Hi People, my situation of dealing with hospital policies had become out of hand and now believe I'm being lied to and put at risk. Can anyone offer any kind of legal advice regarding hospital practices/policies before I place a complaint.
Hospital endocrinologist has always requested thyroid blood test of TSH T4 and T3.
Bloods were last taken on 11.4.19. But only received one blood test back for tsh which is barely scrapping normal.
Range 0.05 to 5.00 result 4..05 and my scalp and lashes are falling out heavily again. I requested the missing bloods from the hospital who have stated they weren't taken. But they absolutely were taken and I remember seeing them on the blood form. As they have been previously taken I strongly believe they have been abnormal and the lab hasn't release them as the policy appears to be not to treat patients. I can't ask the questions when there is nothing to view. With no diagnoses there is no treatment.
Odd they were taken in February and released to me and were well within normal range. TSH was 0.04 range t4 at 20 range 11.00 to 22.00 amd t3 at 4.5 range 0.05 to 6.00.
So this quite a drop in a short space of time and I really need to see the rest of the bloods and not just see them but have a consultant treat me.
I guess I'm asking if anyone would know of a legal requirement I can quote to tje hospital to obtain the misding bloods.
Many Thanks
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Karen154
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Unfortunately I, and many forum members, have had bloods taken and dr. requested FT4 and FT3 too, but because TSH is ‘normal’ ( even if high 4.05) ie within range they don’t test for the other ‘frees’. I notice in your Feb. tests your TSH was 0.04 ie below the range ( even if only by 0.01), but this might be why the other frees were done and could be reported on. I was told by my Gp it was the lab. that decided, and therefore apparently over rode dr. Are you Hashimoto’s ie got autoimmune antibodies ( with raised TPO or TgAb), that could easily account for difference in TSH of 0.04 to 4.05 in two months?
Thank you for the reply. I am gluten free and doing all I can but GP and consultant won't disscuss hash and anti bodies were mid tange normal so hospital refusing to test for that as well. I have no idea how to acheive balance and as I said Dr won't disscuss it.
It is likely that if you did get an autoimmune antibody test in the NHS that it was just the TPO one as TgAb rarely done; your TPO might be in range but the TgAb might be high ( mine is like that)...so if you want to try to confirm Hashimoto’s you might need a private lab test like Medichecks. Oddly there are people who can apparently have Hashimoto’s without raised antibodies. If you are Hashimoto’s then you may have / get characteristic poor gut absorption resulting in low ferritin, folate, b12 and vit D....optimal (high part of ranges) is needed for good thyroid health and conversion T4 to active T3. Low nutrients can give you various symptoms in their own right, so worth getting tested as a priority ...again GPs might do some, but vit D seems not to be done as costly! Thursday is good day to look at Medichecks website as have offers on...you don’t need to use kit immediately.
But they absolutely were taken and I remember seeing them on the blood form.
Are you absolutely sure that the tests were actually done. Yes, the blood was taken and yes the tests may have been requested on the form but the lab may not have done them. As Judith says, it's the lab that decides if FT3, and possibly in your area, FT4 are done. If TSH is within range it's usual not do to the other tests.
If you have any way of knowing for certain that the tests were performed, then your local Community Health Council should have an advisory/advocacy service so that could be your first port of call.
I have no idea for the area where you live (I live in Wales) but I found mine by Googling
"XX Hospital Complaints"
Also
"Community Health Council *area where I live*" and there was a link for "Raising a concern" which gave details of the service they offer and contact details.
I agree, T3 was requested by my consultant on all of my blood test forms and it was never tested by the labs. Presumably because of the results of my TSH and T4.
In the end rather than argue or beg for what I wanted tested I just quietly ordered a comprehensive set of blood tests from Blue Horizon / Medichecks and got in with it.
It isn’t right - or I don’t think it is - but it’s what seems to happen.
You’ve probably gone back as far as you can and perhaps have to move forward. Have new bloods done, take a photograph of the request form so you have proof. But if endo won’t take it up on your behalf it will be difficult.
Basically you know you need an increase in dose so as soon as you’ve had another test done (and you could have a private one to hurry things up) you should increase by a small amount. It is possible to adjust to optimal without the tests.
Far too often if a TSH is within range laboratory simply refuses to test FT4 or FT3 despite requests by GP for full testing
This is due to budget cuts
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Ask GP to redo tests .....or test privately
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hi, would you know if there is a medicine for hash other then levo as I am convinced I have this. I'm gluten amd diary free but it is still flaring up.
