The Many Faces of Cobalamin (Vitamin B12) Deficiency, 2019, Wolffenbuttel et al.

[Chandelier]

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Spoiler: Authors

Wolffenbuttel, Bruce H.R.; Wouters, Hanneke J.C.M.; Heiner-Fokkema, M. Rebecca; van der Klauw, Melanie M.

Abstract​

Although cobalamin (vitamin B12) deficiency was described over a century ago, it is still difficult to establish the correct diagnosis and prescribe the right treatment.
Symptoms related to vitamin B12 deficiency may be diverse and vary from neurologic to psychiatric.
A number of individuals with vitamin B12 deficiency may present with the classic megaloblastic anemia.

In clinical practice, many cases of vitamin B12 deficiency are overlooked or sometimes even misdiagnosed.
In this review, we describe the heterogeneous disease spectrum of patients with vitamin B12 deficiency in whom the diagnosis was either based on low serum B12 levels, elevated biomarkers like methylmalonic acid and/or homocysteine, or the improvement of clinical symptoms after the institution of parenteral vitamin B12therapy.
We discuss the possible clinical signs and symptoms of patients with B12 deficiency and the various pitfalls of diagnosis and treatment.

Abbreviations and Acronyms: CoA, coenzyme A; holoTC, holotranscobalamin; IF, intrinsic factor; IM, intramuscularly; MMA, methylmalonic acid

Web | DOI | PMC | PDF | Mayo Clinic Proceedings: Innovations, Quality & Outcomes

 

[Peter T]

Similar observations, and even reports on beneficial effects of vitamin B12 injection therapy, have been reported in patients with myalgic encephalomyelitis, with and without fibromyalgia.98,99

98.
Regland, B. ∙ Andersson, M. ∙ Abrahamsson, L. ...
Increased concentrations of homocysteine in the cerebrospinal fluid in patients with fibromyalgia and chronic fatigue syndrome
Scand J Rheumatol. 1997; 26(4):301-307
99.
Regland, B. ∙ Forsmark, S. ∙ Halaouate, L. ...
Response to vitamin B12 and folic acid in myalgic encephalomyelitis and fibromyalgia
PloS One. 2015; 10(4):e0124648

Personally my B12 deficiency seems to post date the onset of my ME/CFS as do my gluten issues. I assume my gluten issues are a non Coeliac gluten intolerance but I was already gluten free when tested, so this may have resulted in a false negative. (I had not known then that there needs to be gluten in your diet for coeliac testing to work.) The symptoms of B12 deficiency for me overlapped with the non specific ME/CFS symptoms, such as fatigue. I was for some years on B12 injections, which initially seemed to produce an improvement in my ME but this was only up to the deficit being rectified with maintenance dosages having no obvious effect other than preventing returning to deficit.

When my ME deteriorated such that I was unable to attend my GP surgery for the B12 injections my doctor said they would arrange for the community nurses to provide them at home, but this never happened. So I started taking oral supplementation, which I have now been doing for several years. My B12 levels are currently within the normal range, so my practice nurse is reluctant to resume the injections though I am now able to attend the surgery, saying they are not needed.

I don’t know if the oral supplement is enough to manage the deficiency, or if the cause of my deficiency has been removed, with such as improved diet or if being gluten free for some two decades has reversed potential malabsorption issues. Continuing oral supplementation seems the easiest course now rather than fighting with my GP practice.

It would more generally be useful to establish if people with ME/CFS do have higher levels of B12 deficiency than the normal population and if so why. Certainly I would argue that we should regularly have our vitamin levels checked, and that access to home based medical provision needs to be more reliable for people with ME/CFS.

 

[Jonathan Edwards]

It would more generally be useful to establish if people with ME/CFS do have higher levels of B12 deficiency than the normal population and if so why.

The trouble is that you could probably argue this for lots of things for which we don't have any specific evidence. I would have thought that if B12 deficiency was commoner and actually causing problems something would have come up on big proteomic studies by now. The problem with B12 is that historically it was used as the universal placebo and got iinked to the folklore about supplement benefits.

There are physicians who used B12 for ME/CFS and I think we would have seen studies showing lower levels to support their case at some time in the past if there was a significantly increased rate of deficiency.

 

[Utsikt]

There are physicians who used B12 for ME/CFS and I think we would have seen studies showing lower levels to support their case at some time in the past if there was a significantly increased rate of deficiency.

It’s still in use in Norway based on «clinical experience».

 

[Mij]

I did a MMA (Methylmalonic acid) test years ago that was in the higher/normal range. High levels are specific indicators of B12 deficiency. My GP thought it was mumbo jumbo.

I take methylcobalamin instead of injections (Hydroxocobalamin) which work just as well and cheaper.

I don't have symptom indicators when I'm low so I take tablets every now and then since I tend to be low since ME as with all my other vitamins, amino acids and fatty acids.