Low Vitamin B12: Hi everyone, I'm new... - Pernicious Anaemi...

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Low Vitamin B12

Cali25 profile image
8 Replies

Hi everyone, I'm new on here so just to give a bit of information about me. I have hypothyroidism and type 2 diabetes for approximately 20 years which are both well controlled after finally getting a doctor to medicate me to the the low end of the TSH range, currently 0.57. Just to add to this I have a family history of PA mother and grandfather. I've just had all my bloods done and it has shown vitamin B12 at 292 which is at the low end but still inside the range. This explains all the symptoms I have had lately! I get tingling in my hands and feet, itchy skin also a burning sensation on my legs. Some days the brain fog is terrible and feel so larthargic an fatigued it takes me all morning to come to. Having discussed all this with my doctor he has dismissed it and said I don't have anaemia and won't get any treatment and then said if you don't like it see someone else! So now very concerned and don't know where to go now, any advice would be appreciated, thanks.

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Cali25
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Gambit62 profile image
Gambit62Administrator

well your GP could obviously do with some training to improve inter-personal skills.

Unfortunately you are in a position where it is difficult to dismiss the symptoms you have as being caused by another condition (eg diabetic peripheral neuropathy).

I presume you are on metformin if you are type 2 - causes B12 absorption problems in about 40% of people so a B12 deficiency is quite a likely outcome - particularly if you have been on metformin for 20 years.

And unfortunate that your GP is confusing B12 deficiency with anaemia - something like 30% of people with B12 deficiency present with neurological problems well before any sign of actual anaemia - macrocytosis/megoblastic anaemia - shows up in the blood work.

I'd suggest that you write to your GP pointing out the above facts - not sure if I can get back to the 40% link between metformin and B12 absorption problems but may have been a link from this article

jdmdonline.biomedcentral.co...

in terms of B12 deficiency being present without macrocytic anaemia - the reference would be the BCSH guidleines on cobalamin deficiency.

If the letter with references doesn't get through then would suggest that you

a) join the PAS proper and see if they can provide more specific support

pernicious-anaemia-society....

b) change GPs - though there is no guarantee you would get one who is any more aware than your current GP but may be they would have better interpersonal skills and actually be prepared to treat you like an adult rather than a petulant child.

You may need D3 and K2 to increase your serum D to 60 to 80ng/L and B12 with its supporting vitamins. I was diabetic2 taking metformin and now realise a change from life in the sun to shift work with consequent disruption of my sleep pattern and non D absorption was the cause of my woes. See drgominak for a fuller explanation on the net.

clivealive profile image
clivealiveForum Support

Hi Cali25 I am not a medically qualified person but can empathise and sympathise with you as I too am Type 2 diabetic and have had P.A. for 45 years.

As Gambit62 says it is a known fact that (if you are on it) Metformin can cause absorption problems with Vitamin B12 and B12 Deficiency is often associated with other autoimmune diseases such as diabetes and thyroid problems.

Your doctor also should be aware that P.A. can be inherited so at the very least he should have you tested for it.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

I'm not sure whether you are male or female but:

Women with a history of infertility or multiple miscarriages.

Do you "see yourself" among any other of the above people?

I am distressed and disgusted with your doctor's attitude but sadly it appears to be all too common where Vitamin deficiencies are concerned.

Was your Folate tested at the same time as the B12?

If you get nowhere by writing to your doctor, as Gambit62 suggests - change doctors - or perhaps consider supplementation or self injecting with B12.

I wish you all the very best.

Cali25 profile image
Cali25

Thanks everyone for your replies going to get a copy of my blood tests and see where I go from there. Clivealive, am female in my 60's and very much alive although suffering.

Polaris profile image
Polaris

A really interesting research paper I came across yesterday. Put simply, it shows the connections between other Autoimmune diseases and the progression to PA via deterioration of the gastric mucosa that absorbs B12. Together with the pinned posts, it could help persuade your GP to treat you urgently. If not, I personally, would start to self inject to avoid permanent neurological damage.

ncbi.nlm.nih.gov/pmc/articl...

"PA is associated with atrophic body gastritis (ABG), whose diagnosis is based on histological confirmation of gastric body atrophy. Serological markers that suggest oxyntic mucosa damage are increased fasting gastrin and decreased pepsinogen I. Without performing Schilling’s test, intrinsic factor deficiency may not be proven, and intrinsic factor and parietal cell antibodies are useful surrogate markers of PA, with 73% sensitivity and 100% specificity. PA is mainly considered a disease of the elderly, but younger patients represent about 15% of patients."

"PA patients may seek medical advice due to symptoms related to anemia, such as weakness and asthenia. Less commonly, the disease is suspected to be caused by dyspepsia. PA is frequently associated with autoimmune thyroid disease (40%) and other autoimmune disorders, such as diabetes mellitus (10%), as part of the autoimmune polyendocrine syndrome.

PA is the end-stage of ABG. Long-standing Helicobacter pylori infection probably plays a role in many patients with PA, in whom the active infectious process has been gradually replaced by an autoimmune disease that terminates in a burned-out infection and the irreversible destruction of the gastric body mucosa. Human leucocyte antigen-DR genotypes suggest a role for genetic susceptibility in PA.

PA patients should be managed by cobalamin replacement treatment and monitoring for onset of iron deficiency."

Page 5:

"By using a DNA-based, sequence-specific oligonucleotide technology, we observed in our series of PA patients that the genotypes HLA-DRB1*03 and DRB1*04, which are known to be associated with other autoimmune disease (such as type 1 diabetes and autoimmune thyroid disease) were significantly associated with PA, compared to a control group (unpublished data), which supports the idea that genetic susceptibility for autoimmunity may play a role in PA."

Dr Datis Kharrizian, a leading neurologist and researcher at Harvard, has written two important books on Autoimmune Thyroid disease and the brain/gut axis. He advises a gluten free diet.

Very best wishes for better treatment Cali25

Cali25 profile image
Cali25

Interesting reading Polaris thank you, will be taking more information with me to my next appointment this week with a different GP. Hopefully he will listen to me. I got online access at my surgery so I could check my test results and guess what the doctors have blocked access to my medical records! What are they hiding I ask myself, as I haven't had any diagnosis of cancer or mental health issues in my lifetime, how can they use may harm your physical or mental wellbeing as a reason. If the doctor doesn't lift this when I see him I will put in a SAR to get them hopefully. Feel very much in the dark without them.

Cali25 profile image
Cali25

Got copies of my test results now, how do I add them on here from an iPad? Thanks

Polaris profile image
Polaris in reply to Cali25

I'm so sorry not to have replied before Cali25 - only just seen this -not sure whether your reply came into my inbox or what happened but have been a bit foggy with a bad virus since the New Year....

I'm glad you managed to get test results in the end and hope all goes well.

I use an iPad but am not sure you can post photo's from ipad on here - or it may be that I haven't worked out how to do this 🤔

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