How long will this fight be? Do any of these guys care? I’ve just got my life together, even started a part time job which I’m loving. How can the powers that be dangle this carrot in front of me and then take it away! 😔
(Background, in T4/3 combo initiated by private endo, NHS GP agreed to take over prescription and then said she had been contacted by the local prescribing team (Surrey Heath) to say that Liothyronine has just been blacklisted and tjatbshecould no longer prescribe)
Your GP can only prescribe after a trial by an NHS endo who then recommends to continue with it. They cannot prescribe as a request from a private endo. That would look like they were initiating the prescribing and is against the guidance. 🤸🏿♀️🥛
MissGrace she did indeed prescribe after a private Endo initiated and was more than happy to continue prescribing as long as private Endo was overseeing my thyroid health. GP said she was contacted by the local prescribing team to say it had now been blacklisted.
Read this guidance:
sps.nhs.uk/articles/updated...
Liothyronine has not been blacklisted nationally, but your CCG has taken a local decision to blacklist it. Only those who meet the criteria in the guidance will be able to get it (if they are extremely lucky).
Also, I suggest you join ITT Campaign on fb.
Thank you. Yes I’ve seen that article.
It's not just an article, it's the guidance that applies, or should apply to patients in the circumstances described. However that's no guarantee that the guidance will be followed by a CCG.
Yes, I know it well 🤗
Have just had a look, I find the whole tone of the document depressing - especially when they talk about ethical responsibilities and ‘professional standards of good medical practise’ - I know cynical is my middle name but I think that covers everything.
Then they say ‘ liothyronine is only prescribed in the situations where alternative treatments have been found to be inadequate’
Apart from levothyroxine what ‘alternative treatments’ do they have in mind? I mean very few of them check B12, vitamin D, folates and ferritin. I wonder if they mean antidepressants because the whole process has got their patient, who by this time is already compromised and feeling very ill because their body is badly needing T3 ,feeling very down?
Someone needs to point out to those guys that dealing with them can be depressing - that does not mean that you are clinically depressed!
Apart from levothyroxine what ‘alternative treatments’ do they have in mind?
They do mean Levo. Some people can't benefit from it, although the situation where you can qualify is so tight that realistically it's near impossible to get it.
That’s what I meant - do they mean levothyroxine which is the same thing as levo.
Most people in the U.K. start off on levo and when that doesn’t help they need to move onto T3 or NDT neither of which which is easy to get these days.
The whole system stinks.
Yes, they talk about the 'standard' treatment being Levothyroxine, but in 'rare' cases where that isn't beneficial, they acknowledge that T3, or Liothyronine might be needed, but only after a 3 month carefully audited trial by an NHS Endo, after he/she has ruled out any other possible causes for the symptoms.
You state:-
Then they say ‘ liothyronine is only prescribed in the situations where alternative treatments have been found to be inadequate'.
A majority on this forum are on here because we found our treatment inadequate. If it was not, then we'd be doing something other than being on a forum.
"What alternative treatment are they offering?" antidepressants, pain relief or counselling.
They are also completely unaware that vitamins/minerals are needed to be optimal but these are rarely checked either.
I thought that was what I said but maybe it didn’t come over like that.
It’s obvious from what we see on here on a daily basis that T4 isn’t always adequate but doctors aren’t prepared to offer alternatives as far as I can see. AntiDs, pain relief and counselling can’t make up for a thyroid that is screaming out for T3
Add to that the fact that one seems to bother to check vitamins B12 and D plus folates and ferritin In most cases
I agree - something called 'commonsense' has gone out the window long ago.
Definitely true. It's as if we are car engines i.e. top up the oil and car should never break down. Except we aren't given the 'oil' but a tablet containing a non-active hormone.
Yes that’s what I’m saying - the GP wasn’t following the guidance. And as people are saying, finding an NHS endo who will prescribe or can prescribe is like a needle in a haystack. There are people on here who have been lucky - but it’s a lottery. This link should take you to a copy of the guidance.
sps.nhs.uk/wp-content/uploa...
