NHS T3 prescription now blacklisted, what next?

[NWA6]

So my Private endo wrote to my GP and asked her to take over my prescription of T3. She agreed provided that he still oversee my dosing and thyroid health. I got my first prescription last week for only a months supply. Now I get this letter today. Who do I make a complaint to and what’s the process?

[Hidden]

Hi Paula, I'm not sure what the next steps are. I'd definitely go to your MP to get all the help you can. I get T3 via my a prescription from my endo. The CCG community pharmacist called me saying she didn't know if my GP would be able to prescribe in future. GP says it's just bureaucracy and he will prescribe but I'm not as confident as him. So for now endocrinology had agreed to prescribe for six months. Medics want to do their best but might not be able to prescribe long term. If you get any good advice on how to challenge the CCG I'd appreciate hearing about it. Good luck,

Michael

[shaws Administrator in reply to Hidden]

I think it is a disgrace that people who've never seen a particular patient can over-ride what another professional advises the patient to take, in order to restore her/him to good health.

[jimh111]

Certainly go and see (not write to) you MP and kick up a fuss, they're not exactly busy at the moment so should have plenty of time to help you. Also, make a formal complaint (use the term formal complaint) to the body that sent the letter. We need to make it more effort for them to refuse than to prescribe, they are generally lazy and will take the easy option. This is why they take on the patients, they feel it is less work than taking on the pharmaceutical companies.

[NWA6 in reply to jimh111]

Thanks jimh111. So do I start with a formal complaint to my GP who wrote the letter? I have just emailed my MP who is unfortunately Michael Gove and not a man I’m on board with 😩

I didn’t think that Liothyronine was ‘blacklisted’ I didn’t think a ‘local prescribing team’ (who even is that?) could override an Endo/GP’s decision to prescribe?

[jimh111 in reply to NWA6]

I wouldn't go after your GP as you will need them in the future. I would make sure you get a copy of the actual communication telling the GP not to prescribe and go after those who sent it. GPs do not have to follow this guidance but many are not confident enough to override it. I would go and see Michael Gove as MPs on all sides do tend to be quite good at looking after their voters. Get the actual phrasing of any letters and take it from there.

[SlowDragon Administrator in reply to NWA6]

Ask for second opinion NHS referral to NHS endocrinologist recommended by your current private endocrinologist

Ask private endocrinologist to request GP refer you to his recommended NHS consultant

(Will pm you a name )

Technically you can only be prescribed T3 on NHS by NHS endocrinologist....clearly your current NHS endocrinologist is never going to do that ......

But you are entitled to NHS second opinion. Likely to take several months for appointment to come through

[MaisieGray]

I imagine a local prescribing team is nothing fancier than an unconstitutional group of 'professionals' that the CCG has brought together to come up with a local formulary and make expenditure savings under the guise of "best meeting local needs" or some such twallop. For instance, West Berkshire CCG has a Medicines Optimisation Team

comprising a team of pharmacists, who "work to help us get the best out of medicines for our population". They say "Medicines Optimisation is about helping patients and health professionals to make the right treatment choices and use them correctly. We use an evidence-based approach to choosing prescription products which balance the safety, tolerability, value and simplicity. When decisions are made the discussions involve a variety of people including GPs, consultants, pharmacists and patients. Sometimes the decisions can be difficult and we have to make recommendations that involve changes to treatments or restricting their use of particular medications but the overall aim is to get the best improvement in health for the most people with the resources that are available." I suggest you find out from their web, or by phoning them, what your CCG says about its local prescribing team, whoever it is, because you will in part, need to counter their decision not to prescribe T3 by challenging "how" they've done it. So for instance, as West Berkshire mentions evidence-based approach to decision-making, you could challenge that because we know there aren't the studies and therefore isn't the evidence to be applied, in the way implied by evidence-based approach.

You will also need to use the latest revision of the RMOC Liothyronine Prescribing Guidelines as your reference; but the problem is that CCGs are charged with finding/delivering local solutions to local problems which is great in principle but as we know, it's a cop out for not following national rules and regs. So another argument is therefore, how locally, your CCG is failing to work within / working contrary to the RMOC guidelines. I don't think that involving MPs is generally worth the effort emailing them, it certainly did me no good, but you might be luckier.

My own application to have my T3 reinstated took two attempts, and what swung it was a homozygous-positive DIO2 result for the (T92A) rs225014 variant.

