Hi everyone! So I was hoping to get some advice on whether it's likely I have pernicious anemia based on my symptoms and B12 readings.
My symptoms started back in 2011, when I was only 18. I started having these weird "episodes" where I would feel dizzy/almost drunk, my legs and arms would feel heavy and have a tingling/burning sensation, my speech would get slurry and I'd have to lie down. Since then, the episodes have been a recurring issue, at some points in my life it was daily. They usually last around 30 minutes or so and then I come out of it feeling a little tired but almost back to normal.
Alongside these episodes, I also have a range of symptoms which have gradually cropped up over the 11 years I've been dealing with this. Symptoms are:
- Fatigue, sometimes having to breath through my mouth and feel like I can't catch my breath
- Unable to exercise or have my heart rate get too high without feeling light headed
- Restless legs, which come on during the episodes and worsen when I eat sugar
- Very pale skin and brittle nails
- Complete loss of libido
- Cystitis and severe sensitivity during sex, sometimes bleeding
- Brain fog, feeling down and lack of motivation
- Buckling legs from feeling exhausted
- Gastro issues such as bloating, constipation, sensitivity to gluten and dairy
- Heart palpitations (only came about in the last 2 years)
- Headaches
- Sometimes after sugar/carbs, I yawn constantly to the point my jaw aches, and get a metallic taste in my mouth
- Sensitive and dry skin
- Clumsiness, bumping into things and dropping things
- Memory issues and struggling to keep conversations
I have been tested for everything under the sun! I've seen a specialist for blood sugar/ endocrine issues and everything came back normal. Same for gastro problems, thyroid issues. I've been tested for coeliac disease which came back negative, including a gastroscopy. My iron/ferritin levels have always been in the normal range. My Vit D does get low often, but I put this down to not going out in the sun and living in rainy Yorkshire, UK.
However, I discovered that my b12 has been gradually reducing over the years as my symptoms have been getting worse. I looked at previous test results and it's as follows:
- July 2017- B12 serum level 272 ng/L
- June 2020 - 126 ng/L
I was given B12 injections in June 2020 through the NHS, but was told to come back in 9 months after only 2 injections. I decided to self inject using powder methylcobalamine from Oxford Biosciences subcutaneously, and injected every day for a few months, then every week until January 2022.
B12 serum level in November 2021 was up to 475 ng/L. I decided to stop injecting in January 2022 as I wanted to take a break to see if my B12 would reduce again.
Skip to October 2022, I found out I'm pregnant and decided to get my B12 checked, to discover it's already fallen to 251ng/L. This would be in a 9 month period, despite regularly eating meat, fish and dairy products.
Based on all the above (thank you so much for reading this far!!), do you think it's likely I have pernicious anemia? I haven't found a single article or resource online that can explain the "episodes" I have, and the only medical evidence of something not adding up is the B12 levels.
Your help is so so appreciated!
Best wishes,
Alice
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apearson93
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It sounds very much like it to me ! I also had amongst the other symptoms , the most terrible “ gut” problems , exactly like yours . I took an antibiotic called Symprove and once I received the correct regularity of B12 injections, recovery ensued , never to return. I have confirmed Pernicious Anaemia ( positive Intrinsic Factor Antibody test ) Pernicious Anaemia I.F. antibodies destroy the parietal cells which produce The Intrinsic Factor ( essential for the absorption of B12 ) and stomach acid ( needed for absorption of all vitamins , minerals and trace elements. ) Stomach acid also keeps the stomach flora ( good bacteria) healthy . So ! Untreated or under treated Pernicious anaemia patients can have the gut problems that you describe., because of lack of stomach acid — called Achlorhydria/ Hypochlorhydria.
The following information might be of interest -
How to diagnose Pernicious Anaemia
by elimination when you have B12 deficiency symptoms .
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, but have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .
PERNICIOUS ANAEMIA IS THE MOST COMMON FORM of B12 D
Thank you so much for your thorough reply! Did you also have similar symptoms to what I described, other than the gut problems? It's the "episodes" I have that I just can't seem to explain!
Also do you happen to know if you can get an Intrinsic Factor Antibody test through the NHS, or would I need to go private to get this done?
The gastroscopy I had done recently showed signs of mild Gastritis, but the other diagnoses you mention I would need to request some further testing.
Also a lot of my symptoms started to improve when I was injecting methylcobalamine, but didn't fully recover. However I only got my levels up to 475, so potentially I gave up too early with the injections and need to get my levels higher.
Yes , I had other symptoms . Brain fog , terrible fatigue , heart palpitations , almost fainting with them ,weakness , breathlessness, numb feet , bumping into things, terrible memory , unable to find the right words . There are many other symptoms for P.A.
You can get the IntrinsicFactor test on the NHS ,nand you should have had that with the symptoms that you have . One problem with it is that about 50% of P.A. patients test negative with that test M when in fact they can have P.A.
Any nerve can be affected , because b12 is the main constituent of myelin which is the sheath that covers nerves .
A huge problem is that the medical profession is very ignorant about P.A. / B12 deficiency . I failed to get my B12 injections regularly enough from my GP , and had to self +inject to get better . I inject once a week .
If you fail to get your B12 injections often enough , self injections would be the best solution . I will get in touch through private messaging .
