I have been under an endocrinologist in Somerset who has stabilised me on 75 mcg levothyroxine and 25 mcg Liothyronine daily. I am now being transferred back to care of my GP in Devon who is only ‘allowed’ to prescribe 10 mcg Liothyronine daily. How is the best way to make the transition? I am objecting through Healthwatch Devon but this will take months. I have some T3 bought in Greece but only in 25 mcg tablets. My MP is interested in helping but he has been told by the ombudsman that I have to go through the ombudsman after complaints to Devon have brought a response. My GP says she is prepared for my TSH to be suppressed but is otherwise not knowledgeable about using T3. She has asked permission to give me more but it has been refused.
Advice on reducing T3 please: I have been under... - Thyroid UK
Advice on reducing T3 please
Annib1
Presumably you feel well on 75 mcg levothyroxine and 25 mcg Liothyronine daily?
If so then reducing your T3 will make you unwell.
You have some 25mcg T3 tablets you've bought from Greece. Why not just use these to top up the 10mcg you're allowed on prescription? You can cut these into halves and/or quarters with a pill cutter (or sharp craft scalpel), it's what I do as I take 3/4 of a 25mcg T3 tablet a day.
That's terrible that your GP is only allowed to prescribe 10mcgs T3 a day. Why are there such crazy restrictions? What if you were on T3 only? My mind is boggling as to how this is happening nd the gross misunderstandings of medics as to how we are best treated.
This is exactly why when I wanted/needed to add T3 I didn't even consider going via the NHS. Too much time to wait, too much struggle and too many arguements to get it and in enough supply. It just shouldn't be like this.
Time to buy a pill cutter and start taking the Greek T3 to top up the NHS supply.
This underlines the rediculous nature of the care of thyroid disease!
You say above that you are stable on 75mcg levo + 25mcg lio ( is that correct, or a typo) and, that is understood by a consultant, so surely any right thinking person /medi would respect that...
Sadly they are afraid of T3!
If you feel well do not reduce/change your dose!
Your Greek supply is also 25mcg so can you use that in the meantime or take 2x 10mcg pill plus half of another to total 25mcg.
I need a high dose of T3-only and cut pills to achieve the correct dose. I'm aged 77 so close to your age!
Both my TSH and FT4 levels are on the floor....glad your GP realises suppressed TSH is not a red flag once T3 is added.....and 25mcg will suppress TSH!
If all else fails it may be necessary to buy your T3 from abroad ( members can advise sources by PM only)
Either way....there is a way through this but hopefully the bean crunchers will reinstate your previous T3 prescription.
Thank you for this. I don’t know that my GP is afraid of T3 but of the powers that be that prevent her from going against local rules. I do not understand where power lies in the NHS. It does not seem to be with the clinicians. My consultant told me that even if he gave me an NHS prescription I would find that the pharmacy would not fill it!
So, could members please pm me about buying T3 abroad? I don’t think any friends are going to Greece before the spring or I would ask them. I am indeed reluctant to upset my present level of wellness.
Annib1
My consultant told me that even if he gave me an NHS prescription I would find that the pharmacy would not fill it!
I think that your consultant is talking out of an orifice other than his mouth. If you present a prescription to a pharmacy they will dispense what's on the prescription, it's not their job to alter the prescription nor do I think they can, a new prescription would have to be issued. If there is a limit on how much T3 your local CCG then the prescribing doctor will apply the limit on the prescription.
If you get any recommendations of a T3 supplier, please send me a PM to check whether I have any feedback on them. Admins can't recommend suppliers but I do keep feedback sent to me by members which I can pass on to you.
From my experience both are true!!
Wild tales of heart attacks and crumbling bones are often touted by medics when T3 is mentioned. My GP was convinced I was killing myself with (self medicated) ) T3 because she did not understand how to use it safely. Now, she ( my surgery) leaves me to it.
The power seems to lie with the administrators and the accountants in most organisations....and with Big Pharma who hiked the price of T3 to eye watering levels.
