Hi folks. I was getting prescription for levo and T3 from my GP for 2 years. Just before Christmas I received terrible news - that I'll be still getting levo but not T3, he explained it has something to do with budget, I really don't know much about these things... What I should do now? I was feeling so bad before when I was taking only levo for years after my total thyroidectomy. I don't want to feel like that no more, T3 really helped a lot. I am thinking of getting it on my own. Can you recommend the place where I can get in online maybe? It has to be without prescription now. Thank you all.
I can't get T3 on NHS anymore. Thinking of gett... - Thyroid UK
I can't get T3 on NHS anymore. Thinking of getting it on my own. Please help.
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Yes the pharma companies are ripping off the NHS. Here is a link to this news regarding T3
although it is happening with other drugs too:
thetimes.co.uk/article/huge...
I was told by my GP the other day that the NHS does not prescribe T3. I was also told that the T3 I buy online is not regulated even though I buy it from another EU country (what's that all about? - I thought the EU regulated medicines across the board?!). She also said T3 is like being on amphetamines, but I certainly don't feel like I'm on uppers more like on downers! (showing my age with those terms I dare say)
Bobsmydog,
Your GP shows appalling ignorance. T3 is prescribed on the NHS and it is dreadfully ignorant and inaccurate to compare T3 to amphetamines.
Whoever told you that 'T3 is like being on amphetamines' is ignorant - is unaware that our body produces T3 naturally and the whole country would be behaving as if 'high' on it through bodies producing T3 naturally if it had an 'upper' effect.
Did she not tell you that we only have T3 receptor cells in our bodies? That these need T3 in order for our whole metabolism to work at an optimum and relieve all clinical symptoms. Did she not tell you that levothyroxine is inactive? It's job is to convert to T3 and we need sufficient of it to reduce TSH to 1 or lower and T3 towards the top of the range. Some are intolerant to T4.
You'd think educated people in the medical world would know facts and not depend on rumours to try to frighten patients into submission.
It's all due to the Guidelines the Associations provide and it suits them down to the ground they can now ban T3 - never mind the poor suffering patients - due to cost. The Prohibitive Price that Amdipharm (alias MP charged) was never investigated. Caring Associations could give doctors permission to prescribe the alternatives on a 'named-patient basis'. I thought looking after the sick and ailing was a humane process. Instead it is cost-driven and before long we'll be denied this, that, and the other due to cost.
The result, a continuous, miserable life, maybe lose job, unable to process information if T3 isn't in our receptor cells. Let them prescribe Natural Dessicated Thyroid Hormones instead. In use since 1892 whereas levothyroxine has been withdrawn many times and please let patients have a choice - to make a patient well is a great achievement but they prefer us to be unwell and symptomatic due to their ridiculous guidelines.
I take T3 only - my body is calm and I have no symptoms. On levothyroxine my body/heart was in overdrive with not a high dose and my heart beat was forever taking off so much that I was forever in/out of A&E. Never been near an A&E since.
I'm being sent to an endocrinologist now and I suspect he/she will be singing from the same hymn sheet as GP. So I am taking OH along for support because I'm not giving up my 'speed' !
How can they deny you a 'life-giving' hormone for that is what it is. They appear to be unaware that T3 is the only Active thyroid hormone and never test FT3 or FT4, It would seem that we have to 'put up' and 'shut up' and be grateful that we can now get 'other' prescriptions free for the actual clinical symptoms caused by not being allowed optimum levo (T4) or liothyronine (T3). Some people are intolerant to T4 no matter what they say. I am sure Endos are unaware that levo is supposed to convert to T3 and as for adjusting dose according to the whereabouts of the TSH leaves me speechless.
Most medicines are still regulated country by country.
A small number of medicines have what looks like European approval - often newer products. See here:
There was consideration given to allowing approval in one country to apply in all countries. Between, say, Germany, France and the UK that would have been acceptable. But allowing a small country like Latvia or Malta to become gateways into the whole of Europe, when they simply are not big enough countries to have comprehensive approval management regimes, was never going to be allowed.
Regulated T3 products are available from companies based in at least Germany, France, Italy and Greece (as well as the UK).
ah! it is Greece I buy from and the brand is the one the NHS used to supply I believe
So far as I am aware, the only T3/Liothyronine tablet ever supplied in the UK has been what is now known as Mercury Pharma liothyronine - previously the same product was supplied as Goldshield liothyronine, Goldshield Tertroxin, and Tertroxin by various other company names right back to Glaxo:
collection.sciencemuseum.or...
Always, though, fundamentally the same product.
(Obviously ignoring specials which have included Cytomel and other liothyronine products from the USA, Germany and even France.)
Ruby0,
Ideally you will ask for an explanation in writing from your GP so you can challenge the decision with your CCG. I've no doubt the reason for withdrawing T3 is due to cost but CCGs and GPs are not supposed to withdraw generic medicines from patients due to cost. I suspect there will be no mention of cost in a written explanation. I would copy your MP on correspondence appealing the withdrawal.
