British Liver Trust
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All followers please read RE: test results and asking for medical advice on the forum

Hi everyone,

Thank you for joining our online liver community.

We have noticed another increase in followers posting test results and asking for medical advice.

This forum is here to share experiences and provide support to each other and we would advise against posting any test results or asking for specific medical advice. This is not a medical forum and should not be used to try and make diagnoses or replace advice from your own medical practitioners who have a much wider view of your health and test results.

Many thanks for your ongoing support and understanding.

British Liver Trust team

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I suspect that when the test results are received, that this can be a rather frightening and anxious time, especially if the the meaning of what each test means isn't clear. I can understand therefore why people post these up on here as they are merely seeking advice and reassurance.

Maybe it would be better to direct the person to a site where they could find the answers. It's not always practical to suggest that someone refers their question back to their respective GP's as for some this could mean a 3-week wait just to ask a question.

There has to be a better way. Any suggestions?

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Hi Richard,

Thank you for your post.

We absolutely understand that people are looking for advice and reassurance regarding their blood tests, however, differences in normal range for different laboratories can make it difficult to compare or comment on individual test results specifically. This is due to the different brand of tests that are used and how these are interpreted.

We signpost people back to their own doctors so that they can receive accurate and specific interpretation that will also take into account people's symptoms, medical history etc.

We have a publication Liver disease tests explained' that is useful in a general understanding of all liver tests;

britishlivertrust.org.uk/wp...

However,there is no online site that will be able to answer people's questions accuraetly, which is why we always suggest people discuss interpretation with their own medical team who have a much wider view of people's health and test results.

Thank you for your support and understanding.

BLT Admin

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Many thanks for your reply. I have read the the BLT's publication and it's very informative.

When I joined this site, it was after I'd had my transplant. I had access QE website, "myhealth@qehb" which was very useful and informative. Here I could monitor my own readings. There is/was clear instructions as to what each of the test is for and next to each reading there is a link for further information. This information could be viewed in a graph format which is very useful.

Sometimes being able to see something for yourself can be better than just being told about it. But, here comes the rub as I think you'll agree, as the saying goes, "A little knowledge is a dangerous thing".

Well done BLT

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Thanks Richard,

Access to the QE website was obviously under the direction of your transplant team. This would not be appropriate for all people to use and access, as everyone's medical conditions and liver diagnosis vary so greatly.

We are really pleased to read that you are recovering so well after your transplant and thank you for your ongoing support,

Best wishes,

BLT Admin

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Actually I agree with you Richard 64.

When people get results they are concerned and frightened. On a minute to minute basis.

My experience of this forum is that when they post their results they are always told that they MUST discuss them with their doctor(s) and that advice received here cannot replace proper medical advice. They are nearly always warned about normal ranges too.

However I have certainly benefitted from reading people's views of results as they have come from real experience and those observations have been very helpful to me in guiding my own research into my results, guiding my questions to my doctors or helping people genuinely in crisis on this forum.

I understand the point of view which insists that these things not be discussed here but with some oversight I don't think that anything has happened on this forum that is untoward. Certainly nothing that would cause legal problems in the UK. The US might be another matter. People do discuss their results. It's natural and it helps them.

I would strongly urge finding a way to tolerate - not encourage - discussion of what results mean when people really feel the need. The current stock discouragement post - "discuss with your doctor etc" seems to me to be totally sufficient.

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Mr x before I got brave enough to join I kept seeing u come up a lot and I kept thinking wonder if his on hear as u gave proper advice.and I thought you reminded me of an actor.

I

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Sorry if it was me really got bad nerves got to go hospital have endoscopy today last time I had a ear infection and they said they do it and my go and I have letter off neuro dr saying I need upmost management of liver and mental health we'll see if that happens anyway I'm starving thirsty and it's only coz I not allowed nothing .!

I already had one on March but me being sick and I'm not all that with my bloating ,anyway hope all you lot are ok and thanks for everything I be about 2morro .

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Please do not apologise Faithfull. This is a general post to all followers not directed to anyone specifically.

We hope your hospital tests go well,

Best wishes,

BLT Admin

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Thinking of you. All the best for today x

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Good luck faithful.

Gx

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Thank you you alright I was thinking about you and Lynne it's like I no ya but don't if u no what I mean

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I totally agree with mister x, I think a blanket response of don't put results up/ see your Dr is clearly not working.

Most often the results people post are only marginally raised, ( if they include normal values), so being able to reassure someone that a one off test doesn't mean they are necessarily very ill can help someone greatly. If you are new to health problems and get results which are ' abnormal', your first thought is that its serious, so an experienced patient explaining that the Dr will need to see a series of abnormal results to be able to decide on a course of action, may help that person to calm down.

Also, I've had liver disease for more that 10 years, so when someone posts a very slightly raised result I'd like to be able to share with them that this initial test may only be a blip, and not to worry until further tests are done. People don't realise some results will be 10 -20X normal before they indicate serious problems.

People usually get referred to the BLT site for info on tests, and are made aware we are not medically trained. I think forum members are usually responsible enough to advise without misinforming people.

As so many posts are about results I think a solution rather than a ' reprimand' would be more helpful!! I'm very grateful for this forum, and to the BLT for your excellent website, and support / hosting this site. Thank you.

E.

