Many patients are denied a free T3 test with cost being given as the reason for refusal. I submitted a Freedom of Information Request to my local NHS Trust in NW London asking for the net cost of TSH, fT3 and fT4 assays. The net cost of a free T3 assay is 92p!
I’ve put a copy my FOI request here ibshypo.com/index.php/cost-... . If you are denied a free T3 test I suggest you submit a polite complaint pointing out the trivial cost of the assay and say that it is needed to monitor your treatment. If we can get fT3 assays carried out, we will stand more chance of getting T3 medication and there will be fT3 data available for future studies.
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jimh111
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Interesting post showing a very sad & false NHS saving, when it costs us so much more and not just in the monetary sense.
And to the uninitiated this would possibly be viewed as just another penny pinching exercise, but I think their reluctance lies more in the attitude that T3 medication should not be required in addition to Levo, so the testing of it must not be required either.
That, and doctors don’t wish to expose their incompetence when they can’t understand the results. 😁
I totally agree with you radd -but I have said for a long time, I have no faith in Professionals these days. They all lie in my opinion especially with chronic health.
I think the only reason I am allowed to stay on T3 is because I reported my Endo and although they took her side (ha ha surprise), I have had no problems since, so I never ask for my T3 to be checked. My theory is then, if they do not check it, they can't take me off the T3 - that is wrong, but I live in fear which is sad.
It is disgusting though how we are treated and we have to practically beg for tests and medication reviews.
Private companies are in business to make money unfortunately! So we’re stuck really. We should not have to rely on private companies... no choice though.
For the private companies it will be quite a bit more expensive, as well. Two sets of postage, admin to handle our payments, pack our box up and deal with queries, nice coloured packaging, commercial lancets and individual packets of sterile wipes, etc.
Come to think of it I'm not sue this NHS cost will include the phlebotomy side of it.
I was gong to say Miss Grace... I would have estimate nearer £1.50 allowing for the technicicans time, if however if was included in a group of fT3,fT4,TSH that would negate most of the cost.
I suspect the 'cost' they are referring to is the Thyronine, no test = no Thyronine.
My GP did request the test some time ago, but the Lab blocked it with the deceitful tactic of creating a 'query about the need for free T3' that they failed to send to the doctor for 30days by which time the blood was discarded.
I actually saw my gp write on the blood request form, at my request, for fT3. No surprise, the lab chose not to do it. It's not always the gps at fault unfortunately
This is very true. Gp’s can be more a victim of the system and computerisation than the public understand. I think a great many would like to ‘help’ but they’re bound and gagged. I think another poster had more knowledge about the machines they use at the labs. They test TSH and only if that is out of range will it then test for FT4 and then only if that is wonky will it go on to test FT3.
I think it’s not being tested because ‘they’ don’t want to entertain the idea of prescribing T3, nothing to to with the cost of the test but the cost of the prescription.
I am one of the lucky ones. My GP has always tested FT3. However she doesn’t quite understand the importance of the result. And so within the NHS it’s been useless but it has given me a clear history of low T3 since 2014 and so I’ve been reassured that this is the problem in my case (and not my mismanagement from taking T4)
It’s going to be a long road to getting T3 on NHS but at least I have history.
( I now taken T3, prescribes by a private Endo and so I will build up a new history)
Remember these are the costs of running the assays, how much the NHS pays the company to pop the blood into the machine and give the readout. It doesn't include the cost of taking the blood and the doctor's time. Thus, in London it costs 92p extra to run the fT3 test.
I'm raising this point now because in the next few weeks I will complete the 'subnormal TSH secretion' topic on the website. This will show why patients with normal TSH and low normal fT3, fT4 need T3 to get well. I've seen over 50 such patients on the forums in the last year or so. I think it affects a lot of patients. If we can get more doctors to run TSH, fT3, fT4 we will be able to identify these patients and make sure they get a liothyronine prescritption.
As some of you have pointed out the main reason for refusing the fT3 assay is to avoid prescribing liothyronine but cost is used as an excuse.
Has anyone done research of the estimated costs to society and the NHS of people being kept ill because of not being treating properly for thyroid problems?
It seems very likely that the cost of treating, looking after, providing disability and unemployment benefits etc etc would turn out to be far less than the cost of proper management of our condition. It would also include treatment of connected problems usually diagnosed as separate issues - both physical and mental illnesses.
I don't know of any studies, it would involve admitting the current treatment doesn't work. However, I'm very much getting the impression that attitudes are changing.
Thanks for this jimh111. I’m recently diagnosed with DIO2 gene fault and on asking my GP for referral to an Endo we discussed what I was hoping the outcome would be. I said that I was hoping for a little T3 to be added to my Levo regime. She raised her eyebrows, produced an enormously chunky book (a GP’s bible?) and showed me a little paragraph which states something about there being no evidence that T3 is of any benefit.
I’ve since seen the Endo who has prescribed T3. Should be interesting when I next see the GP.
The GPs are told there is no evidence. Endocrinologists are beginning to change a bit but it takes quite a while for guidance (books) to be changed and GPs to get hold of new books.
