Long term treatment and recovery
Early 2013 Stichting B12 tekort initiated a large survey in order to gather more information about the symptoms, diagnosis and treatment of B12 deficiency. Almost 2000 patients completed the questionnaire which resulted in much useful information. Stichting B12 tekort has used these results in various ways and presented them at the B12 conference in Wales 2013 and discussed them there with medical doctors and researchers. They were impressed by the large number of respondents. The information has in its turn contributed towards formulating new hypotheses for ongoing and future research and was extensively discussed with the participants in the round table discussions. The research results were also shared with the Dutch Vitamin B12 Deficiency Research Group.
The results and the stories of the many thousands of patients over the years gave much information but also raised new questions.. One of the most frequently questions is: Why is one injection every two months sufficient for some patients, while others need a weekly injection in order to stay free of symptoms? Some researchers are also addressing this question and in Great Britain Cranfield University Professor Hunter does research based on this question.
There are also research projects ongoing concerning the question why patients respond differently to the various forms of B12, why many patients keep complaints in spite of receiving the proper treatment, and why some people prosper on tablets and others definitely need injections. Based on the results of our previous survey and our discussions with the Pernicious Anaemia Society and British researchers we developed a new survey focussing on the long term.
A lot of research has been published about vitamin B12 deficiency or pernicious anaemia. Most articles are largely concerned with diagnostics.
Concerning articles about treatment we note the following:
- the research is often short term: patients are being monitored for a few months at most
- the focus is on normalising blood values and not on the symptoms and clinical results
- much research covers older people; the results cannot be applied one on one to younger patients
- most research covers few patients
- no research has been done into long term results of the various treatment methods
This is the cause of our relative lack of knowledge about the extent to which patients recover from the consequences of a B12 deficiency and which treatment gives the best long term results.
Stichting B12 Tekort is eager to know how patients fare in the long term. How did the treatment turn out? How are the long term results? Does recovery vary with the types of treatments? How many patients fully recover and to what extent does that depend on their treatment. These questions were the basis for this survey which contacted potential respondents via the website, social media and email. More than 1700 patients completed the survey, for which we are very grateful!
We hope that the survey results will contribute to better treatments that in future will ensure full recovery for (almost) all.
Below you find the results in the order of the questions to which they belong. By clicking the button the relevant page is opened. There you find the results, with extensive information and comment, subdivisions and the relevant graphics.
Every screen has a menu on the right hand side that enables you to jump from question to question.
1. How long ago were you given the diagnosis B12 Deficiency? Are there any differences between then (ten years ago) and now?
2. How long did it take (approximately) before treatment was started after you were diagnosed? For how long did you have symptoms before diagnosis?
5. How quickly did you notice improvement after treatment was started? How many symptoms do you still have after one year (or longer) of treatment?
3. With what frequency did you get injections in the first weeks following diagnosis and how often did you get an injection after that first period?
6. Did you have neurological and/or neuropsychiatric symptoms before treatment? If so, to what extent?
Have these symptoms improved?