New here - some advice if you can - Pernicious Anaemi...

Pernicious Anaemia Society

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New here - some advice if you can

Scully12
Scully12

Hi

I came across this wonderful forum a couple of months back when I was researching B12 deficiency, as my doctor had included it in my blood test request following a whole host of ongoing symptoms which include serious fatigue and brain fog, random breathlessness, numbness in hands and feet’s and lots of tingling across my body. I’m 46 in 2 weeks but at moment feel at least 76.

My result for B12 was 192 ng/ L (181-900) and my serum folate 10.6 ug/L (no ref range provided)

When I by chance looked back at my bloods taken in August 2016 I noted that my b12 was 240 ng/ L (211-800) and it’s got me thinking that it’s B12 deficiency that causing my symptoms. I don’t lack B12 in my diet as eat meat and fish 4-5 times per week and it’s a standard joke about my obsession with eggs as have always eaten at least 1-2 eggs per day for the last 6 years (my favourite food!).

In the last 3 years I’ve gone from running marathons (completed a 3 in 3 days challenge at one point) to purely just walking a few miles a week and I’m scared that if I get more fatigued I will be further limited to what physical activity I can do. This reduction in fitness over 3 years has resulted in my cholesterol rising from 4.2mmol/L to recent test of 5.9mmol/L.

After recent test results I was invited to see the nurse and hoped the B12 would be picked up but she just wanted to discuss my cholesterol. She made me appt with doctor after I voiced my concerns and, although the doctor is very nice person, when I gave her a written list of symptoms and questioned the change in my B12 and also my low serum transferrin -( 2.28 g/L) she said B12 was within range and the serum transferrin was not of concern as all other iron tests where within range.

She suggested some more tests (and also hinted it might be my age and peri menopause) - CRP, ESR, Vit D and for some reason also repeated my Calcium test. CRP and ESR were fine. vit D was fractionally low and I’ve been advised by letter to take supplements containing 800iu-1000iu. The other result (which I’ve only seen as I requested copy of results) shows serum calcium as low at 2.17mmol/L (2.20-2.60) but I’ve heard nothing back so assume they don’t think this is an issue.

I’m now planning my next steps as don’t believe this is to do with my age and would welcome your advice.

I plan to make another appt to see the doctor next week and highlight my ongoing symptoms, particularly the numbness and tingling which has gotten worse. I’ve already advised her that I’m self employed and my symptoms are limiting the amount of consultancy work I can take on. I will bring to her attention that having researched B12 deficiency in more detail that I feel it would beneficial if this was investigated further in light of my symptoms. I would be requesting that I have further blood tests to explore whether I lack the IF antibody (realise that this might not show but got to be worth a try) and the day after that blood test that I’m treated with loading doses as per the N.I.C.E guidelines with regards neurological symptoms.

Thanks in anticipation of your replies.

Admin Note: image contains repeated reference to different medics' names - image deleted - posted asked to redact and report image.

6 Replies

Forgot to mention that I was also treated for H Pylori just under 2 years ago and took the 7 day triple therapy - I wonder if this has caused problems or just added to them.

KimberinUS
KimberinUS in reply to Scully12

did they do repeat h pylori testing at least 8 weeks after your h pylori treatment to see if it was gone? treatment may have beat it back but not killed it. it can recolonize so testing after treatment is needed. it cannot be done immediately after treatment.

otherwise, i would say you have your ducks in a row except for possibly requesting a mma test. but i read that is only reliable if you haven't been supplementing, even with tablets.

best of luck and health

Scully12
Scully12 in reply to KimberinUS

I didn’t have the test again after 8 weeks so will raise that with Doctor as could still be the issue. Thanks KimberinUS.

clivealive
clivealiveForum Support

Hi Scully12 your B12 at 192 ng/ L (181-900) is borderline low and your doctor should be treating your symptoms not just looking at her computer screen.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

The H-pylori/treatment may have been responsible for lowering your B12 two years ago and it would appear you are having trouble raising it through diet alone.

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. Have you started supplementing?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Scully12
Scully12 in reply to clivealive

Many thanks for your reply clivealive. Will definitely use the BSH guidelines - perfect for my situation!

I've now started supplementing with Vit D (only 3 days so far as letter came Tuesday). Only symptom I've had relating to vit d would be fatigue. Will continue with the supplements as don't do the sun much without sun cream (my dad had melanoma and passed away 2 years ago so I've gone slightly more obsessive of being in sun without factor protection cream).

clivealive
clivealiveForum Support in reply to Scully12

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.

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