I would appreciate any thoughts on a call I received from the GP practice tonight

Hello All, I would really appreciate your thoughts on the following scenario. I had an appointment with an endocrinologist recently and the advice was for a trial of liquid levothyroxine. I had a call from the receptionist at my GP practice asking if I really needed the liquid levothyroxine as it is a £100 a bottle. I came off the call both upset and angry. Does the GP have the right to ask this if it was recommended during a consultation that referred me for? Any thoughts would be very much appreciated as I have been thinking of changing my GP for a while. Thank you in advance 😊

[Jazzw]

Oh, I’m so sorry Solace143. That does sound crap.

I think you last posted about 10 months ago so I’m not sure what’s happened on between—but it was clear even then that you were really struggling to tolerate Levo tablets. So yes, of course it’s the right thing for your Endo to suggest you try levothyroxine liquid.

She may even have been the type of person who decided to call without speaking to your GP first. But remember, she isn’t a doctor. And has no business suggesting what the appropriate treatment is for you.

How did you leave things? Were you able to stand your ground?

[dizzy864 in reply to Jazzw]

Unfortunately, this is too common. I think. Eight months ago I requested liquid levo after years of problems with what I said was malabsorption and my GP called over medication. My private endontold me he had not heard of liquid levo in his 10 years in practice. I messaged my GP to find my regular doctor was too busy and my request was past to another GP. He instructed the pharmacist " to investigate". Her response was that I was misreading the new legislation and I was not allowed it. I disagreed. She then told me, " it's too expensive and won't make any difference any way". She then phoned my private endo and they agreed the best thing for me was for the doctor to refer me to my local hospital and they can discuss it with me. If she'd had access to my records she would have seen that I d seen an endo at my local hospital after a ten month wait only to be told, "your problems are outside my expertise ". I was curious. Demanded to speak to my GP. - which is d asked for originally. She said straight away I could trial it for 1 bottle. When I collected it from pharmacy, there were two bottles and it had been put on repeat prescription. It's made a big difference and I be reduced lio from 60mcg a day to 45mcg. Which clearly shows I was right!

We have to fight and argue every time!

[SlowDragon Administrator]

Your consultant has recommended you are prescribed liquid levothyroxine.

Presumably your consultant has written to GP with details

Government guidelines support this

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

Print this out and be ready to give it to GP surgery if necessary

There are different brands of liquid levothyroxine

helvella has a list of brands including ingredients

[humanbean]

This thread linking to helvella 's Thyroid Hormones Document shows you information on the oral solution Levo products doctors can prescribe in the UK on page 36.

healthunlocked.com/thyroidu...

This link is to the BNF - British National Formulary list of oral solutions available with some indication of price (although I don't understand pricing of drugs in the NHS) and I know these can't be taken to be gospel truth :

bnf.nice.org.uk/medicinal-f...

Hope it helps in some way.

[helvella Administrator]

To me, it stinks.

That question seems to accuse you of choosing on the "because I'm worth it" basis. That you are choosing an expensive medicine because it is expensive.

The reality being:

- you didn't choose it - the endocrinologist did.

- there is nothing you can do about your inability to tolerate other levothyroxine products.

- you can't do anything about the price (and likely didn't know until they told you).

- does he actually expect you to say "No, I don't really want it. I'd rather stick to cheap levothyroxine tablets"?

- how can you possibly know until you have tried it?

- would he stick with levothyroxine tablets if he had the problems you have?

(Back, once again, in blame the patient territory.)

Have to say, if this is happening with one bottle for a trial, what will they say if it successfully treats you and you need a bottle a month (or whatever)?

I don't think it is necessarily wrong for a GP to try to understand where their medicines budget is going, and run their practices efficiently and economically. But it seems that this approach is grossly wrong.

[Jazzw in reply to helvella]

Completely agree.

[MMaud]

Frankly, if your GP won't prescribthe liquid variant, please call the Endo's secretary and ask the Endo to reiterate/intervene.

When my GP was being silly, about drawing bloods, requested by the Endo, I,put a call in to ask if there was any point attending my appointment without bloods.

Within 30 minutes I had an appointment for bloods.

[Lulu2607]

The receptionist should not be asking you this. The prescription is the result of a consultation with a hospital consultant and as such it carries authority which should not be questioned by the GP and certainly not the secretary. It's no longer a decision for the GP as you were referred to the hospital for specialist advice and this is the outcome which you've both agreed.

[crimple]

Solace143 I would say it is totally unacceptable for the practice receptionist to phone and ask you if you really need the Liothyronine. If a Consultant has prescribed the medication then you need it and should have it. I am not surprised that you were upset.As to what you can do about it perhaps speak to the Consultant's secretary and explain what has happened. Were you taking Liothyronine in tablet form previously? What dosage of T3 should you be taking? Do you take Levothyroxine also. What are your most recent thyroid blood results (with ranges in brackets)?

I am sure someone in the group will come along to offer further advice.