Important to test vitamin D, folate, ferritin and B12 regularly
What are most recent vitamin blood tests
If vitamins are optimal and FT4 at top of range, but FT3 still not brilliant and ongoing symptoms.....then you should be asking for referral to endocrinologist for trial of T3
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
I'm going to echo others here, that irrespective of what was requested, FT4 and/or FT3 levels were simply not tested, either as a result of the Lab having discretion not to, or following the protocol in place; rather than there being any lying to you.
Having your own comprehensive set of tests carried out privately, as do so many of us, might be your best course of action.
The lab used by NW London hospitals program their machine to only run fT3, fT4 if certain conditions are met. e.g. very low TSH for fT3, high TSH for fT4. To get fT3 done they have to manually override the settings. The blood tests for hospital endocrinologists are done at the hospital so they get what they want. The GP requests go to a Central London lab with the computer controlled decisions.
I would make a polite complaint to the hospital PALS and ask for the full blood tests to be done. It's only by making it more effort to not do the tests will they learn to do the tests the doctor requests. The blame lies with the BTA, ACB and BTF for producing this pile of poo british-thyroid-association... .
There is also a huge amount of blame lying at the door of the entire medical and clinical laboratory systems.
Every test request should result in a response to the requester and an entry in the patient's records. Even if that entry says "Test not done" and some sort of reason. Everyone might agree that the failure to do the test and the reason are unacceptable but at least it would be documented.
Where a lab automatically performs additional tests, they too should be recorded in the patient's records - also with an explanation as to why they were done.
I agree with you, that there should be a notation/reporting value that should appear just as obviously within the report as do the other results, of "test not done", codified to say whether that's because of a spoiled blood sample, lab discretion, lab protocol, or technician dropped the sample ... based on the simple principle that if a blood test or indeed anything else is requested, there should always be an explicit stated recordable outcome. If it's not reported as such, there's an operational black hole, and no prompt to the requesting Dr to do something about it, even if that's just saving the fact, to the patient's file for reference. So it's definitely required as good auditable operating practise, that of course could potentially at least, have health consequences down the line, but I don't myself, think it is an ethical issue.
Absoluately. As daft as this sounds I though n/a on my bloods tests for years meant everything was ok. I didn't realise the bloods had been rejected. My GP was lipped as well. Je never let it slip that the bloods hadn't been done.
Some labs won't test it's to do with funding I think even if it's on the blood form it depends what area you live in iav had this before it's easier if you just get private bloods or ask request for gp to test them again as they were missed off, have you done anything different since Feb? How were you feeling when you were at the range in Feb,
Iam in same position being left on no meds and not ever being monitored since August 18 iam just surviving on herbal pills and just got my tsh results bk and i have a tsh 12.21 having to hold a physically demanding job working 10 hours so shifts so I can understand how stressful and frustrating and upsetting it is that they aren't accomodating you but you can't really do anything other than request them again and make a complaint against your consultant to CCG as if you research nice guidelines your tsh should be be 0.2- 1.5 on levo.
I know it's disgusting and disappointing and they tried to also brand me with mental health issues its a complete joke and the only reason iav been so ill and stressed is down to the nhs it's dimoralising and conderscending and Iam disheartened this is how they are getting away treating thyroid patients in the UK it's outrageous it should be exposed because we shouldn't be having to fight for the right medication to keep our tsh optimal and our well being like a normal human being we didn't ask to be chronically sick yet were being penalised and the fate of our health is left in un knowledable and inconsiderate people's hands who have no clue what they are doing and how this disease affects us yet they get paid a big sum of money to dish out cheap medications to keep costs down and don't really give a toss about the patient and we can't really take legal action as I doubt it would get anywhere but I feel people should sign a petition or something and raise it with thyroid UK to take to parliament because people can't keep fighting like this for the correct medication and brands of medication too in the UK it should be equal to other countries who can get liothyronine authorised half our country shouldn't be allowed to keep it and the other half blacklist it miles and hours apart it's disgusting and ludicrous that the government are letting it happen everyone in the UK should have the same equal rights.
Hi Karen154 ,First I hope soon you feel better & better said , feel better soon at home🙏🌈 I am in the US & had a thought: perhaps what ever illness brought you in has a connection to thyroid being unwell thus justifying the extra labs. I honestly do not have in hospital experience for myself but know usually if you have anything autoimmune they usually listen more. I have Hashimotos btw.
