Stichting B12 Tekort Survey 2013-2014 results
At the start of 2013 Stichting B12 Tekort held a survey which was completed by almost 2 000 patients.
The questions raised, amongst others, concerned the duration of symptoms before testing for a vitamin B12 deficiency took place; the nature & extent of the symptoms; how the diagnosis was made; what treatment was given and the nature & extent of the symptoms after one year of treatment. Many of the results came as no surprise to Stichting B12 Tekort as they had heard these patient stories in both emails and on the forum.
It still takes a very long time before a vitamin B12 deficiency is considered as a possible cause for the symptoms experienced, sometimes quite a few years. Nearly 30 % of the patients had symptoms lasting longer than 5 years before they were tested for a vitamin B12 deficiency. In only a quarter of the patients a vitamin B12 deficiency test was done during the first year of the experienced symptoms. Permanent neurological problems may result if treatment of a vitamin B12 deficiency is delayed, making an early diagnosis and rapid, appropriate treatment essential.
The large range of symptoms caused by a vitamin B12 deficiency is not well known. Most symptoms mentioned were: (extreme) fatigue, concentration problems (brain fog), word finding problems; misspeaking, irritability, muscle weakness & pain, memory problems, feeling cold and tingling. These symptoms were stated as serious to very serious in many cases.
The awareness of vitamin B12 and the many symptoms of a deficiency are still not widespread enough. Patients frequently have to request to be tested for a vitamin B12 deficiency themselves. The interpretation of the test results also provides the necessary problems. It is often not known that the normal B12 test (which is usually requested) also has a large grey area which can still indicate a possible deficiency.
Serum B12 values can give false high results suggesting that the patient is not deficient, while a deficiency could actually be the case. There is also too little awareness of the MMA & homocysteine tests which can be requested to clarify if there is a deficiency at tissue level.
20 % of the patients were tested for MMA and 13 % for homocysteine. Frequently only the homocysteine was tested, but it appears that patients are being missed, as can be read in this article. 70 % of the patients were not tested further than the serum B12. The Active B12 (holotranscobalamin) test has been available for some time but is not often requested. Only 10 % of the patients were tested for Active B12. The question also arises if the current reference values for Active B12 are correct.
Anaemia and/or macrocytosis
Another major problem with the diagnosis – which we have been pointing out for years – is that it is still thought that a B12 deficiency always occurs together with anaemia and enlarged red blood cells (macrocytosis). It has been known for over a century that patients can have serious neurological complaints (leading to permanent symptoms & damage) before there is any sign of anaemia – yet this misunderstanding still remains today.
This survey shows once again that the prevalence of anaemia and/or macrocytosis is much less than assumed: 65 % of the patients showed no signs of anaemia and/or macrocytosis. 28 % had anaemia and 15 % had macrocytosis at the time of the discovery of the B12 deficiency. You can read more scientific information about this here and here.
Many people experience problems getting the correct treatment after the vitamin B12 deficiency has been confirmed. Fortunately 75 % of the patients did receive treatment upon confirmation of the vitamin B12 deficiency. About 40 % of the patients, who did not receive immediate treatment, had to wait for longer than 6 months. It is stated in the literature that if neurological symptoms are present for longer than 6 months, there is a (large) risk that symptoms will persist and the damage is irreparable. A large group of people are at risk by this unnecessary postponement in treatment.
84 % of people got injections. Half of them got the correct start up treatment of 10 injections in 5 to 10 weeks. In the literature the experts state that in the case of neurological symptoms, injections are the preferred method of treatment. There is too little research into the effectiveness, long term, of other forms of treatment. Injections are refunded by health insurance, there is better patient compliance to the treatment and patients report that the injections work faster and better. This is especially the case where the correct start up dosage was followed. 35 % of the patients who were given injections observed improvement within 5 injections. 30 % noticed improvement between 5 and 15 injections and 9 % had not noticed any improvement after 15 injections. Of the patients who were given a different treatment, usually tablets, 28 % noticed an improvement within a month and a further 18 % within 2 months, 13 % noticed no improvement after 3 months.
