Obsession with test results - best left to the medics!

Hi everybody, I have Alcoholic Cirrhosis and am sorry I ever let drinking get away from me. I had decompensated liver, associated jaundice, bad ascites, oedema and spontaeneous perintonitis, however due to the care of all my doctors and nurses in the midlands area I am improving although still ill with muscle wasting, pain and fatigue. I do not drink, nor will ever again, nor miss it at all since finding out how ill I had become - apparently very near imminent death. I am puzzled by a lot of people's obsessing over the minuiti of their medical results, and use of medical abbreviations which I have no idea what they mean - I have not received my results in this medicalised way, and quite glad too as I feel this may tend to depersonalise and tempt one to compare and ask others with similar conditions and symptoms to undertake a Medics role. I am of good education with good medical understanding and so understand and ask relevant questions about my condition to the appropriate medics involved in my ongoing care. This leaves me time to plan my future rather than dwell on the negatives. I am writing because the number of mails I see posted on this site could disparage people, especially newbies from benefiting from the often fantastic social support offered by so many site members.

[19581979]

Hi

I agree that the support we can get from each other is absolutely fantastic. Often doing silly jokes or making a joke at my own expense often helps me cope with getting on with my life.

I also recognise that we can't make comments about readings as we are not in possession of all the details even if we were medically qualified to understand them.

What many people on this site talking about readings has helped me to do is to know more about what questions I need to have answered .

I have a fatty liver that is presenting in its behaviour as having cirrhosis. But my liver isn't the shape of a liver with cirrhosis. I still don't know what triggers are driving my liver problems, poor diet and lack of exercise are among them as probably are painkillers, but it could also be other things. The only one that would totally amaze me if it was involved is alcohol as I haven't drunk it for 30+ years, so if that is the cause my own body is creating the alcohol. This site has made me realise that if I have any chance of reducing the deterioration my body is facing I need to understand my readings better. So whilst I agree we can't help with other people's readings, having people ask about them has helped me.

Gx

[mauschen]

I concur with the points made by both Hidden and 19581979 .

For some people, dwelling on the minutiae of test results; which are often barely out of reference range, can result in unessessary anxiety, particularly if there is a deficit in understanding. Sometimes this can lead to a fixation with a particular illness resulting in associated illness’ being overlooked or the patient being diagnosed with a psychiatric condition.

However, on the otherhand, many of us have not been afforded the excellent care which would allow us to commit our trust in the healthcare professionals. This means that we have no alternative but to take matters into our own hands, including interpreting our own test results.

While This forum does not advocate giving medical advice, nevertheless it allows a platform for discussion where people can ask others about the significance of test results and what to expect next; based on similar experience.

For example, I once contributed to a discussion where fibroscan results were mentioned. I knew what it was and how it would be performed yet I learned from the experience of others how the disease was assessessed and scored and, what to look for in the results. This information has been invaluable to me and helps me to monitor the progress of my recovery/illness.

[Bermuda1]

I have to agree to disagree with you here. Part of taking good care of oneself is taking responsibility . The blood test results are a guideline to this . Some dietary aspects can be adjusted to aid with deficiencies. They also often help people , especially recently diagnosed ones, to come to terms with the issues , and gain a greater understanding . Although on this site it is not welcomed , on numerous ones it is , and as long as explained in a sensible way can help people to take control, the trend data with blood test results going hand in hand with scan results are a good guideline. Yes you have been very fortunate in the care you have got , many people the world over are not . My GP wouldn't have a clue. My consultants are very happy that I am very aware of my issues and problems and my approach to my illness and the responsibility I take . I get full written reports of all my blood tests and scan results sent to me , as well as the consultants personal report . I study them and store them , I find them invaluable. I was at one point shortly after diagnosis being drained, 10 litres taken off both times , had jaundice , muscle wastage , was very weak and ill , and given a guesstimate of 2 years. Well I have been a walking , talking ghost for two years now. I am fit and strong ( was concreting yesterday , and yes I am female) , my cirrhoisis is now at the lowest level it can get whilst still having cirrhosis. Don't kid yourself I have worked very hard to get to this stage , and all the info I have gleaned has helped me no end , my consultants are very happy wth me and my attitude. So each to their own , for me and many knowledge can be a powerful tool.

[Hidden]

Glad to hear your on the mend Couchiebear. My liver damage was also caused by alcohol. My bout of varices was my wake up call and I've not drunk since. I was so humbled by my liver transplant that I decided to tell of my story and share with others the dangers of what awaits them through alcohol. I started my quest by posting my story up onto the British Liver Trust's website. Since then I've had my story published in both our local and a national newspapers. I've put together my own website, which hopefully covers all aspects of Alcohol-related Liver Disease. In fact, I've just added a new topic just this morning covering "research". After my transplant. I felt such a terrible feeling of guilt. I didn't feel worthy of the transplant as there were so many others who's livers had become damaged through no fault of their own. While I've been putting this "research" column together I think I've found another cause as to why people can get hooked and it can be through no fault of their own, which helps to alleviate my feeling of guilt.

Putting this website together, I found to be rewarding, but all was not plane sailing as I did get some knock-backs and criticism from others in the medical profession, who told me that I shouldn't be doing this as I'm not medically qualified. I thought I would tray and address this. A few months ago I did a Future Learn online course. Some of these are free to do, but I paid as at the end you get tested and if you achieve enough points, you can receive a certificate. The course I did was, "Liver Disease: Looking after Your Liver" which was put together by the nice people at University of Birmingham. The second course I'm doing starts tomorrow and is called, "Liver Transplant" which is also orchestrated by the University of Birmingham. Although I'm still not medically qualified, I hope by doing these two courses it can add something to my credibility.

The "Research" on the website can be found at: taep.eu/clients-b.htm

Good luck

[kurtymac]

I can agree and disagree. I do work in the medical field and believe that small details can still paint a picture of one's health. If somebody has periodic blood tests with a slight elevations or low flag. Its important to establish a trend. This is how patients catch an issue before it crosses the red zone into something more dangerous. We can often intervene and stop the disease process from advancing.

[Ronin990]

I would have totally agreed with you before my symptoms started and I got no answers. I was always of the mind to not google things and just go to the doctor if you needed, trust them and leave it at that.

After several months of the doctors saying there was nothing wrong with me and all my tests being fine I started to do my own research as I was at my whits end. I worked out what I needed about most tests being normal and a fibroscan. Paid for one of those and it was very abnormal. After that I realised I needed to take an active role in my health. I guess like everyone else has said, agree and disagree.

[peteingloster]

Hi couchiebear, you're absolutely spot on, couldn't have worded it any better! Shame so many people over think these issues, I know I did to a certain degree. This "blog" is brilliant keep on keeping on.