Uh Oh! Should I be worried?

[Gilbo72]

So in August, my NHS endo wrote to my GP saying that my 18 month trial of T3 combo therapy has proved a success and T3 is a necessity and would they be happy to take over the prescription?

Last week I received a text message saying my prescription was ready to pick up from the local pharmacy, when I got there, it was just the T4 not the T3. The pharmacist told me to talk to the surgery as they did not receive the order for T3.

I spoke to someone on the phone at the surgery who said 'Oh it just needs to be signed off by the doctor, the pharmacy will have it for you next week.' I tried to explain it may be a little harder than that, and what do I need to do?

Anyway, waited all week, no T3 prescription, messaged the GP surgery again explaining the Endo had suggested I talked to the GP about taking over the prescription. I got a message back just now, saying a 'Clinical Pharmacist' would ring me back next week...

Should I be worried?

[JMN2017]

Hi Gilbo72

I can understand why you're concerned. I suggest you book a phone call with your GP who referred you in the first place. If GP refers, it's only polite at least, they accept the advice from the Endo.

If you happen to get a prescription before the phone call, then you can always cancel, eh? That's the route I would take LOL

[jimh111]

I'd be worried. I've found GP pharmacists to be very friendly but working to rules not making decisions or considering symptoms. I' be tempted to ask for the prescription first and then talk to a pharmacist.

[Gilbo72 in reply to jimh111]

what is a 'clinical pharmacist anyway?'

[jimh111 in reply to Gilbo72]

Search me! Maybe a pharmacist that looks at the patient's signs and symptoms as well, but given they usually have telephone consultations that doesn't work out.Here is the bs from Wikipedia en.wikipedia.org/wiki/Clini... . More likely they will have been told what to do regardless of your clinical status. Hopefully I am wrong. I would be friendly and cooperative but be ready to be assertive if you smell a rat.

[SlowDragon Ambassador]

Your endocrinologist may well need to do an individual funding request on your behalf

[TaraJR in reply to SlowDragon]

I hope they won't insist on that. IFRs are not supposed to be needed for T3...

House of Lords - November 2019 - Baroness Blackwood (Parliamentary under Secretary of State for Health & Social Care) stated in a House of Lords written answer that “an Individual Funding request (IFR) is not intended to be used for rationing treatments, such as liothyronine.”

theyworkforyou.com/wrans/?i...

[SlowDragon Ambassador in reply to TaraJR]

We had another member only this week where they have just finished successfully 6 month trial of T3 via endocrinologist with hospital prescription

Endocrinologist had written to GP to request they take over care and cost

GP is refusing to prescribe

[Delgor]

I'd be worried too but you have been given good advice. My clinical pharmacist intefered with my medication about 4 years ago even though I had been happy and contented on it for 26 years. Now still battling to get myself right again with the help of the lovely people on this forum. You obviously have an endo who is onside which is marvellous - keep him at all costs as you may well need his assistance. Don't let the pharmacist or GP tell you that you have to come off of T3 - they aren't flaming experts. Wishing You All The Best🤗

[Gilbo72 in reply to Delgor]

Yes he is a great endo who has really listened and been very thorough. I am very worried he may take early retirement in the next few years. He is only at the clinic once a week now!

[TiggerMe Ambassador]

You'll probably find that they will just be trying to get you on to the cheapest possible brand, so if you want to stick with what you are currently on be sure to have reasons for refusing any possible change like excipients or tablets needed for splitting rather than capsules etc

If you can get them to do a named brand prescription it will save you the lucky dip issue each time 🤗

Liothyronine

[Gilbo72 in reply to TiggerMe]

that’s a great chart TiggerMe ! Thank you.

I must admit the endo did change my prescription from 100mcg of levo 5 x a week and 20mcg of lio each day to 75mcg of levo each day and 10mcg of lio twice a day, as he said it was more accurate and my first thought was, ‘yes’ and more expensive!’ So I am happy to compromise on that, but obviously it’s getting the lio in the first place.