Scurrilously lifted quote from veganhealth.org site :
"There are 3 main theories as to how B12 deficiency causes nerve damage:
1. B12 deficiency produces a lack of methionine for conversion into S-adenosylmethionine (SAM) (9). SAM is required for the production of phosphatidylcholine (10) which is part of the myelin (the fatty material that insulates many nerves) (10). See Figure: Vitamin B12 Cycle.
2. The inability to convert methylmalonyl-CoA (a 3-carbon molecule) to succinyl-CoA (a 4-carbon molecule) results in an accumulation of propionyl-CoA (a 3-carbon molecule). Fatty acids are normally made by adding 2 carbons at a time to an even numbered carbon molecule. In an overabundance of 3 carbon molecules, large amounts of unusual 15-carbon and 17-carbon fatty acids may be produced and incorporated into nerve sheets, causing altered nerve function (11).
3. Nerves are damaged by different hormone-like molecules (cytokines, tumor necrosis factor, and epidermal growth factor) which become unbalanced in the nerve tissue in B12 deficiency (8)."
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B12 is not itself a significant component of myelin but B12 is critical to the proper function of the methionine and folate cycles which are essential to DNA repair and creation of many of the important lipids used in myelin sheaths.
These lipids include :
Cholesterol
Cerebroside
Sulfatide
Ethanolamine Phosphatides including Plasmalogens
Lecithin
Sphingomyelin
Phosphatidylserine
Phosphatidylinositol
You may recognise a significant proportion of these as Choline derivatives. Some, such as (soya) Lecithin, Phosphatidylserine, Cholines such as Choline Bitartrate, CDP-Choline and Alpha-GPC and Plasmalogens are available as dietary supplements, but the usefulness of increasing dietary intake of any of these to myelin sheath formation and repair is not yet clear.
"In the peripheral nervous system, myelin is formed by Schwann cells, which are surrounded by a basal lamina. Extracellular matrix (ECM) molecules in the basal lamina play an important role in regulating Schwann cell functions, including adhesion, survival, spreading, and myelination, as well as in supporting neurite outgrowth. Collagens are a major component of ECM molecules, which include 28 types that differ in structure and function. A growing body of evidence suggests that collagens are key components of peripheral nerves, where they not only provide a structural support but also affect cell behavior by triggering intracellular signals"
The most common proteins in collagen are Glycine, Proline and Hydroxyproline:
"In general, collagen can be represented as a repetition of the Gly-X-Y triplet, where glycine (Gly), i.e., the smallest amino acid, occupies every third position in the peptide sequence of the single chain, so as it can be positioned in the core of the triple helix, closely packing the structure. Conversely, side groups in the X and Y positions are exposed to the surface for the sterical interaction with other residues and are frequently occupied by proline (Pro) and hydroxyproline (Hyp), respectively"
Thank you very much for all that information Technoid ! It’s all amazing . Although it states that B12 is not the main constituent of myelin , it is the one that seems to be key in getting rid of our awful symptoms, if timely administered and at the regularity that we require , which varies from patient to patient .
For a non scientist like me , the information is overwhelming., but nevertheless interesting and absorbing . I will send the information to my GP ( of course I won’t !! , Doctors are not interested , and are infuriated if you try to inform them about B12 deficiency! )
Thank you for all your replies! It's reassuring to hear that some of you have experienced similar symptoms.
Just had a very infuriating call with my doctor who has reluctantly agreed to do the IFAB test, but has insisted that my levels are "healthy" and the drop in levels from 475 to 251 doesn't make a difference when it comes to getting B12 injections through the NHS. Where I live, my levels would have to be lower than 110 for them to offer injections, and with me being pregnant I don't want to take the risk of getting my levels down to that point again.
I simply don't understand how a doctor can be so dismissive of my severe symptoms that have been occurring for 11 years, and since the age of 18. I'm feeling very defeated.
A side note, I also have ADHD and it seems that low B12 levels make ADHD symptoms worse. I was previously SI but I have a big part of me that feels I'm making up the whole PA diagnosis and it feels wrong to be going against the doctors opinions.
That's why this forum has tens of thousands of members, unfortunately. Your story sounds very familiar. I recently posted my symptoms in chronological order, from mild vague symptoms to full-blown numbness. healthunlocked.com/pasoc/po...
My b12 was normal the ENTIRE time, and 3 (or 4) IFAB negative tests, 2 of them just this year. 🤷♀️
I should add, B12 and folate are both extremely important in pregnancy, so I would not delay treatment if I was you. Health spas / wellness clinic offer non prescription B12 injections. Get A Drip is one I know of in the UK. As an immediate and short-term solution.
Some of the links I post may have details that could be upsetting so you may want to read through the information with someone supportive.
UK guidance on B12 deficiency indicates that people who are symptomatic for B12 deficiency should be treated even if serum (total) B12 is within normal range.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Local B12 deficiency guidelines
Try to find out what's in the local B12 deficiency guidelines for your ICB (Integrated care Board or Health Board. Search forum posts, search online or submit a FOI (Freedom of Information) request to ICB/Health board website asking for a link to or copy of local B12 deficiency guidelines.
Read this blog post if you want to know why I suggest finding local guidelines
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pernicious anemia advice/ reassurance 
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