PA - newly diagnosed.

Allergies, blood and immune system
1

Hello all,

I'm a bloke in his mid 30s. I've just been diagnosed with PA. Luckiky, my doctor (NHS) was on the ball and, presented with my symptoms, immediately requested a blood test with, crucially, a B12 check. My B12 count turned out to be just 66. Doctor immediately put me on a course of five B12 injections. I've just had my second jab but actually feel a lot worse than I did before, Has anyone else experienced this?

My main symptoms remain as follows: dizziness, extreme tiredness (going to bed at 8.30pm) and brain fog.

I've a toddler, my day job requires a lot of judgement calls and I'm volunteer lifeboat crew often getting paged in middle of the night, so these symptoms are impacting heavily on all areas of my life. While i know I will need injections for life, I'm keen to get it managed ASAP. How successful are the injections likely to be?

I've been told I'm missing intrinsic factor (hence the IV approach) but I've nonetheless started upping my fruit and veg intake through shakes each morning (made with coconut water for extra potassium and magnesium while keeping sugar content down). Is it correct these two minerals are needed for the B12 shots to work?

With no chance of overdosing on B12, I'm keen to explore other ways to bump up my intake. Anyone had much success with B12 patches?

Finally, I might be prempting the doctor but from what I've read many people have struggled to obtain the required number of B12 shots. Is it safe ordering online? I'd be comfortable self-medicating.

Can anyone give me any advice, please?

Thanks for reading.

2

Hi there UKGUY I'm not a medically qualified person but have had P.A. for 45 years so I'd like to kmnow more about the treatment you are having.

Firstly you say you are "on a course of five B12 injections" Is that every other day?

Do you know what your doctor is going to prescribe after the five?

As to your symptoms - it is not uncommon for them to appear to get worse before they get better as the B12 starts to repair the damage done to your nervous system.  So please do not get overly worried about it yet as it is still very early days along your road to recovery.

Do you know what your Folate level is? Folate (or folic acid) is absolutely essential to process the B12 you are having injected.

Folate is derived from leafy green vegetables, sprouts, broccoli, beans etc so "upping" their intake is a good idea.  However it still may not be enough and it would pay you to ask your doctor to check it out.

As to your "missing intrinsic factor" the lack of IF means that it is impossible for you to obtain B12 from food via your stomach.

Vitamin B12 can only be sourced "naturally" from food such as Meat, fish, seafoods, eggs, poultry, dairy produce cheese and milk (oh, and Marmite).

As to your being "keen to explore other ways to bump up my intake" I would hang fire on that as you are on B12 injections for life via your doctor - why spend money on something you may not need.

With you present symptoms "dizziness, extreme tiredness (going to bed at 8.30pm) and brain fog." (and there may be more to follow as you start to "heal&quot the BNF guidelines say:

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

That is the regime your doctor should be prescribing for you.

Please come back if you have any more questions and be assured there is life after P.A. as I'm still "clivealive" at 75. 

3

Hi there,

Many thanks for your quick reply. Yes - I'm on injections every other day - or there abouts, depending on weekends.

I was pretty shocked when I was given the diagnosis, and didn't really know much about the condition. Like a lot of people I thought 'anaemia' concerned iron.

However, I do recall the doctor telling me that my folate / folic levels were within range.

That said, I guess the folate hasn't really had an awful lot to do if B12 hasn't been absorbed. Therefore, I may fall short when the injections kick in. I am therefore trying to increase my folate intake (through natural means), srinking a daily shake of brocolli, spinach, green beans, kale etc.

It's encouraging to hear symtoms may appear to get worse before they get better. It gave me a bit of a morale boost - yesterday was a nightmare. Room felt as if it was spinning. Forced myself to go for a mile walk.

Would dizziness be classified, in the strictest sense, as falling within the 'neurological" category? 

is it likely i'll make a full recovery when the B12 is back up to the required level? Any idea how long this may take?

Thanks again.

4

You ask "is it likely i'll make a full recovery when the B12 is back up to the required level? Any idea how long this may take?"

How long is a piece of string?

It will largely depend on how long you have been deficient and the extent of the damage done to your nervous system and or other parts of your body.

I get the impression that you are a "get up and go" sort of guy but the fact that you "Forced myself to go for a mile walk" at this stage somewhat concerned me and I think you must learn to conserve your energies for a while whilst your body heals. Don't become a couch potato but take it steady else you might find yourself "running out of steam" when you need to have energy to hand.

I was 30 when diagnosed with P.A. but as that was 13 years after I'd had two thirds of my stomach removed due to a perforated peptic ulcer I must have been near enough running on empty of B12 by then and the only advice the surgeon gave me as a 17 year old was "give up your electrical apprenticeship and get a sedentary job".

Of course, I ignored him and qualified as an electrician and after that my physical health began to go downhill until I was like a walking Zombie.  It was only due to the persitence of my then doctor and two "Schilling" tests (the precursor of todays tests) that I got the diagnosis and was "threatened" with having to eat a diet of raw liver three times a day every day - or have B12 injections for the rest of my life.  I chose the injections <em)

The surgeon in 1959 should have known that the stomach surgery would affect my absorption of B12 so I'm more than a bit peeved at having to struggle on for so long and why I am keen to help others new to the disease.

The word anaemia is a misnomer as far as P.A. is concerned and is a throwback phrase to when it was first discovered and many of us would like to see it called something else.  I prefer "The Silent Killer" if for nothing else but to wake up many GPs to the danger of misdiagnosing it for something else.

 

5

Honestly I think you just need to be patient. It is going to take a while for all your organs to recover. The injections are the best way to get the B12.

Make sure your folic acid and iron levels are ok.

Good luck and give yourself time and plenty of rest.

Deb

6

Hi there,

I too am recently diagnosed and didnt really feel any benefit until after the initial loading (5 injections), in fact I felt awful myself after the 1st and 2nd jab.  Hang in there until youve had your 5, thats when i started to feel an improvement.

Re the availability of the B12,  theyve moved the every 6 weeks to every 3 months but its at the discretion of your GP... after blood tests my GP is going to keep me on every 6 weeks, she actually said "if you need then more often then you will have them", so have a chat with your GP about that.... Ive seen that people do buy online but i dont think id go there.

Sorry I can help more - my main symptoms were extreme tiredness and breathlessness beyond belief,  im now 2 months on and am able to walk my dogs without nearly keeling over....its a massive start for me. Good luck.

7

Hi Angiemac19 - You are very fortunate to have an understanding doctor who is willing to vary the frequency of your injections.

I was started on cyanocobalamin B12 every for weeks back in 1972 and some years ago I noticed the return of neuropathy symptoms in the fourth week and asked my doctor to increase the frequency but this "One Size Fits All" guy adamantly refused to believe that the symptoms I was reporting was due to the P.A. - Why?  Because I was having the injections and my request was catagorically denied.

So then I joined the Pernicious Anaemia Society and learned all I could and eventually persuaded him to "allow" the occasional three weekly jab and as of last July I'm now permantly of a three week frequency.

There is life after P.A, and I'm still "clivealive" at the age of 75.