My Endo, told me that there was no evidence too and that it is very dangerous, blah blah blah, all the usual crap. Since I reported her, she evidently now refuses to see anyone who has a T3 recommendation and or review especially me (I wonder why).
They did send me another appointment to see someone else, as it was "In my best interest" - I don't think so. Needless to say, I refused it.
Prior to me reporting her, she did loads of tests to prove her theory regarding the T3 being harmful and she failed on everyone including the bone density test. Even asked me if I had heart problems and she was surprised I had not, even accused my husband of being an enabler!
I 'm glad you aren't "serving time"! .. Tell your Endo that you are acquainted with a Lady who takes 200mcg of T3 per day, plus 2 grains of Armour, and at age 80 is still alive and functional!
Well done Gingersnap202 - you are an inspiration to us all,
I am 57, been on T4 all my life - 200 mcg. Was taken off that dose in my 30's and reduced to 75 mcg (Stupid GP)- so have had a whole rake of problems, but now, back on what I call my natural dose of 200 mcg of T4 and 20 mcg of T3 (Lithyronine).
A lack of evidence to prove the treatment works is not proof that it doesn't work. To my knowledge, to date nobody has done a study where they conduct a full thyroid panel (including FT3) on the subjects at the start of the study and treat the subjects who are not in the upper 25% of the range with enough Liothyronine to bring the FT3 numbers up -- and then compare before and after hypothyroid symptoms. In clinical trials, they love to go with a "standard dose" for the drug being used as an intervention. For example, they might compare two dosage levels. As those of us here know, it just isn't that simple. What is the "standard dose" of insulin? They have no problem adjusting insulin dosage to match blood glucose levels. Why not thyroid hormones, too?
I agree. The Endo who I saw, said that "there was no evidence to suggest it works, it was a waste of money and that the money could be spent on more worthy causes and not the minority!" Hence the reason for my anger. I had already been on the T3 meds for over 12 years (not sure exactly) and felt as well as I could on them - is that not enough proof?
They go on about saving money, but they waste so much. Surely if they sorted this T3 business out once and for all, by sorting the pharmaceutical companies out, then we would and should be looked after and less trips to the Dr's - saving money in the long run - common sense is not in their medical knowledge/degree!
Good grief! ... Your doctor is so uninformed! ... T3 is the only thing that the body can use straight-away! As most here know, T4 has to converted to T3 before the body can actually make use of it. ... I actually wish the damned blood tests had never been initiated! Old Docs used to give you Armour thyroid and increase until you felt better. Simple and effective!
I had a big argument with the nhs lab and the GO and the endocrinologists about this. The lab eventually admitted it was just 92p here too but they could not afford to scale that up for everybody for every TFT and the endocrinologists all challenge the clinical value of the test not the cost.... without going into detail here I’m now making formal complaint via PALS and the CCG and when they make their rebuttal I will take it to the ombudsman. The evidence that you cannot monitor thyroid status without at least a triple TFT is out there it just needs marshalling. TSH is the one legged stool of thyroid testing.
I went through PALS because they kept missing the fT3 even though I had an agreement with the biochemist that it should be done. What annoyed me was that if they decline to do the fT3 they should contact the GP and tell them, they don't even bother to put an explanation on the form they return. Another problem is that the assay machine is programmed not to run fT3 for GPs unless hyperthyroidism is suspected. So, they have to manually override the machine settings. Endocrinologists get their assays done at the hospital lab whereas GP blood tests are outsourced to The Doctors' Laboratory who are told to refuse fT3. When I have time I will put in a freedom of information request for a copy of the computer code used by the assay machines.
In my case I had raging hyperthyroidism I was so hyper I doubt if my GP even needed to test - in olden days I bet the doctor would have known without any tests - yet my T3 still wasn’t tested.
I started doing my own private tests because I was incensed that the hospital would actually offer me radioactive iodine without anyone ever having tested my T3.
That might not be logical and there may be no need to test T3 before giving rai but I still felt that without knowing what was going on with my T3 none of the endos/ assistant endos I saw had a full picture of my thyroid - even if they didn’t need it. I just felt I wanted to know.
It seems unethical that if a GP requests the test for FT3, someone at a lab, who has never met the patient, knows nothing of their symptoms or situation or the many reasons why the GP may be requesting the test can refuse! What kind of system is that???
This could result in someone becoming seriously ill. We know from this forum that all kinds of results can come out of the three TFTs - some of them seeming to defy orthodox medical thinking due to other issues affecting the thyroid.
And how many people out there have central hypothyroidism where TSH is normally in range? It might not be that 'rare' after all. It really does anger me that labs have so much power over GPs and GPs seem impotent (or perhaps collude as it's an easy excuse for them to say that the labs refused to test further than TSH). Meanwhile all those with hypo symptoms with TSH in range are deemed hypochondriacs, psychologically damaged or diagnosed with ME/CFS.
