B12 deficient - just wanted to share - Pernicious Anaemi...

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B12 deficient - just wanted to share

TheDukeOfDogs profile image
4 Replies

Hi all,

I just wanted to share my story as I've had so many thoughts and concerns rattling around my head these past couple of weeks that I don't know if I'm coming or going.

I have had occasional heart palpitations since at least late spring, but didn't really think much of it until a month ago when they became more frequent. On a weekend a couple of weeks ago my heart rate felt high and the palpitations were near-constant. Monday I went to the docs, she took blood and an ECG, and that evening she called to tell me that she wasn't happy with my ECG result and to get myself off to A&E for a more conclusive check. They took more blood, did two more ECGs, a chest x-ray and couldn't see anything to be concerned about and I was sent home, albeit with a referral to the local palpitations clinic.

The following day the doctor called but I missed her call. She left a message to ask how I was and that she would call back later and also mentioned my vitamin B12 was low. She didn't call back. Thanks to a mix up we didn't talk until Thursday. She said my B12 was low and that it would need replacing and to book a blood test which was for an IFA test. I couldn't get an appointment until the following Tuesday.

I had the blood test done, still waiting on the IFA test results but she did call to tell me that she had asked for my B12 to be retested from the same sample just to double-check, and it was still low and to book up for 6 loading doses of B12 which I have done, but the earliest they could start them was the 28th, because they want to start them on a Monday. I get the logic of that, but still, it will be 3 weeks since being told I am B12 deficient to actually starting treatment which is frustrating.

The weirdest part about all this is that the week before my trip to A&E I felt okay aside from some grumpy insides (I've been playing around with the fibre in my diet and I think I overdid it) and have not suffered from the common symptoms of B12 deficiency up to this point. I have no idea if it was my doctor or the hospital that checked but I'm glad they did because my levels on the two tests I've had were 88ng/L and 96 ng/L.

How can it be that low without me displaying more of the symptoms that so many of you suffer from? Don't get me wrong, I would definitely say that over the past few years, life has lost its sparkle, I have been too much in my own head, just existing rather than living, but I wouldn't say I've felt low, just kind of meh. Physically I've been okay, my job involves a good four miles of walking every day, as well as lifting and carrying things and I've not felt any less capable. I don't get it. I got into a habit of sleeping in the afternoons during lockdown when I was furloughed for 3 months but have been weaning myself off those in the past couple of months.

I am fascinated to see what effects the jabs have, to see if I feel any more switched-on, engaged and alive. Maybe I had slowly been feeling less of those things but it happened so gradually I barely noticed. It's just annoying I have to wait 11 days - I have been off work for two weeks already. The palpitations have stopped, but my heart rate was still higher than I'd like it to be. I mean, I feel a lot calmer but I have been mainly semi-laying down on my bed. My appetite, which has been non-existent, is coming back but eating is hard work. My stomach and insides in general still feel angry.

I am so confused because all this just came out of the blue. I have no idea what will come of it but maybe it will all work out in the end? That's what I'm clinging to. There's not much else I can do really.

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4 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I hope you see benefits soon from getting the injections.

When I suspected I had B12 deficiency, I was surprised when I looked at symptoms lists by how many symptoms I had that were typical. I had put some symptoms down to having a busy life and getting older.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

A negative result in IFA test does not rule out PA. It's possible to have Antibody Negative PA.

PAS website has lots of useful leaflets/articles and a page for health professionals that your GP may find useful.

Is GP going to test you for coeliac disease?

UK guidelines below suggest testing patients with unexplained B12, folate or iron deficiency for coeliac disease.

nice.org.uk/guidance/ng20

There are other causes of B12 deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Some UK B12 documents/articles

UK B12 documents

NHS article about B12 deficiency and folate deficiency

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Some forum members find that their doctors lack understanding of B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Two useful B12 books

B12 books I found useful

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

Martyn Hooper founded PAS (Pernicious Anaemia Society).

UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

I'm not medically trained. I've written more detailed replies on the forum which may be worth looking at.

Technoid profile image
Technoid

I recently read that:

"Congenital defects in plasma haptocorrin are asymptomatic, suggesting that this form of the vitamin is not physiologically important. Affected individuals show normal absorption and distribution of vitamin B12 to their tissues; however, they show low circulating levels of the vitamin and can be wrongly diagnosed as vitamin B12 deficient if other parameters [MMA, Hcy, FIGLU (formiminoglutatmic acid)] are not considered. The prevalence of plasma haptocorrin defects may be relatively high; one study noted that 15% of apparently healthy subjects had low plasma vitamin B12 levels."

sciencedirect.com/topics/ag...

But if you do recognise several of the symptoms from the pages Sleepybunny posted you may certainly be deficient. The symptoms can creep up on you so you don't realize how sick you are until it becomes really serious.

Normally, a serum B12 value that low would indicate severe deficiency but who knows, you may have this haptocorrin defect, especially if you dont have any symptoms. An active B12 test will measure the active B12, which is usually a much smaller proportion of the total B12 and may better indicate how much bio-available B12 you have. Could be worth checking active B12 and/or MMA.

Gen89 profile image
Gen89

My friend had b12 deficiency with no symptoms.

Ghound profile image
Ghound

Hi, So sorry you've been having such a rough and worrying time.With hindsight I realise that my B12 problems had been very slowly and insidiously creeping up on me , probably over many years until my health suddenly deteriorated markedly - like falling off a cliff !

I believe this is a common pattern of progression for many people.

At the time I felt so bad I'd no faith of ever regaining my health, even with treatment.

Thought it had been undiagnosed for too long to recover.

Well it took nearly six months of B12 injections every other day , but thankfully I now have a good quality of life.

Be firm with your doctor and insist on continued 'loading' injections for as long as your symptoms are improving - as per official NICE guidelines and detailed in the doctors BNF handbook.

It can be a slow road but keep going and don't lose heart as treatment will definitely help.

Hope you begin to feel better soon,

Very best wishes x

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