Changing from natural thyroid to Levothyroxine - Thyroid UK

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Changing from natural thyroid to Levothyroxine

Pinebunny
Pinebunny

Story so far:

Unable to get my usual natural thyroid, I asked my GP about getting it as a 'named' patient. I was told it wasn't possible and had to wait 4 weeks for a 'baseline' blood test so they can try me on Levo first. It is 3 years since I stopped taking it because all my symptoms had come back and with advice from people on here, I switched and self-managed.

After 4 weeks I was very ill. My bloods were:

TSH 65.01, range 0.34-5.6

Free T4 1.5, range 7.5-21.1

Firstly I was told to take 25mcg Levo for 6 weeks then do another blood test.

With help from people on here I challenged the dose and they changed it to 75mcg.

I complained to the surgery as due to being so ill, I can't work and I don't know anyone who has been told to come off meds for 4 weeks. I had a meeting with GP and practice manager who said that they had no choice since I had told them I couldn't get natural and it's not possible to convert between the two.

I was a bit naughty and went for my blood test two weeks early and I was told my TSH is now 35, but I shouldn't have gone so soon and have to wait and do another because it's 'too dangerous' to up it any quicker.

I'm pretty frustrated as due to my symptoms I still can't work and if I don't work, I don't have an income.

Has anyone come across anything official about changing from one to the other?

I really wish I had known how bad it would be to follow the advice I was given and I'm not a happy bunny.

5 Replies
oldestnewest

Oh your doctors really don't know anything about thyroid, do they! Of course it's possible to change from NDT to levo! You just start straight onto the equivalent dose. You don't have to wait 'for a baseline', what rot! It's like some doctors think we should be punished because we have the audacity to have a thyroid problem - which, of couse, they have no idea how to treat! And, with a TSH that high, it wouldn't be at all 'dangerous' to increase a bit quicker. They're either giving you the run-around for having dared to self-treat, or they really are very ignorant. Time to start putting your foot down and letting them know who's boss!

Pinebunny
Pinebunny in reply to greygoose

It's difficult to assert yourself if you haven't got some facts to back you up :-(

Do you know if there is any guidance anywhere that I can hit them with?

greygoose
greygoose in reply to Pinebunny

On that subject, no, I don't know of anything official. Have you looked on STTM? (Never thought I'd see myself write that phrase! lol)

What a load of utter rubbish! Of course you can convert between NDT and levo, but GP could have written a prescription for NDT on a named patient basis - just didn't want to take responsibility, Of course, levo and T3 combo would have been the "correct" substitute. Why not just buy your own NDT from Thailand?

Someone sent me some info but it was all cloak and dagger stuff using fake info that made me worried.

The type I have been getting was out of stock too and I couldn't wait any longer. I've not been any better off trying to get it legitimately :-(

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