Dessicated thyroid treatment offered, but I'm confused.

[jill258]

I had T.3 added to my Thyroixine treatment last nov. I started on 10 mcgs then it was put up in Jan to 20mgs spread over two doses. My FT3 blood test results have stayed the same at 3.9. So when I queried it the endo just said he wasn't sure why that hadn't improved.Some symptoms have improved but still not right. He then offered me a 3 month trial of Dessicated Thyroid treatment. Explaining that it isn't registered in this country and only available on private script. So four questions

1, how much does Dessicated cost per month?

2 Do you lose the right to all free prescriptiions?

3 What experiences have others had with dessicated. What are the positives and negatives of taking it?

4. Would it be safe to stop Liothyroinne and Thyroxine and just start Dessicated, I have had enough of feeling really unwell and wouldn't want to make my self worse, whilst it all settles down.

[PinkNinja]

Hi. I'll try to help.

1) It depends if you get it through your pharmacy or through an online pharmacy. Someone will be able to provide more information, but it's worth looking around for the best price.

2) No, you don't lose the right to your other free prescriptions. You still have the condition so you are still entitled; just not to NDT (some will prescribe on NHS but depends on PCT etc)

3) It doesn't suit everyone, but for many it is a life-saver. I am taking it and, although I am still not quite right, I am so much better than I was on T4. I might be one of those people who needs T3 only. Many people have a lot of success with it.

4) Yes it would be safe to stop what you are taking and start the other. You are already taking T4 and T3 so taking an amount of NDT with an amount of T3 similar to what you are already taking would be a good start. If your doctor has recommended something, follow that, if not you might want to start with just 1 grain for a day or two to make sure that you don't get any unwanted reactions and then increase after a couple of days and then another couple of days. Up to you really, if your doctor hasn't advised.

I hope that helps a little. I'm sure more people will comment about their experiences too

Carolyn x

[jill258 in reply to PinkNinja]

The endo just gave me a choice today and said to ring him when I had decided what to do. I don't know whether I will still be having Liothyroine or just NDT. I thought I would just try and get some facts together to help me make a more informed decision. Your answer has helped alot thanks.

[shaws Administrator]

I think it is roughly £50 for 3 months. I assume it is a private prescription but you can go back on NHS if it doesn't work for you.

I take NDT plus some T3 and have never felt better. I also tried T3 alone as well as some other NDT's, so it is trial and error I am afraid.

This is a link which may be helpful

stopthethyroidmadness.com/

stopthethyroidmadness.com/m...

[jill258 in reply to shaws]

Yes it is private script. I was surprised when he said he didn't want to alter my Thyroxine or Liothyroine doses but suggested I could change to NDT. Thanks for the links.

[Clarebear in reply to jill258]

What dose of T4 are you on along with your 20mcg of T3? x

[jill258 in reply to Clarebear]

It has been brought right down to 75mcg one day 50mcg the next. TSH was 0.1. I was on 200mcg 18months ago but no T.3.I was on about 100mcg when t.3 introduced last November.

[Clarebear in reply to jill258]

Well one grain has 38mcg of T4 and 9 mcg of T3 - so two grains would be 76mcg of T4 and 18mcg of T3 - so this might be a sensible place to start, as it's quite similar to your current dose...

[jill258 in reply to Clarebear]

Thank you Clarebear. I think I am going to give it a try and see how I get on. I am not really sure why the Endo suggested it. He was very rushed as I was seeing one of his lower colleagues and she seemed to not know what to say and called him in. So what his reasoning was I'm not sure but I will ring his office on Monday.