[TiggerMe Ambassador in reply to Gilbo72]

It's a 🍄 chart if you need more in depth info then head to his blog... helvella.blogspot.com/ knowledge is power 🤗 you will need to guide the pharmacist as they often really don't get the excipients issue

Be firm 😏

[SlowDragon Ambassador in reply to Gilbo72]

You could/should easily get prescription altered to 20mcg tablet per day and cut tablets in half with sharp scalpel or pill cutter

Price difference is vast if getting 10mcg tablets compared to 20mcg tablets

10mcg capsules by Roma are cheaper……but Roma doesn’t seem to suit many people

Current prices

healthunlocked.com/thyroidu...

[HealthStarDust]

Hi. I have found clinical pharmacists to be very good in parts of my care not to do with thyroid. So, you never know?

I would explain the situation as it sounds like your GP has not agreed to Endo suggestion, especially since the mention of a shared care agreement has not been mentioned in your care. I’d be tempted to check open prescribing to see if your practice has history of practicing or not which will give you an idea of how hard the battle may be.

[Gilbo72 in reply to HealthStarDust]

Good point! HealthStarDust , I have had a look, and in the last year they have prescribed 19 items of Liothyronine, costing them £52 in one month. So I am hopeful it will be ok. I am happy to take 20mcg of lio a day rather than 2x 10mcg.

[crimple]

Gilbo72, my Gp practice is generally good. There is a Lloyds pharmacy attached but I have never used it, lots of complaints such as waiting days without any meds. However we do have a pharmacist attached to the practice who does meds reviews. He is well aware that I have suppressed TSH 0.05 and that I can only tolerate Sigma Pharms T3 and Accord Levo.. ( have just swapped to Vencamil, seem ok on that) I have annual bloods tests T4 and T3 always in range and review by pharmacist is by phone, no probs

When I needed to change fro Accord to Vencamil, I wrote a letter to my GP explaining why. New meds received within a week. Hope you get sorted.

[Gilbo72 in reply to crimple]

That’s promising!

[Polo22 in reply to crimple]

Where is your GP practice and can I come live there?

[ClareP5]

Don’t be afraid to email or call the Endo - they won’t expect to be disobeyed and will want you to ask for help

[Gilbo72 in reply to ClareP5]

Yes, good point. But my endo is only in on Weds and the pharmacist is ringing Tues! I am very aware it’s only my endo who is supporting me and he may well retire in the next few years!

[Zazbag in reply to Gilbo72]

Ask pharmacist to call on Thursday instead

[ClareP5 in reply to Gilbo72]

Maybe see what happens with the pharmacist. If GP/ pharmacist don’t follow Endo’s instructions call/email or write to them.

[Yeswithasmile]

I think you’ll be like me and your endo’s request will to and fro between them and the surgery. For months. Whatever happens you need your medication so I’d request a new prescription from the endo at least then you have some. Don’t wait for this clinical pharmacist. Send an email to your endo on Monday. He will then have it when he’s working on Wednesday? Whatever gets discussed on the Tuesday is irrelevant. You have an endo that says you need it.

[Gilbo72 in reply to Yeswithasmile]

to be fair, I think he envisaged this may happen, he has given me a bit of a supply. I am curious as to why no one has mentioned a shared agreement, which I believe is what should be happening.

[Yeswithasmile in reply to Gilbo72]

Yes it seems strange that they don’t do that and then you have to get hold of a copy blah blah. Doesn’t help to drag the whole thing out.

[dizzy864]

Hi, from personal experience, a clinical pharmacist is there to look at the cost of medication and nothing else. In my case, she refused my request for liquid levo stating " it's really expensive and unlikely to help you" She reluctantly agreed that she did not have access to my medical notes and knew nothing of my medical history. She contacted the endo I had seen privately recently, without my consent. The two agreed that i should be referred to an NHS endo - currently nine month wait! I d already asked my endo for liquid levo. He d told me in ten years of practice, he had never come across it!! I d decided not to see him again. I was eventually allowed a consult with my GP, who I had messaged in the first place. She agreed that given my history I should have a 6 month trial. It helped enormously and over 2 years later I m still on it.