That's a great idea. If more people write some action might be taken to secure people who need T3. The Associations assumption is that all can be well on levothyroxine when a person knows they have an improvement on T3 being added or wholly prescribed.
I'd like to know if the Professionals get paid 'in kind' for only prescribing a certain medication.
Shaws,
I suspect Ruby0 will be told "there is no evidence based research demonstrating the efficacy of T3..." or some such rubbish rather than what her GP has said, that it is due to cost.
UK doctors don't get paid for results or for prescribing certain medications.
I know UK doctors don't get remuneration for prescribing. They have to follow the guidelines.
Professionals was the wrong word. I meant the Senior ones who give talks at Conferences and who state that T4 alone is to be prescribed.
In the USA doctors do get paid (in kind sometimes) for prescribing certain medictions.
• in reply toshaws
My GP told me but unofficially that it is due to the budget and that there is nothing he can do about it, but I am not sure he would repeat this if asked to explain the reasons on more official level. I think that whomever I complain they will simply reply that I don't need T3 treatment any more or something like that... I can send letters to people suggested but how long it will last? I have 8 year old who is mentally challenged and 5 year old, I had my total thyroidectomy year after I had him. I work, my husband is constantly away because of his job. He is a good man but we need money, it is very expensive giving our older son a proper care and education. I don't know what to do, I am in panic and I am afraid that I will just be wasting my precious time with all those people and that at the end it will be just another disappointment 
Your doctor doesn't need to explain as that's what they've been told and what others have said about their t3 being withdrawn.
What you can do is write to the following people and I'll give a link and one of our members have had a positive response so I think if all T3 members whose had it withdrawn should write to these people. You can say how it as helped you.
Ruby0, I find your comments confusing. On the one hand, you talk about the NHS, on the other, you say 'They have to do what state instructs them.' If you are in the UK, you would not be talking about the 'state' . And you've completely ignored suggestions of contacting the local CCG to try and get your T3 prescription back. You say you don't have much money. If you do nothing to try and get your prescription re-instated, you will have to fund your own T3 indefinitely.
• in reply toRedApple
I really don't know much about politics and I don't know exactly who makes which decision. Not all of us are equally informed you know, my life has been too hard with my son and my illness... Why I can't mention word state in UK, we live in one right? What is this if not a country or a state? How should I call them - government, politicians, they are all the same to me. Isn't NHS belonging to the government, so the state, I mean it's not private!? I am not ignoring anything, you just haven't read my replies where I explained everything. If you can't understand my position and my fears, please don't comment on my post.
• in reply to
Ruby0, you can call them however you want. They are all b....... anyway. Your story touched me deeply, my late brother was mentally challenged, I loved him so much, he died so young... And your thyroidectomy, it seems like one hard thing in your life is followed by another. I can also understand your confusion with what to do, I am confused very often myself and I don't have half of your problems. You don't have to know everything, especially about politics, non of us do except those who don't have anything else to do but to constantly read and think about it. Take care hon.
UrsaP• in reply to
Ruby0, It sounds like you are going through hell, and to be on here looking for help and getting 'negative' comments - focused on 'language' is anything but helpful. I am no expert, but I have recently had to rejoin my Dr's surgery, after a year or so elsewhere (Whilst caring for my mother) On rejoining, I had issues and delays getting them to prescribe t3 for me, maybe it is because I was already on t3 only that I have now got it and on repeat. I knew that there had been issued regarding costs and was expecting 'questions' and a possible 'fight' but TG it didn't get to that! My local Chemist was flustered trying to get the medication but has finally sourced it from a company called Thybon Henning, whom I think may be a German company, and I suspect it may be cheaper from there but I wouldn't know for sure. One thing, I was starting to get migraines and fibromyalgia on whatever 'generic' t3 I was being issued with, and was heading to Dr regarding this, but the change in manufacture, seems to have eradicated these issues. Go back to your Dr, tell them you have tried to managed on t4 only, but it is not working and that you want to go back on t3 - it is still out there. If you are struggling on the meds you might want to get a thorough test of adrenals, with the stress you are obviously living under I would not be surprised if low adrenal function was a factor, reducing the uptake of whatever meds you are on! I wish you all the best.
• in reply toUrsaP
Thank you so much for your understanding UPower. Yes, you are right I am living in constant stress for years now. I can't remember when was the last time I had some peace... And I just can't live without T3. I got some online now but I am not giving up on trying to get it back on prescription. I am repeating over and over again things I will say next time I go to my GP in my head for weeks. We will see what will happen. I really didn't need all this, obviously losing T3 caused even more stress and despair in my life.
