Consultant Endo NHs agreed clinical need for ND... - Thyroid UK

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Consultant Endo NHs agreed clinical need for NDT so now over to GP for prescribing ! does anyone know if the Gp will allow it or deny it ?

Pascha1 profile image
8 Replies

I had an Endo appointment on Friday and The Endo agreed I had a need for NDT, he did say I could have private prescription 1st as it’s black listed on NHS for new patients I said sorry I am not working as haven’t been well enough so I can’t afford private, he then said if I bought NDT internet he would do bloods look after me on it, I said wasn’t happy about buying on internet and I’m not sure I would have the money every month for that

He then said as I have some T3 added he would write to my GP to see if they are willing to prescribe NDT on the NHS as it is cheaper than T3 so they may prescribe it, he said he will copy me in the letter so I will know when GP gets letter

So now. A waiting game for me as the GP I see is only at the surgery 2 or 3 times a month so. I will have to wait for GP to get the letter

Does anyone know where I stand for the NHS prescribing it to me as I is black listed for new patients Or has anyone else got NDT as new patient on NHS since it’s been black listed ?

A bit unfair if I don’t get it as been left Quite unwell T4 for years so if I do get it refused I will be taking it further as should of been on this 15-16 years ago when it wasn’t black listed but wasn’t because of ignorant GPs

Ok I’m am a bit better with T3 added but still have many symptoms of Hypo so isn’t fair leaving me suffering.

Can the Gp say no if NDTi black listed or CCG Which I’m in Devon says they don’t prescribe it !

Are the GPsallowed to not follow what Endo consultant has instructed them to do? Even though he is an NHS consultant,

I made sure I went NHS so they didn’t have the private excuse to fob me off with .

Any info will be appreciated so I can go armed to Gp when she gets the letter which should be this week sometime .

I had a sub thyroidectomy in teens and have heard people who have had thyroidectomy do better on NDT this was also confirmed by my new Endo .

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SlowDragon profile image
SlowDragonAdministrator

Was this an NHS endocrinologist?

Using this website you can search prescribing data

openprescribing.net

Map showing Armour NDT in 2018

That's number of prescriptions, not number of patients

(At least 4 prescriptions per year per person?)

4 prescriptions in N devon

5 prescriptions in Torbay

openprescribing.net/analyse...

It's slightly easier to get T3, even though it's more expensive

2018

136 prescriptions in N Devon

96 prescriptions in Torbay

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Pascha1 profile image
Pascha1 in reply toSlowDragon

Thank you :)

Yes was NHS , I’m in west devon x

SlowDragon profile image
SlowDragonAdministrator in reply toPascha1

Then the endocrinologist is obliged to provide an NHS prescription via hospital for initial 3 month trial.

Assuming trial is successful, then ongoing care and cost of prescribing is continued by your GP

That certainly is the case with T3

May be more difficult with NDT

Pascha1 profile image
Pascha1 in reply toSlowDragon

I think the hospital I went to is in an area where the ccg has stopped prescribing T3 so doubt that NDT will be allowed, but not 100% on that, sounds like I will just have to sit and wait on this ,x

SlowDragon profile image
SlowDragonAdministrator in reply toPascha1

A CCG is not allowed to "ban" prescribing of T3

You can and should get 3 month trial under care of endocrinologist. Then, assuming trial is successful, an individual funding request is made by endocrinologist for your ongoing treatment via GP

SeasideSusie profile image
SeasideSusieRemembering

Because NDT is unlicensed in the UK, it means that any doctor prescribing it has to take personal responsibility so it is down to the individual doctor if they are willing to do that.

From gmc-uk.org/ethical-guidance...

70

When prescribing an unlicensed medicine you must:

a.be satisfied that there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy

b.take responsibility for prescribing the medicine and for overseeing the patient’s care, monitoring, and any follow up treatment, or ensure that arrangements are made for another suitable doctor to do so

c.make a clear, accurate and legible record of all medicines prescribed and, where you are not following common practice, your reasons for prescribing an unlicensed medicine.

Information for patients about the licence for their medicines

However, there are many medicines being prescribed daily, that come into this category - as "unlicensed medicine" or for "unlicensed use", you can find a list by Googling but some common ones are

Metformin (for PCOS)

Rituximab (unlicensed use for some conditions but my late husband had that as part of his cancer treatment)

Lorazepam (for acute anxiety)

Azithromycin (for CF and bronchiectasis patients, I take this)

Antidepressants (as an adjunct to other analgesics, neuropathic pain)

So it does happen very frequently.

Pascha1 profile image
Pascha1 in reply toSeasideSusie

Thank you, x

I will be staying under his care for bloods I think, he did say if she says no he will monitor my bloods if I buy it on the internet which is also quite good but would rather get an nhs prescription tbh my GP is quite good and understands bloods with T3 so guess she will know about NDT she knew what it was but said she doubted I would get ndt as not many are on it so fingers crossed she will prescribe now Endo has initiated it . I won’t hold my breath though x

Pascha1 profile image
Pascha1 in reply toSeasideSusie

Omg lorazepam for acute anxiety , that’s what I was put on when they hadn’t diagnosed my hyperthyroid just before I had thyroid toxic crisis, they thought my hyperthyroid was acute anxiety.. they are useless on thyroid in both hyper and Hypo, makes you wonder if they are at all safe.. sorry for this comment but was a bit shocked that’s what they thought severe hyperthyroid was ..

and thank you for all info I appreciate it x

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