🤸🏿♀️🥛
Hello I had my T3 prescribed following an appointment with a private endo a few years back. I paid for the trial, then he wrote to my GP who agreed to prescribe it on NHS, my experience is that the NHS will prescribe it following private endo appointment. Having said this mine is in the process of being with drawn as well now as the CCG where I live are refusing to fund it. My GP is great and will prescribe for as long as he can - the process of it being withdrawn has started - so far I have been sent to see an NHS endo and just my luck he is the one who wrote the edict banning T3.
A few years back is before the most recent guidance about an NHS endo. That’s why people are having it withdrawn. The guidance came in when after the price went up. 🤸🏿♀️🥛
I’ve seen my local NHS Endo team twice and they insist that I’m well and that Liothyronine is dangerous and they will never prescribe it.
He should have his licence withdrawn for telling 'Tall Stories' about T3. Why then does our body not function when T3 is low or very low.
Thyroiduk's researchers and others have proven that many improve with the addition of T3 t/T4 or T3 alone.
The fact that False Statements have been made about NDT - in use safely since 1892 and the only product available up until (I believe) the 60's and people stopped dying a dreadful death but now that has been withdrawn because of FALSE STATEMENTS made to justify - just goes to show that these professionals have no compassion for the sick and if they do are forbidden to use their knowledge/instinct to heal and alleviate disabling symptoms.
Our options are now 'nil by mouth' except T4.
I had a private 3 month trial of T3 with T4 also after becoming very unwell. My GP couldn’t prescribe as, as you say it was blacklisted but only to GP’s not NHS Endocrinologists. My GP referred me to an NHS Endocrinologist who also refused initially even though my 3 month trial was a huge success. Eventually the NHS Endocrinologist gave me a prescription which I’ve had now for 3 months. He was very reluctant to prescribe. I asked my GP why had the Endo changed his mind, he told me that he was reprimanded by his superiors.
I also got the DIO2 gene test done, which came back positive. This sealed the fact that I struggle converting T4 to T3. Have you thought about having this test done to see if it’ll help your case.
Hey McPammy. Yes we started treatment from the same Prof at around the same time. I also have the Heterozygous gene but my NHS people don’t recognise it. I should need it as my results since 2014 show very poor conversion. Always around 0% through range up to a maximum of 13% through range if I really try and push my Levo up (but then that makes me have Hypo and hyper type symtoms)
Oh that’s terrible. What other evidence do they need to prove you need T3 medication. Low T3 results and positive DIO2. Can’t believe they are so stupid. Even if the NHS Endo would give you a private prescription then you could source from Germany like I have done, that’d be help in the right direction.
My heart goes out to you.
Can you call your private Prof and let him know the struggle you are having with the NHS Endocrinologist. This is what I did then at my next appointment the NHS Endo surprisingly prescribed T3. I asked my GP why would the NHS Endocrinologist suddenly change his mind. The GP’s answer was that the NHS Endo was reprimanded by his superiors. I put 2+2 together and think our private Endocrinologist had a word with someone. I don’t know for sure but it was really coincidental and the timing etc.
Have a chat with our private Endo. Your bloods and gene tests prove you need T3 med. This worked for me.
Yes he knows McPammy. I’m getting another prescription from him. I get the impression from my NHS endo that she doesn’t rate our Private Prof. She raised an eyebrow and said ‘well HE’s certainly changed his tune’ to which I replied ‘yes I know that he didn’t use to prescribe T3, you’re not telling me anything I don’t know (another forum member had told me some history) but now he’s VERY sure of the benefits’
We really did butt heads! The NHS endo has her heels firmley dug in!! 🤬
Hello could I ask did you get the D102 test done privately? reason I ask is at my recent NHS endo appointment I asked for this to be done, he said that they do not accept this test as it is flawed!
Hi,
I’ve never heard of it being flawed before. My Drs accepted it no problem. I did get it done privately with Regenerus Laboratories. If you google them you can order the test on line. There are 2 options. £85 if you want the test result to go to your chosen Dr. Or option 2, test plus a verified person to interpret the test to you then send you the report for a further £65. Total £150. I chose option 2 as I wanted to know the result first before I presented it to my Drs. It’s all private. Mine was positive.