UrsaP• in reply to
You are welcome. I have had some awful stress in my life, but from the sounds of it, nothing like what you are coping with. I have some idea of how stress can destroy health. That is the trouble with this condition/disease, having to fight for everything when you are at your lowest ebb, and especially if your cortisol is low - no 'fight' left in you!! If there is anyone in your life that could go with you to the DR and speak on your behalf, or be there to at least prompt you and back you up? It might help. With the best will in the world it is hard to recall everything you want to say, and half the time you won't be given the time to say it. Don't try to do this on your own if you don't need to. You never know the Dr might take you more seriously if there is a 'witness' there? (Might, at least, be less likely to 'fob' you off)
I was actually worrying about going to the Dr to say that I thought the T3 was causing me problems, as I thought he would try to trip me back onto t4 - when it turned out to be the brand that was the problem. I was lucky, the chemist altered the supplier before I had to do so. But we should not be scared to go to our GP's!!! Sad state of affairs.
• in reply toUrsaP
Thank you. That's a very good idea, I mean to bring someone with me to my next appointment. I usually don't manage to say all that I wanted and later I am going over and over about what I wanted to say but just didn't. My husband is often away because of his job but if he is not here, I'll bring my sister, she is much more confident than me anyway and people notice that.
UrsaP• in reply to
Great idea, and I know what you mean, I do the same! It is very hard to say all you want to say when you are living with a 'fuzzy' head all the time! I'm not surprised that your confidence is low. Not only will the health issues leave you lacking confidence in yourself, but the way you are being treated by Dr's will impact that. They can be very intimidating, and soul destroying when they don't listen and start telling you you are a 'couch potato'; depressed; hypochondriac...etc. Been there, as many have, many a time came out of GP's/Specialists in tears feeling 'depressed' through frustration! Just make sure your sister has everything written down ready to prompt you. And between you don't let them fob you off. It does help to read around every thing you can, have an idea of what you want them to do/prescribe - After all they are now asking us what we want...Recommend Dr P's book, clearly written, may give you some indicators. Probably lots of info on here, look at lots of different posts - might give you ideas of things to ask about/for.
• in reply toUrsaP
You are so right. Thank you so much for your help UPower x
I am sure that British GP/Advisor to European Board of Cardiology, Dr Malcolm Kendrick in his 2014 book 'Doctoring Data' (a brilliant read, brilliant satirical style highlighting the cons and practises that we patients are totally unaware of) mentioned a payment given to GP's for prescribing Statin meds. Obviously the payment has a specific terminology. I will look it up
Drop a line Dr Dr Kendrick and he might be able to advise
• in reply toLynneG
LynneG QoF payments on the Dept of Health website. GPs are also heavily incentivised to prescribe antidepressants, PPI's etc.
I think that's very wrong to be paid to prescribe antidepressants and PPIs as many members are ill through not getting sufficient thyroid hormones, yet are prescribed 'other' meds for the symptoms instead of a decent dose of 'other' thyroid hormones.
Agreed. It crosses the rubicon to be paid to prescribe X rather than Y (or nothing).
Prescribing should be, so far as achievable, entirely for the individual patient's benefit. Whichever medicine, whichever make, whichever dose is best for them.
You really should read
Practising GP Dr Kendricks book, 'Doctoring Data' a real eye opener - especially when it comes to how they con us over risk factors and effiacy of medication the NHS prescribes. Actual and relative risks - know the difference? Well when they are trying to get you to accept a med - relative risk is quoted. What's relative risk mean? absolutely nothing. If you read the book, you will have a totally different perception of what is really happening in health care and basically learn to watch your back.
• in reply toLynneG
LynneG I have that on my bookshelf and agree that it's an eye opener. Thank goodness for people like Dr Kendrick who says it how it is.
LynneG• in reply to
Agree totally cinnamon girl. Have you been following his blog: the real cause of Heart Disease - so informative along with a good dose of wit and sarcasm 
• in reply toLynneG
LynneG am running behind! What I really enjoy are the responses from both patients and a variety of healthcare professionals, including those from abroad. Makes for very interesting reading.
LynneG• in reply to
Yes, Cinnamon Girl, I gained a lot of info from the blog such as result of high fibrinogen, and iron, Homocysteine and benefits of nitric oxide, which still have to sort as my fibrinogen far too high - has to be lowest of normal range - so taking Serrapeptase which reduces it. keeping an eye on my homocysteine and iron and make sure I have beetroots in my smoothies. But all this byepasses GP's as all they look at is total cholesterol and BP and want to give you a statin and a BP med !! But haven't managed to keep up so a lot filed for reading when have time. The comments I will have to pay more attention to as occasionally go over my head x
LynneG• in reply to
Disgraceful isn't it. My son went to the GP for blood tests feeling bad re digestion, heartburn and bites from a plague of ticks and mites in the garden of his newly bought home. The GP suddenly said, I know what is wrong with you, you need antidepressants!!!
My son 30 yrs vows never to go to a GP again.
He had just bought his first home, come back from holiday in Iceland with his new girlfriend. And had just booked an annual ski holiday with friends from work - sounds very depressed.
QoF payments! explains it all. I have 2 friends live in the same area as my son, both on antidepressants - hmmm. Of course they go into the profession because they want to help people!