[NWA6]

Thank you for all those replies! I will have a good think and also google where I can get more support. I think the most difficult thing to manage is the language that is used. I don’t mean swearing! I mean language that ‘they’ all use to get their point across without causing offence. What Masiegray posted is so spot on!! They all use this language ‘best for the whole community’ Which means we’re broke and can’t commit to your Liothyronine 😩 I need to get savvy! 😉

[Hay2016 in reply to NWA6]

May be worth having a look at ITT Facebook too as they have template letters from what I understand. Not had to get my head round that yet. It’s next months job. Xx

[spongecat]

NWA6

Definitely see Michael Gove! His wife is the journalist Sarah Vine who has an underactive thyroid herself. She frequently complains about it in her Daily Mail column!

I'm also rather shocked at the rather casual tone of the letter as if they were stopping a vitamin prescription or something. ....with a rather "sorry about that old bean" sort of tone.

Somebody else who might not understand how important their liothyronine is for them might just think "Oh well there you go" and then at a later date wonder why they are feeling so dreadful.

Good luck! 🍀

[NWA6 in reply to spongecat]

Thank you for that update spongecat, that’s really helpful. I’m so emotional today! Really thought I was getting somewhere with my health care. My GP’s hate me! I’ve been tantruming for 10yrs telling them I don’t feel well on Levothyroxine. Things came to a head early this year and I went to see a private Endo who understood immediately that I needed T3. It’s been like a miraculous recovery for me these last 5mths and I can’t bear the thought of not being on combo treatment.

[NWA6]

😔 I’m so sorry you’ve had to endure this StickyBloodMentor. It’s just a bloody sad stare of affaires! I don’t know what will become of all this! I’m consumed with frustration atm. I know no one really cares!

[Afaghieh]

Hi You have had great response. I wonder whether you should ask NICE also.

[shaws Administrator]

The withdrawal of T3 has been caused due to the exorbitant rise in cost that the 'three' pharmaceutical companies have made. Also it was the perfect excuse.

thyroiduk.org.uk/tuk/campai...

I think the cost rose by 6,000% - others will comment if I'm wrong in the percentage.

thyroiduk.org.uk/tuk/campai...

[TaraJR]

NWA6 do join ITT (Improve Thyroid Treatment) on Facebook, who are campaigning hard against these edicts, in collaboration with other thyroid patient groups. ITT can give you lots of info to help you fight this.

All CCGs I think have a medicines management group (by whatever name) to try to get costs down. National guidance states that a minority of hypo patients need T3 to be well, and they should have it. And many CCGs are ignoring it - obviously cost is the main issue, with the NHS paying an exorbitant price for T3.

Don't waste time asking NICE. They are in the middle of creating a new thyroid guideline in November. Their June draft was not good regarding T3, and our groups have submitted robust responses on the draft.

Which CCG are you under? I'll add this CCG to the cases we are reporting for not following NHSE guidance.

[NWA6 in reply to TaraJR]

Thank you TaraJR. I have just joined ITT on Facebook. I’m in Surrey Heath (not sure if that comes under Surrey or not)

[TaraJR in reply to NWA6]

Oh good. And I'll add Surrey Heath to the list. See you soon on ITT.

[shaws Administrator in reply to TaraJR]

Why is it that the 'professionals' who must see patients who recover on NDT or T3 or T3/T4 would want to alter the prescription to T4 alone. Mind you many of us on this forum have read statements from those who you'd think would know better - being endocrinologists and I find it very puzzling that they don't take account of the clinical symptoms and the relief of them.

[TaraJR in reply to shaws]

It beggars belief. The NICE draft response barely mentioned patient symptoms which is also unbelievable.

[shaws Administrator in reply to TaraJR]

It seems they don't care one iota that many of us need other than levothyroxine. I was much worse on it than before I diagnosed myself and by that time my TSH was 100. Is it because most of the 'professionals' are male so have not had as many experiences as females who are hypo and neither do they know any of the clinical symptoms. Due to many of us requesting T3 (either added to T4 or T3 alone) they thought they'd withdraw it, without any notice at all, leaving many patients anxious and worried.

[TaraJR]

Hidden which CCG are you under? I will add it to the list of CCGs who we are reporting for not following NHSE guidance.

[Batty1]

If your seeing a private Endo why does NHS have anything to say about the medication they are prescribing if you have to pay for it out of pocket, I thought NHS could rule over only their departments not private ones?

