DIY diagnosis of illness is dangerous trend, say pharmacists

Whilst it is patently obvious that self-diagnosing and self-medicating is not the ideal form of medicine, I rather think this article is missing the fundamental reasons we have to tread this path.

DIY diagnosis of illness is dangerous trend, say pharmacists

People who diagnose their own illnesses by trawling the internet or talking to friends risk damaging their health, pharmacists have warned.

The growing trend of DIY diagnosis could lead to patients receiving the wrong treatment or buying drugs that could harm them, the Royal Pharmaceutical Society (RPS) said.

“DIY diagnosis can be downright dangerous. You could be missing something a pharmacist or doctor would know was important. While there are good online sites, there’s an awful lot of nonsense out there too,” said Neal Patel, head of corporate communications at the society.

53 Replies

  • Quite often it is a choice between DIY diagnosis and no diagnosis or treatment at all.

    NHS tells us our treatment should be decided in partnership with GP. Trouble is they don't like us educating ourselves whether from internet or books. As to how anyone can make a proper diagnosis in a ten minute appointment where you are only supposed to discuss one issue and further appointments can be 4 weeks away and you rarely see same doc twice unless you wait even longer............. sorry I've run out of patience!

  • Very well said totally.and utterly agree

  • Yes I'm tired of hearing from smug journalists and celebrities how only silly people pursue alternatives to conventional medicine. Cue David Mitchell and his blinking bad back cured by nothing more than a recommendation from his gp that he take a walk every day. Good for you David Mitchell but what about the person who has seen the gp for the bad back and been given antidepressants and a mental health referral while getting sicker and sicker? All well and good to roll your eyes about 'bad science' but I take it that must mean you've got results from your gp and you're feeling better. Some of us need to look into bad science because no science at all has been applied to our situations.

    As crimple says, 'Quite often it is a choice between DIY diagnosis and no diagnosis or treatment at all.'

  • Your comment about bad backs sure hit home with me. I coped with recurring, disabling back pain for 28 years by going to chiropractors. Not ONE MD had the sense to check my Total Blood Protein. Celiac wrecks digestion and the patient goes into hypoproteinemia. Therapy with free essential amino acids solved the back problem in about a month. It also remedies insomnia for many of those who have hypoproteinemia, without the stinky side-effects of benzos, sleeping pills, etc.

  • That is very interesting Eddie83. I was just chatting with another hypothyroid person (we have the same endo) who told me that she broke a bone but it was secondary to Coeliac disease. She said it wasn't because of osteoporosis but something else (name escapes me) and has to do with lack of protein due to the digestion problems associated with Coeliac.... which she had for decades and doctors would tell her to eat less fruit and veg but nobody ever tested for Coeliac. Our endo tested for Coeliac antibodies which were positive and then she went to the GI doc for endoscopy. Meantime her diet all her life has been really excellent except she wasn't absorbing. It's a long trek back to health for her. She's fortunate that her family are 100% supportive and nary a molecule of gluten passes her lips.

    What is this amino acid therapy?

  • There are several companies that sell a mixture of the 8 (or 9) essential free amino acids, in the proportions established by research. The high-price approach to this is Can't afford that, use the NOW Amino-9 Essentials product instead. It is common among naturopaths to suggest one free amino acid (tryptophan or its metabolite, 5HTP) for insomnia, but all the essentials together work better when the patient has hypoproteinemia. Pharmacist James LaValle suggests that the range for TBP should be 6.5-8.0 g/dl, with the sweet spot at 7.2 g/dl. This range is narrower than the 6.2-8.3 specified by the lab I use. (TBP = Total Blood Protein)

  • Thanks, Eddie.

  • Who in their right mind would tread this path. On this forum, it is due to the downright ignorance of doctors/endocrinologists who appear to have no clue about how to alleviate our clinical symptoms despite being on thyroid hormone replacements or remaining undiagnosed due to the placement of the TSH.

    If we want a healthy, active, meaningful life, we are forced to self-prescribe otherwise we will have no life at all and not having the 'correct' hormones we can develop other more serious diseases.

    Who in their right mind would try to diagnose themselves. It's only when we have clear signs/symptoms re hypo and underdosed/undiagnosed and due to desperately needing life-giving hormones that people's hands have been forced.

