Named patient basis for NDT: Hi. I am seeing my... - Thyroid UK

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Named patient basis for NDT

McPammy profile image
10 Replies

Hi. I am seeing my GP tomorrow (Monday 22 Oct 28). I switched from Levothyroxine 2 months ago after requesting this via a private Endocrinologist that is also working for NHS. This has improved my health. I was thinking of asking my GP if he could prescribe me NDT on a named patient basis. As I need T3 as previous blood tests showed I wasn’t converting from T4 well. TSH was 0.22 ( 0.35 -5.50). My T4 was 13.6 (7.86 - 14.41) and my T3 was 3.9 (3.7 - 6.0). They won’t entertain T3 as too expensive. I don’t have many more T3 blood results as they are very reluctant to do it in Chester area

Has anyone else been successful in getting NDT on named patient basis please under special needs of a patient requirement.

I’ve lost my job after being so unwell the past 6 months and really can’t afford private prescription and medication now. Just a thought?

Thanks and kindest regards

Pamela

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McPammy
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10 Replies
RedApple profile image
RedAppleAdministrator

McPammy, Years ago I had a good GP who was happy to do this for me, and I did receive it on NHS prescription for a while. But then the CCG intervened and withdrew it on the grounds of both cost and 'lack of evidence' blah blah.

There are a few people in the UK who are still fortunate enough to be continuing to get it, but I suspect most, if not all new applications will be outright rejected now. I wish you luck in your quest.

McPammy profile image
McPammy in reply toRedApple

Thank you RedApple.

I understand what you are saying. 😌. I was hoping that surely it would be a cheaper option than T3. As NDT is not so expensive as T3. Problem is trying to prove it in each blood test as they won’t do T3 in the past when I was in T4 Levothyroxine. The results I posted are from hospital from when I first collapsed this year. I’m going to try and persuade them as I just can’t do Levothyroxine as I was so unwell this year on it. They can’t seem to find out what has happened to me. All I know is that my cortisol was very low at 68 (155-650). My ACTH low. My TSH was low. My heart rate low in 40’s. And blood pressure also low at 55/83. There was something definitely not right. And I was severely affected for nearly 6 months. It’s only since I started NDT that I’ve picked up. I’ve heard that low T3 can cause low cortisol. If this is the case this could be why my cortisol has been low. I’ve collapsed several times. When in A&E my cortisol always too low. But they wouldn’t do T3 only T4 and TSH.

Anyways thanks for replying. I’m going to try and push for this. As I need it. No way I can go back on Levothyroxine. It’ll kill me eventually.

Thanks again

Pamela

McPammy profile image
McPammy

He has blood test results and should be able to see why it’s best for me on NDT. I’ll print some stuff off for him to read but he should be clued up on named patient prescriptions I would hope.

In 2 weeks time I’ll be out of NDT which I told him about 3 weeks ago. I’m hoping it’ll be a positive outcome from a positive GP visit. I thinks it’s only right that if you need something they should give it to you within reason.

The NHS belongs to the people. I’ve paid in for 44 years I just need support now.

Thank you for your response.

👍. Pamela 👍

ThyroidThora profile image
ThyroidThora

Hiya,

I have the same problem with NDT as you. Please PM me as I've had to get my NDT from the USA and, I'll send you the link.

TT.

Mtym profile image
Mtym in reply toThyroidThora

Hi, I have had NDT prescribed for 15 years after a total thyroidectomy and have been told I must now take T4 instead. Please could you message me your link?

ThyroidThora profile image
ThyroidThora in reply toMtym

Hiya,

You need to PM me because the admin team will delete the link if I put it on this forum.

TT.

helvella profile image
helvellaAdministrator in reply toThyroidThora

I think I must be missing something, but why can't you send a PM to Mtym without Mtym sending you a PM? :-)

ThyroidThora profile image
ThyroidThora in reply tohelvella

My internet keeps playing up.

waveylines profile image
waveylines

All my sympathy McPammy. I too came close to loosing my job but was saved by switching to a ndt. My GP commented on how much better I am on a ndt & said it was the best med for me. They refused my informal and formal requests to prescribe it despite getting a Consultant involved. Unfortunately they do have the descretion to say no on this....though how they can live with making people ill beggars belief!

I switched GPs negotiating before switching practises. I argued the ndt was cheaper than all the extra meds they had to give me because the levothyroxine did not work. My list was blood pressure tablet, pain meds, skin emolients, eye drops, laxatives....etc They agreed & prescribed. This was some years ago.... It has to be under written by a Consultant....

Good luck.

McPammy profile image
McPammy

Hi. I’ll let you know any progress I make on this subject. I’ll push and push until something positive comes to the for.

Thank you it’s good to know others stories and how they managed it.

I think it’s a no brainier. As NDT is much cheaper than T3.

Thanks again

Pam

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