Dozens of UK companies are offering private tests for a range of conditions and deficiencies. Some make claims that exceed the evidence base, and experts say regulation is needed to protect patients. Emma Wilkinson reports
“Take your health into your hands today,” reads an advertisement for the Livit app, from Nightingale Health. Costing €179 (£155; $176), it encourages four blood tests a year, using “highly advanced blood analysis technology,” and promises to predict how many healthy years of life a person has left.1
The market for direct-to-consumer tests such as Livit is booming, with one piece of market research predicting that the global blood testing market will rise by 60% from around $80.50bn in 2021 to $128.45bn in 2028.2 Experts are concerned that such companies are making misleading claims and leaving an already overworked NHS to follow up “abnormal results.” Some have also warned of a lack of regulation to ensure that consumers truly know what test results mean.
The BMJ’s investigation has led us to refer two companies to the UK Advertising Standards Authority for misleading claims about the accuracy or detection rates associated with at-home tests. Another removed tests from its website after we got in touch (box 1). But in many cases it is the absence of information that is the problem, says Chris Salisbury, professor of primary healthcare at the University of Bristol. “There is a simplistic assumption that more information is better, so why shouldn’t you get the tests done? Yet they’re making claims without showing any of the disadvantages,” he says.
I was bedbound and very unwell and I had an appointment but instead GP phoned to tell me that my blood test showed I had no problems.
I cried as I felt awful.
So it was down to the GP to be aware that He had no knowledge whatsoever of what a TSH of 100 indicated and that the patient had hypothyroidism.
Months later a GP told me that my TSH was too low, T3 too high and T4 too low. 'Yes doctor that's because I take T3 alone." GP - but T3 converts to T4!!!! - No doctor that's untrue.
I was very, very fortunate to consult both with Dr Gordon Skinner and Dr Barry Peatfield who helped no matter how many miles away they might be.
It seems that - even in these days of internet/knowledge there are GPs/endocrinologists who are still unaware of symptoms and patient remains undiagnosed. So surely their knowledge is nil or a guessing game.
Thankfully the majority of us have internet connection but some, poor souls, do not and desperate enough to write a 'last testament'.
You have mentioned before that Dr Peatfield is deceased, this is incorrect, he has not passed away. He has obviously retired, he is now about 86 years old and not in the best of health but there has been no report of his passing.
I'm guessing the thyroid and vit D testing offered directly by NHS labs isn't really the issue here. It's all the other stuff being offered, where there are 'middle men' involved.
Most NHS doctors wouldn't have a clue what to do if a patient presented with results from this test. I suspect they'd consider it a complete waste of their time.
That's interesting to know, I did send my Regenerus DIO2 results to my GP just so it is on record (it clearly states a combined T3/T4 approach is better) They don't have a clue and I've not spoken to an Endo yet...
RedApple Do you think the gene testing has any merit when self medicating?
I've just taken this test for my own curiosity and in the hope it will help me manage my Ord's better and maybe advise my daughter on better thyroid care if she has the dodgy gene too 🙄
Eeyore100, My personal take is 'do whatever puts your mind at rest if you can afford it'. Just don't expect your doctors to understand or do anything with the information you obtain from such tests. Members who read this forum regularly end up way ahead of 99.9% of todays medics in the knowledge stakes. Many here have only re-gained a degree of better thyroid health through being on this forum and doing their private testing. The medical profession have no right to deny us that do they!
That seems a very fair comment... they don't know what to make of the tests they do offer most of the time 🙃
I have certainly only regained my life since finding and following the great and varied advice on this forum.... knowledge is very definitely empowering
I too have taken the Blue Horizon Thyroid Genetic Profile which informed of some extremely interesting results. Namely I'm homozygous impairment on the TRHR receptor gene (hypothalamus) that is a part of the negative feedback loop, ultimately regulating thyroid hormone variance.