  • It was due to 10 years of being under medicated whilst still feeling ill that I had to seek help and support in the first place.When I asked my GP if there was a local thyroid support group he said no and that I would have to use a national one.

    Thank goodness I found Thyroid UK !! X

  • Amen to that!

  • Very well said shaws.

  • I have been pretty good at diagnosing my ailments using the fact a lot more successful at getting to the bottom of things than a score or more of qualified health professionals and the supposed 'experts'! My self medication has also been infinitely more successful than the health professionals prefered 'one treatment fits all' [lack of] choice for treating hypothyrodism..

    It seems risible to complain about people trying to educate themselves about their ailments and taking action to help themselves, especially when I hear the latest advice is not to see a doctor with 'trivial' symptoms...when a cluster of seemingly trivial symptoms can add up to a very serious condition/illness. Hypothyroidism is a classic to probe the point. Then take heart disease - women are far more likely to have non classic symptoms like a touch of indigestion or a pain in the jaw and they are far more likely to die of a heart attack compared to men that have them. My brother was given a just a week to live with Burkitts lymphoma after suffering nothing more than a bout of flu, some stomach aches and a pain in his thigh - all stress related according his GP - before collapsing whilst running with his dog and being taken to hospital. We all know the state of play with thyroid problems, being fobbed off repeatedly with .... its just's all in your's a hormonal thing that some women get.... it's just the menopause (sorry guys re last two ) blah blah. And now the secret plans have surfaced that the NHS is going to be chopped back even more...but we can help shape it... really? Sounds like a fait au complete to me.

    We could have little option but to self diagnose and self medicate via the internet the way things are going.

    Are there any stats on how many people kill themselves by self diagnosis and self medication using the internet? I suspect T4 monotherapy of an inadequate level, the prefered and virtually only treatment offered by our health professionals is responsible for a poor quality of life and premature death for many hypothyroid sufferers.

    The article really does miss the point. What happened to intellectual integrity and curiosity on the part of the journalist, leading to any attempt to dig deeper to discover what has caused this situation to develop in the first place, instead of talking to people like they are infants or imbeciles needing stern correction?

    I'd like to inform Neal Patel that there is a lot of nonsense spoken in doctors surgeries from my experience and it is not coming from the patient. Therein lies the rub.

    If we were listened to and offered a real choice of hormone replacement therapies on the NHS the whole thing could be resolved - at least for our condition - or if not resolved most certainly the situation would be vastly improved.

  • Well there are a lot of doctors who dont seem to be able to make a scientific analysis. They say things like, you are too young to have .. "Whatever" , or they say i dont have any other patients on T3. ( the reply to that, is, oh dear poor patients, do you just keep them ill)....

    I am always tempted to say to the docs, please dont confuse your smattering of knowlege with my careful research.... But it wouldn't endear me to them.

    There will always be idiots who self diagnose and treat wrongly, but in general we should be afforded respect for attempting to help ourselves. schools should teach people to be much more self reliant.

    Rant over!


  • Yes, patients should be more self-reliant. Doctors have been given far too much authority. BTW, what do you call a man who graduated last in his med school class?


  • The important thing I failed to say here WRT self-reliance, is that hypothyroidism (depending on degree) is very damaging to self-reliance. The brain fog, which often makes it impossible for the patient to think clearly or quickly, or be assertive, creates a huge barrier to proper treatment. Doctors are able to walk all over many patients with the condition. It is clear that many hypoT patients require an advocate who can go with them to appointments and advise them (much like the need that many people with developmental disabilities have), yet few patients can afford to pay a "professional" advocate (if they can find one), or have a family member who is knowledgeable enough to act as an advocate. It is a genuine "Catch-22" situation.

  • I rather like the way they dismiss things simply because they are rare. The number of rare disorders/diseases is so large that actually in total they are common, if you see what I mean.

    Someone close has something which means about 150 people in the UK have it - according to figures generally available. My belief is that it is far more common but most often remains undiagnosed.

    Perhaps, rather than a rare disease it is a rare diagnosis? That is, the medical profession letting us down.

  • If I hadn't self-diagnosed I'd be dead by now I'm sure or have had a myxedema coma. which some on this forum have experienced.

