Help with NDT dosing please : Hi everyone I have... - Thyroid UK

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Help with NDT dosing please

Hele1 profile image
12 Replies

Hi everyone

I have always had a suppressed TSH on levo even when dose reduced to 50mcg. My T4 was never above mid range (and 7.4 underange on 50mcg) My t3 was measured twice both times under range. Endo still insists I must be hyper!!

Thanks to this forum I started ndt and feel heaps better! I worked up to 3 grains and felt hyper symptoms so dropped back to 2 grains. Some hypo symptoms retuned and my test showed t4 under range (no t3 tested). I added 50 Levo and dropped to 1 1/2 grains. After 4 weeks I have done a medichecks test :

TSH 0.01

T4 17.3 (12 - 22)

T3 5.43 (3.10 - 6.8)

These are the first normal results I've ever had. I feel so much better but am feeling the cold. My feet get icy so I use the hairdryer to warm my socks and slippers but they're cold again within half an hour! I have two jumpers on and my children are in T shirts saying the house is warm. My question is have I got room for a slight increase in medication if so the Levo or NDT?

Thanks very much for all your ongoing support.

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Hele1 profile image
Hele1
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12 Replies
Lozzer66 profile image
Lozzer66

I can't advise on dosing but I'm thinking of adding a little levo to my ndt as my T4 has always been on the floor even when t3 has been ok and I'm starting to believe this is why I'm constantly symptomatic ..the ratio in ndt compared to a human thyroid doesn't always suit everyone and I think I'm one of them !...I'm currently trying to get my over range T3 down so I know when it is my t4 will drop under range again and when it does I'm going to add levo and drop some ndt ..glad your feeling better ... I hope your last lingering symptom of feeling cold gets gone with the rest of it!

Hele1 profile image
Hele1 in reply toLozzer66

It sounds like adding levo will help you too. In the link lucylocks gave it says both t3 and t4 should be above midway on ndt. I hope all your symptoms disappear too 😊 Good luck x

lucylocks profile image
lucylocks

Hi

so glad you feel better with the addition of levo. to your NDT. I agree with Lozzer66 that the ratio of T4 and T3 in NDT does not suit everyone, myself included.

I added in levo. and reduced my NDT. two weeks ago as my T4 is always below range on NDT. only.

When I was taking 2 grains NDT. my T3 was the same as yours is now but I still had lots of symptoms so I thought my under range T4 maybe causing the symptoms, that's when I decided to add the levo.

I do think you have room for a dose increase but sorry do not know which to advise, the levo. or NDT.

What were your levels like on 2 grains NDT?

A lady called Barbara runs another forum and she believes a combination of NDT plus levo. suits some people better. Take a look you may find some useful information.

tiredthyroid.com

Hele1 profile image
Hele1 in reply tolucylocks

That link is very informative thanks I think I'll send it onto my endo but probably be a waste of time as they are so st in their ways unfortunately 😕

Hele1 profile image
Hele1

Thanks lozza and lucylocks it's a fine balance to get things optimal. On 2 grains T4 was under range adding some Levo back made me feel better. I just don't want to increase the wrong one by the wrong amount and have to start all over again.

If I add another half grain t3 might go over so may increase Levo? Still not sure.

Funnily enough I also received a letter from the endo today stating "we strongly recommend not using other thyroid medications such as ndt and t3 as this will further exacerbate and complicate things" !! Why do they not listen to patients? We can't be the only ones feeling better with ndt and t3??

lucylocks profile image
lucylocks in reply toHele1

Yes it is difficult to know which one to increase. It is all trial and error and it makes it all the more difficult that we do not get the proper help we need from our Doctors and as your letter proves nor endos.

How long were you on the added levo. before you felt some improvement.

Hele1 profile image
Hele1 in reply tolucylocks

I'd say it took about 3 weeks to feel the benefit of the added Levo I was very tempted to add more but know it takes a long time for Levo to make a difference. Where as t3 is almost instant, like my highly informed endo said "it's like cocaine" ?? I couldn't believe he said that!? One of the many times he's left me speechless 😳

lucylocks profile image
lucylocks in reply toHele1

The things these endos say.

Hope you get some more replies and get the advice you need.

Best wishes.

Hele1 profile image
Hele1 in reply tolucylocks

Thank you 😊 I hope your added Levo kicks in soon. Good luck x

Lozzer66 profile image
Lozzer66 in reply toHele1

Hele I read somewhere on tired thyroid it's t4 for the cold....maybe increase that a tadge ..perhaps 25mg every other day and then retest??.going over on t3 is so not pleasant ..I'm still suffering badly myself ..let me know how you go on 👍

connyankee profile image
connyankee in reply toHele1

He probably said "cocaine" because of the heart palpatations that T3 can cause and you may be of the age group where coke was used when dancing at the clubs (70's).

connyankee profile image
connyankee

I've never heard of anyone being on NDT and a synthetic at the same time. I've read where T3 should be in the upper quartile of the range to feel and be optimal. T4 should be in the mid-range. There's this thing called "pooling" where the NDT or the synthetics are just floating in the bloodstream and not getting to the cells. T4 is a storage hormone. Why would you need more of a storage hormone when T3 is the most important hormone which needs to get to the cells? I'm curious about this and would like to get references from books, papers, etc. in order to read up on this. Where can I read up on this?

Thank you.

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