Posting test results

I realise that this will probably be unpopular, but may I please urge everyone to think twice before posting blood test results online and asking for help with interpretation from strangers who do not know your full medical circumstances? I am new to HealthUnlocked, and already value its potential for discussing experiences and connecting with others, but I was struck by this advice (aimed at women but still relevant): drannagarrett.com/2017/01/f...

25 Replies

oldestnewest
  • Seeing as you're new to ThyroidUK I would suggest you do some reading. Some of us experience enough patronising from the medical profession and I personally don't want to be patronised by a new member.

    You may have posted with the best of intentions but not everyone will see it that way.

  • True, one should not post them just anywhere, but this forum is very safe place to post your test results.

    No one will advice you to do anything if you don't provide full picture of your current symptoms and medication.

    People here are very experienced and would never advice you to do anything before you have had full check up and ruled out other possible illnesses.

    I feel 100% safe and secure posting my test results here and have gotten excellent advices, help and valuable information I would not have gotten from any doctor l have met. Tips and tricks how to help myself has been worth gold.

    Experienced members here NEVER encourage people to do anything potentially harmful.

  • Lady_eve,

    Dr. Anna Garrett wants to sell consultations and possibly tests and therapies so she would say that wouldn't she?

    Why do you think interpreting thyroid results, vitamin and mineral results requires knowledge of the member's full medical background?

  • Sorry lady_eve but I really value the help, suggestions and experience provided by the members here. If it wasn't for them, then I wouldn't be taking my health into my own hands and now pursuing treatments which have helped me tremendously when the so-called doctors had failed completely. I'm sick of 25+ years of being patronised and ignored by the doctors - the amazing knowledge and experience of people on this forum has finally set me on the road to recovery.

  • You are right this is not going to be popular, the menopause is a natural process that some women sail through whilst others have a horrendous time, It has good Doctors and specialists and a variety of treatment options a lot of which do take months to take full effect.

    This forum deals with people who have thyroid issues, and is one of the few unbiased sources of information on the subject for the large number of patients who are being treated by closed minded and plain ignorant Drs and specialists who do not even know how to interpret the tests they are using correctly and insist there is only one possible treatment and everything else is dangerous quackery. Ill bet most menopausal women dont get treated by someone who actually specialises in diabetes like a lot of thyroid patients.

    If you actually read the posts you will notice there are mainly two types of response, those based on solid scientific research and those who relate their own experience (the vast majority of whom stress it may not be the same for everyone). Most of the regular advisors on here post their 'history' on their bio so you can see if the advice comes from someone in similar circs.

    Through posting my results I was advised what my GP should prescribe to correct a vitamin D deficiency, so when she got it wrong (maintenance dose not loading dose)I was able to go back and challenge her, she checked with pharmacist and I now have the correct prescription. My GP is one of the better ones she can see beyond numbers to the actual patient, a lot would have acted like an outraged virgin for daring to challenge their knowledge let alone point out they were actually wrong!!!!!!!! If certain vitamins are not at optimum levels then the one-size-fits-all treatment of levo thyroxine cannot work properly, and I am one of the lucky ones it does seem will work fairly well for, you would expect GPs to know this basic fact, the strangers on here certainly do.

    I will be sticking to the advice of extremely well self educated strangers thank you.

  • Well, if you're still stuck in 'doctor-knows-best' mode, maybe you shouldn't be here. Because that's not what we believe at all. And, flitting around Dr Anna Garrett's web site, I think she could benefit enormously from doing some reading on here. So, I wouldn't pay too much heed to anything she says.

  • lady_eve,

    Caution is very right and proper.

    Dr Anna seemed to be very gung-ho, about treating, as her very first client, her trainer.

    Dr Anna is not a medical doctor - I can imagine many medical doctors asking her what she is up to!

    When we see a member appear to apply a formulaic approach, especially when couched in terms of "You must ...", and (as Dr Anna says) pushing whatever worked for them onto everyone else, we do see disagreement.

