Pernicious Anaemia Society

B12 results fine, but symptoms persist. Could I still be deficient?

Hi all,

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).

Thank you

16 Replies

Hi ImperialTotti have you had your Vitamin D level tested?

"Vitamin D is manufactured in our skin as a direct result of sunlight exposure. One potential complication of prolonged Vitamin D lack is osteomalacia, a disease which causes severe structural deformities to the skeleton. Lower level Vitamin D deficiency can lead to a number of non-specific symptoms, including possibly chronic fatigue (experts have for many years noted an association between sufferers of chronic fatigue syndrome or myalgic encephalitis (CFS or ME) and low blood levels of Vitamin D). It has been estimated that between 50-70% of people living in the northern Europe (where daylight length reduces your chances of receiving adequate sunlight in the winter) are deficient in this vitamin by March each year. Symptoms of vitamin D deficiency include chronic pain, weak bones, frequent infections (recent research has detected an association between vitamin D deficiency and severe pneumonia), depression and fatigue. Supplementation may be beneficial."

I ma not a medically trained person and the above is a quote taken from a previous reply on the HU Thyroid UK community

1 like

Hi clivealive, thanks for replying.

I got tested for vitD last year (February) and was found to be insufficient (44.2 nmol/L) so have been supplementing on the advice of my pharmacist since then but without any upturn in how I've been feeling I'm afraid. I should probably get retested mind you to check that the supplementation is working.

Thanks, IT


Hi imperialTotti,

When you say you have been addressing your vitamin D deficiency on the advice of your pharmacist. What did he/she advise? If it was the standard 800iu of D3 this is unlikely to be sufficient to address your low levels. Also you need to take K2 with your vitamin D3 to make sure the increased uptake of calcium goes to the bones and not organs. When my vitamin D was very low I was very ill, extremely tired, aching bones and joints, constant bugs that lasted longer than normal and inability to sustain any activity.

Do have a look at the website The Vitamin D Council or Grassroots they both have excellant advice. Your symptoms do fit with vitamin D deficiency but given your autoimmune condition youd be wise to get your thyroid rechecked and get copies of the results to post.


Hi waveylines,

Thank you for taking the time to reply.

I have been on 2500iu of VitD per day since March last year.

I wasn't aware of the need to take K2 alongside the VitD, however, so I'll look into this. Did VitD supplementation (and K2) work out for you and relieve your symptoms?



Most people take around 2000iu -3000iu of vit D to maintain there level during the winter months &stop taking it during the summer months. It may well be your vit d dose hasnt been sufficient to raise your level significantly. 5000iu would've been better with a follow up test after 6 months.

I would get your vitamin D level rechecked before altering your dose. Everyone is different. Its important to check as we store vitamin D so wouldnt want to over do it! Having said that the Vitamin D Council did research to prove theres no toxicity in taking up to 10,000 iu per day. Am more cautious than that!!

My vitamin D level was 3!! Was discovered after a major leg bone broke for no reason. I had very high loading doses under specialist hospital medical supervision. My GP said each dose was a 100,000!! And yes I felt like a new woman.....the difference was immense. I stopped catching all the bugs, bone pain disappeared and slept deep and restorative sleep.

I currently take 3000iu with K2 all year round now but am unable to tolerate any sun.

If you are eating lots of dark greens you are probably getting enough k2 in your diet.


The results above - particularly the fact that MMA and homocysteine are both in range - do make it highly unlikely that B12 is the problem.

The variations in serum B12 levels are in the noise range as well.

Are the results for active B12 above copied out correctly - active B12 is usually around 20% of B12 in serum - a higher ratio could be indicative of a problem using B12 once you have absorbed it from your diet ... but if that was the case you really would expect MMA and homocysteine to be raised.

Have you been tested for thyroid problems at all?


Hi Gambit62, thanks for replying.

I've not had thyroid tests since 2012 and 2013, and both of those times the results came back within range. However this predates my recent worsening of symptoms so may be an avenue I should consider.

Thanks, IT



In the context of thyroid testing, "within range" is often regarded as the inevitable consequence of very wide reference ranges and the lack of understanding that individual ranges are far, far narrower than population reference ranges.

I invite you to post your previous test results (include dates and reference ranges) - and any new results you get - over on Thyroid UK forum.


