One thing I’d like to clear up here. We live in a postcode lottery in the U.K.. where the laboratory to which a GP sends their blood test to may not test ft3. The GP can request all he/she likes but it’s the labs that control it. I’m extremely lucky that I live in an area where they do test BOTH T4 & T3 so it is wrong to say NHS refuses to do it.
I know most of us do not like the treatment we have received on the NHS for our thyroid condition, but please don’t give our false information. I for one am glad we have the NHS even if they don’t always get it right!
This is from thyroid uk site-
‘Be aware, though, that your GP may ask for FT3 to be done but the lab that the test form goes to may refuse to do it. You could try asking if your GP will add something to the test form to say "Thyroid function test including FT3 & FT4, regardless of the TSH reading." as this may help.’
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Hi. Yes, you’re right, it is a postcode lottery. My former GP requested a T3 test but the lab refused to do it. Now that I’m on T3, my current GP and the endocrinologist have to put on every request, “please test the T3 because the patient is taking T3”. I think it’s really bad that a lab can over-rule a GP!
The only reason they’re testing mine is because I’m taking T3. They wouldn’t test it when the GP wanted to find out if I had a problem converting, and I’d been ill for 23 years on levo.
I have no idea, hence the question mark but I suspect there could be. Just look at the number of folk on this forum who claim mis, mal, or non ( choose which ever prefix you wish) treatment by apparent thyroid specialists. I find it very difficult to believe that all the dissatisfied customers can be attributed to poor knowledge or training alone, withing the field of medicine. Take your issue and I have read several accounts detailing the same. 'Someone' or a 'body' is controlling testing of T3 in a number of labs in UK. This must be a direct manipulation and I would guess little to do with a lack of understanding of thyroid disease. The hoops we have to jump through and obstacles we need to navigate in an attempt to secure effective assessment, treatment and monitoring is jaw dropping. We are sick people and it is not difficult to believe that some powerful influence is keeping us in this state. The list of resistance is endless. insufficient lab tests, not high enough TSH to be considered symptomatic, little or no range of treatment and a one size fits all mentality, self secured medication that is expensive or difficult to source, no or little consideration by so called professionals of the necessary complementary building blocks to assist thyroid function, little associated research activity. And so on. Historically, pharmaceutical companies have been involved in major atrocities. Thalidomide and more recently the pregnancy test Primodos responsible for horrific birth defects are two high profile ones that spring to mind. I would therefore be extremely sceptical at the pharmaceutical industry ever having my health interests at heart.
I have just bought some Levo in Barcelona - I walked into a pharmacy, said “queiro levothyoxina 50mcg por favor” and they sold me 100 tablets for less than £2.50!!!!
How can one country see it as a drug that can be bought like moderate painkillers or cold meds and ours treat it like recreational heroine?! Anyone needing it is to be treated with extreme suspicion and contempt.
It is ridiculous, something v off about thyroid problems and how they are assessed and treated in the U.K.
They do, except when being lowered by docs based on paper results and not my health. 😢 Never had reason to question before old doc retired and had to face dreaded ‘register’!
Read somewhere that NICE guidelines stipulate T3 treatment not to be used with T4...maybe that’s what influences some practices? Not so NICE then!
While I seem to fall in the category that only needs T4 treatment, I do agree that if T3 treatment needed then it should be given. We may not have gone to Uni and trained as doctors but we know our bodies.
I’m becoming aware of that. I’ve been on T4 treatment and managed well for 52 years. It’s only with this issue of mismanagement that I have come to appreciate how many are suffering consequences of T3 issues.
The labs do what they are instructed to do by the local CCG or hospital. If my doctor requests an fT3 and it is not done I submit a formal complaint. It is generally the local biochemist along with the endocrinologist who decides this policy. Certainly in the NW London Hospitals area there is code in the machine that decides when fT3 is run, untouched by human hands! There is a facitlity to override this but it needs a determined patient and GP to knock sense into them. Although endocrinologists and the BTA state that fT3 is not of any use I have yet to find one of these endocrinologists who do not run fT3 for their private patients. I submitted a FOI request, the cost of the fT3 assay is £0-92.
I’m amazed more FOI requests haven’t been submitted to the NHS and published on this site. It’s extremely easy to submit the same FOI request to dozens of CCGs across the country using the web site ‘What do they know’. It would be really interesting to know what guidelines different Hospitals follow. A sample question could be, ‘can you confirm that endocrinologist consider NICE guidelines?’ The possibilities are endless!