[Guost]

Hi I had exactly the same thing. They tried to get me except a different box of tabletscas the cost £1. My doctors said the liquid is £168. You need you get your consultant to write a letter to them to ask them to give it to you. Then they have too.. long I got mine this way. Next I will ask my consultant to let them know that I need to be on it. Again they have to do what the consultant says, without a letter they don’t . Good luck it’s so frustrating

[HashiFedUp]

If it is in the consultant letter to the GP that is enough. I would simply refer the doctors to the letter and just demand they follow it! I wouldn’t bother entering into a debate about it or wasting energy on it…!

[Localhero in reply to HashiFedUp]

Agreed.

Hidden , it’s inexcusable that they dump their bad admin on you and cause you to doubt your worth.

Call them and say, my consultant has prescribed this, I need it, now please supply it.

No debate.

[Cornwaller]

You're worth it.

Equally the GP could reduce their considerable salary or pension by a £100, at least this wouldn't impact on anyone's health.

Better still the NHS could source / contract a supplier of liquid levo at a sensible price just like they don't with Liothyronine.

These are generic drugs and are cheap to manufacture and can be sourced at reasonable prices. Someone needs to sort out the NHS drug procurement function as it is wasting our money and perversely impacting on patient well being.

[Bollieforme]

Hi there I am on liquid levo, it does seem more effective than the tablet form but just marginally. (I don’t have any thyroid left) my pharmacy has to order it in as I’m the only patient on it he tells me. I have a hernia in the top part of my stomach so swallowing pills in the a.m. is challenging. You should be able to get it especially as the Endo has recommended it. I’d keep pushing if I were you. Good luck

[Annib1]

I hope you get what you need and that it works for you. This relationship between GP and patient and endocrinologist seems to be getting increasingly more difficult. In my case I was referred by the GP to an NHS endocrinologist whom I had previously seen privately as I could not wait indefinitely for the NHS referral to come through. Now it has come through and the endo has written to me before my first NHS appointment with him and asked me to discuss with the GP whether she would accept his recommendation for Liothyronine if he were to prescribe it. I asked for a GP appointment to discuss this but was offered a phone call which I am still waiting for. There seems little point in a GP making a referral to a consultant if they are going to ignore the expert advice. And The receptionist tells me the GP is also then going to have to involve the CCG. Good luck to us all in these difficult times!

[SlowDragon Administrator in reply to Annib1]

Annib1

You can look up your CCG prescription numbers here if in England

Some CCG areas are worse than others

openprescribing.net/analyse...

Guidelines are if you see an NHS endocrinologist and they say you have clinical need of liothyronine you should be prescribed

Rather than asking the GP if they will prescribe…..seems to make it more likely they would say no

Endocrinologist should write to GP asking them to take over care and cost of prescription

Your endocrinologist may need to do an Individual Funding request (IFR) on your behalf

[Annib1 in reply to SlowDragon]

Thank you for this. Does a IFR for Liothyronine go to the CCG or to NHS England? And is it the GP or the endo who has to put in the request? I feel I may have to guide my GP and endo through this maze!

[SlowDragon Administrator in reply to Annib1]

I think it depends how “difficult” your GP or possibly the CCG want to be

Initially endocrinologist writes to GP with request that GP prescribe T3

1) GP could just agree. GP may need to get funding approved and CCG might agree.

2) GP might agree but CCG might turn down funding

3) Or GP and CCG might both be difficult

Option 2 and 3 might require IFR

Which CCG area are you in

It’s getting easier now price charged to NHS for T3 is dropping considerably.

Now £63 per 28 tablets 20mcg T3

Down from £268 when only one supplier

[Annib1 in reply to SlowDragon]

I am in NHS Devon. Using your tool I could not find any prescribing data under CCG but under my GP practice it seems they do prescribe. Fingers crossed.

[SlowDragon Administrator in reply to Annib1]

Devon 2,424 prescriptions in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

How much T3 are you currently taking

I think Devon still currently has ludicrous rule of 10mcg T3 per day maximum per patient

southwest.devonformularygui...

[Annib1 in reply to SlowDragon]

I am on 20 lio and 75 levo at the moment after trialling various combinations of Erfa, levo and lio. Still trying to find my sweet spot but this feels not too bad at the moment.

[SlowDragon Administrator in reply to Annib1]

Perhaps write a new post asking if any forum members in Devon CCG get more than 10mcg per day prescribed on nhs

[SlowDragon Administrator in reply to Annib1]

Posts that mention Devon

Some might be relevant

healthunlocked.com/search/p...

[Otto11]

😡😡😡 I’m currently having a similar problem with my GP. Why is everything such a struggle 😡😡😡

[Yoll]

I have had the same situation, refused to give it to me even on a trial period.

[serenfach]

Go back and ask how much an intensive care bed costs per day.... I was told it is in the region of £1700 per day. Makes the cost of the liquid cheap!

The cost is not your problem. If the consultant ordered it, that is the end of the argument. I would be spitting feathers!