My mom had far too many serious problems as the years went on but thanks to her RA & being "immune compromised" , often I got other tests/labs done using that angle AND as she worsened post stroke & more that also enabled me to get her a private room . HUGS🌸💌
Last week I went for my bloods on TSH, T4 and T3. The results came back but no T3 results. I called my GP he had to hand write the request on the blood form as it doesn’t automatically print out with TSH and T4 request. He called the lab who said it wasn’t on the form. It really was as I remember seeing it and also highlighted in yellow by Dr. As I’d had previously had T3 bloods done they did the T3 the following day.
This is the first time this has happened. I’m not sure if there is new emphasis on restrictions with T3 blood tests on NHS. Maybe there is as they certainly are restricting giving out T3 medication to patients. Maybe they’ll refuse doing the test then patients have no proof they need T3.
There are in excess of 2 million pathology tests carried out within the NHS on a daily basis, so it's perhaps not surprising that mistakes can happen in any case; and add that to the fact that staff working in the labs increasingly are reporting being expected to do more and more with reducing resources; it's great that they achieve what they achieve. But the system of GPs not being able to include a request for FT3 testing in the normal way that say a TSH test can be requested, thus requiring an additional handwritten note, is destined to exacerbate the likelihood of it being missed - notwithstanding that it's deemed not required in the majority of thyroid testing. It's that basic silliness that needs to be addressed.
I wasn’t too sure if it was a mistake or not after reading this post. My GP has to hand write it in the form every time. Sometimes he forgets and I have to go back to him for it before I get my bloods done. It’s a crime all this T3 business. I’ve had to fight for it for over a year. I probably needed it years ago and been struggling through I feel. After 5 weeks on T3 I feel alive again and even feel 20 years younger as I was before all this thyroid crap began in my life. If it was the same price as T4 there would be no problem in receiving T3 med from the NHS. I’ve gone private now.
It is awful and I really don't know how it can legal and certainly don't how labs haven't been sued. I have looked at private but its £250.00 for one appointment with private bloods and prescription. I just cant do that every couple of months.
Hi can I ask who you went private with and what was your experience compared to NHS consultant are they confident to prescribe liothyronine? And which brand of liothyronine can you get on prescription?
Hi, he was a nhs consultant working privately. Which they all are. I don't think I'm allowed to give the name but he was based at Wigan. He basically said would review what a colleague (saw his colleague 12 months prior) had written in the hospital he worked. So I paid for two appointment with no prescriptions or answers.
Told me my bloods might settle down this year and that was it. He was useless.
O that's disappointing I think it's best to go for a doctor who is totally private not half NHS as they are rubbish, I have researched a good one but can't remember I think they were on harely Street London, did you not get any medication I thought you were on liothyronine ? I live in Preston so if that consultant was any use might of been worth a visit with it only being in Wigan
The difference between private and NHS was remarkable for me. My private only professor quite quickly realised, from my bloods which were done in NHS via my GP, that I needed T3 sourced from Germany. And prescribed it swiftly. The cost of medication for me was £57 for a years supply! NHS told me the same quantity would be £10,000. It’s a disgrace it really is. More of a disgrace is the way I was left housebound due to complete weakness. I couldn’t stand let alone walk mostly. I thought I had a stroke a number of times. I’ve never been in such a mess. I’ve worked all my life until now. I live alone and was refused help of any kind health or financial. It has been the most terrifying thing I’ve ever had to deal with in my life. Now I have T3 and my life has turned around. Within one week I was back to normal. If you want my private professor details please message me. All in all I paid £1000 to get better. I wish I’d known that a year ago and sacked the NHS back then. I trusted them. How wrong was I.
I understand the strain as I work for a government department myself. This is not a excuse when funds are going into the system but being creamed off. Ie GP's are paid to make referrals and write expensive prescriptions so can be in their interests but not necessarily yours. T3 used to be cheap to product so why the sudden sky rocket in price. Could it be more to do with change of supplier. Of course the department is going to reach breaking point but this is unacception when we pay national insurance. Every government department should be held accountable for their poor choice of investments. Its all very sad.
