NDT Named Patient basis

[waveylines]

Hello everyone. I'm just seeking an update: Is NDT still only prescribed on NHS on a named patient basis? I was listening to the interview of Lynn last year and there was talk this may no longer be required. Am thinking of moving GP surgeries as its barely functioning but don't want to jinx my NHS NDT script. I was 'approved' by a NHS Endo several years ago but in the past have haf to search for a GP Surgery willing to prescribe. Has this changed? Can someone update me on the latest.

Many thanks

[Lalatoot]

Waveylines NDT is still not licensed for use in the UK so it is still prescribed on the doctor's personal liability.

[waveylines in reply to Lalatoot]

OK.... Is it just Liothyronine. Am confused by an interview Lynn M gave last year... (On Thyroid UK Website) where she talks about named basis won't be necessary if changes go ahead

[Lalatoot in reply to waveylines]

To be prescribed a medication has to have a licence deeming it safe for human use in the UK. NDT does not have that licence. Any doctor prescribing NDT is therefore taking personal responsibility for the use of an unlicenced medication. If something happened to the patient it would be the doctor that is taken to court rather than the health authority/NHS.

Liothyronine is licensed for use in the UK. It can be prescribed without the doctor being personally liable.

Approval is a different matter. Liothyronine is licensed for use and can be prescribed but some health areas do not give NHS doctors the approval to prescribe it.

[RedApple Administrator]

I doubt it has changed waveylines. But maybe contact Lyn directly for an update on this? [e-mail]

[waveylines in reply to RedApple]

Good idea. Will do.

[FancyPants54]

Better to have this out with the proposed new surgery and get their agreement before you switch I think.

[waveylines in reply to FancyPants54]

Thanks Fancy Pants I was going to do this but wanted to check out the lay of the land. Local Endo dept headed up by a well known anti NDT meds. I've avoided them but am fearful they may consult them..... Am probably better to stick though it's pretty awful where I am now

[FancyPants54 in reply to waveylines]

You don't want to raise your head above the parapet regarding anti-NDT endo that's for sure! It's so wrong. You are having to compromise other health issues to get what you need for thyroid. The system stinks.

[waveylines in reply to FancyPants54]

It does..... The price of NDT to buy is shockingly high and am retired now so would rather avoid. Especially as I take nearly 4grains daily.

[FancyPants54 in reply to waveylines]

It is high. I ordered another bottle off my Roseway Labs prescription yesterday. It makes me gulp as I'm up to 2 and 1/2 grains a day now.

[waveylines in reply to FancyPants54]

Aww bless I do sympathise. I used to buy my own and it was always a worry.... But it's not like we can go without! Lol.... I felt so ill on the synthetics but NDT was revolutionary for me.I'm currently on 3 3/4 grains. Lowest I've ever got is 3 1/2 and that was last summer in the long heatwave. Winter it's 4, extreme cold 4 1/4. Yet these docs never consider the weather or are rarely flexible.

[FancyPants54 in reply to waveylines]

They don't do flexible that's for sure!

When you say it was revolutionary for you, how quickly did you start to see symptoms disappear? On 2.5 grains I haven't seen much of any changes for the better other than my brain being less foggy. It's a bit worrying.

[waveylines in reply to FancyPants54]

Well I'm casting back now years, probably 15 since I transferred to a NDT. It did take time. No quick fix. What I did notice pretty straight away was an evenness. I used to get highs/, lows with Liothyronine no matter how I split it. NDT was even... felt the same all the time.

As for improving my journey was a bit complex even when finally on NDT. First was finding the right NDT for me. Then there was the B12 saga where I tried supplements felt better then worse despite trying high strength duingual b12, then B12 jabs sorted it. Then started feeling poorly again and that tuned out to be gluten intolerance. Since then I have flourished but had to get my vits right. So it's not been a linear recovery. But now I have NDT B12 jabs, gluten free optimised on vits minerals I feel the best I've been in years.

Am not sure how helpful that all is. It's why a keeping a record is so important. But it was not instant but NDT felt even on it like I used to pre hypothyroidism

[FancyPants54 in reply to waveylines]

That is helpful because I worry when I don't see a lessening of symptoms. But like you I do feel so much more even on NDT. I too used to feel the highs and lows. I'm currently dipping in the afternoon but I'm only just up to 2.5 grains. And as we discussed I started taking it all at once but felt the afternoon dip too much. So now I'm taking 1/4 grain at bedtime and splitting the 2.25 grains (very early days on this) 1 grain at 6am and 1.25 grains at 8:30am. I'm going to keep experimenting with this timeframe. I want to try 1/2 a grain at bedtime next and then 2 grains split, but close together, first thing in the morning. And then I might start shifting the morning dose back to a time during the night. But slowly, slowly for now.

My iron and ferritin have dropped again! So I'm back to diligently taking the supplements. B12 had dropped again despite sublingual drops, once I stopped doing the drops with the transdermal oil. The combo got my levels to top of range for the first time. Dropping the oil as an experiment (because it's expensive) has resulted in an under-parr result.