    We strongly encourage reference to other sources (be they academic papers, serious health sites, or patient sites).

    We have also heard some extremely concerning advice given by qualified medical doctors, pharmacists, nurses and others who should know better. Sometimes it is only from discussion (here or elsewhere) that people come to realise the inadequacy of their treatment.

  • I think it is good to discuss. Even though the vast majority of us are not "practising medical professionals", what members on here do have is actual life experience of thyroid related conditions and can give helpful pointers at a time when they receive no or little help and advice from their doctors. We do not claim to be doctors!

    But most important of all is giving people help and advice in challenging some of their rather uninterested or mocking GP's or endos who just parrot..."Your tests are normal".

    Also just having some moral support through the depression and brain fog and the myriad other symptoms. I'm a lot better now but I remember those horrible dark days when I just thought it was the end and now I want to help others that the journey might be long but there is light just around the corner.

    If it wasn't for this wonderful forum I would never have discoverd about private testing, what supplements and where to get them and how to try and gain some control over my Hashimoto's with some lifestyle changes amongst many other things.

  • One of the best things about patient-led forums like this one is that mistakes can be rectified far more easily than mistakes from a doctor can be. (I'm referring to relatively minor mistakes - not the kind of thing a surgeon might do that is life-threatening.)

    I read an article once about mistakes being made on a very popular Facebook health-related forum, and the average length of time it took for mistakes to be rectified was 30 minutes.

    If a doctor makes mistakes it can take weeks to fix them, if they get fixed at all. And if a doctor has the kind of personality which doesn't like to be caught out making mistakes by patients the relationship between doctor and patient could be irreparably damaged by it, because doctors have such fragile egos.

    If I make mistakes they can be fixed, and I prefer them to be fixed. I'm not bashful about mistakes - I know they are inevitable.

  • I remember asking my doctor about NDT - she said she had never heard of it - Bye Bye doc. I feel much better since self medicating and the knowledge to do so has come mainly from shared experiences from other thyroid patients on sites like this and STTM. I never take anything anyone says as gospel , just as an informed opinion based on the evidence presented. Some more informed than others, but just as valued. In the end , it is down to me to analyse my situation in relation knowledge based on actual evidence and make my own decision. Funny how since doing this I have improved greatly , and so have my lab results.

  • JS33 My dr told me only a few months ago that she'd never heard of T3!! When I mentioned this to a more senior dr in surgery he said 'I'm sure she does'. (Well she told me she didn't) He didn't like that. They are taught nothing but t4!

  • The NHS promote their " Expert Patient Groups " because you need to become very well researched in your own health issues, GP,s as we know cannot be up to speed with every disease / illness and patients often have much more time to read and research.

    Without the help of Lyn Mynott of Thyroid UK I doubt I would so en be here now....That's the bottom line.

    Ongoing help from members who are now feeling well enough to unravel some of my own issues has been invaluable...I have been too ill to interpret my own results.

    I second the comments made by others in reply to this post and absolutely thank all the members ( admin too ) for the help so freely offered and given.

    If the healthcare system here in the UK made it possible for us to be treated by knowledgeable doctors and specialists looking at the overall picture not just a set of blood results we may not have such a massive need to self treatment...Sadly many doctors do not know or have enough time or will not treat functionally so we NEED forums like this.

    Lady_eve, I can only suggest that you take great care if you are going to believe advertising like the site you directed us to, as said this person wants your money !

    Ellj

  • You will get far more knowledge, expertise and compassion on thyroid issues here than in the majority of GP's surgeries. The admin carefully watch the posts, advise and offer very knowledgeable responses based not just on knowledge but also experience. The members are caring, many very experienced in the trials and tribulations of medication and interaction with the medical profession. Many things are aired and discussed on here and support is always available.

  • I would never have imagined myself discussing my health online with strangers until I experienced an illness that didn't respond to conventional medical treatment and I was left in a state of unwellness, with no further treatment options offered. Let's face it, people wouldn't be drawn to patient forums if they didn't feel let down by conventional approaches.