Hi Hellvella,

It has been some time since i last had my thyroid checked and and which predates the worsening of symptoms I have seen over the last 16 months or so. The results are shown below:

August 2009:

TSH mU/L 2.69 (Range 0.35-5.00)

Free T4 pmol/L 13.3 (Range 9.0-21.0)

T3 (not tested)

TPO (not tested)

TRAB (not tested)

June 2011:

TSH mU/L 3.55 (Range 0.35-5.00)

Free T4 pmol/L 14.1 (Range 9.0-21.0)

T3 (not tested)

TPO (not tested)

TRAB (not tested)

August 2012:

TSH mU/L 3.98 (Range 0.35-5.00)

Free T4 pmol/L 14.3 (Range 9.0-21.0)

T3 (not tested)

TPO (not tested)

TRAB (not tested)

July 2013:

TSH mU/L 4.81 (Range 0.35-5.00)

Free T4 pmol/L 12.7 (Range 9.0-21.0)

T3 (not tested)

TPO (not tested)

TRAB (not tested)

On each occasion the GP advised these to be within range and so no further action was taken.

I am going to ask for a further thyroid test when I see my GP next week and will post these results once known.


1 like

Your rising TSH is very similar to my results before diagnosis. And when I did start levothyroxine I improved in many ways. For various reasons I was diagnosed at just over 5. Many suffer for much longer.


I would ask for these to be repeated. In 2013 my tsh was apparently “normal” it wasn’t it was 7.8 but I knew no better than to accept normal then. Roll on to Feb 2017 feeling dreadful I asked it to be repeated and it was 147.

Things change a lot in a few years and a lot of the symptoms are the same for thyroid and b12 deficiency x


Hi Emyloulou,

I appreciate you taking time to reply. I am going to ask to get retested when i next see my GP, as it is some time since I was last tested.



Hey, I have the same symptoms but my B12 was very low, your B12 levels seem fine. Have you tested Lyme? My GP suspected I had that.

Good luck!


Hi Marybrown06,

Thanks for responding. I've never been tested for Lyme disease and it's never come up in conversation with the GP. Again, something I'll look into.




It is possible to have the symptoms of B12 deficiency with B12 levels that are normal range. I was highly symptomatic, with multiple neurological symptoms, with B12 levels from 300 -500 ng/L.

Symptoms of B12 deficiency

pernicious-anaemia-society.... See Checklist PDF on right of page

Functional B12 deficiency

Some people can have functional B12 deficiency where there is plenty of B12 in the blood but it's not getting into the cells.

Functional B12 deficiency is mentioned in this next link.

B12 books I found useful.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies. Think there is something in this book about being symptomatic with normal range B12 results.

Link about Active B12 (Holotranscobalamin)

hematologist advised that I had “normal hemoglobin and B12 and normal appearance of red cells…”

I think it's possible that the haematologist was looking for signs of anaemia and macrocytosis (enlarged red blood cells). It's possible to be symptomatic for B12 deficiency without anaemia or macrocytosis.

Links about blood tests


Full Blood Count (also known as Complete Blood Count)

Folate Deficiency

Other conditions

There are others conditions that have symptoms that can overlap with those of b12 deficiency. Having an auto-immune condition (Coeliac disease) can increase the chances of developing another auto-immune condition. Has GP carried out tests to exclude other possible auto-immune conditions?

Risk factors for PA and B12 deficiency


I am not medically trained just someone who has struggled to get a diagnosis.



I read your post with interest as I have had severe fatigue and other B12 deficiency symptoms for years and decided to have the Viapath test at St. Thomas's in London too. My results were very similar to yours with my active B12 being over the range they test for. It was all very confusing as I was convinced I had a B12 deficiency. I, like you, didn't bother to tell the doctor I had gone for the tests but started taking 1000mcg of B12 daily.

Initially I took 5000mcg sub-lingual but found they gave me a headache so have been taking the lower dose for a few weeks. I have to say that my fatigue has improved slightly although my memory is still dreadful. I don't know if you are taking any B12 but given that it is not dangerous why don't you give it a try. I also take folic acid which I read about on this brilliant website. It took about 6 weeks to see a difference but there is an improvement.

I do hope you will feel better soon.


You may also like...