I think you will need to fight the surgery. Good luck

[serenfach]

Dont deal with the Clinical Pharmacist - they are bean counters and dont care about your health. I would drop a note into the GP practice asking when the prescription will be ready as you need it now. Just assume that if they have been asked to give you T3, they will. Sometimes pretending to be ignorant of the politics of it all pays off!

[Onlymeandyou]

despite my NHS endo writing to my gp saying that they were now to continue with my T3 prescription they out and out refused. I now have to contact him every 3 months for a further supply

[SarahFrmKent]

Firstly everyone is right, knowledge is power. Don't be afraid to guide the pharmacist, it is your health and treatment plan afterall. Some CP's are amazing, some are just on a cost cutting exercise, which is part of their job. Don't let them leave you without a medication, even if it's just an interim prescription until the matter is resolved. Either your GP's practice or the Endo Secretary should be able to solve this but as your GP has issued a prescription for Levo they have essentially agreed to take over prescribing and should issue the full prescription while they decide on their bureaucracy.

I've recently pushed my prescribing team so surprise, surprise I'm getting another review. What calms me is that I don't have to accept anything they say within that call. I can take the time to come away and consider what they say and discuss with my doctor further if required. Stay strong, hear them out and then go from there.

[McPammy]

In my experiences the GP can’t prescribe any liothyronine T3. It has to be an NHS Endo and you collect it from a hospital pharmacy only. You might need an appointment with your NHS Endo first.

[SlowDragon Ambassador in reply to McPammy]

No …..once initial 3-6 trial is signed off as successful……the ongoing care and cost of prescription should be passed to GP

With annual review back with endo

[McPammy in reply to SlowDragon]

My GP won’t do it. I have to see my NHS Endo every 6 months and I get my T3 prescription from the hospital pharmacy. My local community pharmacy won’t dispense T3 medication they said.

[SlowDragon Ambassador in reply to McPammy]

england.nhs.uk/long-read/li...

If a patient is initiated on liothyronine, prescribing responsibility should remain with the NHS consultant endocrinologist for at least 3 months. After this 3-month period, if the decision is to continue liothyronine, then repeat prescribing in primary care may be reasonable in line with any local shared care arrangements

Date published: 3 August, 2023

[McPammy in reply to SlowDragon]

I know and previously read about it. My GP nor my community pharmacy will do it though. I’ve requested they do it but they won’t. Spoken with the surgery medication manager a few times in the past about it and she keeps saying they can’t do it. IT’s hospital only drug they say. The reason I wanted to collect from my local pharmacy is to do with travelling outside of my area to the hospital every 3 months to collect the T3. I’ve asked what’ll happen in coming years as I get older. How do I make my way to a hospital far away when I’m in my 80’s etc. I get no answer on it.

[SlowDragon Ambassador in reply to McPammy]

Which ICB area are you?

Search prescription numbers here by ICB area…..or even by GP practice name

openprescribing.net/analyse...

I would challenge again with copy of these latest guidelines

GP just doesn’t want to pay for it out of their budget

[McPammy in reply to SlowDragon]

Yes, I feel the GP doesn’t want to pay for it from their budget. GP is paying for my liquid levo and hospital paying for T3. Both expensive.

[SlowDragon Ambassador in reply to McPammy]

Liquid levothyroxine probably more expensive than T3

[McPammy in reply to SlowDragon]

Yes, I think it is.

[Essexlil]

Oh no, I’ve just read your post - are these practice pharmacists being given instructions to over rule GPs if they prescribe T3. Maybe you can read my post and see what’s just happened to me. I live in Essex, where are you as there seems to be a postcode lottery con going on here where certain regions will prescribe it without a problem and others seem determined not to.

I’ve written to my MP Priti Patel twice now and wonder if anything will be done to help me.