Pre Hashi diagnosis & going through the sh*t of T4 mono-therapy, I'd spent my whole life cold and tired. As the gland wasn't atrophied until middle -age after medicating (proving I later had an assorted selection of thyroid antibodies 😬) I always wondered how Hashi could have caused such early years of thyroid hormone deficit.
Also heterozygous on TSH receptor so chance of fault there too, and also another gene involved in TSH signalling. I knew I was heterozygous on DIO2 and test shows I am for genes that regulate cortisol so am presently having that assessed by a practitioner who specialises in reading these results.
Interesting she has recently switched me from methylated sups to choline which better suits my MTHFR impairment. Apparently over-methylating can be as destructive as under-methylating, and not everybody needs easy forms of folate to utilise.
This test is expensive and having it correctly interpreted is more expense but I feel if we can afford it, it can be extremely helpful in supporting our thyroid needs. I have previously also had other genetics tested which has proved useful.
I agree with RedApple that GP's or even most endos wouldn't have a clue how to interpret results.
Thanks for this insight, I'm actually really looking forward to getting the results back😏 I like to know how things work!
Sounds like we have similar experiences so far... I would often have to retreat to a hot bath.
Can I ask how do you go about finding a practitioner able to make the most of the results? I don't mind experimenting on me but I need to get it right if advising my daughter
if the nhs actually did the right tests for thorough thyroid monitoring in the first place we wouldn’t need to buy our own. They have brought it upon themselves, at least in our case they have.
But presumably the test ranges are whatever the medical industry has set? So if a results is abnormal its abnormal whether tested on the NHS or privately? So I don't understand why the NHS is considered to be mopping up all the abnormal results?
Surely that's just their job? Regardless of how the information was discovered?
of course. But one surely they're all largely bound by some sort of guidelines?
Lets assume all labs and machines have the same range... say the NHS lab was a range of 2 - 10, a private lab couldn't be 4 - 8 because they would thereby be artificially creating more 'abnormal' results.
If that makes sense? An abnormal result is abnormal. In terms of interference from other meds or supplements, ideally all private companies would alert people to that but I've never been alerted by the NHS either.
Because reference intervals do vary, we can't immediately identify a lab doing something odd. The only thing we can do is have proper and regular inspection and oversight f all labs - NHS or not.
At present the NHS labs seem to generally try hard to work to appropriate standards.
Doctors in an area might be advised by their lab to consider causes of interference. But if they are seeing lab results from numerous labs, it does make it more difficult. I agree that the labs need to make these issues clear.
If only GP's would go back to good old-fashioned doctoring and connect properly with the patient in front of them rather than everything being about blood tests, we wouldn't all be chasing around for the results to get action 😡
If the blood tests were any good at diagnosis, I would have seen a whole lot less of my GP over the last 4 years!
When I look back at how they used to diagnose thyroid issues and treat them with natural rather than synthetic hormones... life seemed so much more straight forward then 😕
Ref "Natural rather than synthetic"...I decided to go for Armour NDT rather than synthetic having given up on NHS GP for Thyroid treatment for the usual reasons . Any thoughts?
Hi, I don't actually have any experience of the natural products available, it was rather more that the natural products seemed a more holistic approach as they contained all of the T's rather than just replacing T4 which is how the NHS like to treat us.
One of the more knowledgeable folk on here pointed out to me that modern 'synthetics' are in fact body identical but you have to find the right combination of T3/T4 as there isn't a combined option.
I had thought I might prefer a natural option once I worked out my level but apparently it isn't that straight forward, I also wonder about the sourcing or these products what with BSE, foot and mouth etc, less of an issue with american sourced but still a welfare concern 🤯
I am a staunch supporter of the NHS but also believe there is a place for private testing (outwith the NHS) as without private testing I would have been unable to evidence my own poor conversion to eventually get T3 on prescription. What saddens me is to see pharmaceutical companies and private contractors 'milking' our valuable NHS when that money could build, strengthen and greatly improve our wonderful NHS.
