the reason why we ask people not to post medical results and specifically blood results on here

Dear all,

Please be aware that the reason why we ask people not to post medical results and specifically blood results on the forum is primarily because it is a safeguarding issue.

Liver function test results have widely variable reference ranges and it is vital that individuals receive the right medical information from the right medical channels. It is always you and your own clinical professionals who have the full picture of your general health and the context of any test results.

It is also a condition of being allowed to run this forum on Health Unlocked that medical advice cannot be sought or given. Please see the link here;

support.healthunlocked.com/...

We very much support and promote the sharing of experiences and valuable support that the forum provides, but please be aware of the conditions we all operate under.

Best wishes,

Andrew

Andrew Langford, Chief Executive, British Liver Trust

48 Replies

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  • hiya. Rebecca once sent a link on a post re blood tests that was by this site. Thought i had saved it but hadn't. Messaged her earlier but she must not be around. Do you have that direct link by any chance please?

  • Hi Sheri44,

    I have just messaged you the link, and for anyone else here is the link to The British Liver Trust's 'Liver diease tests explanied'

    britishlivertrust.org.uk/wp...

    Very best wishes,

    Rebecca

  • thankyou so much Rebecca πŸ™‚

  • You're very welcome :)

  • Yes I'm sure a lot of people on this site with longstanding liver issues are well aware of the safeguarding aspects but not people new to liver disease who are possibly ill informed (as I was) And sought guidance on this site from those with experience. I've lost count of the number of people who post the same issues "what does this raised enzyme mean?" Why do they keep asking these questions? It's because it's not being explained! We could of course google it all instead. Seems to me this sites worth will be diminished if we follow these rules to the letter. We'll see.

  • If these are HU rules they don't seem to apply to other HU forums where members asking for advice on blood results is the number one question.

    Sad to say that we cannot rely on doctors giving us the information, it just doesn't happen for many people so we have to search it out for ourselves.

    We aren't asking for a diagnosis, just an opinion from those more experienced.

    I run a forum for a relatively rare disease (not on HU) and all our members join us for help, advice, information and confirmation that they are justified in being concerned about their test results, they want help from those who have been there and know how they should proceed if their medical team are dismissive.

    I agree with briccolone, with new members unable to ask for basic advice and opinions they will either go elsewhere or be left floundering and the forum may well struggle without fresh opinions and experiences coming in.

    I don't really have a place here because I have no diagnosis, all I have is 10 years worth of elevated enzymes and disinterested doctors. I have this week had an MRI and a long list of new blood tests but it seems I am now unable to ask for further opinions on results so I will have to muddle on as usual :(

  • it annoys me how i get a letter with my results on and I'm expected to know what they mean. I've googled before and it just confused me more. I wish the docs would explain this in clinic without sending a letter and putting for eg. Enzymes dropping rapidly? Er ok why didn't you tell me in clinic? Frustrating but i found this link very helpful. Thankyou again πŸ™‚

  • The advice in the Health Unlocked 'Help Centre' specifically says 'HealthUnlocked cannot give out medical advice.' Fair enough, Health Unlocked is a business, not a qualified medical professional, and I can fully understand why they would take that position. But it doesn't say forum members are barred from discussing their test results anywhere I can find.

    This is a very specific and narrow interpretation of a general statement of what Health Unlocked, as a legal entity, is unable to do. If Health Unlocked do not want forum members to discuss test results it should say so explicitly, but that is a different thing entirely. Does it also mean people are not allowed to comment on other members symptoms either, and say 'I had that as well, and this is how it played out for me?'

    Heavy handed censorship diminishes the value of this forum in my humble opinion.

    Perhaps, Andrew, you could clarify this directly with Health Unlocked and ask them to post their position on this thread, and update their guidance accordingly. This 'rule' does not seem to be interpreted quite so narrowly on other fora under their umbrella.

    If this is going to be the way of things I may decide to close my account, because I will find this a stifling place to be.

  • I think you are right Chris, the statement does say HU, not the forums within the community. This should be clarified with HU before everyone jumps ship !

