Hi I am lucky that I get nhs prescription liothyronine still . As many of you pay private . My consultant told me yesterday that gps in areas around me have stopped prescription of liothyronine and that when this Mexican wave reaches my gp she can appeal but probably it won't work and i will get no prescription . I did ask what I do but she was vague and said we would cross that bridge when it came to it . I felt like I wasntgettinganswers so I gave up cowardly I know
Could you tell me what i do next
Do i need a private prescription and where would I get it ? How much does it cost about for 40 mcg a day of liothyronine . I am employed but on zero hours contract and cant earn much so scared cant afford it .
Also if I am ill I don't get paid .
Sorry I know many of you are suffering so I am not complaining just looking for a solution .
Icant understand as it is necessary treatment What would happen to my health without it .
Thankyou for your help everyone
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poppppy
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If your Consultant is an Endocrinologist, he can prescribe T3.
I assume he'd notify your GP.
Lyn Mynott of TUK has already met with The Lords about the scanalous decision to withdraw T3, without any notice at all and because the suppliers charge enormous amounts of money for one pack of T3.
I received a letter from my surgery yesterday informing me that the practice constantly reviews repeat prescriptions to make sure that patients get the most effective treatment,which provides good value for the NHS without affecting their quality of care.
We are currently reviewing the medicines we use to treat an under active thyroid,particularly Liothyronine which is sometimes used with another thyroid hormone called Levothyroxine.A consultation carried out by NHS England concluded that due to the significant costs associated with Liothyronine and limited evidence to support it's routine use in preference to Levothyroxine,this should not be routinely prescribed. In the local area discussions with clinicians including Gps and Consultants agreed that patients receiving Liothyronine should be reviewed by a specialist.Following this review,if there is a clinical need for Liothyronine then this would be continued by the specialist.This means that the GP would no longer be involved in prescribing Liothyronine.
I am seeing my GP on Tuesday with my letter and shall be asking him .....What happens now?
My consultant is 8 miles away in hospital and I only see him twice a year.
I am due to see him in June. My repeat prescription is due next month .
I asked the receptionist whether they are really expecting me to go chasing around to get my T3 medication at the age of nearly 79years old?
I 've been prescribed T3 since approx 2012/2013!!
My first thought is whether the people bringing in these changes actually know what T3 Liothyronine is and why it is needed to be used.Indeed, if it isn't necessary for some in the treatment of Hypothyroidism ,why does it even exist ?
Sorry. For the long post........I'm very concerned.🙆🏼
They have played the 'monetary game'. i.e. The increase in cost for liothyronine went from some modest amount to a 'greedy' 'extortionate' price. Greedy pharmaceutical companies in UK increased the cost by 6,000%,
I don't see any reason to prevent the NHS sourcing cheaper T3 from elsewhere in the world.
The NHS has had to fork out such sums, with the result that we who survive on T3 have had it withdrawn if we cannot source our own.
I think the fact that you have had it prescribed and for a long period I would contact your MP as you've been on T3 for so long are stable and in good health. That you were on levo before and were more unwell or whatever happened to you. You can also state that Lyn Mynott of TUK has already met The Lords about the withdrawal but nothing seems to have progressed at present:
You could phone your Consultant's secretary and ask him to phone you and tell him the predicament you're in at present.
I think we should remove all of the 'doctors/endocrinologists' thyroid glands or whoever made this decision just to see how they can cope with everyday life with levo alone.
Thanks for your comments Shaws.The whole situation is becoming ridiculous .
I also have a blood test form for cholesterol.What is the point in booking that when you are under medicated for your thyroid? My latest FT3 level is 4.7 which is below 50% in range. I will be asking whether my GP connects the two? I will never take statins.However, hopefully because my Endo prescribed the need for T3 I will be able to continue with it .......will be back in touch after tomorrow's appointment.
I agree, the pricing is crazy, I was on an NHS prescribed T3 trial last year and was contacted by some kind of community pharmacist for the local area to say due to costs it would be uncertain if my GP could prescribe once endocrinology handed me over. They were paying over a hundred a month for the T3. Cos I wanted a back up in case they wouldn't fund I bought a year's supply over there counter in Greece for about 18 euros. Why does three NHS pay so much?
see the post on my page about potential actions against ccg’s, there is info on there about why the nhs is being ripped off and can’t purchase cheap t3. it’s the subject of competition and market authority investigation. i’ve contacted my mp who sent my case study to the Cma ro give examples of patients suffering and having to self medicate. i would suggest you tell your MP to raise your case too. the more people who come forward the better. while bringing prices down might not be the only solution it’s part of it! here is a link about CMA:
Big Pharma are out to make profits, so if we - hypo patients - find a dose which restores our health - their profits will fall. Many times we will get 'extra prescriptions for ordinary medications - instead of the doctor realising that the clinical symptoms are mainly due to a low FT4 or FT3.