Thank you it was NHS Professor /Endo at Charing X hospital that told me this about the D102 test being flawed. I had said I would get the test done privately and he said NHS doesn't accept it. It would seem it is pick and choose and he won't accept it as you have had a different experience. He actually told me I should not be on any meds at all . I pointed out that I had positive antibodies and that I had felt so unwell for years, now I am at a stage where I feel good much of the time. Never brilliant but am able to get through the day etc. He said oh the antibodies are low. I am at my wits end waiting for them to pull the plug on my T3. Jumping through hoops at the moment ,most recently sent for dexa bone scan etc NHS trying to glean evidence that T3 is harmful. I know the risks and the positives far outweight the minor negatives for me. T3 has made my life worth living and that sounds so dramatic I know.
Well to me it does not sound dramatic. I would say exactly the same. I was on the floor literally most of the time last year. My T3 was very low as well as my cortisol. I could hardly walk and ended up being housebound for over a year. They kept swerving the T3 even though I requested a trial of it. NHS refused me. I went private eventually. This is when after a full year of being in hell when the private Endocrinologist after 2 consultations said I needed T3. Finally! I thought. Then waited 2 weeks to get it privately from Germany. It is like a miracle for me. Within a day I could walk normally. It was incredible. The NHS still refused to prescribe all on cost they said. I lost my dream job and was abandoned by the NHS I felt. After 4 months successfully on T3 the NHS suddenly decided to prescribe it to me. The
DIO2 test was already underway. And when it came back positive I was delighted. As now I knew what and why. I needed to know for my own mind to settle.
Now I can walk for miles and do just anything within reason.
Looking back over my health records I’ve been hypo and under medicated for 11 years since I started with Hashimotos back then. No wonder I felt bad so often for years and my skin was bad and always trying to diet. I also had very low cortisol which has now bounced back remarkably. I had thyroid and adrenal issues. T3 sorted both out. I feel at least 10 years younger. All my cells are now working like they use to.
I’m so sorry you’ve been put in this position. It’s just awful. I still cannot believe these Drs not helping thyroid patients. My T3 from the NHS is £111 for 100 tablets. There is no cost issue. If your bloods are low then you need it. What’s up with them. Makes me so mad.
It’s quite unbelievable. Some people praise the NHS. I have no time for them. They’ve ruined my life and abandoned me. My NHS Endocrinologist wrote to my GP saying I need a psychiatric assessment. Oh my good god. The next time I saw him he was writing out a T3 prescription without me even approaching the subject. Go figure. These Drs are very dangerous.
Thank you Mc Pammy at least you are doing well now so there is hope. Just a battle that we could all do without , life is hard enough 
I wish you well .
I know this is old, but I saw the phrase “some people praise the NHS, but I’ve no time for them” and wanted to say that this is why I refused to clap on Thursdays for them. It made me squirm inside and feel bitterly disappointed. The NHS has allowed the ruination of my life. Ignoring me and telling me either nothing is wrong or that there is nothing they can do. Now I live with atrial fibrillation same as Dad did. Mum says rubbish like “there’s no need to fear your end will be as awful as Dad’s was because things will have come on since he was diagnosed 40 years ago, and he never followed his doctor’s advice”. But I know nothing much has changed in that field and the lack of care and treatment I’ve been subjected too for hypothyroidism has probably caused the AFib to start earlier than it should have for me. And now my GP refuses to take my Heterozygous Dio2 test result into account. So I can currently buy T3 from abroad, but what will happen to that route once we reach the end of transition? No idea.
My GP took note of my DIO2 positive result. I do believe that’s due to myself having a senior professor as my Endocrinologist. If you’d like his details just PM me x
I have never clapped for them either. Both my husband and I worked for them for many years and even though we know the system well, I couldn't get the correct treatment for my thyroid disease.