  • I am an admin of another FB site , where we acknowledge we have no medical experience or qualifications. However saying that , on this site and the one I admin on we have hundreds of years of experience between us. That experience is invaluable. People do ask for guidance , and as long as its acknowledged that every lab has different ranges, and the persons knowledge is that of a lay person, I really see no harm only benefit. Reassurances and lifestyle advice can only be of benefit . In my own personal experience and that of many others the knowledge we have garnered is at times better than a GP , who has a few days training in liver related issues. A good heptoalogist is worth their weight in gold however , sadly they are not on hand between appointments to answer queries , and few facilities have any sort of clinical nursing aide which can. I would rather a person turn to a solid and valued forum , than google results and scare themselves half to death. This is purely my own opinoin , but I know this site and many others are very well run , and the members hold the key to that invaluable resource.

  • Perhaps HU, with its interpretation of rules should rename itself FIFA?

  • Very true..every person has a very unique chemical and DNA make up..so what might be ok for one person might be bad for another.

    It is good to share information..but really, one must trust their specialists. Once and while you might find a bad apple in the bunch, but your GP can and should give you a referral for a heptologist or liver specialist should you need one.

    When I first got here, I went to see the GP within my first five days. I did have medical info from the US, but he referred me sytaight away to our smaller local hospital. Broomfeild. I went to see them twice. I developed varacies after being here for about 6 weeks. The specialist at Broomfeild had been trained at Addenbrookes. He sent me straight away to Cambridge, worried that now I could no longer fly without risk, out of the country. Since then, here it is three years later. I have been lucky with referrals and getting the help I needed right away. The NHS may have its faults, but to be honest, I've not seen a one.

    My results may seem good to others..the blood work ups, but they maybe bad for me.

    Just this week I was told that my last two visits are showing jaundice. It's only slight..but since the line for it has been flat and not moving for over a year, that slight movement is a problem. Now, it would not be for most liver patients, but for me, it's one of the things triggering my December assessment for a new LTX.

    I think as long as we precise our responses saying we are not doctors nor medically trained, that should cover, as far as liability goes..right?

    Comparing notes is so helpful! But I often encourage new members to look up and download the pamphlets, which are so helpful. My partner and I just did that for my HE and I got all the info I was looking for, that I was having a hard time understanding at the doctors!

    I do hope this can be resolved..but I won't be leaving the forum..I want to be someone who can pass on the help that I received.

    Let's not jump ship everyone.

    Let's encourage folks to read the pamphlets here and speak to their doctors..but I know I would miss so many and all the kindness and support.

    Cheering everyone on!

    Please keep us updated!

    Kimberly

  • " They have no business on this board unless they do in fact have liver disease"

    Ouch Kimberly that's a bit harsh, those of us who haven't yet got a diagnosis have come here for opinions, that is what forums are about. If this forum is exclusively for people already diagnosed and all others are to be excluded then the forum will dry up.

    I do know what its like to have a serious illness, I have been there, I hope some of your comments were written in haste and don't truly reflect how you feel about others struggling to get help. Im sorry but your comments are quite hurtful.

  • Sorry, maybe I wrote it wrong..I mean people who are hypochondriac. NOT people who have yet to be diagnosed.

    I'll edit my comment. But I'm not kidding about those who have mental illness as it pertains to hypochondria.

    They are part of the reason in the US we have such high medical insurance and bills, etc.

    They do need access to boards, but not this board.

    Sorry to disappoint you!

    I can't be perfect all the time! God knows, I do try..lololol

    xoxo

    Kimberly

  • Hi Kimberly. I am a big admirer, and I hope you are not upset with all this. I feel a bit responsible if you are. :-(

    Now then. Socialised health care versus privatised health care? That's a big ol' can of worms I think I will leave for another day.

    Take care. All the best, Chris

  • no no, I'm not upset with anyone..I promise. I feel bad if I have disappointed any of my pals. No one is responsible for my feelings..only me, Chris, and I don't even know what your speaking about..lol.

    And I know Bantam has a serious illness, so it was most definitely not aimed at him.

    I think I was trying to get my point across about a certain group of people who need different kinds of help than offered on this forum.

    I should not have even brought it up. Now I feel bad I did.

