Introducing myself: Hi, I'm new to the... - Pernicious Anaemi...

Pernicious Anaemia Society

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Introducing myself

Permexpi profile image
6 Replies

Hi, I'm new to the forum and thought I'd share a brief summary of how I ended up here.

It's hard to say exactly when my symptoms started but in 2019, when I was 62, I found myself so persistently lacking in energy that I decided I should mention it to a doctor. The first doctor I saw did some blood tests and an ecg which all came out normal, offered me antidepressants, which I declined, and suggested I try gradually increasing the exercise I took. I managed about five minutes a day of gentle stretching for a while, but a 10 minute walk in the park left me with palpitations and laid me up in bed for a couple of days. I tried again with another doctor who, rather wearily, suggested I try eating healthy food and getting more sleep.

Then 2020 came. I stayed in, ate (mostly) healthy food and got plenty of sleep.

In 2023 I went for a belated annual medication review. A nurse practitioner did the usual blood tests but then, when I mentioned how I'd been feeling, suggested another ecg and also checking my B12 levels. When the results came back I got a call asking me to come in to discuss getting B12 injections. I'm due to get the first next Tuesday. I'm probably getting a bit over-excited at the thought of maybe having some energy again.

I'm reading everything I can find on this subject and trying to sort the good advice from the dubious. This looks like a good place to continue learning, I'm glad I found it.

If you're wondering about the username it's inspired by artist Gemma Correll's wonderful cartoon "I’m not an early bird or a night owl, I’m some form of permanently exhausted pigeon. "

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Permexpi
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6 Replies
Narwhal10 profile image
Narwhal10

Hello welcome,

Yes, lots of information here. We post articles from proper medical, scientific such as biochemistry from a reliable source. There’s a couple of people who work study it that field, they do explain in simple terms.

B12 is no magic fix, it is a journey. You can identify 4 years of sheer exhaustion and palpations.

Many of us take a multivitamin and minerals.

Love your name and how it was sourced. One of my favourite books is Jonathan Livingstone, a seagull who could not conform to the flock. It was not defiance, he just knew he was different and had to be authentic. 😊

jaybirdxNHM profile image
jaybirdxNHM in reply to Narwhal10

Smashing book!!

wedgewood profile image
wedgewood

Welcome from me too . You will find this forum very useful and informative, You will learn lots by just reading the posts .

I’m assuming that you have plenty of b12 foods in your diet — meat or fish , dairy products and eggs . So you might have Pernicious Anaemia, an autoimmune condition , difficult to diagnose sometimes P.A. patients cannot absorb B12 from food . It is an autoimmune condition that requires. B12 injections FOR LIFE .

. One thing that you should know about B12 —You cannot overdose on it — no matter what any doctor says .

Good idea to take a daily modest B 9 ( folic acid ) tablet . 400mcg , like pregnant women take . It works together with B12 .

Get a print out of your blood test results. You need to know the result ..

Very best wishes .:

WiscGuy profile image
WiscGuy

Congratulations on finding a smart nurse. Hopefully your doctor is equally informed, though that is a long shot.

I think one of the best medical journal articles on B12 deficiency is "The Many Faces of Cobalamin Vitamin B12 Deficiency". A couple of essential pieces of information from this article: B12 deficiency patients with neurological symptoms need injections of B12 every other day, or twice a week, or, at minimum, once a week, for two years, and, also, it has been found that some patients can never reduce this frequency without a return of symptoms. A doctor who knows this essential information is a rare bird; others persist in wrong-headed thinking and refuse to prescribe injections at this frequency. Therefore, many people on this list purchase B12 from nations where it is available over-the-counter, and self inject B12 at a frequency which keeps symptoms at bay.

My own view is that my medical goal should be a return of functioning lost due to nerve damage resulting from many years of B12 insufficiency and B12 deficiency. Medical science knows nothing about restoration of function lost to the nerve damage of B12 deficiency. What is known is that restoration of nerves, and associated functioning, depends on the availability of sufficient B12. Again, no one knows what that is. Since B12 is not toxic at any level, I personally inject B12 daily. Just recently, after 2 years of daily injections, I seem to have turned a corner as regards headache and brain fog. I have been taking 13 nutritional supplements (including B12 injections), and am now adding three more nutritional supplements, again because I want building blocks for restoration of nerves and myelin to be available when needed.

Litatamon profile image
Litatamon

Hi!

These are great links to arm yourself against the misinformation that will probably be thrown at you, by your doctors. And that includes specialists. They are more than often not fully educated in this area. And some will confidently throw out erroneous concepts.

They are concise and contain medical footnotes.

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you.

Permexpi profile image
Permexpi

Thank you all for the replies and information! I appreciate it.

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