  • Thank goodness you are here and well Shaws.You have been a great help to us all.😊🌷

    PS ....have logged in twice already this morning and have sent HU support yet another email.😡👎

  • @shaws

    ...same with me and even then I had to demand a thyroid function test and tell the doctor I was beyond the reach of antidepressants it was much more serious and I was not having them. It was lucky I got the thyroxine just before Xmas or i'd have frozen to death in a coma despite two of my whippets cuddling up trying to keep me warm. It was a really horrendous experience.

  • You couldn't read stories like yours without horror and asking 'why is it happening'?

    It has to be due to the 'modern' method of diagnosing.

    Before the blood tests came in with the promotion of levo, doctors diagnosed us upon signs/symptoms and prescribed natural dessicated thyrod hormones. It was increased until relief of symptoms and patient felt much better.

    Nowadays we are diagnosed strictly by the blood test (TSH) and it might never reach the level and people suffer unnecessarily. Also remaining symptoms are not thought to be connected and given other medications rather than hormones.

    How many people develop other diseases?

    Someone complaining of coldness I doubt the doctor would take their temp. No action would be taken if it was below normal - would it?

    I hope you get to an optimal dose soon. :)

  • The question is, how long should one wait for correct diagnosis and treatment? 5 years? 10 years? 20 years? Took me 21 years and I spent many $$$ on bozos. I really don't care what pharmacists have to say.

  • We are not asking for banned substances that give us a 'high'. We are asking for a choice of hormones to enable our body to function without disabling symptoms and all of the Endocrinology worldwide will only precribe levothyroxine who don't listen to patients or prescribe alternatives if the person is obviously very unwell.

    The cannot 'see' what is going on within our bodies and think they know more than the patient. The doctors that do prescribe alternatives are threatened with losing their licences and some have in the UK.

  • My poor mum was told once she was treating levo like cocaine, many gps tried reducing her levo based on TSH, one consultant actually succeeding and she turned into zombie. 12/18 months later she nearly died through undiagnosed diabetes type one. She is taking part in a LADA diabetes research project now to try and help others. They have said its possibly been caused by her thyroid under treatment. All caused by doctors attitude that they know best...regardless of our symptoms!

  • It's shocking. My mother had P.A. and had B12 injections for years until her doctor said she no longer needed them as her bloods were 'good'. I and my sister thought that was good news but not when my mother died a dreadful death through the lack of B12. It is very shocking as we always thought 'doctor knew best'.

    When she was admitted to hospital I phoned the ward and said my mother 'had' had Pernicious Anaemia only to be told that it is permanent. Of course I know that now and I also have P.A. How does one protect oneself from wrong advice when too ill and has to rely on another to look after your wellbeing?

    Even when Mum was complaining and up and and down to GP with severe pain no-one apparently looked at her notes or were aware she'd not been given B12 for months and months neither did they investigate.

    We have to make sure when on 'other' hormones than levothyroxine that someone will insist on our 'own' hormones being given or will the hospital switch over to levo despite family members saying otherwise. What is the situation then? How can we protect ourselves?

  • Mmm my mum wasn't given levo in hospital, also got insulin in AAU but when moved to ward was hit n miss. My sister who was with her took her out of hospital and we relied on advice fm a doctor friend and a friend who also had diabetes one. After the first improvement fm her admission with diabetic ketoacidodis she started to deteriorate until we got her home. It's so scary, I dnt hve any children so wonder what will happen to me when old, sad and worrying :-(

  • So here's someone who has waited patiently for appointments with both a gp and an endo, and yet here she is back on the naughty internet trying to self-diagnose. Can't imagine why:

    David Mitchell's gp would recommend a brisk walk!

  • I just read her post and the Endo's remarks were quite shamefully ignorant. No wonder people get desperate. We wouldn't have to if medics actually knew something about thyroid (to name but one field of ignorance!)

  • Yes it is dangerous! I was terrified the first time I put my first NDT in my mouth - but my Endo's solution was even worse, I was moving closer to death or coma by the day, and that was even more terrifying. Education of our Endos is the key to this problem - beyond diabetes. Endo's are acclaimed as being great because they are good at diabetes but they know very little about thyroid problems - probably because it is a difficult subject. I think that unless a medic is truly interested in the thyroid system they should not be "crowned" as Endocrinologists. That's like a bus driver saying he is a great driver but refuses to use nor understand the gearbox.

  • LAH,

    We assume that endocrinologists are diabetes experts because many are patently not knowledgeable about thyroid. I wonder whether diabetes patients are satisfied with their endocrinologist's treatment?