    I was trying to point out that some people are looking for something that is not there. I've seen that in Clinic also. Here in the UK.

    And Chris, I'm a big admirer of yours also..I believe we just had our one year LTX anniversary last month..right? Mine was the 19th of October.

    Again, I'm so sorry I brought it up. I was trying to correlate something that came out wrong and was probably unnecessary to begin with!

    cheering everyone on!

    XO

    kimberly

  • Hi Kimberly, don't worry I only felt a teeny bit responsible for contributing to kicking off a bit of an argument there. :-)

    I hadn't realised but you are right, we do share that particular anniversary. I had my transplant over the night of the 8th / 9th October 2015. I hope you manage to get the next one sorted out soon, and that it works out well for you. All the best, Chris.

    X

  • hugs you..you did not kick off anything..we all have the right to respond and talk about our feelings!!

    oxoxox

    kimberly

  • ok come now you are perfect all the time....

  • With the exception of keeping her friends informed when they are worried silly and she merrily goes A.W.O.L..

  • I tried verrrrry hard to be a good egg, not a sour grape! Oh wait..I'm the pickle...

    Hugs briccolone and my terrible tillycindy

    XOXO

    Kimberly

  • get better you...

  • Don't think she does mean that bantam jk normally very considered but that's the nature of forums you have to sort the wheat from the chaff

  • no your correct, I in no way meant Bantam when I wrote my reply.

    I certainly was not trying to offend anyone.

    I try very hard to be encouraging. As I said above to Chris, I regret having tried to make a correlation, as it came out completely wrong.

    hugs,

    xo

    kimberly

  • Leaving the forum over this would be a shame.

    I think we can still have a great informational resource here and a great source of support for others and follow the rules at the same time. Perhaps some of these suggestions could help?

    Ideas on how to help people without unintentionally giving medical advice

    1 - The Disclaimer - state up front that you are not a doctor, that your comments are not intended to take the place of medical advice, that the best route is to seek professional medical treatment, etc.

    2 - Avoid Giving a Diagnosis - share your own individual experience instead. Instead of saying "you have xyz disease, because of xyz symptoms", it is better to say, "I had similar symptoms and my doctor diagnosed me with xyz disease. Perhaps you could ask your doctor about what possible diagnoses you have, and ask what additional tests might be needed to know for sure"

    3 - Avoid Giving Instruction - share your own individual experience and then direct that person to discuss with their doctor BEFORE trying it. For example, "What I found helpful was to take xyz capsules. Perhaps discuss with your doctor if xyz capsules might be helpful for you too?"

    4 - LINKS - try to avoid stating things as a fact based on your own knowledge. Instead, say, "according to this website (insert link here), elevated ezymes could indicate liver inflammation. Perhaps you could confirm this with your doctor?"

    5 - Usually, generally, often, and other qualifiers - which statement will be less likely to get you into trouble? "High enzymes mean you have cirrhosis" or "Generally, high enzymes could be a sign of possible cirrhosis. Have you discussed this possibility with your doctor?"

    6 - Give doctors the benefit of the doubt - almost all of us have had disappointing or frustrating experiences with healthcare services. But, when people share their concerns, we are only getting one side of the story. If something sounds wrong, encourage people to ask their doctor for clarification.

    7 - Read it again before posting - after writing a response to someone, read it again, but pretend you are a ruthless lawyer trying to sue someone. Is there anything that you have written that some one could later use against you?

  • Hi Chynablue. You know what, I think you're absolutely right, and I have usually been very careful in doing pretty much what you have suggested. To be honest I wrote that comment about closing my account out of a sense of massive frustration at 1 o' clock this morning because this is the second time to my knowledge we have had this debate on here, but I do mean 'may' and not necessarily 'will'.

    I am still very annoyed about this. Not so much for my own benefit, but what really enrages me is when people who are obviously desperate, and at their wits end, ask a question and get told by one of the admins they shouldn't have done it and to go back to their GP. I can't imagine they would be on here asking the question if their GP had explained it properly in the first place.