    I did find this jewel on Dr. Garrett's website: "She helps women [...] so they can rock their mojo through midlife and beyond." :)

  • Ditto everything other members have said 😇😇😇😇.

    Do our doctors refer to our previous medical history before giving out a diagnosis or telling a patient everything is normal? Because if they did this forum wouldn't be needed in many cases. It is the fact that they *often* don't join the dots that members like those of us who have joined the forum are finally able to get back some or all of our health.

    As someone approaching the menopause, too many symptoms are often wrongly associated/dismissed with that, when in fact the underlying issue is another medical or diet related matter - thyroid being high on the list.

    Before posting my results I spent a *lot* of time reading other posts and responses before hand. I suspect this is what many others do as well, perhaps you didn't.

  • Dear Ladyship,

    I agree with everything other HU Members and Admins have already said. Why have you come here if you believe doctors know best? I have received a lot of support and good advice on this forum and I'm very grateful that it exists.

    Good luck to you.

  • You surely cannot be having problems yourself that have driven you time and time again over years to your GP for help and not getting any. I am having to now help myself as I have not received any support or treatment from the "professionals". The advice I have received from the members here has been invaluable and I have learnt more since joining this site than I have by consulting my GP.

    I wish you good luck because if you are feeling tired of being sick like a lot of us, you are going to need it with your views.

  • Many of us are here because the medical profession has either failed us in the treatment given or have ignored us. My doctor admits to not knowing about this but at least backs me going elsewhere and gains my respect for that. Got to be a lot better than stumbling about aimlessly.

    I have learnt such a lot from the experiences of others and because I do my homework and read a lot I feel more confident in picking out what to try first but that's what forums are all about, learning, sharing and hopefully moving in the right direction. The sharing is t just one sided as we appreciate we need to pass on both the positive and the negative so as individuals we can question and make up our own minds once we understabd the facts. It's a learning curve for everyone with pointers and suggestions thrown in. We are not saying we are perfect or know it all but sharing our experiences can often be helpful to others.

  • Lady Eve, we take great reassurance in each other on here - reading others dilemmas and symptoms - the administrators on here time and time again reiterate they are not medical practitioners but do have a vast knowledge of thyroid disorders. Their input is great for us that need the push to go to our GP's and not just accept their first answers to our symptoms. If you don't like our responses I suggest you don't visit again

  • I'm new to not only this site but to any site! I'm really thankful for everything I've read. Tomorrow I will have a private and comprehensive blood test for my thyroid and vit and mineral levels. I can't wait to post the results here. I don't understand all the terms used and trying to grapple with them with a heavy and foggy mind is hard. But nevertheless I feel inspired to try and really feel that this site is God sent. I'm 66 losing my hair and what's left is bone dry and brittle. I'm so tired that I can't really function after 1pm. Skin's dry. Nails are thin and flakey. Wake at 3am with a racing mind. My short term memory seems to have disappeared my voice is dry and hoarse and I cough all the time. I've been to almost all the gps in the practice and the symptoms all seem to get looked at separately. They say TSH is normal and therefore they're "not allowed" to further test for T3 RT3 and 4 or antibodies.

    Sorry for the long lament. ..

  • Myself and I believe others who post their results on here do it for advice off of other members, but when I say advice I DO NOT mean medical advice, usually help with dosing rates of medications used by other members, supplement recommendation etc ... I have only been a member for around a week and the advice and aknowledgement I have had regarding my condition has far better than any lieing or statement fabricating doctor/Endocrinologist ... I'm with cinnamon_girl on this ... I'm sure you mean well but in effect that's exactly what these forums are for, to share and compare each other's experiences with Dr's, blood results etc so that we can help each other further

  • lady_eve By now you have got the message, I am sure. You are entitled to have your own views. As are we all.