The decision not to test fT3 is based on the fact that in primary hypothyroidism TSH rises and fT4 falls before fT3 falls. Thus, fT3 is not much use for diagnosing primary hypothyroidism. It is invaluable for diagnosing isolated thyrotropin deficiency and any other abnormalaties in the thyroid profile. It's also useful if the patient needs high dose hormone treatment to overcome resistance to thyroid hormone. Unfortunately the endocrinologists and biochemists fail to recognise these other forms of hypothyroidism and they are the people who instruct the lab not to run fT3. The answer is to make a formal complaint every time the fT3 assay is not run but patients always find an excuse for not doing so.
Laughable as compared to what they pay for T3 ( or don’t in many cases now) my area in the East Midlands routinely test for it. But this backs up my point that it is available on the NHS even if sometimes you have to shout!
I think that's precisely the point, it could open up the flood gates to more and more people taking overpriced T3. Bet docs don't have a problem testing FT3 and writing prescriptions for T3 on their private books. The NHS is failing normal thyroid patients who don't get well on levothyroxine, both female and male. Why should ill people have to shout the loudest?
Everyone should get what makes them well and relief of their clinical symptoms. That is the aim after all but we realise they now know no clinical symptoms at all. All of their 'expertise' is upon the TSH alone and so they ajdust levo up/down according to test result.
They also stopped prescribing NDT which used to be so common and also healed many - now have to self-source. Then T3. T4 is also restricted when they tell patients you can not have an increase because your TSH is low and you will get a heart attack or osteo when the truth is we may if undermedicated.
Yes, everyone should get what makes them well. My NHS GP is hopeless with clinical symptoms. Treatment by numbers only in my surgery. They don't seem to use any discretion when interpreting the numbers either. How can someone be poorly in need of a dose increase when TSH is 5.01 (range 0.4-5.0) but stated to be well when TSH is 4.95!! "No further action you're well. Everything thyroid is in order and normal". It doesn't make any sense when someone presents with so many hypothyroidism symptoms.
Interesting you should say this. I have private medical cover in Saudi and have never ever been refused a FT3 test. So refusal to test can't be down to ignorance every time! Having said this the Endo's still know diddly squat as to what to do with the T3 test.
Seems a bit extreme unless you work there? Plus if they can't interpret the result then I would say it's pointless. Apart from getting the result for yourself of course. I'm sure private patients in the UK get FT3 testing and interpretation but they're paying for it.
I do work there. One would hope if folk in UK are fortunate enough to be offered a FT3 test that it will be interpreted appropriately and acted upon. Not sure this is always the case though.
That's good. I was imagining you frantically trying to get to the surgery from Spain for an early morning test! I think you're right, the interpretation of the test is generally poor in most countries. But then again so is the advice for when to actually get FT3 tested i.e. time of day, how long to wait after a dose, etc. It seems a bit of a black art to be honest. I can understand why a lot of doctors prefer people to take T4 only as FT3 is more stable. Unfortunately I'm not in the T4 camp.
The lab is part of the NHS .Your support of the NHS regardless of the pistcode lottery is part of the problem.As one reporter put it " The NHS is morphing into a state religion- one that needs more heretics and fewer acolytes".
We have fewer doctors and beds per 1000 population than other rich countries.For illnesses causing death the NHS is a below average performer as it is for illnesses that cause death but where medical intervention should be able to save lives. There is a higher mortality rate for babies born in the UK.
As readers know ,we are good at diabetes!
There is a real need for a grown up all party debate on NHS funding and organisation but we will not get it.Too many acolytes.
Other countries do better with a social- insurance model.In Switzerland everyone has to have a health insurance policy but those on low incomes are subsidised by the state to buy one.The risks are pooled.Insurers that take on a larger than average share of the elderly are reimbursed by other insurers. Similarly in Germany and Holland and docs and hospitals compete to provide services to the insurers.We have a nationalised monopoly health service that is failing in many areas and will get worse with the ageing population.
if we had an insurance model it wouldn't take long for people to die through lack of treatment. Anyone who is uninsurable or anyone who is forced to use food banks or has no roof over their head or whose benefits have been taken away for a few weeks or months or even years won't be able to afford insurance on top of everything else.
Anyone who mentions an insurance system forgets that a large proportion of people don't have the cash to spare to pay the premiums.