I never clapped either! Hubby and I cringed and made sure we weren’t out around that time to get caught up. Smacks of propaganda to me. I’ve had to deal with the NHS from a small accident prone child to adulthood to motherhood and o have rarely met a professional worth their salt!
It’s not flawed but it’s not HARD evidence when we’re diagnosed as Heterozygous and not homozygous because a large majority of the population is Heterozygous and yet they either have no thyroid problems and/or no conversion issues. So it’s not cut and dry and more research is needed. ESP if they can find the correlation between those with thyroid/conversion issues and Heterozygous positive result. It SHOULD be taken into account but like all things Thyroid not enough research is being done. What is being done seems flawed and inadequate. The whole thing needs overhauled.
So if I were in your shoes I would get in done if you can afford it but otherwise stuck to FT3/4 testing on a regular basis to build up a history as that is the most effective way to show low/poor conversion.
Good morning , thank you that explains it better than the professor did. I will definitely get it done before I am hauled in again.
NWA6 If you are Heterozygous DIO2 for the faulty polymorphism you do have a conversion problem, as in my case. It is merely not as serious as homozygous. Heterozygous means one parent gave you a faulty gene. Homozygous means you are worse off because both parents gave you the gene. Of course, we don't know what else may be causing an issue....possibly a faulty DIO1. I am hopefully going to have this tested now too.
Yeah I get that, I’m Heterozygous (had DI02 teast) but so is a large amount of the population so Endos are not taking it seriously. I don’t regret having the test done because it gave me peace of mind but not one professional I’ve seen has any clue what it means and it hasn’t helped me getting T3. The ONLY thing that helped me get T3 privately was having 5yrs worth of FULL Thyriod blood tests and if I’m honest this is the one of the best indicators of conversion problems. At times my T3 was 0% through range which NHS deem good enough to have a life but my private Endo saw what it really meant. My private Endo still refers to TSH as an indicator to thyriod health so he’s not as clued up as I’d like but I’m running with it for now as it’s my T3 source.
Although I am lucky enough to be prescribed liothyronine by my GP it took years and the occasional sympathetic clinician to achieve this. I have tried to stop it on many occasions to simplify my own treatment, they never tried to stop it. however the local hospital trust endocrinology department are facing an extremely long and detailed complaint from me about their handling of my hypothyroidism within which, among other things, I set out the case that refusal to supply both T4 and T3 for patients who have clear assessment of their own symptoms together with blood tests that indicate relatively low T3 for their peer group should never be denied replacement T3. Not only are there good clinical arguments for needing a small amount of T3 there is another perhaps stronger legal argument why they should not refuse it and certainly should not blacklist the replacement hormone for prescription and that is that every single person without a thyroid condition produces a small amount of T3 and the body uses this in all manner of ways that are not entirely clear but beyond doubt that it occurs. To say that it cannot be normally prescribed is discriminating against all of us with the disability of hypothyroidism, and a disability is exactly what it is. I believe that the NHS is in breach of the disability discrimination act where ever it chooses to only allow replacement hormone therapy with levothyroxine! You could make a formal complaint via PALS against the CCG and include disability discrimination as an issue and suggest to the clinicians that they try living without any T3! Yes they will say their body converts it and that your body will convert it from T4 but nobody knows how much stress this causes and how sub optimal for health this is for those people that do not secrete T3. They have a simple solution to reproducing what the healthy thyroid gland secretes, that is T4 and T3 in normal healthy proportions. Furthermore, it is beyond time the NHS and the drug companies produced Combined therapy treatment options. What the NHS clinicians and managers rely on in refusing or resisting prescription of T3 is that give us T4 and we will not die, T3 alone is seldom if ever an appropriate replacement, the amount of T3 that we need can be so small that clinicians write it off as insignificant and yet it is one of the most powerful hormones that we can take. We do not need much but what we do need is probably essential for reasonable quality of life given our disability.