T3 has never been cheap in the UK, relative to the cost of T4. The differential between the respective cost of liothyronine and levothyroxine that peaked last year (there's been a gradual reducing in T3 prices since) was certainly the worst ever, but even 10 or 11 years ago when I first started taking T3, it was relatively more expensive for a month's supply than for T4. I'm not sure to what you refer, regarding poor choice of investments and supplier; but the NHS isn't involved in sourcing or buying meds prescribed/dispensed in primary care; it is involved only in the end remuneration and reimbursement of pharmacies for their services rendered and prescriptions dispensed. Neither is it involved in licensing drugs for use, or licensing the manufacturers and wholesalers of drugs. So when Concordia declared it had manufacturing difficulties and needed to build a new manufacturing facility etc etc, which necessitated a substantial increase in the cost of T3, it was the MHRA and not the NHS that gave its agreement to that. Subsequently the matter has been under protracted investigation of course, by the CMA, for its alleged excessive and unfair pricing. Regarding the various payments available to GPs as a method of incentivising them in playing a frontline role in the Govt, through the NHS, achieving its health aims; we might not agree with either the principle or its ramifications, and I certainly don't, but it can't in all fairness, be said to be them creaming off the NHS budget. It is simply one of the many ways of directing and applying the health budget to deliver health care and improve the population's health.
My gp did initial do hand written requests but the lab would reject them. A nurse told me that the lab can only do the printed tests but more tests are available under the nhs providing the GP do the tests themselves.
Personal I wouldn't trust any of my lot to that as my dr read a test wrong and took my medication the wrong way.
I realize that it might not be acceptable to you but why don't you stop banging your head against this wall of "permitted" tests and just get them all done privately. I have the very same problem and if I relied upon my doctor (the GP) and the tests he requests I would probably be dead by now. I gave him a book to read, Tired Thyroid by Barbara Lougheed and he STILL only does TSH and T4. Fortunately he does very little that the Endo didn't recommend and the Endo told him I could be left alone with my own decisions. Yes, the doctors should do the right things but they are ignorant on matters thyroid. Get some peace of mind, get your own blood tests, educate yourself and ask questions here.
Hi, I have previously paid for thyroid bloods the problem is that I can't write my own prescription. When the nhs won't acknowledge private blood tests is just no point as your not being treated.
My GP won't treat my thyroid as they can't get the dose right. For the previously two years the GP has stated we have sent you the to the experts and thats the end of the line for me.
Well, your question seemed to be that you would like to know about your blood test results. The results you posted from February seem to be OK to me. TSH a little suppressed but don't worry about that. Unless I missed it you didn't say which medication you are on but from your results it looks as if you are on T3. If this is the case it is possible to get T3 from the continent, you have to do a lot of research and leg work but answers lie somewhere within this website. You might have to PM it. However, if you are not on medication it does not look as if you need T3 from your results.
To put this problem into perspective, I drive 400 miles round trip to pick up my NDT (which costs about $150 for 100 pills, i.e. about $50 per month) and I am on about my fifth doc. I kept firing docs who wouldn't do the right tests and finally, finally found a sensible one (although 200 miles away). Even he won't do all the right tests, but I get them done privately and adjust the dose he prescribes for me. I know you will feel indignant and think, " I shouldn't have to do all that, I pay for the nhs through my taxes!" yes, but it comes down to whether you want to feel normal, sick or spend a lot of time fighting a stupid system. Many of us here are in the tail end of the distribution so we have to think outside the box and do unusual things - and then we get well.
ps. For what this is worth, I get books on CD from the library and turn that drive into an absolute joy - I hardly want to get out of the car at the end of the journey until that chapter has finished.
Hi, I'm taking levo. I was starting to have problems in February so the consultant lowered my dose. I have no way of raising the dosage unless the consultant approves it. Over the last 4 1/2 year's I've swung from over to underactive with awful systems when bloods start heading out of range.
I've seen four endocrine consultants under the nhs and one private. Private was worse and unaffordable. I need to treat myself but there is no way I can obtain the medication to do that.
Hi Karen, you have to raise your own dose until you feel better. Your consultant is not counting the days between when you get your meds and when you go back for more. You know that you are safe at the higher dose so fiddle around until you feel well. When I was on (a good brand) of Levo it took me nearly two years to get the dose right and I did it mostly on my own. My doctor was delighted when I presented finally feeling well on a far higher dose than what he had prescribed. Your doc will similarly only be too glad to "get rid of you" - they can't stand thyroid patients, too many variables and not enough time to do it right. We haven't seen your blood test results yet but you might be a bad converter (of T4 to T3). You will need to boost your vitamins and take Selenium to get that conversion going. You can quite safely get selenium from two Brazil nuts per day (no more though) and then measure your F T3, FT4, TSH, Se and whatever else you may think you are low on. But most of all hang in there, read up as much as you can and take your recovery into your own hands because for some of us that's the only way.
