I feel like finding this condition has been a light bulb moment. I’m a 33 year old female and have struggled with low folic acid and have been repeatedly prescribed 5mg for 3 months, 3 months break, levels drop, cycle repeats for years. My B12 has remained around the 300 mark. The diagnosis for this was due to a bad bout of migraines for which my dr ordered bloods.
The past four weeks I have experienced a new symptom of pins and needles tingling in my arms, hands and feet which has been scary. Also weakness, so holding my hair dryer or the petrol pump has been tricky. I’ve felt dizzy. Googling led me to this site.
I’ve always had a very bad memory, and I am diagnosed with IBS and under investigation for chronic constipation (mri and xray this month). I’ve also been told I have depression and anxiety in previous years. I have fatigue but put it down to being a mum to young children. I think it’s unrelated but I also have polycystic ovary syndrome.
I have a drs appointment on Tuesday to discuss this as I really feel like this could be the underlying condition causing my symptoms all these years - I wanted to ask if people agreed or disagreed, and more importantly exactly what blood tests to ask the doctors to do as I feel I will probably be told I’m wrong.
Thank you for any information or advise you can give,
Chloe
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Cathjack
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It sounds like you are on the right track to me, and I don't think the PCOS necessarily unrelated. You might like a look at this pcosnutrition.com/b12defici... Unfortunately testing for B12 deficiency is far from straightforward, with no test able to absolutely rule out a deficiency. Your approx 300 B12 might be enough for some but is absolutely not enough for everyone, and the interactions between folate and B12 are complex. Start with a serum folate and serum B12, add active (holotc) B12 if they can do it, but ideally you want a homocysteine and MMA (methylmalonic acid) as well. None can rule it out, but could rule it in. Some do better with one form of folate or B12 rather than another (three types of folate as supplements that I am aware of and four types of B12), but test first as supplementing skews results. Best wishes
I will post a lot of info so you may want to take a few days to read through it all.
Maybe get a supportive friend or family member to read through it with you.
Some links may have details that could be upsetting.
I'm assuming you're in UK. It's helpful to know which country you are in as patterns of treatment can vary between countries.
One point jumped out at me when I read your post
"have been repeatedly prescribed 5mg for 3 months, 3 months break, levels drop, cycle repeats for years. "
My understanding is that a person with both B12 and folate deficiencies should start B12 treatment first.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. More about this in some of the other links below.
From personal experience, I can tell you it's possible to have severe symptoms of B12 deficiency with normal range serum B12 results. I had neurological problems including dementia symptoms and spinal symptoms with most serum B12 results between 300 - 500 ng/L.
You may want to look into Functional B12 deficiency, this is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops deficiency symptoms.
MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional b12 deficiency.
Blog post about being symptomatic for B12 deficiency with normal range serum B12
I prefer to put queries about treatment/diagnosis into a letter addressed to Gps and maybe practice manager as well as I feel this is harder for GPs to ignore.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
To my mind this statement means if you have the symptoms, with a normal serum B12 result, you should get treatment.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Cautions section in above link says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines
I urge UK forum members to find out what B12 deficiency guidelines their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland are using and to compare them with NICE CKS document.
If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to your ICB or Health board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local b12 deficiency guidelines are not helpful. See blog post below.
If you were tested for coeliac in the past and had a negative result in tTG IgA test (usual test for coeliac) check guidelines to see if GP followed recommended diagnostic process....some don't.
A person with coeliac disease can get a negative result in tTG IgA test if
1) they have IgA deficiency
IgA is an immunoglobulin.
Have you had a total IgA test?
2) they were not eating enough gluten prior to blood being tested.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.
Some UK forum members turn to self treatment when NHS treatment is not enough.
Some get extra b12 injections from private GPs or beauty salons, some try high dose oral tablets (1000mcg or higher) but these don't work for some people. Some as a last resort try self injection (SI), there is a pinned post about this.
Time is of the essence when treating B12 deficiency.
Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the brain and spinal cord may be affected.
B12 deficiency can cause damage to the myelin layer around nerves. B12 is also a co-factor in the production of neuro transmitters such as dopamine and seretonin.
A serum blood result of 300 does not mean that that you don’t have B12 deficiency / Pernicious Anaemia. You can have a normal B12 result and be deficient. If you have the symptoms of deficiency you should have treatment.
But the trouble is that most doctors are so ignorant about the condition and also very arrogant . It can be a terrific battle to get B12 injections . at a time when one feels so very unwell . Thats why we have all had to turn to self-injecting.
thanks to everyone for your replies. Sorry I didn’t get back straight away, I am in the UK and the numbness and pins and needles in my feet and hands spread and got worse so I came to hospital yesterday and have been kept in since. I explained what symptoms I had but they wanted to keep me in to check for strokes or tumours. I am still convinced it is pernicious anaemia and even though they said my bloods were ok (I don’t know what they are yet waiting for the copy of the results) they said they’re going to discharge me with folic acid and B12 so hopefully that will help.
Please read through this a little bit at a time when you're home as I don't want you to be exhausted.
"even though they said my bloods were ok"
They should explain to you what they mean by this statement and I think you are within your rights as a patient to ask and be told what blood tests have been done.
When you get your results
1) Check if they tested you for PA (Pernicious Anaemia).
This is usually a test called Intrinsic Factor Antibody test (IFA or IFAb).
A negative result in IFA test does not rule out PA (Pernicious Anaemia).
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Hello Cathjack, (Chloe), I am not very familiar with polycystic ovary syndrome, but here is what I can advise you about.
Vitamin B9 (Folate or Folic acid) is an essential part of processing with Vitamin B12, without one you can have problems with the other. A folate deficiency will mask a B12 deficiency. So if/when a dr. says you tested low for folate, you better believe you probably are low in B12. I went to various doctors for several years especially speaking here about the last 2 years. Last year and the year before, she gave me a physical for each year and said I passed with flying colors, no problems no issues whatsoever, except last June (2022), I was a little low in folic acid. No problem she said, and prescribed me some folic acid tablets. I took them for 4 straight months until one day in October I had an incident. June -October I was working a medical coding job from home and I was having severe migraine-like headaches and felt like I had the flu the entire time. Then one day I was about to have lunch and I could not catch my breath and ended up passing out. My wife was wiping my head with a cool wet washcloth when I woke up and then I began to start crying. I men like crying as though someone close had just passed away and I couldn't stop. My wife was worried and called emergency service. They came out and told her it was all in my head (in other words I had lost it/was crazy whatever). That's when I knew something was seriously wrong with me. I immediately jumped into research and self-diagnosed myself with pernicious anemia. I eventually made an appointment with a hematologist, who said there was absolutely nothing wrong with me and said to my wife, "he is a hypochondriac". He said he would go on and order a test for me to test for anemia, but that it would be a waste of his time and my wife's time because I was just looking for attention and may have Munchausen syndrome as well. He also said he would be shocked if the test came back positive. Well, the test came back positive and I now have an official diagnosis of pernicious anemia due to intrinsic factor-blocking antibodies. This may not be your problem, but I went through over 2 years trying to cope with this terrible feeling and being sick and everyone saying I was looney. Our primary care doctor gave me 6 B12 shots and then refused to give me any more because my lab blood values said my B12 was 1600 (200-900 is the range here in the USA). You cannot go by lab tests as they will often if not usually be incorrect. You must study/research/learn this for yourself. IOf have read this to this point you know more than doctors about B12.
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