Thank you Hashhouseman 🤗 I really needed to hear of others trying to buck the trend of this bloody cost saving scheme (although my NHS endo says it’s got nothing to do with cost, she says I simply don’t need it and I’m acting dangerously by taking it, even though a renowned Prof prescribed it for me as my need was VERY clear). Any advise going forward would be greatly appreciated, I feel overwhelmed at what steps to take and in what order. I’ve started a new part time job, 1 day a week college and I’ve still got 4 teenagers! 😬 I just need to get my head round this.
The cost of my T3 medication from an NHS hospital was £111 for 100 T3 tablets 5mcg. The invoice was still attached when I collected them from the NHS hospital. So for me taking x2 5mcg daily is approx £55 a month. I would ask what is the cost impact to the NHS for your dosage. It’s not as expensive as they make us believe. My NHS Endocrinologist told me the cost would be between £650-£800 a month. ‘Bollocks’ is exactly what our private Endocrinologist told me on that cost prediction and he was correct. And you do need it if your bloods for T3 is low and positive DIO2 gene test. Or continue to get T3 privately from Germany as it’s so cheap. I have x2 supply routes through Germany and recently from NHS.
I wonder whether you can argue that the guidance is disciminatory because your original treatment was via private Endo and the guidance says that private patients can't be given an NHS prescription. The question should be asked as to why not? Surely whatever route you came to be on T3 provided it was from a bona fide professional in his/her field should be perfectly acceptable? I have never understood why private patients have been excluded like this (unless contrary to their claim, it IS about money)
Unfortunately the Endocrinologist I saw in Nottingham about 18months ago had agreed he would reinstate my Liothyronine (prescribed in another area I’d moved house). He wanted to complete a few tests first. Three weeks later and he was banned from prescribing it!
😞 oh no!! I’m so sorry. Have you self sourced?
Technically, it's not banned. Some CCGs are making the decision to blacklist it by not following the national guidance.
Why and how have the pharma companies in the UK who produce/supply T3 suddenly increased the cost by an enormous %.
Challenge their assertion it’s dangerous! Compared to what? Parecetomol! That’s the irony, many over the counter drugs as well as many more prescription drugs are far more dangerous.... challenge their implicit assertion you cannot be trusted to manage doses like you would an over the counter pain killer! Unless you have a cardiology issue You are unlikely to take too much liothyronine except by a terrible mistake. The symptoms of even a marginal overdose are unpleasant but probably not life-threatening and almost certainly beyond long-term abuse because of how jittery it will make you feel. And yes, it is all about cost! They are lying if they say anything else not just cost of prescription but yes it takes a little bit more clinical oversight to support you in managing replacement therapy with both T4 and T3. They can’t be bothered and they don’t want to pay for it. It’s easier for them to stick to the paradigm that nobody needs T3!
Something you could try while you fight this battle with the NHS but which may help your conversion of T4 is to split your levothyroxine dose into at least two and up to 4 doses over 24 hours, the human thyroid system never secretes as much T4 as levothyroxine dosing practice normally induces. There is strong scientific medical knowledge that the rate of T4 to T3 conversion within the cells is reduced by negative feedback in the presence of increasing amounts of T4. Consequently there comes a point where levothyroxine dosing may, even temporarily but on a day-to-day basis be limiting the amount of T3 available in cells just because of the size of the dose. I know this for myself because not only do I get side-effects from taking more than 50 µg of levothyroxine in one go if I split my dose into 25 µg portions every 4 to 6 hours my T3 levels hold up much better than if I was taking the whole dose on waking every day. That is mediaeval treatment when you consider that modern scientific knowledge of the thyroid hormone system establishes that t4 and t3 secretion is pulsitile and evenly spread over 24 hrs. We cannot yet practically emulate such secretion but four doses gets way more closer to it than one!
Do you dose on an empty stomach ?
Not always😏
It doesn’t matter to me what the absolute absorption of each dose is so much as not raising free t4 too much after a single big dose. The difference between maximal and minimal absorption isn’t so great and if you stick to a regime as part of normal life habits you can increase the overall dose to compensate while remembering that any changes to your habits thereafter could affect your overall dose. I use absorption to help adjust my dose without changing the size of the pills! So, if I feel I need more T4, either from symptoms or blood test, I could slightly increase the amount I take at night and first thing in the morning compared to what I take during the day, I take at least 50 µg very close to or even with food. The only thing I’m slightly more wary about are some prescription drugs and iron supplements to be careful of any more significant or unusual adverse affects on absorption.