• in reply toLynneG
LynneG did the GP check for a bull's-eye rash or even suggest Lyme disease testing? Be aware that the NHS is in denial about Lyme disease and some GPs believe it doesn't exist.
Current QoF rate for each new diagnosis of depression is 10 points. One point equals £165.18. This is income for the surgery. Patients have become cash cows!!
Can't help thinking that if there are going to be incentives - there should also be disincentives.
One point for prescribing. Minus ten points if later shown to be inappropriate prescribing.
[This is obviously bitter humour rather than serious.]
• in reply tohelvella
I like your style helvella!!
LynneG• in reply to
Thank you for your concern. I knew about the bullseye rash and there wasn't one but I know from functional docs work/info such as Chris Kresser that can contract without the tell tale sign of the rash and in many cases not seen. That the test is no where near definitive and altho my son did ask for the test because I insisted, it came back negative which basically means nothing. I also remember listening to an interview in which the expert stated that Lyme is in endemic proportions, transmitted by other insects/arthropods such as midges and mites and probably could be behind most health autoimmune conditions
Unbelievable re QoF payments.
• in reply toLynneG
LynneG signs and symptoms also need to be taken into account and not just the test result. There are no guidelines in this country for Lyme disease, in fact some GPs are denying its existence. May I suggest you check out posts by a member called janeb15 whose daughter has Lyme, amongst other infections.
I was tested and diagnosed with Lyme earlier this year, no bull's-eye rash either but suspect I've had this for a good few years.
Do keep an eye on your son though.
LynneG• in reply to
Thanks for this, I will check it out and file the info. My son is 32 and was so fed up re his GP attitude he vows never to go again and just wants to forget he was ever ill. He seems to be coping ok but he had definite memory/concentration issues and had to relearn much of his job without letting anyone know he was struggling.
I can't bring it up again and his mindset is that he is fine which is positive in many respects.
However how much does he tell his mum!
I just have to be here for him with info if he needs it
Thanks so much for the link x
UrsaP• in reply to
What is wrong with these so called 'caring professionals' that they are so happy to say these 'conditions and 'diseases' don't exist!! And in the next breath will tell you that little is known about them. When people are obviously presenting with symptoms! And too many people too. Same with Adrenal fatigue, if you have ever had that you know about it, but, unless you are actually at the death stage, Dr's do not want to know! What ever happened to 'preventative interventions'. I can never understand why Dr's are willing to ignore things like the basal temperature test too - if you have a raised temperature they sit up and take notice but when it drops really low they say that is meaningless? I wonder how we know anything about medicine, if Dr's years ago took this same attitude, showing no interest, and ignored what they are seeing in front of them, we would never have cures and treatments for anything! I worry about our children and how they are, and are going to be even more mistreated, going forward, due to 'budgets'. When so much money in NHS is wasted through misdiagnosis and treatments that are never going to work, by test being half done, Dr not testing for Ft3.Ft4 antibodies etc, even when thyroid rife in families, And then there are the tests done done incorrectly. E.g - years ago I was tested for Coeliac, I had told the Dr that I had cut out wheat for several weeks, apparently you need to be eating wheat for 6 weeks before the test? I only found this out after the test, surely the Dr would have/should have known this? So what a waste of time an money...
My son has suffered terribly with eczema, for years, increasingly so since having a 'Glandular Fever type virus' 5 yrs ago - again, Dr issuing antibiotics, without thinking... He was a student doing 'A levels' in a different school - just the right circumstances for his 'tonsillitis' to be GF...but several Dr's did not even think to do a test! EVEN when he reacted so badly and was 'peeling' with a rash! I googled 'rash' and 'tonsillitis' - so obvious -but not to trained so called professionals? WE asked for the test, not realising that at that stage not possible to get a positive reading, after everything he had been given. We got him to a skin specialist who issued creams that help with rash, but not with reoccurring issues that leave him drained and utterly fatigued! Also each time flared up spent two months trying usual creams whilst trying to persuade Dr to issue the only cream that helps...more wasted prescriptions/money! Having taken him to Dr Peatfield, it seems that he, like me, has adrenal issues...now what are the chances of that! Genes do not figure in modern medicine, it would seem! I suspect that the NHS would not be in crisis if GP's were more observant, clued in, and able to see the bigger picture rather than subscribing to this 'treat the presenting symptom only' system. Is it any wonder that more and more people are losing faith in their own GP's!
Yes I am pretty sure GP's are 'paid' to issue certain drugs, and even tests! Recently mine decided,I may benefit from Statins. I refused, and interestingly didnt push it further. And the .flu jab, i refuse that too (For good reason), again. But the things I would really like, dream on!!
Lawoman, funny that on here, we are all of the same mind. If only the rest of the population could take a little interest in their own health - the service we get would have to change.
Doc's and other medical folk are revered as icons for no good reason. Dr Malcom Kendrick likens our medical system as our new religion. Yes we worship the diety and our trust well ... is often betrayed.