Edit : When the NHS goes we won't get a compassionate system in exchange, we'll get a system that allows the US healthcare vultures to asset strip then screw the population. Some people will invest and make lots of money, but the majority will lose out big time.
Your edit may be right because the Government is quietly privatising bits without going back to first principles to start again.What was needed in 1946 is not right for now.The poor can be subsidised as in Switzerland. The rich would pay more.
Great on paper...but in practice? The psyche of this country is not the same as the Swiss and never will be. The prevalence of the "I'm alright Jack" mentality and the misinformed attitude of "why should I pay for someone to sit on their arse" is testament to how the social conscience of this country is being smothered and gradually snuffed out by a society that values profit and financial growth above all else. The NHS is failing not because it can't be made to work...but because a functioning NHS is not in the interests of profit and financial growth. A functioning NHS would put calls for privatisation (and all the lovely profit and back handers that go with it) to bed. Far better for those who want to see a privatised health service, to bring a public one to its knees and then cry "we need an alternative! This isn't working!"
"docs and hospitals compete to provide services to the insurers."
So the insurers push and push to get the best price. The docs and hospitals then "compete" to see who can do it for the lowest price.
"We have a nationalised monopoly health service that is failing in many areas"
Large swathes of NHS services are now put out to private tender. It can hardly be called nationalised anymore. And it is exactly these service providers "competing to see who can do it the cheapest" that is leading to the NHS "failing in many areas".
It's fairly logical when you put profit before patients that it's gonna fail. In terms of patient outcomes and because the short term savings that "healthy competition" engenders are not only short term...but short sighted as the can is simply being kicked down the road and storing up critical problems down the line.
Clearly privatisation is demonstrably not the answer.
Let's NOT do a 92p test. Let's save that 92p. Instead, let's tell the patient that they are depressed and prescribe lifelong antidepressants, (that'll get rid of em for a while) leave the patient undiagnosed so they eventually reach the point that they require emergency care and develop complications that require even more meds and possibly surgery. But at least we will come in on budget for this year and win the contract back next year.
You forget the bit about us having less docs ,less beds ,and much poorer treatment of serious conditions.We have the worst of public and private by stealth mix.Something has to change but it won't.
The disparity between regions/NHS Trusts that make FT3 testing "available" and those who do not needs to be sorted. It's wholly unfair that person A gets FT3 tested and person B does not.
So your statement "The T3 Test is available" isn't strictly true is it? There is one caveat - The T3 Test is available [depending on your CCG endocrine policy]. So maybe people have to ask before they go private. Totally unfair in my view.
The FT3 test is available in my area but only done if TSH or T4 is abnormal. My TSH is suppressed so I always get my FT3 result from my GP! Ironically the endo who put me on T3 didn’t ask for FT3 in preparation for my appointment in May. He apologised and said it was on a separate page of the ordering system! I wonder why? Doing well on T3, buy it myself on a private prescription.
I had to get private testing of DIO2 gene though to back up my request for T3 treatment after 6 years of no improvement. Endo wanted to know how I know I have a polymporphism - told him I had private testing because NHS won't do it. Have developed TED and highblood pressure and pre-diabetes as a result of weight gain due to under treament for 6 years! I'm currently refusing treatment for these as I believe that they will go once I'm optimal. Can't rely on the NHS for chronic issues unfortunately. They're only good for emergency treatment. We have to educate ourselves.
This is an unforgivable state of affairs you have suffered Rita-D. More illness due to negligence and what is even more unforgivable is that your doctor was aware of the gene defect but for whatever reason didn't put two and two together in your case. You are obviously well informed by your own education and I really wish you well with your own protocol to tackle these additional medical issues. I would be interested to know how you get on.
Thank you Baobabs. I have to say that most of my education has come from this and other forums for which I am eternally grateful. Without these forums I would still be very sick withstood por quality of life. I just couldn’t accept that I had to live the rest of my life with such horrible symptoms. I was absolutely determined to prove the doctors wrong. Not perfect yet but definitely heading in the right direction. Wishing you good health. xxx
Following a year of T4 treatment after Hashi diagnosis and feeling no better, I broke down in tears to my GP in Saudi saying how fed up I was and I mentioned the possibility of T3 treatment. He announced there was no T3 available in Saudi ( Not true incidentely) but he actually admitted he knew of its existence. I remember feeling completely let down and betrayed emphatically said to him that this was absolutely no reason to just not mention it and that I felt so debilitated I would move mountains to secure it from anywhere. I asked him if he knew how to prescribe it. He nodded and I could have smacked him! Shortly after he said he couldn't offer me anymore assistance but would write me a letter detailing my Hashi history together with recommendations to forward to a more knowledgeable medic. At the end of the letter he gave a recommendation to begin T3 treatment in a split dose. I was livid. Do medics think we simply adore visiting them and pretend to feel wretched?