It is the greed of the pharma companies that made the prices. At first, when we found out that there would be three new companies offering T3 we were happy and thought that there would at least be some competition between them for the cost of it. Little did we think that the three pharma companies prices were practically the same. Not only the same but prohibitive and it was a wonderful excuse for the GMC to withdraw T3 from being prescribed.
The fact that the NHS has to pay these very, very, exorbitant prices is ridiculous especially when we look at some other countries where the cost is much, much lower.
Hi my consultant is an endocrinologist but she said gps are stopping prescribing so if mine does she cant supply it or everyone will end up coming to that hospital whose gp stops it or something .
GPs cannot stop prescribing T3 if you are getting one from an Endocrinologists. Only Endocrinologists can state that the patient needs T3 and they can prescribe.
Is she trying to get out of prescribing for you. You could mention that you will consult your MP and the House of Lords as they were shocked that T3 had been removed without notice.
It is too much stress, isn't it when we're made to worry that we'll be unwell again.
I have now been prescribed t3 from consultant who then wants my GP to carry on prescribing but he refuses so the hospital has got to do it hopefully, I’m on trial at the moment.
I'm glad that you are being prescribed. I'm surprised your GP wont, unless it may be that the surgery may be charged for it. I'm not sure how it works.
Thankfully the hospital will do so. Wishing that your trial is successful.
I think it is all based upon 'myths'. i.e. damage heart or bones.
We can function without T4 in our bodies, but we cannot do so without T3 i.e. T4 - levothyroxine being an inactive hormone which has to convert to T3. T3 is the Active Thyroid Hormone required in our millions of T3 receptor cells, brain/heart contain the most.
I believe some people just cannot convert T4 into T3.
I'd check with Lyn Mynott of TUK but ask her Assistant, Louise if doctors are compelled to prescribe if Endo advises it or can GP refuse.
For supposed to be educated people, to make statements like " heart and bones" just goes to show they are trying to make excuses.
I have taken T3 for ages and all its done is make me feel well and symptom-free. One of Thyroiduk's Advisers took 150mcg of T3 in the middle of the night (so that nothing interfered with its uptake). He was an expert in the prescribing/use of T3. T3 is the Active Thyroid Hormone and it is needed in all of our millions of T3 receptor cells, brain and heart contain the most.
It is the lack of T3 which can cause us to develop other problems. Our brain and heart contains the most T3 receptor cells and needs T3 and some members may not be able to convert T4 into sufficient T3.
For people who are supposed to be qualified - there is a huge gap in their learning as it seems to consist of TSH and T4. I doubt they are aware that our body especially heart and brain need T3.
T4 is an inactive hormone and T3 is the active one.
Maybe at your next test your cholesterol will be lower. Did you follow this procedure for your test:-
This is an extract from following link:
"How can I lower my LDL level?
There are two main ways to lower your LDL cholesterol:
Therapeutic lifestyle changes (TLC). TLC includes three parts:
Heart-healthy eating. A heart-healthy eating plan limits the amount of saturated and trans fats that you eat. Examples of eating plans that can lower your cholesterol include the Therapeutic Lifestyle Changes diet and the DASH eating plan.
Weight Management. If you are overweight, losing weight can help lower your LDL cholesterol.
Physical Activity. Everyone should get regular physical activity (30 minutes on most, if not all, days).
"Your doctor may recommend fasting before having your cholesterol checked. If they say you should fast, they’ll likely suggest that you avoid eating for 9 to 12 hours before your test.
For this reason, cholesterol tests are often scheduled in the morning. That way, you don’t have to spend a whole day hungry while waiting to have your test.
Yes, I do follow a healthy diet mostly and don't take my levo/lio until after my early morning blood test.
However, my Endo did say I would find it difficult to lose weight.
I don't think I am prescribed enough medication to help that.