I saw a Rheumatologist, for nearly 20years, I never accepted any medication (someone was protecting me there I feel) but I had my blood tests annually and she took an interest in how I wanted to take responsibility for my own health and my progress, so my diet and supplements especially as I learned more. She was there for me to talk my condition through with and could refer me to an orthotist and surgeon. Before she retired she told me of a gastroenterologist in the hospital who "Would yo believe it" she said, "Thinks just like you do and believes in the Leaky Gut, just like you do. In fact, he is renowned across Europe and has won prizes for his research. And well it seems", she said rather bashfully as I had raised this 20yrs before, " That there is evidence to show that this condition happens and is very influential. I think you should have a chat with him" I nearly fell off my chair to be truthful but very appreciative of her info. She had long been a professor of Rheumatology, but retired and her replacement was the Rheumatologist who led the hospital dept. On my second annual appointment he I told him I was concerned in case I was anaemic, he declared in no way was I anaemic and I peased asked how he could tell from the blood tests (full blood count test with some abnormal low levels) His reply was, "Oh these tests we take them but rarely take any notice of most of them" Even so I was meek and mild and simpering - as my job as I saw it was to get as much info as possible from him and then do the research - not annoy him. However he turned to me when I asked him if he had heard of Low Dose Naltrexone and declared that it was best if I was discharged from Rheumatology as his job was to Manage people who were on drugs and as I refused to take any, he saw no point in seeing me. I said well, perhaps I should see a different rheumatologist and he declared - "No point, they all think like I do!
Now there's our new breed of 21st Century doctors.
OMG thats terrible. What an a...hole. Mind you i have had similar experience with Gastroenterologists too! Wanting to,put me on awful,drugs. I said not thanks! I' e a tually just switxhed to a. Ew one and he seems somewhat more receptive, so,we will see!! Bit you're right they are,so arrogant. I also have a Vestibular Problem, chronic disequilibrium. Nearly 7 years now, nowhere any better than i started! Except i have learned,to take supplements,to keep me going.
It's a joke now, it seems any chronic illness is seen as a. 'Nuisance' amd they just want,to follow them big Pharma and check a prescription across the desk, do blood tests that always come back ' normal', and fob You off if you dare to ask for anything outside of the box!
I've been told MANY times "I'm outside of the box" I dread the day when they stop Armour Thyroid . I take 1/2 tabs of T4 at the insistence of GP as T4 was on the low side and TSH was "too supresed" yda yda . I'd payed private Dr's for years, they were more than helpful, one by one the GMC picked them off Dr Skinner died now I'm left with no where to go. I've got other health problems which are not being addressed and I've no idea why might be my age! At least GP put me on vit D 3 , then I got some "funny symptoms" tingling all over my body did some research found out I also needed B vits just to make sure I had a chat with my friendly pharmacist who is very up on such stuff, e is my "back up go to man" no more tingling! The NHS isn't to be knocked it gives us a starting point ' it's the other add on's that cause problems the people with the handcuffs.
Yes I know you are right, Dolly Mixtures but when you are met with arrogance and an obvious lack of impetus to research and keep up to date, from the consultants and GPs, then you can't help blaming the NHS
I learned about the devastating effects of higher than low normal Fibrinogen levels and heart risk. I checked a bunch of my past annual blood test print outs and my fibrinogen levels were off the chart high abnormal. I mentioned to my GP at the next appointment and she scowled, looked puzzled and began to scrabble about in her desk bottom drawer - found a little book, looked up presumeably, fibrinogen and then said 'Oh I see what you mean' and that was it. She had missed it for years and then had no suggestion to make. Which did not surprise me - to be frank I only mentioned to ensure I could keep having the fibrinogen level tested without argument. But if I had not already discovered what supplement to try to bring my levels down, I would have been devastated.
My TSH has now reached 3 at my recent blood tests this October, obviously marked normal-no action by the GP. I have lots of Hypo symptoms including a dreadful tingling burning sensation as if I had been on a chilli binge in my mouth/gums/lips/tongue and burning finger ends. To be honest I cannot face the scenarios with the GP re further inadequate thyroid tests and so am digging a hole in the sand to put my head in.
I had run out of B vits some months ago and as my previous serum B12 had reached 500 I had thought could leave off for a while as all my supplements get expensive
May I ask what your friendly pharmacist explained to you about vit d3 /vit B relationship and burning/tingling - Thanks
Dr P still around if you can get to Crawley?
P.s. I mentioned LDN to my previous gastro at Barts, and he said as waving it away, we do use it, but only for drug addicts! And that there s not enough trials, evidence etec etc! Somthey know what it is!!
what a surprise!
shawsAdministrator
I think it is even more awful - the fact that you have had a thyroidectomy and wont prescribe T3 for you. I'd write to your MP and complain about the withdrawl due to cost.