  • I was reading a diabetes forum yesterday - this one :

    It is a patient run forum. And no, as far as I can tell a lot of them are not happy with the poor dietary advice and help they get from the NHS.

    I also read Dr Kendrick's latest blog post yesterday :

    In Australia, a doctor has been chastised and threatened for "inappropriate reversal" of someone's type 2 diabetes. The world has gone mad.

  • Can say quite honestly its taken 26 years to find an endo who knows what he is talking about diabetes wise, most don't have a clue/care anyway.

    All they do normally is keep diabetics alive, by hook/crook or suffering.

  • Blimey, thats worrying, so the diabetes medics are also up the creek. We know blood pressure medicines and cholesterol drugs make you more ill in many more ways - so where to turn? I wonder what branch of medicine we can have complete confidence in. Very frightening.

  • Conventional treatment of type 2 diabetes is a travesty - every bit as scandalous as thyroid treatment. They advocate a diet that is guaranteed to make diabetes worse, and diabetics fatter.

    In a centuary or so the will look back at medicine as it is practised now, and decribe it as medieval!

  • Clutter

    Yes poor practice is just plain poor - anyone decent would be good in all areas of consultancy their title supposedly accords

  • LAHs

    or drives the bus with a blindfold on half the time

  • On the other hand you could be like me and with the aid of an enormous family medical dictionary (pre internet days) diagnose correctly that your son actually has gastritis and not tonsillitis as repeatedly diagnosed by his doctor:)

    Not only that I can diagnose the illnesses if people on Behind Closed Doors before the doctors do although I have to say I didn't see my own Graves coming, I knew I was really ill which was more than the doctors I saw seemed to do, I was just thinking I had some thing like lupus or sjorgens. Never thought of thyroid probs though.

    Joking aside, I totally agree with crimple - it's often self diagnosis or no diagnosis.

  • The internet saved my daughter's life. End of story! Jane x

  • We must all look after our own health.

    I had tummy problems , was sent to a consultant. When the usual antacids etc didnt work he decided I needed a phycologist. That didn't help either. Why. I had a tumour in my bowel that kept blocking it. That was causing thd pain . Operation did relieve it !funny that !

    To late though,in my liver now !

    I have met numerous others with similar stories.

    One young friend currently having 24 roonds of chemo. IGod help her get through that.

    Constipation was her main symptom plus extreme weariness.

    Would those symptoms be consider to trivial??

    Sorry its off tract .

    Wasnt sure if I should post it , but its my experience with doctors.

  • Best wishes 💜💜💜

  • Thank you x

  • Gcart

    Sorry to hear that - just awful.

  • Absolutely right. The way thyroid disease alone is commonly treated is nothing short of medical malpractice. The profession should be ashamed that many of us are having to put up with their criminal negligence. How much obesity, heart trouble, depression, high cholesterol etc is caused by it? It would be interesting to know.

  • If doctors were reliable we wouldn't have to.

  • I wish I'd had the ability to self-diagnose & medicate with thyroid meds by 1978!

    On the other hand, I've seen a few people's pill cupboards, filled with the contents of that high street store that sells low quality supplements, that they thought would improve their health, then didn't so they bought more. No knowledge or care taken as to supplement combinations or clashes, so this could be potentially harmful. Even worse, no food lifestyle changes, so people take stuff for a quick fix rather than eat properly.

  • Taken out of context, there's no argument that self medication can be harmful. But as everyone says here, if there is no alternative what can one do? Neither pharmacists nor GPs are uptodate in thyroid function testing strategy, and neither are those who advise them unfortunately. It's no use pronouncing on something from a lofty height if you wear no trousers so to speak. One's shortcomings are only too plain to see. Thyroid diagnosis is a far more sophisticated business than is presently performed by endocrinologists, hospital testing or GP appointments. Nothing less han a radical change will improve matters - i.e. realisation that the TSH range doesn't apply to those on therapy, and that at least FT3 should always be a main diagnostic instead of being ignored as it is today.

  • When you hear these arguments, it's always on the assumption that following your GPs treatment plan is NEVER dangerous, or that the NHS DOESN'T EVER kill people.

    Which is an enormously naive position, as we all know. I know a great number of people who have been made more ill - usually by being given treatment for an illness they don't have, while the real illness progresses unchecked.