    If you are a new member, with a thyroid condition, I would advise you to read through other treads on here, you will soon see that most of us have gone through hell and back, trying to find anyone/someone to help and support us, in trying to overcome the effects of a conditions that, left untreated or mistreated, can, and does, lead to a myriad of debilitating symptoms, and premature death.

    No-one is considered medical on here. Yes, some have a very good understanding of the blood tests and can interpret them better than any GP I ever came across, in my 35 years of trying to get help. We are here to offer support to each other, and to maybe share what worked for us, for others to consider.

    Bear in mind, that by the time we join forums such as this most of us have gone through decades and even whole lifetimes of struggling to find something to work for us. Failing because too many GP's refuse to acknowledge that all these other developing and increasingly debilitating symptoms can be linked to our thyroid conditions. Diagnosed or otherwise! Preferring instead to test for everything but the endocrine system, and when all comes back clear, declare us manic depressive hypochondriac! Leaving us too ill to work and live, and frankly, without a 'care'.

    Unfortunately we are fighting a system that seems determined not to help, but to hinder, by removing all medicines, other than T4 from prescription. They have already 'grandfathered' NDT, and are now trying to do the same, with T3 - banding it as a low-value/benefit, over the counter medicine. It is anything but. It is THE only alternative left for people where T4 alone does not work well, and for those who cannot take T4.

    Many have had their T3 cut, with nothing else on offer, because of the recent, ridiculous, price hike.

    Others cannot take T3 either and are on here, trying to source and self medicate on NDT.

    Dr's say they know more about they thyroid now, than they did 15/20 years ago - but they are not changing their treatment accordingly. Only making it harder for people to get the treatment they need.

    So please, if you have a condition, find out all you can before coming on here, trying to advice people who have spend years experiencing this condition and all it's hinderances.

    I think your stance has shown, the dangers of 'You can read anything on the internet'. The rule of thumb is to not take what you see on the internet as 'read' but to continue to research and build on 'reliable' knowledge, through studies, books and charities, until you have a more balanced view.

    If you are ill, I am sorry, I would not wish that on anyone. If you need help, this is definitely a good place to get it.

  • Lady eve,

    Dr Anna Garrett is a Doctor of pharmacy? Not a medical doctor? And yet she is a menopause expert? Clearly having had no clinical / patient experience as a junior doctor, intern, registrar.

    She is a self declared ' expert' . Has awarded herself Consultant status......

    Please correct me if I'm wrong.

    Here we do not masquerade nor tout for business.

    We are here to SUPPORT each other and provide a very necessary safe place to offer constructive guidance. Our administrative team work tirelessly to ensure that guidelines are adhered to and that no one is cavalier.

    Please take some time to browse the site. I'm sure you will be overwhelmed by its approach and community.

  • People will often get far more help on here from personal experiences than from Medical sources;many GPs are more than unhelpful, have fixed rigid ideas or simply no experience or knowledge. Therefore it is up to the individual and l consider your comment very unwelcome;

  • I want to be very clear that I am not in any way opposed to drawing on the experience of fellow patients. Why would I have joined here, if I were? Several of those who have replied here have assumed that I am stuck in "doctor knows best" mode, which is actually almost funny if you only knew how fed up with me my doctors actually are. I am very familiar with the sense of beating my head against a brick wall trying to get a doctor, any doctor (NHS and private), to take my thyroid and adrenal issues seriously. I am currently in a war of words with my local Clinical Commissioning Group about future prescribing of DHEA, which I've posted about separately. I've been told my condition is all in my head and offered antidepressants more times than I can count.

    But I do believe that each of us is, ultimately, responsible for our own health. For me, that responsibility means not entrusting it to anyone else, whether it be intransigent, misinformed medical professionals or anonymous strangers, no matter how well-intentioned.

    And I do think that medical background is relevant, when a number of drugs and conditions can alter thyroid function and test results (e.g. bit.ly/2oKUi9f and Thyroid UK's own page, thyroiduk.org.uk/tuk/treatm...).

You may also like...