Tuesday, 4 November 2014

ClinicSpeak: lymphopaenia survey results

Is it time to empower MSers with the ability  to monitor their own blood results? #ClinicSpeak #MSBlog #MSResearch

"It is clear from our lymphopaenia survey below that MSers on DMTs want to know about their blood counts and want to be involved in their monitoring of their results. I am not surprised considering the potential consequences of the results; maybe the recent death of a MSer on DMF (Tecfidera) could have been avoided if he/she was involved in the monitoring of their counts? Interestingly, at our hospital the renal team give their patients access to their electronic records and encourage them to monitor their own results. This results in better drug adherence and earlier pick of problems, for example drug toxicity and early transplant rejection. Some of the commentators on this blog have asked what can be done to prevent any further cases of PML on DMF (Tecfidera); the answer is simple: education and MSer empowerment. MSers need to demand access to their blood results and given information about how to manage low lymphocyte counts and other problems. If this doesn't happen I can see MSers shunning more risky drugs for safe, but less effective, alternatives."

CoI: multiple


  1. Would anyone know of a website where you could input your blood test results?

    A site that may do some analysis on your data and provide explenations for high/low single observations, time series, and relationships between 2 different indicators?


  2. I don't know of any websites which can do exactly what you are wanting, but I have found the following website to be an excellent source of information about all sorts of blood tests, with good clear explanations. Many of the descriptions don't provide the reference ranges because these vary around the world with some tests (e.g. Vit B12 Ref Ranges are higher in some European countries and in Japan - Serum B12 around 400 pmol/L bottom of range whereas Australia is still 150 pmol/L for bottom of range), and the Ref Ranges quoted can differ from test lab to test lab. Any printout that you get of your test results should quote the reference range that has been used for your tests.

    This website also groups the various tests together - e.g. all of the liver panel tests are listed together - very useful so you know what groups of tests are done to check various things. There are also some basic explanations given about test results and what they mean, although they are not totally comprehensive, and some causes of anomalous results are not provided. However the site is written in plain language so that ordinary people can understand the information - and I have learnt heaps from it, and then been able to follow up other sources once I know what I'm looking for.


    1. Thanks for that.....
      I find it strange that no service (paid or free) exists to monitor one's blood metrics.... something like an early warning system.


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