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long time Pernicious anaemia sufferer!

Ossoryhill profile image
9 Replies

I was diagnosed with Pernicious anaemia In 2015 so I probably have had it for years before.

After initial intensive daily treatment I have had a monthly injection since then.

when I run over time I have numbness and tingling in my hands .

 IRecently had a b 12 injection and three days later I have experienced tingling and numbness in my hands and arms. I have also noticed some uncharacteristic memory loss and confusion- slight but noticable.

I also have an Aortal Valve leake diagoised in 2019.

Are they linked and why is my condition exibiting pre Injection symptoms post injection?

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Ossoryhill
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9 Replies
jade_s profile image
jade_s

From what I've read on various forums, it's not unheard of to spontaneously start needing more frequent injections. Perhaps all along they were not frequent enough and it finally reaches a tipping point (my own hypothesis). A trial of more frequent injections could be useful.

Or it could be a folate issue - some people go low without supplementing and/or need more than others. Though I suppose you would've run into this problem long ago.

Heat or light damage is another thing I always mention when people say injections no longer seem to be as effective.

I don't know of a connection with aortal valves but others might.

Do you have thyroid issues?

And welcome to the forum! :)

deniseinmilden profile image
deniseinmilden

I agree with jade_s

It might be worth trying more frequent jabs - at least that's a safe option - to see if it helps or to rule it out.

Are you missing and other nutrients? Folate, potassium, magnesium, iron and Vitamin D are the main ones but all vitamins and minerals, particularly the the B vitamins, are essential for the efficient working of B12 in nerve function, energy release and cell repair.

Ideally you will get them from your diet but depending on what has caused your B12 deficiency, you may need to supplement.

I have a prolapsing tricuspid valve (much less serious than an aortic one) and I get numbness and pins and needles, particularly in my arms, at night. At times I have heart block arrhythmias too but I'm not convinced that they are directly linked to the heart valve problems.

I've been doing daily SI for 7+ years so mine is not due to a lack of B12 but I have fairly extreme malabsorption problems so it could be due to other deficiencies causing issues with the processes that use B12.

Gambit62 profile image
Gambit62Administrator

The most likely explanation is that there is something else going on. Have you discussed with your doctor at all.

clivealive profile image
clivealiveForum Support

Are you in the U.K. Ossoryhill and are your B12 injections cyanocobamalin?

Do you know what your folate and iron levels are.

I've had P,A for over 50 years and I still "feel the need" in the run up to my next injection

I wish you well

Sleepybunny profile image
Sleepybunny

Hi,

A few links that may be of interest.

It's helpful to know which country you are in as can then post the most relevant info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 institute -Netherlands

(has useful lists of causes and symptoms)

b12-institute.nl/en/home-2/

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment guidance is out of date in above book.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I'm not medically trained.

Polaris profile image
Polaris

Not a medic Osseryhill but, as you’ve had PA for many years, it’s highly possible that monthly injections have not been enough and you need more frequent injections, which is why many of us on this forum self inject, in order to prevent further symptoms and heal existing. You’ll find lots of information and recommended reading here and by joining the PAS.

Re. leaky valve (p.f.o), I’m wondering if you’ve had thyroid testing? Research reveals that 40% of those with B12def/PA also go on to have thyroid disease, and vice versa. Four in our family have both.

At one time, a scan I’d had done revealed two leaky valves, but, after optimal thyroid treatment, a further scan revealed only the one I’d had since birth, which I’ve read is quite a common condition and, interestingly, may be connected to migraine with aura.

Sea-blue profile image
Sea-blue in reply to Polaris

Hi Polaris , very late reply to your post here but I stumbled across this today . Fascinating because I was born with sub aortic stenosis , ( narrowed aortic valve). I suffered with aura migraines since age of 14 and was diagnosed with PA . Can’t all be coincidences can it?

Sea-blue profile image
Sea-blue

Hi Osseryhill, very late reply to your post but I stumbled across this and had to comment. I was born with aortic valve stenosis( narrowing and leaky valve, had aura migraines since age 14 and now diagnosed PA which I’ve prob had for years .Wondering if there’s a connection too

Polaris profile image
Polaris

I agree no coincidence Osseryhill ! It was my son, studying for diving instructor exam, who discovered and told me about the research connecting a pfo with leaky valve and migraine with aura. It seems to have skipped a generation in our family but my granddaughter has this condition - alas, though with v. sick headaches……...

I’m very old now, having regularly taken a Garlic, Hawthorn & Vitamin E supplement, and learned to avoid red wine, chocolate, tomato and cheese all on the same day, as this always seemed to set it off. Stress was another trigger.

Interestingly, I can’t remember having this condition at all since thyroid and B12 medication has been optimal 🤔

Would be interesting to research this further - best wishes for good health x

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