100/75 levo alternate mornings + 10mcgs T3 When I read what others here take,I feel like I'm banging my head against a brick wall.I think I will soon be buying my own meds.We have a pharmacy in Essex who we can buy NDT from but he needs a prescription.My Endo won't prescribe it because it isn't licenced in UK.
I didn't really want to resort to buying abroad but looks like that's coming.☹️
I don't fancy searching around when sources dry up.
I think you're right - that you aren't on a sufficient dose of T3.
Re NDT - isn't it ridiculous not to prescribe it when for years and years it was the only replacement available. We were diagnosed without a blood test - symptoms alone were sufficient - and given a dose of NDT and gradually increased it. The NHS saved millions of £££s due to the fact that blood tests weren't needed. More important we didn't die through not having replacement hormones.
The only NDT I know of that doesn't need a prescription is one developed by Dr John Lowe, precisely so it wouldn't need a prescription. His widow now deals with this and I've no clue about cost. Dr Lowe only took one blood test for the initial diagnosis - thereafter there were no blood tests and the patient's improvement of their clinical symptoms were all that was necessary.
When we think back to when NDT was prescribed, there were no blood tests and doctors knew all of the clinical symptoms and it was relief of them that was the priority. It is made from New Zealand Grass Fed cows.
The puzzling thing is that when I saw my Endo in May last year ,he raised my T3 to 20mcgs. Then when I received my letter after the visit,it told me to carry on with 10mcgs,So my GP cancelled the repeat prescription for 20mcgs.
Somewhere along the line there was confusion.When I relayed that to my Endo in November he didn't say anything.
On Monday Ishall be getting a prescription from him as he is now responsible for my prescription because of my GP no longer prescribing it. So, we will see what happens.
Just remind him that he suggested the 20mcg of T3 (he may have forgotten) and therefore your GP would only prescribe 10mcg. I think I'd phone his Secretary to remind him that your dose should be 20mcg instead of 10 and say he suggested 20 to you at your last consultation. He may have forgotten.
Did you know that the BTA et al, withdrew NDT altogether and to do so False Statements had to be made. Dr John Lowe wrote to them and followed up each year for the next two years for a response but they never did and Dr L died.
Considering this hormone replacement was in use, without blood tests and upon clinical symptoms alone from 1892 up to the present day and from then on patients did not die a horrible death.
Dr John Lowe, an expert and scientist wrote the following to them and requested a response every year for three years but they ignored it altogether.
I think he's covering himself as he probably doesn't know much about T3. After all, instead of doctors/endos considering our clinical symptoms and relief of them they usuall only take notice of the TSH only so don't appear to know much more.
Read down the page and read SlowDragon 's response of 19 days ago.
If it is any help,my GP told me that there has been a review with CCGs and NHS England and that now GPs will no longer prescribe T3 .It will be the responsibility of consultants.In my case this has been confirmed for me by a phone call from my Endo's secretary and I will have to pick up my T3 prescription from the hospital pharmacy when I see him on Monday.He will give me enough to last me until I see him again in six month's time. How will this work out for other patients I wonder?
My GP confessed to not knowing much about T3 🙆🏼.......
I have been on Levothyroxine and Liothyronine combined since 2012 and have been anxiously dreading that this will be withdrawn, as so many members have written about this.
Last week I had a phone call from my GP to say that I needed to see an endocrinologist regarding the Liothyronine prescription, at the request of the CCG. Nevertheless she told me not to worry because she was writing to recommend that I should be allowed to stay on it, as I have been on it for a long time. So it is possible for your GP to help if you can get her/him on your side.
My letter arrived today, asking me to make an appointment at the endocrinology dept. Watch this space and I am keeping my fingers crossed!
I'm glad your GP is sensitive to your requirement for T3. Many don't bother whether or not the patients recovers or not on replacement hormones. I had so many problems and heart checks when on levo that the cardiologist was going to put an implant in my heart due to having severe palps during the night as he was puzzled. That's when I was on levo only. When I added T3 I felt an improvement from then on until I took T3 alone and never had to see cardiologist again.
I honestly think that in a 100 years, medics will look back at what we are going through over T3 and will scratch their heads and say “Whatever were they thinking?” It is utter madness. One day we shall be vindicated, surely?
I do not understand the professionals as it is T3 which runs everything in our body - I think that's why NDT suits many and gives us all the hormones rather than a synthetic one. I don't mind the synthetic as I feel well on it.
