NDT feeling terrible - latest results

[AleB]

Dear All, If anybody could offer advice I would be so grateful. I have been on NDT for 3 months now, and feel absolutely shocking! Started at 1 1/2 grains (switched from Levo after 8 1/2 years after Levo stopped working well)! After 4 weeks increased by 1/4 grain, then by another 1/4 grain. Aches and pains subsided, heat increased but then got too hot, heart palps sweating etc, dropped down by 1/4 grain for a couple of weeks bllods at this we're:

23rd May 2019

FT4 11.5 range 10.30 - 24.50

FT3 3.3 range 3.50 - 6.50

TSH 1.47 range 0.30 - 5.50

Ferritin 40.3 range???

Vitamin D 60 taking extra D3 1000, total 3,000 per day

B12 1027 March 2019

Serum Iron 19 range 14 - 30.00

Saturation iron binding 32% 15 - 56%

Serum TIBC 59 range 45 - 80 micromol/L

If I stay on 1 1/2 grain I gain weight at a pound per day, still with aches and pains, at 1 3/4 grains my weight is steady but aches and pains, headache breathless, can't do much. Really thinking about going back to Levo thyroxine and maybe try adding T3 again. I was put on T3 3 x5 per day and told to reduce Levo to 75, didn't do well and was told to stop, hence NDT. However, I think reduction of Levo was wrong as I was already struggling on 107mcg per day. I don't convert very well! Sorry for long ramble, really not sure what to do now.

[greygoose]

So, what, exactly, are you taking at the moment? 1 3/4 grains? That's not very much. That's only about 15.75 mcg T3. And your FT3 is far too low for good health - it's under-range, which is amazing for someone on NDT - so not surprising you're having symptoms. I would think you need at least 2 grains. But, how are you taking it? Do you always take it on an empty stomach, leaving at least an hour before eating, etc. just like you would levo?

How long a gap did you leave between your last dose of NDT and the blood draw?

[AleB in reply to greygoose]

Hello Greygoose, thank you for responding to my post. Yes I am taking 1 3/4 grains, always taken at 6am with water, leave an hour before breakfast. The blood draw was taken 15 hours from taking NDT.

[greygoose in reply to AleB]

That's a bit too long. Should be between 8 to 12 hours. So, your FT3 is slightly higher than that, but you still could do with an increase in dose.

[AleB in reply to greygoose]

How often should I increase? By1/4 grain? As I take all thyroid meds in the morning, when should I get bloods done... Confused now!

[greygoose in reply to AleB]

Start off with 1/4 grain and see how you go. Best not to increase more than once until you've had more labs done, because you don't really know what your levels are.

If you're having your blood draw early in the morning, then the day before the blood draw, split your dose of NDT and take half in the evening, 8 to 12 hours before the blood draw. It's not that confusing.

[AleB in reply to greygoose]

Thank you Greygoose, I did split my dose the day before prior to test, unfortunately phlebotomy was really busy and I had to wait 1 1/2 hours (had booked timed draw, but it got cancelled). Will take it steady and see how I get on. Thanks for your advice. 🙂

[greygoose in reply to AleB]

You're welcome.

[humanbean]

You might find this article of some interest, although it is rather old. The last quarter of the article gives you a "recipe" for dosing NDT.

tpauk.com/main/article/how-...

It's a long time since I read the article myself, but if I remember rightly it assumes that people are starting off from taking no thyroid meds at all.

You might find this page of interest too - but it only exists in the web archive now, which is sad :

web.archive.org/web/2018081...

[AleB in reply to humanbean]

Dear Humanbean, thank you for the link it is really helpful... Will try and split (again) am and pm doses and see how I get on. Fingers crossed. 🤞😊

[Hidden]

I take two grains per day of NDT split 1 at 6am and the other at 2pm both away from food and other supplements. Your FT3 is very low you could try another small increase. I have gone as high as three grains but was over medicated and gradually went down to two. It has taken me more than two years to sort out the correct dosage.

[AleB in reply to Hidden]

Hello Bunny Jean, thanks for your post. I am finding that I still have aches and pains and the dreaded 2pm slump, that I need to sleep. Endo wants me to 'Park' the thyroid and concentrate on gut and now see a POTS specialist! POTS only happens when I have to cut back on thyroid meds and blood pressure drops!!! Will have to struggle on for a few more weeks until I get a more accurate blood test. Thanks for your post. 😊

[Hidden]

Your welcome good luck