrespective of optimal vitamins and minerals and you carry the D 102 ( ? ) gene - I read about on here, and thereby ' qualify ' to be dosed and monitored on T3 only ?

Canu
Canu in reply to pennyannie

At first I didn't restore the levo dose to where before the swing happended because I got hairloss from levothyroxine overmedication. My hair came out in bunches until I decreased my dose. When a doctor increased it again, the same thing happened. Then, even though after some days I decreased it again, the hairloss continued for a few months until I eventually switched to NDT and the hairloss decreased significantly (but not completely), even though I'm still not optimised.

I might have the DIO2 gene variation because I didn't feel well even when my free T3 was just above half way through the range. I was recently diagnosed with fibromyalgia too. Are you sure people with the DIO2 gene variation are dosed on T3 only? In this study they used a combination of T4/T3: thyroiduk.org/getting-a-dia...

pennyannie
pennyannie in reply to Canu

Oh, no sorry, just presumed if you couldn't convert the T4 the only option left was T3 only - my mistake, and an assumption on my part :

Thank you for the link, I'll take a read after I've told myself off !!!

Canu
Canu in reply to pennyannie

:D OK.

pennyannie
pennyannie in reply to Canu

Just a thought - can't remember if I've asked before - but what about your adrenals ? The adrenal glands support the thyroid and pick up the slack when the thyroid can't, or is under pressure, or on too low a dose of thyroid hormone production.

RAI is also picked up by the adrenal glands and I took to restoring these little glands before I moved on to supplement with NDT.

My lower back was very achey and I couldn't stand for long, even to boil an egg, so thought I'd give this a go. It worked within a month the ache was less acute and I now just keep rolling on and replace both my adrenal and thyroid glands.

Canu
Canu in reply to pennyannie

I haven't tested is my saliva cortisol. Blood cortisol levels were OK. Is there any other factor for testing ones adrenals? How does one restore adrenals?

pennyannie
pennyannie in reply to Canu

Hey there again:

They are adrenal gland just like NDT is thyroid gland - there are many makes on the market - sold as a supplement but they fixed my backache and I now simply roll on with them, I haven't had any particular tests, and just going on my symptoms.

pennyannie
pennyannie in reply to Canu

I found this book very helpful in many ways and especially learning about the thyroid / adrenal connection :

Written by a doctor who is hypothyroid and takes NDT : Barry Durrant - Peatfield writes in an easy to understand sometimes funny, insightful way and I keep coming back to this book : Your Thyroid and How To Keep It Healthy -and I found my copy on Amazon :

Canu
Canu in reply to pennyannie

I will check it out. Thank you so much for your support pennyannie!

SlowDragon
SlowDragonAdministrator

Essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking?

Were vitamin levels optimal BEFORE Starting on NDT

Recommend getting full thyroid and vitamin, testing after 6 weeks on fixed dose of NDT

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when on NDT make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Canu
Canu in reply to SlowDragon

Thank you SlowDragon!

"Essential to regularly retest vitamin D, folate, ferritin and B12"

B12 and D3 were tested end of March. B12 was at the higher end of range and D3 in the middle (I have increased my time in the sun since then).

Folate and ferritin were tested two weeks ago. Folate was slightly high and ferritin was on the higher end of range.

"What vitamin supplements are you currently taking?"

Vitamins: C and B-complex daily, and D3 5000IU and K2 a couple of times a week (I also spend time in the sun).

Minerals: Zinc and Selenium.

I also take Omega 3, Spirulina, Lysine, NAC and Systemic Enzymes.

"Were vitamin levels optimal BEFORE Starting on NDT"

Yes.

"Recommend getting full thyroid and vitamin, testing after 6 weeks on fixed dose of NDT"

Yes. On my current dose, or should I attempt to increase it slightly until I feel consistently better and then wait 6 weeks before testing?

Canu
Canu in reply to SlowDragon

Forgot to add that I also use Magnesium oil.

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