• in reply toshaws
I think that it is not my GP's fault, he was probably instructed from somewhere above not to prescribe T3 anymore. They have to do what state instructs them. He probably won't risk his job because of me. I can write to my MP but what can I do in months while I wait for any of them to reply or do anything, if they do anything at all... I have to live until then, I work and I have lots of duties, I just can't get in bed saying I don't feel well and I can't do anything today. It is so sad what we have to go through. I must get T3 somehow and somewhere. I don't have much money but I can see that some on the internet are not that expensive...
Of course doctors don't want to be reprimanded and some have been for doing and prescribing as they were taught as students. Times have changed.
This post has just been put up and is very timely. You can write to them and tell your story and I hope everyone else whose T3 is being withdrawn will also write.
healthunlocked.com/thyroidu...
If you want to source your own you can put up a new Post asking for information to be sent by Private Message to you with information.
• in reply toshaws
Thank you Shaws. I decided that I am going to complain at least on some level and in the meantime I will also try to get T3 on my own, since I can't imagine how I'm going to survive if left without it. I never complained so far about anything, I don't know much about what is possible and what not, I'll sit tomorrow when I have time and see what are my options.
LynneG• in reply to
Hi Ruby, Don't panic. Remember the placebo effect - your mindset /fears/ thoughts do really influence health - Really! So be positive - you are strong - you have valid reasons. You are concerned and are going to deal with it. Telephone the 'Patient Service' if concerning a GP rather than a hospital you ring 0300 311 22 33. there is also an advocacy service if things aren't progressing as you wish tel 080 880 23000
I telephoned the patient service because my GP told me that one of my blood tests (one which I had particular interest in) had not returned with the others. As it had been many weeks, at my appointmaent I asked the GP if she could find out what had happened etc. She immediately told me that she had phoned, and that apparently the test had not been carried out by the lab as they deemed it not necessary. I was of course appalled that a lab worker no matter how senior could make suc a decision without patient history/knowledge of/ reasons for testing request. My GP's answer to me was, "Oh the labs do this all the time"
The Patient Service were very helpful and kind in approach and said that they would look into my issue with the lab having taken a few details from me.. Couldn't have been more than half hour and the phone rang. Beyond belief it was the actual lab, with my actual blood test results/requests to refer to. I can honestly say the head of the lab phoning me was seriously put out. He apologised profusely to me because the lab had missed the request for homocysteine on the form and that they couldn't now test because the blood had either been discarded but was too old anyway. And he apologised so much for the fact that it had been missed and that I would have to have blood drawn again and request another test. But he did clarify that it was not entirely the labs fault because the doctor had completed the request form wrongly and that could I ask her to ensure that for the new request she listed homocysteine on the right hand side of the form.
He then went on to say that under no circumstances would the labs overide a doctor's request for any reason and that I had been misinformed!! He was very upset.
Obviously my GP had lied to me. Life is too short - I never approached her with this or the practice manager altho I was tempted. I just makesure that I never make an appointment with her. I am sure this stuff goes on all the time. These doctors just don't reckon that their patients will follow anything up. Well they reckoned wronly with me
I also used the service when my 80yrs mother inlaw was told by her GP that she could no longer have prescribed the test sticks/papers that are used in the glucometer, to test her blood sugar. These had been prescribed to her for a few years since developing Type11 diabetes. She was told it was no longer policy to prescribe unless the patient used insulin. Now the point of testing sugar levels is to be knowledgeable about your diets influence on blood sugar and so not need insulin. My aged motherinlaw was very upset, she now felt loss of control understandibly. I was fuming, what an unproductive step backwards. I thought this through first and then phoned the Service to ask if there was a new National Policy and that GP's had been instructed to no longer prescribe. They phoned back - the same day - probably within the hour and told me that there was definitely no national policy and that I should take it up with the practice manager as this seemed to be a Practice policy. (possibly to save money for the practice)
I think it would be best to find out from the Service if this is a National Policy/when it was brought in/ and advice given re altering existing patients medication. And any recourse/action you can take. Any other patient contacts they have received caused by the new policy. And how can they help you - advocacy etc. All this can be achieved hopefully the same day - Today. Today you will be on your road moving forward. Good luck. Please let us know how you get on. Tel no.s at least a year old - you may have to google if have changed x
Lynne G, the labs often don't do requested blood tests. This has happened to me on most occasions sadly with one thing or another. Recently my consultant requested a vit d test, the labs response was "this has been done the previous year" beggars belief really and so frustrating for all ...
Really! Yes it does beggar belief - infact I cannot believe it. It goes against all legal rights that a patient has, for a lab with no access to patient info/history/ reasons for request, to inform a doctor that they are not willing to do the test! Utterly unbelievable. Considering my experience - who is giving you this info - the lab direct or your GP. Did you just accept what your GP told you without enquiring further? GP practices are permanently on cost cutting exercises - I wouldn't trust such statements if given to me as indeed I did not and so did further research. GP's do not expect their patients to act for themselves and so think that they can say what they like to make life easier for themselves and their practice policy.
if I had believed the GP, I would have then explained my horror at such a suggestion that a lab worker with no info could overturn a GP request. I would then request that the GP, take this onboard and firmly take a stance with the lab, that reasons were evident for the request and she/he would not tolerate such interference and time wasting. Let alone further discomfort for the patient re having to have blood drawn again.
