Struggling with switch to NDT: Hi there, I hope... - Thyroid UK

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Struggling with switch to NDT

Mrs-Jones profile image

Hi there, I hope somebody can reassure me that they have experienced the same thing

After years of feeling awful on Levo 100mg and no help from doctors I switched 2 weeks ago to Thyroid-S. in the first week I felt fabulous, better than I have for years. I took 1/2 grain of NDT and completely stopped the Levo. On day 10 I upped the dose to 3/4 grain. Yesterday was day 13 and I feel like I have been hit by a train, my muscles and joints are awful, bad tummy, terrible headache but the worst by far is a really painful throat in the Thyroid region. I can’t sleep the pain is so bad.

Has anybody been through this too but it got better later? I’m wondering if I should be taking more or go back to Levo (which I really don’t want to do). Any advice would be very gratefully received, thank you :)

13 Replies

I’m not a doctor but from my personal experience I’d say up your dose to a full grain. I did 1/2 then a full one. I’m sure that will help x

Mrs-Jones profile image
Mrs-Jones in reply to Kwizzbit

Thank you, so much for your reply. It’s good to hear that somebody thinks I should do that too. I have taken 1/2 this morning and will take another 1/2 tonight. After 25 years of illness I got a bit over excited in the first week!! I’m praying that will continue as the dose goes up

shaws profile image
shawsAdministrator

As you were already taking 100mcg of levo, it would have been o.k. to switch straight over to 1gr of NDT which is the equivalent of 100mcg levo (in its effect). You can then increase by 1/4 tablet every two weeks. Hopefully you will then begin to feel a lot better. You can also take pulse/temp because sometimes if we feel quite hot may think we're taking too much but find temp etc is o.k. There's no need to split doses. I will look for a link that may help understand NDT.

This is an excerpt from the link and all of the responses are helpful. This doctor only took one blood test for a diagnosis and thereafter it was all about how the patient felt on particular doses. He also only took a blood test for the initital diagnosis and thereafter no more blood tests but only all about relief of patients symptoms. All patients took one daily dose. He never prescribed levo - only NDT or T3 for thyroid hormone resistant patients.

web.archive.org/web/2010103...

Mrs-Jones profile image
Mrs-Jones in reply to shaws

Brilliant thank you that is certainly an interesting read and it makes complete sense and certainly better than all of the years of being tested and told my levels are good when I feel terrible :-s

I’m really looking forward to hopefully feeling like me again :)

Celestialbeing profile image
Celestialbeing in reply to shaws

I found that taking a single dose in the AM was not enough to get me through the day. Many of us split the dose and find it more helpful in maintaining energy levels. The T3 is used up in approx. 4 hours splitting the dose is good for people that do not convert the T4 into T3.

shaws profile image
shawsAdministrator in reply to Celestialbeing

T3 is not 'used up' - its job is to saturate our T3 receptor cells and then its work of that one dose continues for between one to three days.

Mrs-Jones profile image
Mrs-Jones in reply to shaws

Hi Shaws, just wanted to let you know that it’s been really interesting I have been taking my temp and averaging at 35.8-35.9. Each time I took my temperature I felt hot so it was a surprising result. I’ve also had very cold moments when out, but not had the thermometer with me. I’m now on one grain and my throat already feels much better so very grateful for the advice :)

I felt really unwell on Levothyroxine so changed to Armour thyroid 3 months ago. Initially I ached violently from head to toe and couldn't sleep. (but I felt much better in myself than I did on Levothyroxine). I've stuck with Armour and the aches and pains have gone and I'm sleeping much better. I only take half a grain. Hope this helps.

That’s very encouraging to hear, thank you for sharing. It really does help hearing how people have come through this. I’m going to try and stick with it

AnnaSo profile image
AnnaSo in reply to Mrs-Jones

I went through similar thing as Cathy too ☺️ hope this helps! Do not give up just now as it will get better!

Mrs-Jones profile image
Mrs-Jones in reply to AnnaSo

Thank you Anna, it really does help. I feel pretty poorly at the moment and the self doubt keeps creeping in wondering if I am doing the right thing. The more I read that people have had the same experience the more optimistic I feel, so thank you for sharing 😊

AnnaSo profile image
AnnaSo in reply to Mrs-Jones

No problem at all, glad we could help. Once things stabilise it will be all good. Do not be afraid to raise as well. I did every two weeks until got to my 3 grains, Some people take it slower it all depends on how you feel. But the general rule of thumb is to go up until feeling well 😊

shaws profile image
shawsAdministrator in reply to Cathydickson

1/2 grain is equal to around 50 mcg of levothyroxine, so a starting dose. You can increase your dose by 1/4 tablet every 2 weeks always taking note of temp/pulse and if either goes too high drop to previous dose and you will realise if symptoms are being relieved..

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