Hi feeling terrible can not function my memory is very bad
Asked the practice nurse if she has any information on what my levels are she said 400 she said this is a normal level I am 65 years old
She said if I feel so bad see the doctor and they might put me on 8 weekly injections instead of 12 but if my results are normal why???
Ask to have your Folate level checked when you see the doctor lilly60
'normal' range is set assuming people haven't had and are not on B12 shots - it doesn't really mean a lot if you have had B12 shots as these introduce new factors into the equation - one of which is the possibility that you react to the high levels of B12 in your serum by producing antibodies that stop the B12 getting from your blood to your cells where it is needed. This isn't a problem if you have an injection until your serum levels fall below the point where there is enough in your blood to beat the reaction. It is a bit like having built a dam but still needing water down stream - as long as the water levels behind the dam are high enough for water to trickle over the top things are okay but once they fall below that level no water gets trhough.
so, 400 (pmol/L or ng/L) may well be in normal range but it may no longer be in the range that is okay for you.
Try talking to your GP about moving from 12 weeks to 8 weeks - particularly if you have any neurological symptoms - tingling in hands and feet - though even that may not be frequent enough.
You could also suggest to your GP that they take a look at this part of the PAS website particularly geared towards medical professionals and helping them to understand how patients really respond to B12
pernicious-anaemia-society....
test results are about averages in particular circumstances but people aren't averages and if the circumstances are different then they are even more likely not to correspond with averages.
Hi Lilly60,
You mentioned on another thread that you've been having B12 injections for 7 years. I don't think a level of 400 is very high for someone who has had injections for years.
Have you been diagnosed with PA (Pernicious Anaemia)?
PAS (Pernicious Anaemia Society) can offer support and information to its members.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone
Risk factors for PA and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Details of UK B12 treatment can be found in
1) BNF British National Formulary Chapter 9 Section 1.2
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
2) BSH Cobalamin and Folate Guidelines, about a quarter through guidelines
b-s-h.org.uk/guidelines/gui...
Do you have any neurological symptoms eg tinnitus, tingling, pins and needles, memory issues, balance problems plus other neuro symptoms?
See lists of B12 Deficiency Symptoms below
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
In UK, people with B12 deficiency with neuro symptoms should have a loading jab every other day for as long as symptoms continue to get better then a jab every 2months.
Undertreated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.
PAS news item about neurological consequences of PA
pernicious-anaemia-society....
Link about writing letters to GPs about b12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about undertreatment of B12 deficiency with neuro symptoms.
I am not medically trained just someone who has struggled to get a diagnosis.
Thank you for your very informative reply
Never been told I have Pernicious Anaemia was just told I would need injections for life
I have a lot of neurological problems my forehead is numb also the sides of my face and shoulders
I get like electric shocks up my spine and have constantly got back ache
I have had back Xrays and have degenerative disks due to age/wear and tare
I see a Rheumatoid Specialist I was diagnosed with Osteoarthritis 6 years ago after a bout of Polymylagia
All autoimmune diseases
But my tiredness is getting worse my CRP bloods are stable around 18 which for me is good
But I can't do a simple chore without being exhausted
My memory is like a sieve I get really frustrated
I will look up all the sites and have a talk to my GP
Thank you once again xxx
Hi again,
Might be worth finding out if you have ever been diagnosed with PA by
1) Asking GP directly if you have PA diagnosis on record
2) Viewing or getting a set of your medical records and checking if a PA diagnosis is recorded.
Access to Medical Records (UK)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
In my opinion, it's easier to argue for increased B12 injections with proof of PA diagnosis.
"...lot of neurological problems my forehead is numb also the sides of my face and shoulders.....electric shocks up my spine .... constantly got back ache "
I'd urge you to contact PAS and ask for advice.
People who are symptomatic for B12 deficiency are at risk of developing spinal problems if their B12 deficiency is not treated correctly.
There is a PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members.Some people on forum have shown this to their GPs as an example of the consequences of being undertreated.
pernicious-anaemia-society.... see Symptoms section
PAS membership costs about £20 a year.
pernicious-anaemia-society....
PAS members can access details of PAS support groups.
There are several support groups in UK and they can be a useful source of support and info about helpful GPs etc.
pernicious-anaemia-society....
Not all PAS members have a confirmed diagnosis of PA partly because it can be so difficult to get a diagnosis.
You have mentioned other auto-immune diseases. Having an auto-immune disease increases the chances of developing another eg PA.
Martyn Hooper's blog about PA and B12 issues
There are stories on blog about how PAS has helped support people trying to get a diagnosis and adequate treatment.
martynhooper.com/2017/07/01...
There is also an interesting blog about B12 issues on the "B12 Deficiency Info" website.
Person who runs this website is supportive and sympathetic and can be contacted by e-mail. Details on website.
"I will look up all the sites and have a talk to my GP"
Some people find it helpful to write a letter expressing concerns about B12 treatment. See link about writing letters in post above.
My understanding is that letters to GPs are filed with medical records so are a more permanent record of issues raised. Things said during a consultation may get forgotten.
B12 books
These are books about B12 I found useful.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this book to my GPs.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
B12 deficiency is not as well-understood among doctors as it could be, in my opinion, so I'd suggest doing your homework on B12 in case GP has not done theirs....
Lots more B12 info in pinned posts on this forum. I found it helpful to read fbirder 's summary of B12 documents. Link to summary in third pinned post.
Wow mind blowing xxx
Will have a good read
Thank you for all your input
So very much appreciated
Xxxxx
Hi,
In view of your neuro symptoms , have you seen a neurologist?
Have you seen a haematologist?
The BNF links in my first post mention that people with B12 deficiency with neuro symptoms should see a neurologist.
Also wondered if you've ever had tests for Coeliac disease and Thyroid disease?
coeliac.org.uk/coeliac-dise...
thyroiduk.org/tuk/testing/t...
Sometimes doctors only test TSH which will not give a full picture of thyroid function.
There is a very active Thyroid UK forum on HU so may be worth putting any thyroid results on there.
Hi yes had tests on Coeliac and thyroid both fine
Saw a Hematology Specialist 6 years ago about something different but he noticed I needed B12 so that's how it started
The numbness throughout my body has always been put down to damage from Polymylagia but it's only reading through these sights I am having doubt
I feel so terrible I have to have some answers
I will research more tonight
Thank you once again xxx
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