Isn't the issue, at least with thyroid tests, that quite often, the NHS lab decides what and which thyroid hormones they will test, regardless of an endo or GP request for T4 and T3?
In my own case it was only when I questioned my GP at that time, exactly what he thought was wrong with me, if he ignored my thyroid test results, and he said they were convinced from my symptoms that I was hypothyroid, and offered me a trial of Levothyroxine. And those quite a few years had been using an NHS lab ....Maybe we need Drs who understand the symptoms and not simply go by test results?
Clearly NHS is now limiting it's testing and slowly privatising eg vitamindtest.org. For example, my dads regular tests were cancelled at hours' notice and complaints to GP then NHS England were fruitless with "clinical need" excuse from GP and useless NHSE saying whatever GP says is right! That despite PSA included and the drive for older men to test (dad was 66 then). We now test privately as well as doing our own, protective healthcare (NHS never did that anyhow!). dad tries to ignore that he paid £120k+ NI over his career!
As a nutritional therapist starting out soonish, I will recommend selective, private labs eg Medichecks, if similar experience.
My mum was told by the GP that her blood pressure might be high and to make an appointment to have it checked the following week. If there weren't any appointments (there weren't), she could go to a pharmacy and have it checked there (for a fee).
So it's fine to pay for tests or treatment as long as the NHS says so?
Its privatisation by the back door. From the Lancet - The privatisation of the NHS in England, through the outsourcing of services to for-profit companies, consistently increased in 2013–20. Private sector outsourcing corresponded with significantly increased rates of treatable mortality, potentially as a result of a decline in the quality of health-care services.
On my last GP visit, I was told to see a rhumatologist. There were none within the Trust. If I want to see one I will have to go private. Not possible on a pension. Want VitD tested? Want T3 tested? Go private, I was told. And if you cannot afford that - suffer seems to be the answer.
This does seem to be the future... NHS for A&E, acute and experimental treatments... if you are of interest to them and chronic will be left to sort themselves out.... Darwinism unless you can afford to self-treat...😳
The concept of private testing ballooned in the States, appealing to the "worried well", and enabling companies, many unscrupulous, to make a great deal of money. To be clear, we are not referring to just simple tests such as basic thyroid or hba1c bloods, but those ranging from liver and kidney testing to CT and MRI scanning. As mentioned in the article, what is currently of great concern is that some companies provide results, information and suggestions that can be both inaccurate and/or misleading. Additionally, interpretation of results, whether from blood tests or scans, is something that needs to be done by those with professional training, and access to the patient's medical history, and anything medically concerning should be referred to those qualified to deal with it. If GPs here in the UK become swamped by those who receive a diagnosis via unregulated sites, which could well be inaccurate, but which will obviously cause anxiety, this will come at a cost to all who are in real need of NHS help. Even genetic testing, which has grown in popularity, sometimes for medically necessary reasons, but, more recently,simply out of curiosity, is not as black and white as often stated. The majority of results give an idea of what may or can happen, not what definitely will, so caution and supportive interpretation is what is needed, not an immediate rush to the GP by someone who is convinced that they are afflicted by a dreadful disease. Testing of any sort should be done for the right reasons under the correct conditions, and with qualified support. Yes, personal testing to check or confirm what we already have knowledge of, done through a reputable company, can be both justified and useful. Random testing with no qualified interpretation and support is not something that should be widely encouraged, particularly when looking at the model operating in the States which, in most cases, is purely a money-making exercise.
Yes buyer beware, but honestly doctors don’t have much more of clue than the average patient when it comes to interpretation of blood tests. Not a single one in my surgery was able to over turn my logic when going for dose increase and each would have been happy to leave me on the dose I was on from 25ug right up to the 125ug I was on when I argued logically being symptomatic and and room in ‘the range’ to accommodate, another dose increase should be given.
The last two were particularly good because they actually listened. Hell who knows they might have actually not something out of the conversations themselves. 😂👍
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