Hi,
I was recently diagnosed with PA and had my first 6 injections, my next one is due at the end of May, however over the past few days, I've noticed that I've started going dizzy, keep getting a buzzing sound in my ears, numbness in my big toe, I'm saying and doing things wrong.... could these be signs that my B12 injections aren't working or possibly need another one sooner rather than later??? I dont want to bother my GP if I'm just being stupid.
Hi Eric69
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
Do you know whether you had your Folate level tested?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 48 years.
I wish you well.
...so sounds more like it IS working , don't you think, Clive?
Note Eric69 : While these sound like typical symptoms to us and a common reaction for them to worsen early on, you might find that your GP's not so familiar with all of them, and may want to attribute some to other conditions/ deficiencies . Having said that, Clive is right - good idea to have folate level checked. Ferritin , vitamin D, thyroid can also be affected.
You mention Thyroid could also be affected.... I was really ill with an upper respiratory tract infection and severe sinusitis just before being diagnosed with PA, at the end of January.. my left thyroid in my neck, has been swollen and sore since then. I have been referred to the ENT Specialist and was due to go last week but I got a call from the hospital telling me not to come to the appointment and a clinician would be in touch soon.... any how could this be linked to PA??
I know that people with autoimmune conditions (like PA) can often have others (like psoriasis, vitiligo or thyroid conditions). Often close family members also share some of these problems.
I wouldn't know specifics, being not medically trained. Might be worth asking on the Thyroid HU site - some of the members obviously belong to both forums. Hope you hear from the clinician soon, Eric.
Meanwhile, hope you are keeping safe.
Thanks Cherylclaire.... I have a daughter, sister, 2 aunts and three cousins all type 1 diabetics... (all on my mother's side) my mum, aunt and daughter all have thyroid problems too!!!
As for keeping safe, I'm working from home, not left the house in a fortnight.. same goes to you too.
Hi,
If you're in UK and you have any neurological symptoms then my understanding is that you should have been given more than 6 loading jabs.
See UK B12 documents below.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
Neurological Symptoms
Numbness, dizziness, tinnitus (noises in the ear) would all usually be considered as neurological symptoms.
Other neuro symptoms include...
tingling
pins and needles
electic shock sensations
insect crawling sensations
burning sensations
periodic limb movements
restless legs syndrome
migraine
vertigo
memory problems
word finding problems
brain fog
clumsiness
bumping into things
dropping things
proprioception ( awareness of body in space) problems
strange behaviour eg car keys in the fridge
There are many other neuro symptoms that can be associated with B12 deficiency.
See symptoms lists below.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Symptoms of Peripheral Neuropathy
nhs.uk/conditions/periphera...
Referrals
If neuro symptoms are present, has GP referred you to
1) a neurologist
2) a haematologist (See NICE CKS link up page)
If GP won't refer you to a haematologist or neurologist perhaps you could persuade them to write to local neurologist/haematologist for advice.
There will very likely be a long wait during pandemic for most referrals
Vital to get adequate treatment or there is a risk of permanent neurological damage including spinal problems.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neurological symptoms.
Link has letter templates that people can base own letters to GP on.
Useful B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
PAS
Have you considered joining PAS (Pernicious Anaemia Society)?
PAS members can ring the PAS helpline.
There may be disruption to helpline during pandemic.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Next injection
You may find that it is difficult to get your next injection due to impact of pandemic.
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog post about stopped injections
b12deficiency.info/blog/202...
Many on forum source their own supplies and self inject. My personal feeling is that this is a last resort but many are being forced by current circumstances to consider this.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods.
I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
I am not medically trained.
B12 injections 
B12 Injections for PA
B12 injections