Oh my goodness,how awful. That’s just wicked! Did you get T3 and are you feeling better on it? My GP, who I no longer see told my that I didn’t need to see an endo because she knew all about thyroid issues Asher husband was under active. She didn’t even know the latest reference range for TSH and told me it was 0,5 to 5.0. Wheni next saw her she syrinisibgm wrote 0.5-3.0 on a post it note and gave it to me! I’d told her that the week before! She’d blatantly lied to me about her husband! She also told me she wasn’t prepared to lose her job for me when I said she could prescribe NDT on a named patient basis when I wasn’t improving on T4 only. She did refer me to an endo in the end as she admitted she didn’t know what to do next! I’ve not seen her since! She’s just useless. I see a different GP who admits he doesn’t know enough about thyroid issues but is willing to work with me to help me improve my life. Endo prescribed T3 and when letter sent to surgery, someone sent it to CCG for an order noon as to whether to prescribe! I saw it on EMIS and made an apointment with my current GP and he wrote a script! It’s £258 for 28 tablets! I now get a free private script off him and purchase from Germany for 30.15 euros for 100! Plus postage of 5.50 euros. I’m feeling much better though still struggling with weight afternoon tiredness bit hoping this will inprove. I’ve spent a fortune over the years in private testing, vitamins and seeing a functional
Health practitioner to try get well because the NHS has let me down . God help those who are not able to access forums like this for advice and are just left to live the rest of their lives in ill health. It’s scandalous!
Hello Rita-D. Well, I did seem to do well on T3 ( I source and pay for myself ) but began gyming, using up all my T3 and my T4 just plummeted as I was on 25 mgs with same of T3. I started having gross fatigue and dreadful bone/muscle pain and was advised here to increase my T4 3 weeks ago. My Endo in Saudi did not respond to my emails. I still feel grim but suppose I must be patient. Unfortunately you are a perfect example of what we have to do to obtain appropriate treatment to aid our health. It really is unbearably tough when our condition is dogged by fatigue and brain fog. You are so right when you say what do folk do without this forum. I am now receiving rebuff from friends/relatives because I am almost self medicating due to a lack of medical help.
I’m the same. My family do not understand at all. My sister was not happy with me self medicating NDT and gave me so much grief that I caved in. This was after I’d been on it for about 9 months and not getting well on it due to adrenal problems. I saw Dr Peatfield in Crawley, he was brilliant , suggested I get Adrennavive but I had a further endo appointment at a different hospital and what other my sister and the new endo (who promised me faithfully that he would oversee my care). I caved in and went back on Levo. I never saw that endo again! So much for personally looking after me! I’ve seen about 8 different endos and eventually saw a lively lady endo last year who told me I needed T3 bu she wasn’t allowed to prescribe it! She gave me the name of her boss and the telephone number of his secretary and told me to ring her to make sure he was in clinic army next appointment. She told me to refuse to see anyone else! She was brilliant! Whilst the next endo was reluctant to prescribe “no proven efficacy”! It was the week of the NHS consultation, he was very reluctant to prescribe but I think because I knew so much about it from the ITT Facebook page, he said he would await the outcome of the consultation before he made a decision! Eventually got it mid-January and it’s changed my life! I’m not perfect but so much better. He again said at my appointment in May “no proven efficacy”, unless you’ve got a polymorphism. Trying to baffle me! When I told him I was heterozygous for DIO2, he told me I could up my meds by 10mcgs without testing me! He was very animated when I told him that! They’re all under the influence of big pharma and scared to possibly breech guidelines, all the time keeping us unwell! It’s ridiculous! Ikniw it’s awful of me, but I just wish they could have Hashimotos for a year to live in our shoes and face the battles we face with getting the correct treatment! Good luck! xxx
Hmmmm...how about "testing for FT3 is not widely available on the NHS"? Certainly anecdotally from this group that appears to be a pretty accurate statement as those that can't get it done are certainly more prevalent here than those that can.