It is so incredible that, no I cannot believe it unless this is specific to vit D (tests which could be obtained through a thumb prick at Boots at one time, probably still are available) But still shocking and I feel it must be the GP Practice policy and nothing to do with the lab.
I so far have had vit D tested every 6 months along with my other blood tests. I wish to know following the summer if I should supplement through the winter months - no lab has refused that GP request.
Do labs have access to confidential patient information and discriminate whether the GP request is valid (based on previous test results) It is stretching belief too far that every GP blood analysis request goes before the senior lab manager to then review the patient record and question the soundness and validity of the request. They don't have the time or work within that legal framework. That is why you have to have your GP authorize any patient test. The GP is the filtering body.
I re read your post and notice it was a consultant request - obv working within the hospital system and so easier communication between depts. Perhaps the Consultant was picking the brains of the haematologist for advice re your tests/tests possible, and perhaps the vit D test came up in the conversation and the lab was asking the consultant if the test was really necessary because it had been taken previously. It was then still up to the consultant to put across to the lab that the test was necessary and he required it.
It was still your consultants decision and responsibility, surely?
If not then we are treated by an even more insidious NHS than I believed possible.
I only mentioned in the post to illustrate to Ruby how good the Patient Service are at accessing info for you (that the Service is not just about complaints but finding facts out for you - and very efficient they were too - what are the chances that I would ever have had access to speak to the lab dealing with my tests under my own steam? And all within the space of an hour)
Ive seen it (the reusal) typed on the blood test results .
Also my gp often tries writing on my blood request form "investigating an unusual disease"
Gp finds it v frustrating and makes them angry
Ive recently moved so will be using diff lab, we'll see hiw i get on with them!
I question the ethics of the blood draw which requires informed consent. If your sample is not tested for the things you expect, then it was obtained without full consent.
If the lab wishes to impose some sort of cascade (only test FT4 if TSH is way out, only test FT3 if FT4 is way out - or something like that) then you should be informed before the blood draw.
Most especially if a blood draw is done and none of the tests are done - as might have been the case for your vitamin D test.
Im going to see if living in diff area helps. If not im not taking it lying down anymore!
• in reply toLynneG
Thank you. As I said I am very inexperienced in all of this, I never complained so far. I'm just waiting for some spare time to sit in peace and see what my options. Thank you again x
LynneG• in reply to
Ruby, don't see the Patient Service as complaining - altho I am sure that it can be used as such. Look at the service as helping you find out the facts - is it a national policy or a postcode lottery or just an individual GP practice decision re cost cutting. And they will be able to help describe to you the criteria for existing patients if indeed it is a new National Policy. You couldn't complain successfully anyway unless you have the full facts to support you
mrsm49• in reply to
Lots of people especially those without a thyroid are still being prescribed t3 on the NHS (i get this info from another site i belong to) It seems a postcode lottery at the moment but it seems to me that without a thyroid you have a very good argument to keep your t3, after all yr thyroid would have been producing t3 if you had one and some people have issues adversely affecting conversion of t4 (levo) to t3 . I'm about to enter into the fray and ask for t3 myself after receiving a letter from an nhs endo suggesting it may help.
If all else fails you can buy over the counter in greek pharmacies for just over 1 euro a packet (think that's the cheapest option obvs only if you happen to be on holiday or have a friend that's on holiday there) or from certain other european countries if you have a prescription and some people purchase online but you'd have to ask for people to pm you the details.
Good luck!
• in reply tomrsm49
Thank you. Yes, I can see that some people are still getting T3 on prescription normally, it's just like a lottery as you said, or maybe it depends where somebody is located, I can't really understand how they have a money for some and for others they don't. I won't be going abroad any time soon, so I suppose I will have to order online.
RedAppleAdministrator
ruby0, I agree with Clutter, ask for an explanation in writing from your GP so you can challenge the decision with your CCG. Where are you located? Maybe you could get together with others in the same CCG area to challenge this decision.
It might be worth checking the structure of the CCGs. My CCG doesn't support the prescribing of T3. However, there is a larger "CCG of CCGs" and they do support it. The local guidelines only apply where the larger group does not have a policy.
I think it was the royal college of physicians that gp's and many endo consultants quote all the time as an excuse to not give T3. it was their guidelines and the cost that stopped anyone getting a decent T3 prescription on the NHS. All of us who are non sensitive to T4 and who can take massive doses of a synthetic T4 drug before you get any visible difference in symptoms are simply left to suffer! It is like many other drugs and practices in the NHS these days that unless the 'numbers' add up, you don't get given anything to make you feel better! I asked my consultant if I had to commit suicide before he would understand that I was really really very very unwell. He refused to answer and just said, it's not your thyroid!! Needless to say I gave up with him and went and got myself my own drugs, T3 and my minimal prescription T4, just about coping, but feel like I will never return to the same health I had before they took my thyroid out. They shouldn't perform these operations if they don't have the skills/money/understanding of what we go through to support in essence the victims of the NHS thyroid treatment programme. Supplying yourself with enough T3 isn't that expensive, it's way better than suffering. Your health is way too important, if you're getting nowhere with the docs like many of us do, go treat yourself! My surgeon told me that he believes we're all very good at telling if we're under or over active, but his hands were tied to treat me, so he suggested I treat myself too! What a mess huh! good luck with it all!