Lots of patients have what I call subnormal TSH levels, not really central hypothyroidism but a TSH lower than it should be. I believe this causes a difficult to treat form of hypothyroidism. The effects are more profound than just lower than average hormone levels. I'm just about to start writing this up and it should be on the website within a couple weeks.
Thank you jimh111, for investigating. However, nothing surprises me these days.
What they don't know they make up and as said previously, I have no faith in GP/Professionals. They are quick to judge you, but not there to truly help you.
I still can't believe that a tablet such as T3 can radically increase in price without investigation, it is pure greed and down to money rather than helping those who need help.
What angers me most, is that in this day and age, we should not have to practically beg for tests to be done and meds to be given for a chronic condition.
Take care
Amazing thank you jimh111 what a revelation I have printed it out for future reference.
You are right in thinking that if all of us were tested it would put a very different slant on the prescribing of T3.
For me, the essential scandal is that the pathology lab can take it upon itself unilaterally to refuse to do tests that a doctor requests, without any knowledge of the patient other than their sex, age and therapy. Why the authorities cannot see that this defies the ethics of medicine (the doctor is the medically qualified person, not the biochemist) I cannot understand. The biochemists clearly hold the GP in contempt as ignorant buffoons as regards test requesting. It seems that by default the laboratory can plead poverty as the reason why it won't perform certain tests, wrapped up in the spurious argument that the test in their opinion is unnecessary. Their opinion should not count. They treat their clients as robots whose condition is determined by the placement in the ranges of the tests they will perform ie TSH. This is factory medicine, based on false premises and categorization (the ultimate crime of diagnosis).
That is exactly my point; their role is to facilitate access to the data GPs require to aid their diagnosis and treatment of their patients, not to block it or act on their own cognisance. I don't think it's a new problem though, or even limited to lab testing - when my then GP gave in to my request for T3 some 11 years ago she immediately panicked and rescinded my prescription because she'd sought advice from the hospital's biochemist who told her that T3 was never to be routinely prescribed for hypothyroidism, and never outside the ITU - when what he should have said was that he was neither a GP nor an Endocrinologist and therefore it was outside his professional remit to pronounce on such matters.
I find it very frustrating. The biochemists have a valuable role to play but since the ACB and BTA published their guidance on thyroid testing ( btf-thyroid.org/images/docu... ) the labs have tended to override the GPs. Worse still the decision is automated or rule based such that the biochemist doesn't review the results, rather a computer or junior makes the decision or an external lab is instructed to follow rules. Not all biochemists are bad, a speaker at a recent Cambridge BTF meeting had an enlightened approach.
I ran into the T3 test nonsense a couple of days ago. I had an annual physical (nothing wrong, I just showed up since they told me it was due). Right at the end the doc said that we should do some blood tests and suggested A1c, Potassium and a few other things I know nothing about. When he ran out of ideas I suggested "How about some thyroid stuff" (since that is the only one I am interested in) . "Oh, yes", he said "I'll put you down for TSH and T4." I quietly asked him if he could throw in FT3 for me, and he balked! "Oh I don't know", he said, "I have to answer as to why I request these tests and there are ATA guidelines I have to follow." I felt it was wrong to say absolutely nothing so I politely told him the guidelines were wrong and rather than have him getting in there and answering for my thyroid meds situation I told him to forget the thyroid tests, just leave it alone, everything was OK. He was very happy to do that (i.e. nothing). Well, that was my chance to get TSH, FT4 and FT3 for free, never mind I get them all done privately anyway, it would have just been a bit simpler.
Thx so much 4 doing this. I will research Yr site soon.Just had what was supposed 2 b "full thyroid panel", ft3 and thyroglobulin missed off. Ft3 because GP said its not done if tsh and t4 "normal", and thyroglobulin because the TPO is more specific.
What a joke. Took me half hourtof going thro my medical records with receptionist to even get her to commit to asking GP why.
Don't think I can go on much longer. Got ME CFS diagnosis, but all on offer is talking therapy.
Thyroglobulin is not are useful as TPO. In any event they only show if your hypothyrodism is likely to be due to autoimmune attack, it doesn't alter the therapy. The labs won't do fT3 for GPs because the endocrinologists tell them not to. It's very annoying because fT4 assay is cheap (for hospitals, private tests rip off patients). The fault lies with the endocrinologists not the GP.
thanks very much for this. very informative and useful. I think I'm going to do the MMH (the exeter place) to get a T3 because then I've got everything, and its all current. It was just because other information mentioned this that I thought it was something highly relevant.
I manage because I have a source of thyroid sweetbreads (very tasty fried in butter and spread on toast) and these just about keep my head above water. GP got me to ditch them over last 6m and I have really gone downhill - of course the amounts of T3 and T4 in these is totally at the whim of the gods, and sometimes I felt really good and sometimes not so much. It was better when I could afford Thyrogold (dear old Dr Barry had gotten me to the point where I could dose on symptoms) but Brexit and crackdowns with Royal Mail/Customs charges have put this out of my reach financially.
disneylander and lesleyfromkent are both me- i seem to have done something weird to computer and answers come from either place with no reference to what I intend!
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