After a year
The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately. We will pay more attention to this aspect in a following survey.
More than a year after the start of the treatment 25.7 % still suffer from serious to very serious fatigue. About 15 % still experience nerve pain and/or muscle pain and weakness.
Other symptoms that remain troublesome are concentration problems, memory problems, word finding problems and intestinal complaints. 60 % of the patients feel that they are receiving sufficient treatment.
There are many possible causes for a vitamin B12 deficiency. In only 30 % of the patients tests were carried out to determine one or more possible causes. In most cases it was only for one (autoimmune) or two causes. It has been said too often that testing makes little sense because there is usually no cause to be found. The survey shows that, on the contrary, a cause was found in half of the tested cases. Testing for a cause is therefore meaningful.
In 35 % of the patients it was found that at least one other family member was vitamin B12 deficient. This is usually a parent, child, sibling or grandparent. This indicates a familial predisposition and the need to be alert to first and second degree relatives of B12 deficient patients.
For the question whether there were any other conditions besides the vitamin B12 deficiency, the following were mostly mentioned: hypothyroidism / Hashimoto’s disease; vitamin D deficiency; asthma; high blood pressure; fibromyalgia; migraine; vitiligo; diabetes; irritable bowel syndrome (IBS); chronic fatigue syndrome & myalgic encephalomyelitis (CFS/ME); psoriasis; coeliac disease; lactose intolerance and allergies. It is therefore wise to be alert to the possibility of a vitamin B12 deficiency in patients with any of the above disorders or diseases. Other deficiencies which occurred with a vitamin B12 deficiency were vitamin D, folic acid and iron.
The main conclusions which can be drawn from this survey are:
• vitamin B12 is considered too late as a possible cause of symptoms
• the serum B12 test is not always decisive for the diagnosis & this is insufficiently known
• the tests Active B12, MMA and homocysteine are insufficiently known
• the symptoms that suggest a vitamin B12 deficiency are insufficiently known
• there is too little attention for the symptoms of the individual patient in the treatment
• it is still wrongly thought that a vitamin B12 deficiency always occurs together with anaemia and macrocytosis
• there is too little testing for possible causes
• there is an unnecessarily delay in treatment on a regular basis
• many patients experience permanent symptoms due to a late diagnosis and/or inadequate treatment
A vitamin B12 deficiency is still too often overlooked as a possible cause of symptoms. A lot of patients have had symptoms for many years before a diagnosis is made.
The diagnosis itself also gives regular problems, just as does the treatment. With a timely diagnosis and treatment many euro’s can be saved due to the unnecessary doctors and therapists consultations and for the treating of symptoms only.
Most importantly, with a rapid diagnosis and treatment, irreparable damage from a B12 deficiency, with unnecessary remaining symptoms, can be prevented in a simple manner.
Here you will find all results, click on the button to go to the indivual pages.
Diagnosis - B12 tests
Was the test just B12 or Active B12?
What was the value of serum B12 in pmol/L?
What was the value of active B12?
Anaemia-macrocytis and Causes
Were possible causes tested, which tests were done, what were the results & is it familial?
Start of treatment
What treatment did you get?
What did your treatment with injections consist of? Loading dose and after
How long after you started with tablets did you notice improvement of your symptoms?
Have you been treated for more than one year and if so, how often are you still receiving an injection?
How are your symptoms after at least one year of treatment?
MMA and homocysteine
MMA in blood
MMA in urine
Symptoms before treatment
How long did you experience symptoms before the deficiency was discovered?
What symptoms did you have at the discovery of the deficiency?
To what extent did you experience your symptoms as troublesome before treatment?
Age, other conditions and remaining symptoms
Do you have any other conditions in addition to the B12?
What was your age at the discovery of the deficiency?
Where do you live?