    I am not saying 'go back to a health professional' is bad or wrong advice, of course it isn't, and as you have very eloquently set out in your contribution, there are nuanced ways of giving them an answer which does not constitute medical advice, is consistent with 'sharing experience', and may help them a great deal to both frame and make sense of their next conversation with their doctor.

    One of my friends, I won't say who, told me they could have died because of what they were not told by their doctor about their bloods, and they came here and got some advice that helped them sort things out. That sort of thing chills me to the bone, but it is real and it happens all too often I think.

    As I say, I believe you are right. Let's just see what happens.

    All the best, Chris

  • Good points, Chris.

  • Yes I find it very frustrating. I also find it slightly patronising and quite hypocritical when BLT are also trying to recruit someone to talk about high energy drinks in the Sun of all places. Where sensationalist health scares and latest super food's are a weekly occurrence.

    I'm going to get told off for this :-)

  • Not by me mate. The Sun? Seriously? I wouldn't use that to light my stove. I'm going to have to go have a lie down!

  • ouch! The sun? High energy Drinks? Aren't they high is sodium and sugars? My dietician would have a fit if I drank those!!

    hugs

    kimberly

  • Good points well made

  • I was never aware we were not supposed to chat about our different blood tests etc..as long as everyone realises we are not medical just ordinary people with our own experiences of a liver disease!!!

    Usually the answers show agreeing or disagreeing opinlons and by their own right give a sensible concensus.

    My gp says i know more than she does but i always temper my answers that im no medic.however as others have said there is much sensible advice and comfort gained from someone with a much higher bld result still being alive and kicking.

    I also have noticed that if someone reveals results that are worrying a large amount of the group will say...SEE your doctor and this proves to me that most people understand the sensible line between shared knowledge and taking it too far!

    Does anyone agree ???

    Yours cazer

  • Yes. 100%.

  • mine too

  • Gets my vote.

  • exactly..we most often encourage people to see their doctors, call them or to go to hospital if it sounds like an emergency..the group is VERY good about that, Cazer!

    cheering you on!

    kimberly

  • Cheers kimberley.xx

  • oh my days i was the one who asked for the link. Now i feel i caused chaos. Sorry. I'm sat on the naughty step πŸ™„

  • Not you again. :-) I seem to remember the pair of us there a couple of weeks ago. All the best, Chris

  • yep me again. Trouble my new name lol. Take care Chris 😁

  • Hi Sheri, how are you , you feeling any better yet, 🌸🌸🌸

  • hiya hunny. Im getting there now. Thankyou. Virus still active no negative blood tests yet. Im bk on Tuesday so ill let u know what they are planning to do at me this time πŸ˜‚. How are you? XxxπŸ’™

  • Well good luck for Tuesday hope you get some good news, I'm fine been in hospital for past week with my 11 year old , just been diagnosed type 1 diabetes can't get my head around it so much to take in , but at least I'm fit enough to look after him which I probably couldn't have done before my transplant, take care of yourself πŸ’•

  • awww no I'm so sorry hunny. Awful. I'm type 2 and it's hard enough but 1 @11yrs old. Bless you both. Hope its not too much of a rough road ahead. Thinking about you both. Pls keep me posted πŸ’•πŸ’• xxxx take it as easy as you can

  • Hi Sheri , ano it is awful poor wee guy has not had it easy , he is also autistic so always been a challenge but he is coping extremely well doing all his own injections n stuff, double checking everything I do haha , fingers crossed for good news for you tomorrow πŸ’–πŸŒΊ

  • bless him. That's so good that he's doing it by himself when he has other problems. Sending you lots of ❀ and to your lil man. Thanks ill post update tomorrow xxxπŸ’•

  • Hello, I joined hoping to learn more about my own results to scared to ask now. Rodeojoe and briccolone and Chris1698 are right. My doc never explains anything. Will plod on with google then.

  • i know how you feel. It's bad that they don't have the time to explain them. In the beginning they did but not now. Letters sent n its look it up yourself but even then you get different answers so confused πŸ˜– even more. I actually spoke to my own gp yesterday re my tests and he was brilliant. He explained what was the normal range. πŸ™πŸ». Try yours i find they have more time for me. Hope you get the answers soon. It's frustrating. Best wishes. Sheri ☺