Thank you Hashihouseman
Interesting what you say about splitting.
I need to go to work now but want to revisit everyone’s replies but I’ve scanned them and thought this would make you laugh. My NHS endo likened T3 to Steroids! She said she would never prescribe steroids long term and she feels the same about T3! I argued that they may both be hormones but they most certainly are NOT the same and that she should provide me with proof that T3 is harmful to those that need it. I’m still waiting to receive said proof! 🤬
That alone deserves a complaint! Thyroid hormones are not steroids! Incontrovertibly medically scientifically not steroids! Does that clinician not have the basic grasp of thyroid hormone metabolism and its biological physiological significance? These doctors should have their normal functional T3 metabolism cauterised for a couple of months, then perhaps they will think twice before pontificating …
They seem to think that we mere mortals without a med degree are also without a brain!
They haven't worked out that we can see through waffle and bluster....but to spout misinformation like that is unethical and potentially dangerous.
Her silence speaks volumes!
She would definitely need to prescribe steroids for life for a person with Addison’s disease( failure of the adrenal glands). As without steroids (Hydrocortisone) it is fatal for them.
I was put on steroids last year for a short time as my cortisol was so low
Addison’s disease is under Endocrinologists.
Your Endocrinologist needs reporting to her superiors.
Patients who need T3 in order to recover find themselves in strange world where medics are in almost total denial of it's importance to the entire body.
All too often....
They cling to the notion that the feed back loop will ensure the correct balance of thyroid hormones.
They reel off the supposed dangers of T3.
They forget that they prescribe all manner of other powerful drugs with numerous possible side effects. Why should T3 be viewed any differently?
They are hide bound by the man made construct that is thyroid lab tests and overlook clinical signs.
They forget TSH is not a thyroid hormone but the messenger that prompts the thyroid to produce more hormone as it is needed.
They fail to understand, therefore, that TSH testing is a diagnostic test and not a method of monitoring thyroid function.
They fail to understand the importance of optimal levels of Ferritin, folate, vit D a nd vit B12 in T4 to T3 conversion.
They often side line positive Dio2 test results.
They refuse to accept that Thyroid Hormond Resistance is the result of anything other than a narrow band of genetic mutations.
They forget that much has still to be discovered in this field.
They cannot explain why a small number of patients can tolerate supraphysiological doses of T3 without signs of overmedication....or choose not to go there.
They see the current obscene price rise of T3 and think "cost savings" rather than therapeutic benefit.
....and so on.
These are my personal views, the result of decades of non- diagnosis, incorrect diagnoses, non and then under medication, slowly decling health over decades and finally a struggle to function at all.
All because my cellular level of T3 was gradually dropping and unable to provide what the body required to function properly.
It wasn't medics who discovered this it was the result of my personal research and crucially, the support and advice I found on this forum.
I now self medicate with a huge dose of T3 and self monitor my condition. My FT3 is well over of range.
I am very close to recovery but it has taken 2 years.
My story is simply a reflection of that of many others who are often not able to fight a system that fails them.
Those who have tried to fight that system have found they frequently face an impenetrable brick wall.
I hope you manage to find medics who are sufficiently knowledgeable and who have open minds on thyroid disease....they do exist but many of us struggle to find them
You will get the best advice here, I can vouch for that.
Wishing you good health
DD
Hi
My I initial blood test before I started t3 and t4 were
T3 nil ( 3.8-6.8)
T4 9 ( 11-28).
I had my t3 stopped just as I was having radiotherapy for female breast cancer. Talk about bad timing.
I am under the care of a private endo who said my test results were the worst she’d ever seen. Should I have been offered an appointment with an nhs one? I have now swapped to ndt which is not that cheap but better than thyroxine only I was offered.