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I like your post

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Can I️ just say that on the thyroid sight, everyone posts their test results and it has given many many people more help and advice than any doctor has given. Suffering with an illness and each individuals experience is worth more sometimes, as doctors often see u as a number. That does NOT mean you don’t go to your GP. Obviously they are the only ones that can help medically, but asking for advice on here should be up to each individual. If I️ hadn’t taken advice on the thyroid sight regarding test results then I️ would of taken my Gp’s say so that nothing was wrong. I have since been diagnosed with autoimmune thyroid disease and on the correct medication and also have gone for further tests showing liver antibodies. I️ am waiting my fibro scan.

I️ am just saying that posting test results is not anyone asking for medical advice, it’s just asking for some help from those who have been through or going through the same. People are scared and frightened and the help here could be the key to settle their minds and the knowledge to push for further tests.

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I think in away, that there is a problem with the whole NHS system.

In order to explain please allow me to tell of my story. When I had my variceal bleed back in 2014 I was admitted to my local hospital at North Staffordshire. The only way my GP got to know about this was when the consultant wrote to him. Doctor's practises don't have access to the hospitals data so they can't get to see for examples xrays of blood test results. When the hospital discovered that I had tumours on my liver, I was referred to the QE in Birmingham. Any communication about my condition was done by the consultants writing to my GP and copying North Staffordshire Hospital in on the details.

I later went on to have my liver transplant carried out at the QE at Birmingham. I am now 13-months post opp and I go back to the QE every three months or so just for tests and follow up appointments. The QE have a facility whereby a patient can log on to the "MyHealth" website, and review their own blood test results. This is a very good options as a person can monitor their own recovery and see how well they are getting better.

Now, here's the rub... This information belongs to the Birmingham NHS Trust. These trust's doesn't share information to other trusts, so the North Staffordshire Hospital which is a different NHS trust doesn't have access to this information, and neither does the poor GP. So, If a person was to have a high AST or ALT reading and they suspected something might be wrong, then there's no point in them going to their GP as they just wouldn't have access to these figures.

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Sorry about my answers before but I thought that you was on the complex PTSD site I keep getting confused ,and hoped you no that I didn't wanna say to much as of worry. And also I totally agree nhs I cannot describe how many mess ups they made and I'm still in state some one tell me what's next how can I do better but my blood dr said was great since 2months ago blood.

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Good Morning Faithfull, you have me worried about you. Do you have trouble sleeping? I ask this as at the time I'm writing this it's now 09:03am and I see you posted up your message 5 hours ago. This means you wrote it at 4:00am. What aren't you asleep????

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No I got insomnia had it on and off years ,not to this degree .since the liver and I'll etc to many things making me own body and mind I feel like it's confusing enough but mentally physically drained of constant pain .

I sound so miserable sorry.

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Please don't be sorry. You really are having a rough time. Do you have family and friends were you are who can offer some help and support?

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Only adult daughter who has worse mental health than me so we both don't get nothing as the idiots they sent round do nothing but send u to some thing else that can't help as complex PTSD COMORBITDITYS IM LOST IN THE SYSTEM AS MANY OF US ARE thanks for asking and I'm gonna try sleep as I'm bit low just thinking about how can I stop this liver getting worse but I no to many yrs of drink dependent on it And now I'm doing all I can no drink 3yrs but liver getting worse

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I really feel for you, and I have a genuine concern for future suffers of PTSD.

A lot of soldiers experience it after their experiences at war but it can happen to anyone after a traumatic event - and it can surface years after the incident that caused it. The use of alcohol to try and block out the memories is becoming increasingly common. So that person you trip over sleeping rough in our towns and cities are the one's that are allowed to fall through the cracks, and we just look at them with disgust and contentment, without bothering to understand what it is that that person has been through.

BBC Radio 1 has got an advice page, but you most likely know all this Faithfull: bbc.co.uk/programmes/articl...

Good luck hun. xx

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Thankyou I really appreciate that . Still got insomnia had bit sleep ,hope your feeling ok . I didn't no about that link only started to watch tv again recently seven yrs rarely watched. But thanks again I look at that thankyou.

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Hi faithful

How are you and your daughter doing? Are you getting any help yet?

Gx

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Had social worker in she referring me back to mental health I said I wanted me and daughter to be seen together as we are struggling and need support to support ourself their is not a hope in hell of getting a advocate in any every thing i phoned never a day goes by the area is nightmare but I'm keeping on at them as I can't gob another yr like this house und .

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No help no luck just holding me head Above water.

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Am I right thinking you come under the Essex area? If you do contact 0300 3435736 there are a few agencies who have come together to help people with advocacy matters.

Take care

Gx

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Thank you so much yes I'm under the queens in Romford also they would not except ambulance on Thursday as could not take any more patients I had to go kings to be sent home morphine then pain killers three days and he said blood ok but I've had swelling and pain bad enough as I hate a/e six hours waiting they was over worked he said I need a ultrasound I get it in a week that's if they remember as my hip was left so long I have less pain but still can't walk far I don't want them to leave me again before its to late . Thanks I'm gonna call them

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I hope they are of some use. Does your daughter have to help care for you? I ask because they have some family carer services. They also have some mental health support.

If you can write down what you need and what your daughter needs it might be easier when you talk to them.

Thinking of you

Gx

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Yes we have to help each other but we well me I'm finding it so hard to interact or even with the dog it's like I feel lost and 24/7 no one leaves property I go hospital home as you no it's like I gotta keep shouting or I won't be heard .im feeling so drained it's like I got flu coming all the time and me body hurts sorry I'm always full of woe .

How are you hope weekend went ok x

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Take care and good luck.

Gx

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