Medics are wary of being watched and of the prospect, in extremse cases, of losing their licence to practice. yet
They are trained as professional practitioners ....yet their professional judgement is quite severely restricted by guide lines....not even by rules!
They then make excuses to avoid prescribingT3....and expect the unsuspecting patient to be satisfied with being undermedicated. The endo I saw said...."it's like getting in a car...you can arrive safely but you might also crash". I kid you not!!
I doubt there is another disease that is as badly managed as thyroid....it is a scandal of enormous proportion.
Sorry, I'm ranting ...because it makes me so angry.
Suggest you start a new post asking if people will share their sources of T3.... responses must be by PM
Good luck....we're all here to help.
Hey there again :
How absolutely ridiculous and so obvious that in Devon financial constraints outweigh medical need - we knew this already but how galling to have paid to get better only to have your NHS service deny you the correct treatment.
There is an active Devom Support Group run by JaneChapple who will now be notified of your situation but in the first instance surely your specialist in Somerset can repeat a prescription or two for you whilst you try and secure additional T3 - Liothyronine for yourself.
I'm sure those using T3 will PM you with the necessary information, once they read your post,.
if not just start a new post asking for a T3 supplier and ask forum members to Private Message you replies.
I'm self medicate Natural Desiccated Thyroid and a bit out of the T3 loop.
Annib1 Devon is notorious amongst thyroid patient groups for restricting T3 to 10mcg a day. We know of 2 other CCG policies which only allow 20mcg daily. We have reported this in no uncertain terms to NHS England who said it was very worrying. We are hoping for another meeting with them.
Of course it's all based on cost. Though the chief endo at one Devon hospital has been vociferous in her support of the policy which is probably even more worrying.
I hope you can use your Greek T3 so you can keep to a stable dose. Have you written to Devon CCG/ICB on this? I think you have. Have you told them that the price of T3 is more than 80% less than it was. In real terms (allowing for inflation) it's less than it was in eg 2011 before the huge price hike. Have you told the ICB this?
Below is the email I sent to Devon CCG in September but i had a phone call to say they are too busy to deal with anything in their normal time scale so have not responded as yet. I did get a letter back from Bristol hospitals to say i should have been allowed an NHS prescription for T3 and not given a private one but i have had no response to my phone calls and emails trying to take this further and asking for dates I could meet them. I think we are being given a deliberate run around. My MP tried to help but was told i would have to apply to the ombudsman myself so I have done that now with a complaint about Bristol and Weston hospitals. But i have not yet approached the ombudsman about Devon ICB as I have to give them a chance to respond to this complaint email from me first. My GP has approached devon powers that be to ask for permission to give me the 20 mcg but permission was refused. They no longer give you the 20 mcg and ask you to throw half away! I think I will try a letter to my endo to ask him for an NHS prescription while I try and sort this out, quoting my response from Bristol . It is all very tiring and brain fog inducing!
Dear Sir/Madam,
As you can see from the email below, I first contacted you in May and you were able to redirect my complaint at that time to the University of Bristol and Weston's complaints team. They have now replied to me and acknowledged that my consultant was wrong and that he can indeed prescribe for me on the NHS the liothyronine that he assesses that I need. However, he has now referred me back to my GP to take over my care, recommending thyroxine 75mcg 5 days and 100mcg 2 days a week and liothyronine 10mcg twice a day. I have now run into the problem of Devon restricting the dosages of liothyronine to 10mcg daily. I know that on 9th July 2021 NHS England wrote to the Thyroid Trust to confirm that they and the NHS Clinical Commissioners expect local health authorities to allow prescribing of liothyronine in line with the national guidance - which includes cases like mine where levothyroxine alone had failed to resolve symptoms of hypothyroidism. NICE and RMOC both agree. There is no mention in the guidance of restricting access to a certain amount regardless of patient and consultant experience.
I would like you to reconsider your rules so I do not relapse back into avoidable ill health.
Yours faithfully,
Ann Hill
Good.
I also suggest sending a follow up when you have not received a reply from them within in 28 working days (assuming they don't comply with that. I would say that 28 days is long enough). I would emphasise that no clinician should withhold treatment according to a patient's clinical need, and the ICB policy should not be over-riding that.