I was refused treatment by my local Endocrinologist who was private and NHS. He is a professor of Endocrine too. After months of really terrible symptoms I found a good Endocrinologist in Oxford. Even though the journey was 400 miles round trip it’s been worth it.
I had 2 consultations face to face. Then 2 telephone consultations. Last one was yesterday. Within the first two consultations he could see from my bloods, which I got done on the NHS via my GP, that I was not converting T4 to T3. At last a Endocrinologist was going to help me I thought. So he wrote to my GP and said I needed T3 and for him to prescribe. My GP then contacted my local NHS Endocrinologist who replied that I had no Endocrine issues!!! My private professor in Oxford then prescribed me privately with T3 prescription. I then sent it off to a supplier in Germany. The T3 arrived swiftly without any problems. It cost me £57 including delivery charges for a years supply.
Since I started T3 5 weeks ago, my life has completely changed. I can now stand, walk, do housework, do my garden, decorate and not be housebound which I was for nearly a year. It’s an absolute disgrace and shameful that Drs will not and can not prescribe T3 anymore on the NHS. My GP is over the moon that My Professor in Oxford has sourced T3 at such a low price for me. The NHS said the same quantity I got for £57 would cost £10,000 on NHS. It madness and so very frustrating. All these patients left with terrible symptoms and no lives suffering. Why can’t the NHS procurement teams procure from Germany. It beggars belief. DRs shouldn’t be hiding behind these price hikes. They should do their jobs and keep people well. In not doing so causes more costs down the chain for unresolved help. Patients calling Drs and going to hospital for help uses up valuable resources and time. No wonder the NHS is in a mess. I’ve been sent to many different Drs and hospitals all because they were swerving me and sending me on wild goose chases because they didn’t want or couldn’t prescribe T3 medication to make me better. I am alarmed and dumbfounded at the treatment I have had. And reading so many posts on how badly others are treated too.
The NHS need to change its supplier to another for T3 it’s as simple as that.
If you want details of my Professor in Oxford please message me. In all I paid £1000 privately. That’s all and the NHS must have spent tens of thousands on me while 3 hospital stays referrals to neurology on 3 occasions. Countless GP appointments. MRI, synacthen tests, CT scans the list is endless. All because the local Endocrinologist wouldn’t deal with my T3 problem all down to the cost of the medication.
And I had to leave my fab job. I was a manager at Rolls-Royce. Maybe I’ll get another job when things have properly settled down.
Sorry for such a long reply. I just feel for people on here. I’ve made the journey the hard way. And if someone told me right at the beginning that if I spent £1000 then I’d be ok I would have jumped at that chance. Back then I never knew what a sorry state of affairs the NHS is in. I thought they’d help me. How wrong was I. Private is the only route to recovery. And only private not NHS/private as they still wear the NHS cap.
Wow McPammy, these war stories of how we went from despair to normality really help. They give encouragement and a road map to others out there who probably feel alone and have no idea which way to turn. Thank you for posting.
Thank you for you comment. It too makes me feel as though now maybe I could help someone. If it’s only one person I would be happy, I do hope to help more if I can.
Thank you pam I would the details of your endocrinologist. I'm based in west Lancashire and work are difficult so I think it would mean a few days off work to see him.
After I had my throid surgery my TSH was at 8.00 range 0.05 to 5.00 and I was left like that for two years. I lost my business and home. Also had a miscarriage and all the time wouldn't higher my dose. I could have quite easily became homeless.
They should be held to account for lifes they mess up and the distress they cause.
Nhs management would have made a profit by tying the nhs into a bad deal with medical supplies. But when the nhs is being milked like this surely to god its in state interest to stop it.
Hi this happened to me too. in the test result papers the lab put not available, any question ring the blood test department. My GP said my tsh was normal and within the range and therefore the Lab didn’t see the reason to do the other tests.
It is true that the laboratory have the last say in what they will test and what they wont. My doctor had a real fight getting some bloods done for me and others they point blank refused to do, crazy when the clinician feels it is necessary
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