Oh this old chestnut! "Blacklisted" - absolutely rubbish. It is far from dangerous, that is old crap from way back on studies so say carried out that are not relevant to us. I completely feel for you NWA6, they give you hope and you get some quality of life back and then they snatch it away. My heart goes out to you, it really does. No one and I mean no one, understands what it is like to have a thyroid condition, unless they have one themselves. It zaps you of any quality of life and it can be horrendous if not on the right medication for your individual needs.
The reason it is so say classed as dangerous hence "blacklisted" is purely because the powers that be, allow greedy pharmaceutical companies to charge ridiculous prices for it - going from 8p a tablet to £9 plus a tablet!
When my problems began, I was told that certain Dr's in the private sector many moons ago was prescribing to people with normal thyroid function as a slimming agent and or body beautiful and they were having more than one a day, so as a consequence, was causing heart problems, hence the danger. One particular Dr had so say been struck off and lost his licence - lies lies lies lies! Also it been clinically tested on elderly patients with so say heart problems - neither story relates to our needs. If the above was happening, then people would have health problems, but we are being penalised because of it. That is the fury and anguish it creates.
I was told by my GP over three years ago, that I had to be referred to see a Endo because it was a Endo that could only prescribe it in the NHS due to the cost etc. I had been on it for many years before from a private Endo.
So I went a long and the "person" I saw had already made up her mind, before I got in the door and she completely ignored what I said, she told me that "it was not worth the paper it was written on, that the medication did not work, there was no evidence to suggest it did. She mentioned the studies above, (which I challenged) and then not only did she accuse my husband of being an enabler, but told me that she was surprised I had not had a heart attack and that she would prove in my blood tests that I did not need it" This is the censored version. I was not polite, I reported her, for her unprofessional conduct, which she denied saying anything - needless to say, I walked out after telling to .... off, had the blood tests, proved her wrong in every aspect and needless to say (touch wood and cross fingered) I am still on T3, three and half years later without question! She also said, that the medication was a complete waste of money, and the money should be spent on more worthy causes and not on a minority like us - hence the reason I reported her. Needless to say, she did not want to see me again - or I her! Not seen a Endo since and I would refuse to go.
When I have my annual blood tests now, they only test TSH and T4, they never do T3, so can't take me off the T3 medication and I am fine with that.
But what gets me above all this and I have said it many times, is that, had they not messed me around many many moons ago, (been on meds all my life), I most probably would not have needed the T3 combination. One of the GP's at the same practice, even said to me once about the T3 that "I was lucky to be on it"
Keep fighting for it. I do not understand why it is so expensive, bar the fact these pharmaceutical companies, see a money making machine and people who really need it are being penalised because of it.
I get so angry over this subject and really p....d off about how people are struggling purely out of greed by people who do not know our struggles.
Take care and keep us posted.
PS Sorry for the long post and my rant ! x
I thought this "blacklisted" saga was over. I was originally prescribed mine by an endo and got it from my GP for years, then it's suddenly stopped by him although he blamed the CCG. Long story but through an IFR I got it back. Please don't say we have gone backwards and they are stopping it again. I took it to the ombudsman and the final outcome of that was the CCG say they sent a letter to GP's saying they shouldn't stop it all cases as they recognised there was a need in some circumstances. My surgery weren't able to furnish me with a copy of that letter. Each blames the other. It's all about cost and why hasn't something still been done about this?
I think your in a situation where your doctor's are not familiar with hypo prescribing needs. My GP is best golf buddies with the local endo, so my GP probably knows more than most, luckily for me, but I can share my experience. An NHS GP can't order T3 blood tests, my GP says he's tried and the lab don't do it, so he's prevented from prescribing lip and has to refer to the endo. My NHS endo prescribes me lio, but it comes out of the hospital budget, not the GPs budget, as I collect my prescription from the hospital pharmacy each time. So I would say your issue is a local budgetary one and your GP doesn't know the protocols to enable you to get it. I did my own thyroid panel blood test through Thriva, talked to my GP about the T3 conversion issues evidenced by the lab results and he referred me to the endo. I would suggest you get a referral to an NHS endo.