To say that it ‘isn’t widely available’ isn’t true - it’s available everywhere, and many hyper patients will have it tested every few weeks as a matter of course.
Like many medical tests, it is only tested in certain circumstances. The problem is, the permitted circumstances are a pretty blunt instrument, and typically interpreted by a very dumb computer !
"only tested in certain circumstances" is essentially "not widely available ". Availability of that test is being restricted by narrow criteria. Everyone with thyroid issues needs a full picture of their thyroid function, not just hyperthyroid patients
I disagree - my point was a geographical one, and I believe the distinction is important, because it sounds as if some people are being given duff information.
FT3 is a cheap test which is available everywhere in Britain. I would bet that every GP surgery in the country routinely draws bloods for this test, even if they aren’t allowed to order it themselves.
I would bet that in many places, GPs could order FT3 tests if they picked up the phone and made a case to the endo or duty biochemist (eg this person is on T3) - I wonder how many even try ?
"I would bet that every GP surgery in the country routinely draws bloods for this test"
Sadly hasn't been my experience, or that of my Aunt or my mother or indeed of huge numbers on this forum.
"I would bet that in many places, GPs could order FT3 tests if they picked up the phone and made a case to the endo or duty biochemist (eg this person is on T3) - I wonder how many even try "
My GP in fact told me outright that the CCG restricts funding for this test. (She has resorted to offering this test privately as a result) Being on T3 is not the only instance in which testing ft3 is needed and in any case, getting T3 prescribed on the NHS is unlikely. (This forum is full to bursting with accounts of how difficult that is) If you can't get on T3 in the first place you can't use that as a justification for getting ft3 tested.
Really not seeing the evidence of this test being widely available I'm afraid. If you have had easy access to it then that's fab. Certainly seems to be the exception and not the rule.
"The test, called a thyroid function test, looks at levels of thyroid-stimulating hormone (TSH) and thyroxine (T4) in the blood.
Blood tests are also sometimes used for other measurements, such as checking the level of a hormone called triiodothyronine (T3). However, this isn't routinely offered"
Most people who are hyper will have FT3 tested every 4-6 weeks, and many of these will have the bloods drawn at their local surgery, although the test may have been ordered by the endo. In fact, it’s usually just one lot of blood for FT3, FT4 and TSH.
The point I was making is that every GP’s surgery is capable of drawing the blood, and every hospital lab is capable of performing the test. The test is available, it just isn’t provided.
This is quite different from cases where particular tests may only be available via labs with special testing facilities. Availability of FT3 testing could easily be extended if the authorities wanted to do it.
I can’t imagine that everyone who is hypothyroid will ever be offered FT3 testing - it may be a cheap test, but it soon mounts up. People who are hyper are tested because their FT3 levels are expected to be elevated, and may remain elevated even when FT4 has returned to normal.
By the same token (and I realise it doesn’t happen), you would expect that at least people who are on T3, or people whose symptoms suggest poor conversion to be offered tests.
Yes. And hyperthyroidism is less common than hypothyroidism. So by definition the number of people not getting the test is greater than the number that are. However both hypo and hyper need optimal ft3. Too much ft3 is bad. Too little ft3 is bad. The only way to establish ft3 is to test ft3. To only make the test available to those suspected of having too much, when too little is such a serious issue, is nonsensical.
Of course every GP can draw blood. Of course every lab can test for ft3.
But if they are not doing it, then I'm afraid they are making it unavailable to the vast majority of patients.
If you are someone that is getting tested, then great. The vast majority are not.
If I have a cake, and I say to you "that cake is available to eat". But then I lock that cake in a room and refuse to give you the key...is that cake actually available to eat? A thousand more hungry people come and ask to eat the cake. I say "nope, you can't have the key either". One person comes along, just as hungry as the others, but is wearing a red hat. "Ah okay," I say "you sir can have the key to my cake as you fit my very very narrow criteria" .
So is my cake widely available? I have cake. But is it available to everyone that would benefit ? Or just the one with the red hat?
I'm glad for you if your experience bucks the trend. But I guess what I'm trying to explain is, it's hard for the person who gets the cake, to believe that others are refused cake because they get their cake so readily that they think that must be the norm. Can assure you it isn't.
But I suspect we won't agree. And I respect your view even if I don't hold it myself.
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