I was diagnosed with chronic PA in January 2018. Had to go on disability because I have short term memory loss. I was taking a nasal spray which really helped but unfortunately My doctor moved an hour away and my new doctor was in total denial about PA and he stopped seeing patients about a year ago so I've been treating myself with OTC liquids and B12 meds which isn't helping. I have neuropathy in my legs and arms and my memory is terrible. I know I need injections but I'm skeptical about finding a doctor who understands PA. I honestly feel like I'm slowly dying. I'm 62 now but still too young for a geriatric doctor. I'm scared and no one understands what B12 deficiency does to a person. I've lost a lot of hair and my nails are turning white. Any advice is welcome. I'm willing to try injections.. I just don't know where to start. I'm very tired of being tired. Thank you for listening.
Chronic PA: I was diagnosed with... - Pernicious Anaemi...
Chronic PA
Many of us have experienced similar issues.
If you have a diagnosis of PA you should be receiving injections for life which is stated in the guide lines. Perhaps you should suggest that your Gp refer's to them.
onlinelibrary.wiley.com/doi...
You could also try sending a letter to the surgery manager.
pernicious-anaemia-society....
The links were put on here by one of the administrators.
You could consider self injections as I did. 😘
You need to be in charge of your health . As a pernicious Anaemia patient you need to have B12 injections often enough to keep all symptoms at bay , FOR LIFE! It’s no use relying on the medical profession for help with P.A.
If you don’t get the correct treatment soon enough , you can be left with irreversible symptoms or symptom( happened to me )
I’m sending you some information to your private messaging site .
You will probably get advice on how to try to get your GP to give you appropriate treatment ( B12 injections)
You need injections asap .
Best wishes .
If a nasal spray worked you can absorb B12 orally. B12 nasal sprays aren’t absorbed by nasal tissue. Apparently to pass across a biological membrane unassisted a molecule needs to be relatively small and lipophilic. The B12 molecule is both large and hydrophilic. The B12 nasel spray is dripping down the back of your nose into your stomach.
Pills didn’t work for me either. Oral B12 can only be absorbed passively and only about 1% of the B12 supplement will make it into the blood. So you need to take lots. The body can only efficiently absorb a small amount of B12 within a given period of time. In order to help B12 absorption it is recommended that you divide the dose over the course of the day. So I dilute B12 sublingual liquid in water and drink it throughout the day.
I buy 5000mcg liquid and take about 15,000mcg daily. Maybe you could try this and if it doesn’t work then go to injections,
Also want to add that if nasal spray helps you then perhaps you don’t have PA but B12 deficiency? If you had PA then you wouldn’t absorb the B12 with spray or orally only by injection? I recommend you ask for an intrinsic factor test to confirm the PA diagnosis.
Just a thought - are you taking any other medication? I ask because some can severely effect memory. I take amitriptyline and it affects my memory badly.
Hi,
Welcome to the forum.
Do you mind me asking which country you are in?
I'm asking because different countries have different treatment patterns for B12 deficiency.
Knowing which country you are in may help forum members to post relevant information.
If you're in UK, there's a lot of info I can pass on to you.
Hi again,
Some B12 links that might be of interest.
There's a lot of information here so worth taking a week or so to sift through it and please be aware that some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society.org
There is a helpline number that PAS members can ring.
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS support groups in UK
There is also a PAS support group in Chicago area, US.
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
B12 Info.com (formerly B12 Deficiency Info) website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands (English articles)
Has some useful articles eg "Diagnosis and Treatment Pitfalls".
This next link mentions support groups in Europe.
b12deficiency.info/very-use...
The B12 Society (charity based in Scotland)
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
Published a few years ago, some info might need updating.
"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
pernicious-anaemia-society....
UK B12 health document
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Misconceptions
Some health professionals have wrong ideas about B12 deficiency.
B12 article from Mayo Clinic in US
Aimed at researchers and health professionals. One of the best B12 articles I've read (in my personal opinion).
May have some details that could be upsetting.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
It's vital to get adequate treatment. Inadequate treatment may increase the risk of permanent neurological damage. In severe cases the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord.
pernicious-anaemia-society....
If you're in UK,....
I'd urge you when you have time and energy to find out what's in the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England and Health Board in Scotland/Wales.
If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to your ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some UK local b12 deficiency guidelines are not helpful. See blog post below.
b12deficiency.info/gloucest...
If you're not in UK, I suggest you try to find out if there are any regional or national B12 deficiency guidelines for your country.
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, hints on dealing with unhelpful GPs and more.
Some info is specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
Some UK forum members turn to self treatment if NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral b12 eg 1000mcg or above and some as a last resort turn to self injection.
Good luck and maybe update the forum at some point if you are able to.
I’m so sorry your experiencing such neglect from the medics .. for me personally I decided to take matters into my own hands and I inject myself every week. I still get symptoms ie tiredness joint pain etc but manageable .. I might try to up my dose and inject more .. my point is I decided to take control and do it myself when I realised I was dealing with very ignorant Dr’s and nurses ... now bearing in mind the “wellness” industry or beauty industry offer B12 injections with no prescription (because it’s really not needed) for about 45 quid ! I’m more than happy to obtain myself, inject myself and try to keep up to date with latest developments and people’s experiences on this forum .. but that’s my personal choice .. good luck !
Have you had a full blood test and iron panel? I ask because as well as B12 deficiency or PA you may have other issues going on especially with iron given the symptoms you mention.
If you are in the USA (I'm in CA) an NP is the way to go for B12 prescription injections especially since their training and role is the one that typically adminsters B12 in a hospital and office setting. Respond here if this is the case (you are in the USA) and happy to provide guidance.
Newly diagnose PA
Is PA reversible?
I must be going mad!
CA you get cured of PA?