I tested positive for the DIO2 gene several years ago. Nottingham CCG policy states there is not enough robust evidence to support it being a reason to prescribe Liothyronine. I mention this incase anyone was considering this private test primarily to help an appeal to a CCG.
It took me 10 months to get mine reinstated after 2 refusals. You have to fight for it. Have you emailed ccg direct? Also worth a copy email to jon ashworth shadow health secretary, he was brilliant helying me.
I admit I have not read the other replies as there are so many of them.
The policy for liothyronine originates here for Surrey Heath: surreyandsussex.nhs.uk/wp-c...
The conclusion I reach is that the CCG is correct based upon that document as your prescription originated from a private endo, NOT from the "banning" of liothyronine.
In Lancashire Liothyronine is actually banned for everybody, quite incorrectly and based upon the fact that it has been subject to insufficient trials, which is quite accurate. BUT this same reasoning applies also to both NDT AND Levothyroxine!!!
On that basis, Levothyroxine should be banned!!!
NWA6, altho you are hearing a lot of optimistic stories that it's possible to get the prescription back, it's very possible that even after a long fight you won't be able to get access to NHS T3.
Many of us buy our own from overseas, and it's worth being prepared to do this. Or paying for a long term private prescription if it's within your means.
Thanks SilverAvocado. Yes I’m prepared for self sourcing and waiting for Brexit to see how that affects private prescription but then also I could pay for a British private prescription too, so I’m in a good position all round but I’m really REALLY fecking pissed off, not mainly for myself but for all those that can’t ever afford a quality of life. I know I’m preaching to the converted here but Jaysus Christ what the hell is this shit show we call Healthcare. I’m so angry at the dismantling of our beloved NHS and thyroid health is just a drop in the ocean.
I've had a thyroidectomy due to cancer, and have been disabled for the 6.5 years since, in bed most of the time and not able to do basic self care. At this point nothing surprises me. I really thought that not being able to work, or milestones like that would be meaningful in trying to get proper treatment, but honestly the doctors do not give a poo about quality of life or even pretty extreme levels of disability. All they care about is ticking off the box the guidelines tell them to tick.
My case is a little more complicated, just having T3 added wasn't enough for me. I've had to go back to the more old fashioned methods to get some improvement by self medicating. I do think that already I'm pretty angry that I've managed to get this far on my own, but doctors aren't willing to do it. If I get myself well enough to work part-time and have more of a normal life I'll be beyond disgusted.
As you say, I think of all the people in my position who were sent home to rot, and weren't able to do what I've done 
Thank you everyone 🤗 I still need a few days to work through all the replies! I’m so busy now, now that is that I actually have a life! All thanks to T3. One way or another I can never be without it, this full life I have now is amazing, I can never go back to my half life, existing is not a life.
You give me hope that I can live life one day. Thanks, you are amazing.
I’m seeing an nhs endocrinologist, he agreed I needed t3 , I had some so he agreed to monitor me , but is still insisting he can’t prescribe, and has written to my GP so ask if he will give me a private prescription, is he just fobbing me off ?
I agree "Existing" is not a life and certainly not quality of life. Although I am happy with things, I am still disabled to a certain degree, I am just glad I have the T3 , I dread to think what the future holds especially with the Brexit disaster. You take care
It depends which CCG area. Some have effectively blacklisted Liothyronine against RMOC guidance. If that is the case for any patient, they need to write to the CCG and ask for it (as per the RMOC guidance). If the CCG send a final letter refusing, the patient's next option is to write to the Parliamentary Health Ombudsman to complain that the CCG is flouting national guidance.
If you read the guidance, it (unfairly) excludes patients who have been prescribed by a private Endo. Don't ask me why but that is what it says.
MP has acted on my email and replied SAME DAY
My gp has said he's going to stop prescribing me Liothyronine, help!
Liothyronine has been reinstated in Norfolk and Waveney!
Three months of liothyronine and now my hair has FINALLY stopped falling out!
my endo has been amazing from the beginning and is a nhs doctor