• in reply toKezzab
Thank you so much. Yes, you are right my health is what is important, I have to be well for me and for my children no matter what doctors think or are instructed to do. I'll try to get T3 on my own online. Thank you for your support x
This really makes me uncomfortable, too. Obviously this woman is in big distress and don't know what to do and she is getting comment like this from an admin. It is so unwelcoming.
• in reply to
Thanks to all of you good people for support and understanding.
Uni pharma t3 is the real deal stuff and it astounds me just how stupid some of these doctors think we actually are. I have first hand experience at the moment how they are trying everything to wriggle out of how they neglected me medically. They resort to low blows even and twist it back around onto you. Despite all this still no referral to an endo because my hypothyroidism is supposedly non existent! Because I eventually had to self medicate and my levels are high up the range now. You need t3 and I would take it as high up as you can you make sure they give you it. Do as suggested all in writing and keep copies. I plan on writing to my doctors with my correspondence to the consultant(who is a diabetic specialist not an endo). He has absolutely no idea about the thyroid and he has sent totally innacurate info to my GPs and they need to have copies of my responses.
• in reply to
Thank you katiekatie. Yes, I ordered Uni Pharma. About NHS I found several places where I will send my complaint but I have to stay well in the meantime and although I will try to fight I don't have high hopes that I will win
• in reply to
Seems some people are still getting it prescribed but others are not. Where are you?
• in reply to
LIverpool.
• in reply to
I said it has to do a lot with where you are. But it seems we can't talk about it since my reply to you was deleted.
• in reply to
Something odd happeneing because just now I replied to you and HU told me your post had been deleted. When I looked again it was there but it said Ruby0 had posted it! Think there must be a gremlin somewhere
• in reply to
I replied to Haribobear but my reply disappeared as well... I don't know why.
• in reply to
I saw it. I live in a working class neighborhood, we are not exactly poor as my husband works hard to provide for our family (my salary is not much) but we don't have much money either.
• in reply to
The withdrawal of NHS T3 doesn't have anything to do with whether or not you personally are poor or rich.
• in reply to
No me neither it's like trying to swim in mud sometimes I know. My dad died suddenly due to doctors negligence, they treated him like a hypochondriac despite him repeatedly going to see various emergency doctors with severe pains in his stomach, also his own gp. Even on the day he suddenly died they questioned that he couldn't be that ill if he was walking around. 5 hours later he dropped from a massive internal bleed he had an obstruction. They still made excuses about that. He was only 54 was such a shock to us all. You have to do what you think is right to make yourself better and go with that x
• in reply to
Katiekatie I am so sorry to hear about your dad. My God he was so young! And what is worse they are never responsible! I never heard that any doctor is held responsible when people die because of their negligence, they always cover up that. This is tragic and really makes me sad. Take care hon xx
• in reply to
Ah thanks. It's done now it's just I have major trust issues with any of them now. They don't always want what's best for the patient that's for sure, so many other factors come into it and money is a biggie. Take care also x
• in reply to
My friend died from burst of pancreas few years ago on Christmas. Because it was a holiday doctors didn't check her properly, they just kept her in hospital for further examination after holiday is over and while there she died. Her husband and 2 grown children were devastated, they tried to sue the hospital and doctors responsible but of course case was dismissed due to "lack of evidence" She was only 52...
• in reply to
Oh my God, that's terrible. Poor woman...
• in reply to
Thank you. I replied to you already but my reply was deleted, I don't know why. I simply said that it was tragic and we all and her family especially have to live with this injustice for the rest of our lives
Hi ruby, did you get any positive replies reference sourcing t3 privately. Thanks for your help. Alan
• in reply toalan1
I did and I already ordered.
Thank you pugsley. Until now I realized that this forum is full of wonderful and compassionate people who tried to help me and support me in all possible ways. It's like being among family or friends. Although I don't have much confidence I am not put out by one person who was mean to me.
Thank you
Sorry to hear that sparky. I take 30 mcg of T3 and I also can't figure our how this tiny amount makes difference between life and something that really can't be considered as it. Yes, I started taking T3 that I ordered on my own, it's coming in 25 mcg tablets so now I take 1 tablet and 1/4. I am same as I was on NHS T3 and that's good, since noting changed. I only have to get a new pill cutter, mine is old and not very sharp. Hope you will find your solution, doctors are making our lives miserable we should not allow that and should do everything to keep on with our lives as normally as possible x
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