    Babies seem to be particularly unlucky! I know several who would have been dead, aborted, or permanently disabled if their parents hadn't don't their own research and chosen a different treatment.

  • Sometimes doctors can't even diagnose what is in front of them! My husband had a very painful elbow which was very red and swollen I said you need to get some antibiotics and painkillers for that. Made him an appointment doctor looked at it and decided he only needed painkillers. He told the doctor that his wife said he needed antibiotics and doc said well has she got training in healthcare? (No just common sense and had three children) No better after another week went to see a different doctor who used to work in a&e said I would have given you antibiotics and anti-inflamatories immediately. He said he saw it quite often. Most of the time you know your own body and how to help yourself! Anyway half the time if you saw the pharmacist they would say see the doctor so why waste more time?

  • Thank you helvella, a brilliant post.

  • How did they measure reflex time?

  • The contents of the article do not apply to what we do here. We already know our illness and are doing our best to make sure we get and maintain adequate treatment for it; as well as to help others in need do the same.

    Conventional medicine has a protocol that fits Big Pharma's agenda to make the most money in the least amount of time. For the most part, modern day doctors are prescription writers: hit men for Big Pharma.

    Complain about anything and you are guaranteed at least one more prescription that is not in your best interest to take.

    Vitamins, nutrients, stomach acid, the right thyroid hormone for the job (one size certainly does not fit all) -- yet the one size that is touted to fit all is being pushed because it is the most profitable.

    After forty years of terrible suffering, I have extensively researched what is really happening with medicine and the thyroid gland. This has led me to believe that we are the cash cows of the medical industry. If we all get straight with our thyroid hormone levels by being treated properly, then a myriad of ABC syndromes disappear (along with the money thrown at in the way of pills designed to treat each one).

    Why would the medical industry shoot itself in the foot when it's got the greatest golden goose that ever lived?!

    It won't.

    That leaves us to treat ourselves with the specific thyroid hormones and at an adequate amount so that we feel our best. We learn how to ensure we are absorbing our thyroid hormone replacement and take the necessary vitamins and supplements that make the most of what we take.

    It may take a while for many to get there, but one day you wake up and realize that you know best!

    We have always known best -- we just have to be knowledgeable enough to recognize total indifference from the medical community (it's not just you!) and have faith that your desire to be well is your greatest motivator to become your finest advocate for total and proper care.

    Then we work on the matter of getting well.

    The first thing that diminishes is the irritation to one's inner peace as doctors who know not what they do continue on the same path in every direction when it comes to we with thyroid issues. They are brain dead in this matter as every medical school teaches the same thing and those very things have their largest benefactor in mind: Big Pharma.

    The article is more about the average person who has an ache here or there and grabs their spouse's painkillers to help them get through it. Things of that ilk. Or they think they have acne and decide to take a handful of zinc. I get what they're saying. But that is definitely not us here.

    However, before anyone grab painkillers for an ache that is seemingly unexplained and won't go away...perhaps a check of the thyroid might open their eyes: but only if knowledgeable in correctly reading the lab results! (smiles)

    What a conundrum!

    Shaking my head...again, and again and again!

    Grateful to be here among all of you!


  • I believe the GP system is totally flawed. Until we get away from the rushed 10 minute appointment to discuss one ailment/issue only things are not going to change. There is no chance of diagnosing anything if they don't take a more holistic approach and learn to join the dots.

  • Well I'm afraid that I have self-diagnosed most (all?) of my health issues, but have "allowed" doctors to reach the same conclusions through my constant appointments, and continual begging for help; I was always polite, and certainly never mentioned the dreaded internet.

    However, it took months and years to get anywhere, and I was too darned nice for my own good. I resisted ever saying "I told you so". In all that time, I felt like death, my life was a mess, my family didn't have "me". I won't put up with their nonsense any more and, should I need a doctor now, will be far more assertive and forward than I was.

    We should be able to have trust in our doctors, that they will investigate our health problems, diagnose correctly, and give us the best treatment. And in the real world ...

  • Love this bit:

    “These medications can be addictive and cause other serious side-effects.”

    Like a Doctor has never given a patient something that will cause serious side effects by "thinking you have a different problem to the one you actually have" or by "missing something a pharmacist or doctor would know was important" ?!!

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