The BTA president Prof Simon Pearce BTA said on a recent webinar that 'Good medicine should always be an individual decision.'
Also quote the NICEBNF national formulary which shows a maximum dose limit of 60mcg daily. This shows that restricting a thyroid patient to 10mcg is not acceptable. In fact 10mcg is the NICEBNF starting dose.
bnf.nice.org.uk/drugs/lioth...
Brilliant! You have given me a plan!
Have I?!
I suppose the main question to ask them is why are they choosing NOT to follow all national guidance and issued statements from NHSE on T3 ?
I have a phonecall with Weston Super Mare endo on 31st October, any advice welcome!
Janexxx😎😐❤
Have you given them all the national guidance and NHSE statements on T3?
Have you asked 'why are you choosing NOT to follow all the national guidance?' ITT has a list of these of you need them all.
Yes I have both to dr and endo several times since 2019, they just dont want to know. Baning my head against a very large brick wall Im afraid as are many others. It doesnt help sesing an endo outside your area even though we are supposed to hsve freedom of choice about where we get our treatment. They just use it against us. I feel things are getting worse, not better.
janexxx☺️😩❤️
I'm guessing that GP and endo are following ICB (previously CCG) policy, and Devon's is known to be bad.
The next step would be to challenge the ICB, to show them that they are not fully following national guidance because of the daily rationing.
Discussions with an ICB are probably easier done by a group.
Hi Tara
Ive seen a few people contact the new ICBs, they just contact their local RMOC and do nothing. The old Devon CCG has just been merged into the new ICB, so no different than before. There are 20 senior management team in Devon ICB the money this has cost to set up is scandalous. They only have to work a couple of days a month! Imagine the cost all over the Country? Why were the old CCG not sacked? Until AB retires there will be no change in Exeter. I had already written to her about my group but got no answer, surprise surprise.
The problem for Ann and I is not just about the limit of 10mcg but the fact that Bristol are not following the National Guidance and our wonderful friend C has already had meetings with those at the top face to . Since then he has received a letter that they will not allow new patients to have T3 and as far as they are concerned they are following the National Guidance, hence its gone to next stage The Ombudsman. She has been told there is an 8 - 10 month waiting list before it even gets looked at, I wonder why - more gas-lighting?
It does not help that Ann and I are outside the area and PS taking us on privately in the first place. When will it ever end?
Janexxx😐😎❤
hey, I swear I already wrote a reply to a post like this a few weeks back? My personal insight - I stopped 72mcg immediately without a taper under the guidance of Paul Robinson. It made me SO UNWELL I WAS ADMITTED. T3 withdrawal made me the most unwell I have possibly ever been in my entire life. I don’t want to scaremonger as you might be fine but I was absolutely not and I would definitely demand a taper at the very least.
i get my t3 from mexico...grossman... very strong..best you can buy..100 £15+postage....quarter of a tablet to start with sometimes this is enough
I'm somewhat surprised you are prescribed 25 microgram tablets on the NHS. (That is what you have said, isn't it?)
It is particularly ridiculous limiting to 10 micrograms as:
▪️ 10 microgram tablets are disproportionately expensive at £152.44.
▪️ 20 microgram tablets are considerably less expensive at £56.19 than 10 microgram tablets.
▪️ 5, 10 and 20 microgram capsules are the least expensive (£55, £65, £55 respectively).
NHS Drug Tariff prices:
drugtariff.nhsbsa.nhs.uk/#/...
NHS endo in Somerset wrote to GP asking her to write the prescription for 10 mcg T3 twice a day and 75 Levo 5 days a week and 100 Levo 2 days a week. But as there was a month or two gap In communication between them I had to resort to the only tablets I could access which are 25mcg from Greece. I take 1 every night and my 75 Levo every morning and I am ok. I forgot the T3 yesterday morning as the builders arrived early and I was fine all yesterday. But today my brain is all over the place. I pick something up and wonder why I did that. Can’t remember names. Weird.
It's not weird at all -
The brain and cognitive functions demand the lion's share of your T3 :
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