If your doctor doesn't think of a vitamin B12 deficiency in time

Barbara brings flowers on behalf of the B12 Association for doctor Auwerda, who was present at the Health Fair. B12 patients are happy with every doctor who is committed to make vitamin B12 better known. And doctor Auwerda is one of them.

You might expect that a B12 deficiency is easy to diagnose: you have your blood values measured and if your results are too low, you receive treatment. But is this also the experience of Barbara (and many other fellow sufferers)? Barbara tells her story:

"No, so that's not my experience at all! In my case it had dramatic consequences because my vitamin B12 deficiency was never taken seriously. It started with vague symptoms; fatigue and some blurred vision and pain in the muscles.

Then you quickly get the response from doctors: it's between the ears, it's because of the stress. I then spent a number of years struggling with my symptoms. I am a gastrointestinal patient, I have Crohn's disease and my small intestine was completely removed in '97. In principle, the absorption of vitamin B12 also takes place there, so you would think that this would quickly be associated with a B12 deficiency ... Not so.

The biggest stumbling block was that at one point someone had put the word "SOLK" (unexplained physical complaints, ed.) and "psychological" in my medical file. And that's how I was treated, unfortunately. Despite the fact that my file clearly states that I have Crohn's disease, an autoimmune disease, I wasn't helped or listened to because of my medical complaints.

In my case the B12 deficiency was caused by having my small intestine removed, but there are of course also many people who have to have a stomach operation. For them it is very important to be alert for a B12 deficiency. Or that people have something else that makes the absorption of B12, which takes place in the intestines, not work properly."

There can be many causes behind a B12 deficiency. And very often they talk about a psychological cause of the symptoms instead of the doctors thinking about a B12 deficiency. Barbara is not surprised anymore, she is used to being treated this way by most doctors.

Barbara's fatigue got worse and worse, to the point that she was bedridden all day with various symptoms of failure. The pain in her legs became so bad that she couldn't walk anymore, she had tingling sensations, deaf spots, very bad eyesight: all symptoms that fit with B12 deficiency.

Barbara says: "In theend I started insisting that my doctor insist on having my vitamin B12 level tested. I had a huge fight with my previous doctor about this: he thought it was all nonsense and I eventually went to another doctor. But in the end I asked an orthomolecular doctor to examine my levels.

And yes, that value was just dramatic."

According to information from Doctor Auwerda of the B12 clinic, the longer you have a B12 deficiency, the more dangerous the condition is and the more difficult the cure becomes, if at all possible. Conclusion is that everyone benefits from a very quick -correct- diagnosis.

Barbara responds: "Yes I also think that people really benefit from a quick diagnosis, and that doesn't only apply to me. So many fellow sufferers have also suffered irreparable damage. Because of the B12 deficiency I'm in a wheelchair. Last year I was finally diagnosed in Maastricht with Thin Fibre Neuropathy (DVN). Due to a long term B12 deficiency the thin nerves under the skin, the thin fibres, are affected.

And yes, I can do with that now. For this examination they look at different things and a skin biopsy is taken. They do temperature threshold testing and they also look at your symptoms. I had a really extremely abnormal temperature threshold test, so I can't feel what's hot or cold anymore. I don't feel any difference in my legs and my arms so those are all affected nerves."

Do you inject vitamin B12 often now?

Barbara: "I inject very frequently because I did notice that I got out of bed again thanks to the frequent injections. I also have a dysautonomia: fainting all the time, not being able to stand up straight anymore because the blood pressure and everything else was out of balance.

Because I started injecting very frequently, many things have become much better. But I will not recover to the point where I can go back to work or go on a far away holiday in the sun. Because I also got an extreme heat intolerance from it: my nerves don't regulate the temperature well, so that heat is not transported well: from 24 degrees I get very sick.

Yes, and it wouldn't have had to turn out that way if there had just been more attention to vitamin B12."

Then I am very happy that you, by making yourself so vulnerable, maybe can save others who recognize something in this story and that they don't find out about their B12 deficiency too late in the same way.

"There are just a lot of pitfalls that need to be thought of. People often think that there must be pertinent anaemia, or that it's just a vitamin. I understood from Dr Auwerda that students in the medical school only spend one hour on vitamin B12. Then I really think that this should be changed and that there should be much more attention. And the injections really aren't harmful, because I'm still here. The injections do give me a lot of quality of life back: I'm no longer in bed 24/7, my nerve pains are significantly less, which means I don't have to resort to painkillers as much. Amitriptyline and gabatine have been given to me for years, they stuff you full of them. That's why I find it so bizarre that such a drama is being created about a B12 injection, which does proportionately far less damage than a painkiller or an antidepressant."

Yes, I also discussed this with doctor Auwerda: he told me that 3 months of injection treatment costs him €25 in material. And that while everybody thinks that with injections the costs go up, but all those other medications are much more expensive. So we all have a lot to say to the Dutch people and the Health Care system, so that more people will be spared a wheelchair or a disease progression of years. Not to mention all the medical costs that go along with it.

People like Barbara who come forward with their experiences are desperately needed to change the prevailing trend (or better: the ignorance about B12 deficiency).

The meeting at the Health Fair between the group of fellow-sufferers and Dr. Auwerda resulted in a Symposium that will be held on October 10 in Erasmus Rotterdam: the first symposium in the Netherlands in this field for doctors, specialists and fellow-sufferers.

For more information, go to the website of doctor Auwerda: the B12 clinic. Or sign up for the Symposium

Register here for the B12 symposium on October 10, 2019.

Watch and/or listen to the interview with Barbara at the National Health Fair 2019 at the Jaarbeurs in Utrecht here.

How can Bloodtesting.nl help?

Regular blood tests are crucial to understanding how your health works. This allows you to track your progress; detect any diseases, infections and inflammation in a timely manner and then work in a targeted manner to resolve any issues.

Whether Vitamin B12 deficiency is the cause of symptoms such as fatigue and tingling is sometimes difficult to determine. However, when Vitamin B12 goes undetected it can lead to serious and permanent damage to the nervous system.

Read also our blog: 6 tests you can do to detect a B12 deficiency

In case your doctor doesn't want to participate in a complete blood test the B12 clinic advises by mouth of Dr. Hajo Auwerda to take the following blood testb12kliniek-basis-blood test.Preferably supplemented with Methylmalonic AcidThis is a pricey test. This test indicates a long-term functional deficit. But this test is only useful if you have not started treatment or supplementation.

The Holo-TC (=Active-B12) test measures only the active part and is therefore a good test to detect an early B12 deficiency, in case the standard B12 test you get through the regular way doesn't show a deficiency yet: Holo-TC (=Active-B12)

B12 deficiency often goes hand in hand with vitamin D and iron deficiency. Then you could do this test: Vitamin Combi vitamin D, active B12 and Ferritin.