Newly Diagnosed PA
Posted , 4 users are following.
Good evening,
I have recently been diagnosed with PA after 15 years of being advised that my symptoms were due to my underactive thyroid!
I had my loading dose 1 week ago, however I still have numbness in my feet and the fingers on my right hand, can anyone please advise if they have had these symptoms and if I should expect them to subside it if I should revisit my GP.
I am a healthy and fit 30 year old so my b12 deficiency has come as a surprise as the doctored have advised me that I am extremely young to have PA and therefore they expect I was born with PA.
My symptoms have subsided somewhat, i.e painful bones and lack of concentration, however I am rather concerned about my numb feet as I know this is neurological. I would appreciate it if anyone can give me any sort of advice on any steps I can take to try regain proper feeling in my feet or any advice in general that will a able me to regain my alertness and stamina.
Thank you
Leo
2 likes, 3 replies
marion29181 Leo_mac
Posted
With neurological symptoms, you should be continuing to have B12 injections every other day until no further improvement. Sadly a lot of doctors fail to follow this guideline. Have you had a look at the Pernicious Anaemia Society website, there is some useful information on there, and they can help offer advice to GP's.
Low B12 will often occur alongside underactive thyroid. I had my low B12 diagnosed after fifteen years of underactive thyroid treatment. The sad thing is that sometimes it has gone on for a long time, and some nerve damage may not be reversible. You will need full blood testing for ferritin, folate, and VitD, these can also be at low levels, and are needed for you to be able to use the B12 you are being given.
Be aware that exercise and stress deplete B12, so until you feel your levels are raised sufficiently, don't overdo things.
It's been over two years since my diagnosis, some things are much better. Mental clarity, numbness, balance, tinnitus, are all improved, mostly since I persuaded my GP to trial me on six weekly instead of three monthly injections.
If your GP isn't giving you the injections every other day, please go back and ask for them, as your symptoms are neurological.
Take a good B complex multivitamin and ask for the extra blood testing.
A soak in an Epsom salt bath will help you absorb magnesium, and ease some of the aches and pains. Before bed is best.
Hope you get the help you need Leo.
Best wishes Marion
clivealive Leo_mac
Posted
Hi Leo, I'm not a medically trained person but someone who has had P.A. for the last 45 years having been diagnosed at the age of 30 so you are certainly not "extremely young" as even babies, as you said, can be born with it or even inherit it.
In my case diagnosis was 13 years after stomach surgery for a perforated peptic ulcer I'd had at the age of 17.
Whatever sort of diet are you on if you have the absorption problems associated with P.A. then you will need the injections for life.
It is not uncommon for symptoms to appear to get worse before they get better as the B12 starts to heal the damage done to your nervous system, so please be prepared as the injections are not an overnight miracle cure, it will take time.
It's a good idea to keep a daily record of your symptoms so that when they do start to improve you can see the progress.
Do you know what your Folate level is as this is essential to process the B12 once the injections start.
Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-
By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months
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.
I wish you well for the future
kelly09968 Leo_mac
Posted
Hi,
I see that Clivealive has already got back to you
and what Marion has written is very right and correct! As someone who is in my 30s and I was diagnosed with my B12 issues about a year ago, I thought I would add my thoughts and feelings for what its worth!
Like you I was effectivley mis-diagnosed, but with depression, and I like you I have a couple of hormone issues, and my head is still spining with how on earth this deficiency happened, but it does explain a hell of a lot to why my life was a bit of a mess! So the trick for you maybe is to tease out what symptoms are hormonal and what is due to the B12 (poss folate as well), so you can monitor, whats happening with each condition, but as both Marion and Clive say you should be reciving more loading doses, then things should improve.
You are are right to take a step by step approach because as you may of read on other forums, this disease has a habit of throwing curve balls at you! and your body needs time to adjust, once you get your regime of B12 sorted you will feel a 100 times better!
All the best
Kelly