Apparently the NHS did a deal some time ago that they would be given low prices on branded medicines but generics like T3 could be any price. Fools! They thought competition in the market would level the price. It has for most but not T3 and now there seems to be a cartel whereby all companies sell at approx the same price. Corruption or what?
It does sound like it. Especially as T3 can be sourced in other countries for far less. The NHS is being bled, it would seem, through Big Pharma and its aim for profits, whilst we need hormones to just have a normal day without symptoms.
Hi there Hennerton,I have been spending time catching up with some older posts, having just come back from a blood test at hospital,as my Endo check up has been brought forward to next Monday,because I also had a letter from my GP to say that he will no longer be prescribing my T3 .I went to see him in order to clarify the situation and was shocked at the way he spoke to me.I tried to explain the importance of T3 as it was the active thyroid hormone,because he said he didn't know much about it 😱. He raised his voice telling me he didn't need a lecture and not to argue with him!!
I said that I was not arguing with him but trying to understand what was happening........
End of interview....!! I will see what my Endo says next week as he is now responsible for prescribing it for me and I will have to drive to hospital ( 16mile round trip) to get my repeat prescriptions,instead of the pharmacy below my surgery. Soon to be 79years old and having been a patient at this surgery for over 50years ,I certainly resented being spoken to like some difficult teenage brat.My family have suggested that it is he who has some problems and that Ishould speak to my MP, but I will wait to see what my Endo says. I would be pleased to hear whether you are now sorted about it with your GP.
I am told this is a problem countrywide,due to cost.( I only have a half tablet, 10mcgs a day)
I feel for you. This is so frustrating. I have just received a letter from my GP asking me to book an appointment at my local hospital to see an endocrinologist. I am obviously going to have to plead my case, even though my GP has said she wishes me to continue on T3. There is no knowing how it will go but I am preparing my answers and statements. Unfortunately my TSH is very suppressed so I know he will pounce on that as a problem.
It is not until April, as I chose the latest appointment they offered. Will let you know but can honestly offer no advice on your own problem. It is all a lottery. Is there a different GP in your practice that you could try for a better view? Your current one sounds absolutely vile. I do not think I would stay with him if I were you.
I do know that your TSH will be suppressed if you are taking T3 .I understood from my Endo that if he were to increase my T4 it would send my T3 down so won't do that. A year ago he increased my T3 to 20mcgs and then within 3 weeks I had a letter to carry on taking 10mcgs.However, I will see what the results are of today's blood test on my visit to him at the hospital next Monday.
My family are in favour of me changing GP's.I will have to see how things go.
All best wishes to you and I will let you know how Iget on.I too am making a list of questions.😊
If you post those new blood results, when you get them, members can give advice. Sounds as though your GP has no idea what he is doing but feels threatened by a patient who appears to know more than he does. Toxic mixture...
Yes Hennerton,I will do.Some years back in the early days of being diagnosed Hypothyroid ,the senior GP who has since retired ,told me that the important thing is how you feel. Well, I have never been that asked since by my current GP,so am thankful that it was once said to me and I have never forgotten that.
I know the retired one had knowledge of the condition because his wife who was the senior nurse at that time and always pleasant was also hypothyroid.
I find it hard to understand what is going on now,as you would think that with Thyroid problems on the increase that GPs would be wanting to increase their knowledge,especially when that small gland is governing our metabolism.
I am also having cortisol tested as when the junior Endo asked me what was my mother's health like and I had to tell him that she had major problems that had to be treated with Hydrocortisone for over 25 years before she died.At that time,her consultant used to send a car for her to attend round the table conferences with trainee Endos at her hospital( she didn't drive) He said to me " Oh, you know about that then" Where is all this heading? I sincerely hope that more serious consideration is given to Hypothyroidism and T3, for the sake of our future generations. We are so fortunate to be able discuss our problems here at TUK.
I think my GP got a shock when he realised TUK was not just a little local group .
I think that so many rules and regulations are issued to GPs they have lost the art of thinking for themselves. They just look up the latest guideline and are told what to do. Furthermore, they dare not use common sense, for fear of breaching the guideline. The computer gives them a box to tick for a blood test, for instance and if the box is not there, they cannot order it. I am specifically thinking of blood tests for T3. Every time I ask for one I have to beg my GP to get the lab to do it. It simply is not shown on the lab’s list. This has only happened in the past few years. I suspect it will only get worse for us, not better.
