I'm 23 years old and been told I have low b12 and folic acid tablets Daily,
I've had the several injections you have over 2 weeks and took my folic acid everyday but it's been 3 weeks since I had last injection and not due another one until end of April
And I'm really tired again, really really exhausted I keep getting pain in my wrists and my hands shake like I have bad nerves is this to do with the b12?
What should I do can anyone help?
Hi and welcome.
It can take a while to settle down, people often say they feel worse before any real improvement. Its possible that you havent been given enough if you had the shakes and pain before loading. I can only suggest you go back to your gp and discuss it, (hoping that they know how to treat b12d correctly).
Can you compile a list of symptoms from before treatment and then after treatment and again now that they are returning with no more treatment?
Return to the GP with them and try to have a discussion about why this is happening? Take someone who knows you well as an advocate - they can say you were not like this before etc..
It is important that you do not sustain permanent damage because you have not been treated for long enough. Ask for a blood test to check if you have antibodies to Intrinsic Factor and Gastric Parietal Cell? (This is not always accurate but is a start) Ask for whatever other test the Dr thinks is relevant to find why you are having absorption issues. You might also require an endoscopy to check the state of the ileum. This was all done for me and it was how I achieved a proper diagnosis of PA.
You need to work on that Dr of yours... don't take no for an answer. BUT, take someone with you because untreated the brain can really not work too well. Good luck.
Are you on a Gluten Free diet? I am so much better since I really started to be serious about gluten.
Hello there, I too have B12 deficiency in the form of PA. My symptoms didn't disappear for ages either and came back early. It was get better with time, They stopped my injection for a whole year once but I am back to every 3 months now thank goodness. A support group would be great for this. I can recommend the Pernicious Anemia Society. They are really good and Martyn Hooper has published a couple of books which are available on amazon. Excellent books.
Keep me posted on your progress and we can support each other. My next injection is ue in March. So tired yet can't sleep. Chat again soon I hope,
Sandra from Paisley
there is significant personal variation in how long people retain B12 in their blood but this has not been reflected at all in guidance. Very few people actually cope with the 3 month regime.
There are also other things that can go 'wrong' - my symptoms return within 24 hours.
Hi know how you feel injection set for this Thursday first injection after 2week intake last few days feeling tired hair limp may mention this to nurse but think a little soon to work out required intake
Hi,
I've assumed you're in the UK.
"my hands shake like I have bad nerves "
In the UK, the treatment for people with B12 deficiency and neuro symptoms is more intensive than you are receiving., it includes extended loading doses and maintenance doses at shorter intervals.
Do you have any neurological symptoms? See symptoms lists below.
b12deficiency.info/signs-an...
pernicious-anaemia-society....
Symptoms checklist in here. I ticked all my symptoms and gave a copy to my GP.
Info on B12 deficiency treatment can be found in
1)BNF (British National Formulary) Chapter 9 section 1.2
2)BCSH Cobalamin and Folate Guidelines
This link contains similar info to that in the BNF. See Management section.
patient.info/doctor/pernici...
I copied the whole BCSH Cobalamin Guidelines and gave a copy to my GP.
Has the GP explained why they think you are b12 deficient? What they think is the cause could affect the treatment you are given.
b12deficiency.info/what-are...
Have you had an IFA test? this can help to diagnose PA but is not always reliable. people with a negative result may still have PA.
Have you got results for ferritin and a full blood count?
b12deficiency.info/b12-test...
The PAS are helpful to talk to.
pernicious-anaemia-society....
01656 769 717
Office open between 8am and 2pm every day except Sundays.
Useful books
Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