[NWA6 in reply to Batty1]

Hey Batty1. Sorry for the confusion. I saw a private Endo earlier this year who understood immediately that I was a poor convertor (actually had the prescription waiting for me at my first appointment because I had sent ahead several years worth of full blood tests, that despite always being in range my FT3 was always extremely low) So my first prescription for T3 was a private one that I sent off to Germany. After 3mths on combo treatment we (private Endo and me) were very sure that this was the right therapy and dosing so my private endo wrote to my GP and asked if she would taken over my prescribing. My GP agreed as long as he could assure her that he would oversee my thyroid health ie I would need a yearly visit with my private endo who would then write to my GP and say all is well. But also if I need a dose change my Private endo would be the only one that could approve it.

My GP had just given me my first NHS prescription for one months supply and then i got this letter.

[Batty1 in reply to NWA6]

Ok, can't you just keep seeing and getting prescription through the private Endo and just leave GP out of it?

[NWA6 in reply to Batty1]

For now yes. But that’s not my end goal. No.1 we have Brexit to deal with when British prescriptions might not be honoured by European countries. No2 there’s a moral dilemma here, why is it that only those that can afford private health care get the best treatment? I need to help my fellow Hypo people get NHS treatment and I won’t do that if I just accept that T3 is blacklisted in my area. It’s very important to me that the professionals stop lying about how dangerous T3 is.

[Batty1 in reply to NWA6]

Doesn't NHS have cost sharing for prescriptions? Like me not all my scripts are free I pay so much money depending on the script.

I witness Gov't run healthcare in the US called Medicare my elderly mother pays $350.00 a month for medicare and another $350.00 a month for a secondary insurance to cover what Medicare won't and they dont cover a lot and does this on a very little retirement budget. Medicare has this thing called prescription donut hole have you ever heard of that. If you get more prescriptions then Medicare has allotted you for the fiscal year, you go without they call it a donut hole and the typical elderly person usually take more meds then most so a lot of our elderly go without medication due to this stupid donut hole.

My mother is a very private person and never told my family she was unable to fill scripts because of her donut hole(secondary insurance doesn't cover scripts)...I was shocked and if my mother goes through this you bet others do too...just wrong, this is how our gov't takes care of our elderly. The gov't takes my money and then does god knows what with it as its certainly not to care for our elderly properly and her cost share for her scripts was crazy expensive I kid you not they were $100.00 plus for some of her meds and as and elderly person with lots of meds that could devastate you financially or you simply don't fill your scripts like very important heart meds,sugar med, blood pressure. Makes me mad.

I believe the Govt needs to get the healthcare business nothing good comes from it as they can't manage the simple things, let them manage healthcare for billions and I guarantee they run out of money and your population suffers with restrictions that could end up costing 10xs more money when their populations health problems explode and people can no longer work.

I bet the healthcare rulers get excellent care and no medication turn downs or appt. delays when they need it.

Anyway my rant is over. I hope you get what you need to keep you humming along!

[endomad]

My T3 was stopped due to cost, they actually put that in writing! My local MP Jon ashworth was brilliant and his assistant brow beat them into submission. This was all done by email with ccg. I kept answers short and to the point...no proof it works 'I am proof it works for me' ....it's blacklisted 'no it isnt' ....we can't afford it 'not my problem and nhs pays grotesquely inflated price, your job to sort it.

NHS England also called them to say they can't stop it. Tbh I made a bit of a nuisance of myself. My endo stuck his neck out for me. He gave me private prescriptions until it was reinstated 10 months later, which I took to France. I have no doubt that they will try again. I have to have 3 monthly blood tests so they can 'monitor me!' They are not medically trained just cost cutters. I have 6 months stash in case of emergency.

Can your endo see you as an nhs patient? I saw mine private first time, he put me on nhs and it is outside my ccg area, they reimburse the hospital.

Good luck, my ccg stopped all T3 knowing most will accept it, it was z cost cutting exercise, I dug my heels in and wouldn't give up.

[NWA6 in reply to endomad]

Thank you endomad 🤗 well done for sticking to your guns! I am so glad you have had help along the way. I am very well atm. I am living proof that T3 can give back quality of life. Levothyroxine keeps me alive but gives me no quality.

My endo only does private now, he’s not part of the NHS. My NHS endo says that what I’m doin is dangerous. She likened T3 to steroids! Can you believe that! She’s useless! I will pursue this. I’m grateful to be well and for the knowledge that so many on this forum are sharing.

[shaws Administrator]

The main excuse was not the cost but to have it withdrawn altogether. I think a good idea would be to take out their thyroid glands and then let them try to recover on levo alone.