I think the whole thing is a disgrace and going to be a big worry for patients who need T3 in order to feel better.
I think my GP has just put up a barrier because his hands are tied.However, I will see what develops when I see my Endo next week ........good to talk to you though.
I have received a phone call this morning from my Endo's secretary and I was able to have a good chat to her and voice my concerns( politely!😊 )
She has told me that when I visit my Endo's clinic at hospital on Monday, he will issue me a 3 month prescription which as I only take 1/2 a tablet of T3 will last me for 6 months until I see him again.She said that I have no need to run out of T3 .I can phone her on theirEndocrine extension number and they will issue another prescription to be collected in the hospital pharmacy.Also they will post me a print out of my blood test results along with my letter after my visit to my Endo's clinic.
They are no longer allowed to e mail them.if I ever have any concerns to ring her.
I felt very reassured by that and will now only have to make 2 trips a year to the hospital which is OK. I emphasised how important it is to receive the ranges in brackets along with the test result which she noted.
I also said that several people have said I should contact my MP about the current situation and got the impression that they will welcome any publicity that helps move this forward.So, keep plugging away and let's hope things will change for the better.
• in reply to
I must just add a footnote to our exchange of messages.
It is a good job I manage to retain my sense of humour.
Following my last reply this morning after my call from my Endo's secretary,I went to my door to pick up my post.........Oh good,it's the latest issue of my Museum Selection which I will enjoy browsing through with a cuppa later............
Underneath it was a brochure for pre paid funeral plans from the local Cemetary.
Oh golly, I thought, don't get happy for too long Margaret 🙆🏼😊
Sounds as though you have good luck with your Endo and his secretary. Great news! The secretary sounds amazingly human. I hope my experience is as good as yours but I am not confident, after seeing posts on here where people are treated so badly. I have no idea who I am seeing so cannot look him up to check his bedside manner but I have never met an endocrinologist who did not think he was God.
I wouldn’t bother with PALS as I contacted them at Addenbrookes and they told me that my concerns weren’t anything to do with them and that I should contact the “Patient Experience Team” at the CCG. This, after the consultant asked the GP to prescribe who then contacted the CCG. I can’t take any form of Levothyroxine because I am intolerant to it yet the CCG say that isn’t “exceptional enough”!
funny enough i think one of the doctors involved in the DOI2 gene study ( which speculates some people with this mutation can’t process t4 to t3), is a consultant at addenbrook ( cambridge).
your gripe would be with the CCG wouldn’t it, if the consultant was supportive but the CCG refused to prescribe? i agree it’s outrageous we are being treated like this. i’m self medicating ndt and going to try and get t3. if i can’t i’m going to consider taking action against the CCG/nhs. see my page for the post regarding this
Write to your GP, asking why the change as you have been well on the current medical regime and are worried for your overall health about any changes. GPs are very reluctant to put such stuff in writing as any letter is a legal document. S/he may well just ignore any other "advice" for the want of a quiet life.
If the worst comes to the worse, I would recommend doing some research into NDT. I moved to NDT when they took away my Liothyronine and felt much better. There is loads of info on here about it. At least it is an alternative for you so if the liothyronine is withdrawn, there is hope out there!
poppppy Hidden Hennerton Paul Robinson has been keeping a video diary (on youtube) of his attempts to prevent a 'compulsory' consultant review of his T3 prescription by using the GDPR.
Basically, if you have opted out from the various NHS data-sharing schemes, your GP cannot forward your medical record to the CCG without breaking the law on data protection. In such circumstances, you could make a complaint to the ICO and demand that the CCG/hospital return your record to the GP and take no further action on the lio prescription. There is more detail to this, of course, and Paul is still going through the process.
Just read this thread. Am so sorry to hear they are doing this irrespective of the damage to the health of patients. An not on T3 but on a ndt.....so am guessing it will come my way. However they do have on file a letter several years old that states all the other medications they will have to prescribe to ameliorate symptoms that levo doesnt do will cost them more than the ndt. How much longer before I get the letter I dont know but I will fight.
What I dont understand is why the procurement dept of the NHS isnt standing up to all the overcharging of everything they purchase. Eg we pay 35-45p for a 16 packet of generic paracetamol tablets; nhs pays £12!!! Its the same with loads of stuff the nhs buys. Bonkers! They would save millions if they sorted the prices they pay for stuff.
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