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;
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
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?
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 🙂
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.
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.
" 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.
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?
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 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!
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!
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!
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 😂. How are you? Xxx💙
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 💕
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 💕💕 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 💖🌺
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 xxx💕
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 😖 even more. I actually spoke to my own gp yesterday re my tests and he was brilliant. He explained what was the normal range. 🙏🏻. Try yours i find they have more time for me. Hope you get the answers soon. It's frustrating. Best wishes. Sheri ☺
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