Apologies in advance for the length of this post!
I am a new poster on the forums looking for some advice.
I am 40-year-old male, who suffers from consistent and abnormal fatigue (present for most of my adult life); coeliac disease (diagnosed circa 7 years ago; I have carefully followed a gluten free diet ever since); and migraine (since the age of 13). I have also suffered periodically from (moderate) depression.
Up until around 16 months ago, I could manage these conditions reasonably well; however, since then, things have changed dramatically in that:
1.The level of fatigue I have been experiencing has increased significantly. I have always suffered from fatigue, but it has been significantly more so over the past 16 months – 2 years. I had put this down to the extreme hours I was working and the stress of my job. I was working c. 70 hours a week in a very stressful and time pressured job. However, despite reducing my working hours from fulltime to part time (3 days per week) in November 2016, and having a lot less job-related stress, my fatigue levels have not reduced at all. In fact, elevated fatigue is virtually ever-present, while I seem susceptible to virtually every cold and flu bug going, and always seem to take longer than others to recover.
2.The number of Migraine attacks I have suffered has increased dramatically, particularly in the last 16 months. The profile of attacks since 2013 has been: 2013 (3 attacks); 2014 (0 attacks); 2015 (1 attack); 2016 (8 attacks – all between September to December 2016); 2017 (20 attacks); and 2018 (3 attacks already). I get Migraine with aura, and attacks typically leave me totally drained, for three or four days at a time, which is very debilitating from a family and work point of view.
When I was diagnosed coeliac (November 2011) and started on the GF diet, I also started taking amitriptyline (started at 10mg and eventually up to 40mg). In the period from then until September 2016, I suffered less than half a dozen attacks – which was the lowest frequency of attacks I have ever had so something was working, though it was not clear whether it was the GF diet, the amitriptyline, or a combination of both. However, as you will see from above, the number of attacks, and levels of fatigue both increased significantly from September 2016 onwards.
At the start of 2017, I enquired with my GP re possible B12 deficiency, following much research on this forum. I told the GP I felt I had many of the symptoms commonly associated with B12 deficiency, including:
Neurological: difficulty in remembering things; Muscle pain and stiffness (mostly legs); migraine.
Gastro: Irritable bowel; coeliac disease.
Psychiatric: Mental exhaustion / ‘brain fog’; difficulty concentrating; depression; difficulty in remembering things; irritability; apathy.
Other: generalized weakness, chronic fatigue; difficulty recalling names or words; susceptible to infections; difficulty in regulating temperature; historical instance of geographic tongue.
The GP was skeptical, but briefly referred my case to a hematologist. However, the hematologist advised that I had “normal hemoglobin and B12 and normal appearance of red cells…” This was based on the following results (I’ve included folate results too):
Date Result Lower Higher
Serum Vitamin B12 09/08/2012 556ng/l 189.00 883.00
Serum Folate 09/08/2012 9.7ug/l 2.70 20.00
Serum Vitamin B12 12/07/2016 615ng/l 200.00 900.00
Serum Folate 12/07/2016 10.9ug/l 3.10 20.00
As such the GP was not persuaded to investigate B12 deficiency any further. Instead a further endoscopy/duodenal biopsy was ordered, in case refractory coeliac disease were the cause of the problems. However, these tests ultimately proved that I didn’t have refractory coeliac disease.
As the GP was not willing to take matters further as regards possible B12 deficiency, in March 2017, I ordered the active B12 test via Viapath/ St Thomas in London, with the following results:
Homocysteine 9.8 umol/l (Range 0.0-15.0)
Serum folate 7.9 ug/L (Range 3.1 -20.5)
Vitamin B12 (Serum) 510 ng/l (Range 187.0 - 883.0)
Methylmalonic acid 122 nmol/L (Range 0-280)
ActiveB12 (HoloTC) > 128 pmol (70-108)
As you can see, all results were in range apart from Active B12, which was higher than the normal range.
I did not share the results with the GP as he was not really interested, and also because the Viapath/ St Guys results seemed to reinforce the GP’s position that B12 deficiency was not the cause.
My questions are:
1.Are there any circumstances under which B12 deficiency could in fact be the cause of my symptoms (which have not eased at all in the past year, while migraine attacks have increased significantly)?
2.If so, can anyone suggest potential next steps / areas for further exploration?
Any suggestions would be greatly appreciated as I am at my wits end with how bad I constantly feel. I am terrified that if I cannot get resolution, I will lose my job, my relationship with my partner and feel that I have a very low quality of life (though I know I am lucky compared to some of the things other people have to put up with).