I have been on vitamin b12 injections since 1994 when I was diagnosed with pernious anemia I was only 37. Since 2005 I started to suffer from Neuropathy. I can now only walk short distances my feet are numb righ up to my knees my balance is affected it has really changed my life style. I live in Scotland and get my injections every 3 months.
Any advise or help out there?
Everyone here will say you need more injections. The NICE guidelines say the same. Sorry to hear more symptoms have come.
Hope you get the treatment you need soon
Go see a neurologist. There are a lot more causes of PN than just B12 deficiency.
Hello, Kerri05
As fbirder said, it could be something other than B12 deficiency, but it also could be that you've never gotten the B12 your body needed. This looks very similiar to what happened with my father.
He was diagnosed with PA about the same time you were. He was given 1 shot of Cyanocobalamin (no "loading" dose) and told that he would require one shot per month for life.
He went on with life taking his shot-per-month until in about 2010, began experiencing numbness in the bottoms of his feet. visual disturbances, and balance problems .
His family physician referred him to a neurologist who could find nothing.
He had always been quite healthy other than the PA. No cardiac, blood sugar, cancer, blood pressure. In fact, he rarely ever had a need to take any medication.
The visual disturbances went away without doing anything, but the problem with his feet would continue to get worse.
For him, it didn't have a happy ending.
The doctor that originally diagnosed his PA admitted that he "mismanaged" his care. He regretted not giving him a "loading" dose and following up with his neurological symptoms more judiciously. The last year of my father's life, he prescribed injections every other DAY. By that time, his brain was too far gone. It had atrophied to the point that his body ultimately succumbed to PA.
If it is a B12 issue for you, Kerri05, then i believe you can successfully deal with it. We have to become the best self-advocate we can be for our health.
BTW, how is the medical profession supposed to treat B12 deficient neurological problems? Injections once a month? Bimonthly? Once every 3 months. Hardly.
I'm sorry to hear about the decline and demise of your father - it still hurts, doesn't it?
It's an excellent reply however and I believe that the dose should be tailored to the needs of the patient - to heal any damage already sustained and prevent any more.
Hi, deniseinmilden,
Yes, it still hurts, and I still grieve. Thanks for asking.
You had an excellent answer in that everyone should be approached as a unique individual and not as everyone else, with treatment "tailored" to their specific needs.
As an aside, I hope my post didn't sound scary as that wasn't my intent.
Part of my father's problem was that he was a very stubborn man. About the time he was becoming symptomatic is when I started researching PA/treatment. I told him that he didn't get a loading dose and that he shouldn't experience the "lows" each month before his next shot. But he wouldn't consider that he was being under-dosed and would only stick with his monthly injection.
I believe the damage was insidious and accumulative.
So if you're listening, Kerri05, you can avoid further discomfort. Find out what's going on with your body. If it is indeed B12 deficiency after all these years, you can still do something to change the trajectory that you're on.
Yes you are right I need to take ownership and challenge what I am being told by the so called professionals.
Bless your heart. You'll have a happy ending!
Thank you!
Not at all scary - because I understand where you're coming from. I lost my Dad too, at the beginning of the year, because of under treatment of B12, hence my understanding.
I have to use 1.5mg ampoules every day to improve my neurological damage.
That is so sad, deniseinmilden. My father passed away late October of last year. We do share a familiar pain.
Continue to take good care of yourself. My Ts and Ps for you.
Thank you - and you! x
I was told that the British guidelines for PA and neuropathy were B12 injections every other day until no further improvement. I'll also mention that I was on methyl B12 injections every other day for 4 years when I began to notice more numbing on one foot, which alarmed me, so I changed to hydroxocobalamin injections every other day and within a few months the numbness is almost completely gone. Wow! So the lesson learned is it has to be the right B12 for each person. Good luck!!
Thanks for that I will speak to my GP and see if I can get my injections more regularly.
I know this seems weird, but, have you had your B6 levels checked? The reason is that my eldest daughter went to see a neurologist when she was having issues with her hands. It was thought that she might have carpal tunnel. Blood work was done and her B6 was way above upper limit of normal range. This explained why she was having neurological issues. She was told to stop taking supplements, which she didn't take anyway. Since the doctor couldn't explain why her B6 levels were so high, she researched and found that it could be a defect in the enzyme needed to break B6 down into usable form (P5P). Guess what? It is found mostly in people with Scottish ancestry. I thought this weird because my great-grandfather was Scottish. But, I guess we were lucky enough to inherit this genetic defect from him. The only thing to treat this is to avoid eating too many foods high in B6 and excercise. Taking B complex is important when taking B12, so make sure it doesn't have pyridoxine form, but the active form of P5P
That’s really interesting. I’m not sure if I’ve had my B6 levels checked. Do you happen to know which gene it was? Might it have been PDXK. I am heterozygous for one mutation in that gene, although the fact that one-third of the population has the same mutation makes me suspect that it's not very nasty.
This is getting too scientific for me..........Is it important to take B complex if you’re injecting B12 because I’ve never taken them and it’s my 3rd year SI B12 once every fortnight.
No.
No matter how much B12 you inject you should not require more of anything else than any normal person - assuming that what makes you B12 deficient doesn’t affect absorption of other nutrients.
If you have PA then that will cause low stomach acidity, which can lower absorption of non-haem iron. If you have tested with low iron then eat lots of animal flesh to get haem iron or take a low-dose chelated supplement like Is iron fumarate or bisglycinate.
Folate in food isn’t easily absorbed as it is bound to glutamic acid molecules which need to be cleaved by pancreatic enzymes. Some people may be inefficient at this process and should take folic acid. Note that it is recommended that all women of childbearing potential take 400 mcg of folic acid daily.
Government recommendation is for everybody to take Vitamin D supplements during autumn and winter.
Apart from those - see your doctor or pharmacist for advice,
My Serum Ferritin is 94ug/L and the range is 25.00 - 380.00ug/L.
Is my Ferritin low considering I eat plenty of meat products etc ?
I also have Serum triglycerides level of 4 mmol/L and the range is <2.30mmol/L which I don’t know is what.
This is from blood test results on 22 Oct 2018.
Thank you - very interesting!
I have neuropathy and balance issues and do injections daily. It may be time to start self injections if you’re able to.
Hi Kerri05
"I live in Scotland and get my injections every 3 months."
Recommended UK B12 treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a B12 jab every 2 or 3 months.
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.
Your GP may not realise that the UK B12 treatment guidance has changed recently. It used to be a jab every 3 months for those without neuro symptoms but has been changed to every 2 or 3 months for those without neuro symptoms.
Martyn Hooper's blog post about change in treatment guidance.
pernicious-anaemia-society....
When you were first diagnosed, did you have any loading doses....a series of B12 jabs close together to get B12 levels higher quickly? If you did not have loading doses at start of treatment, may be worth asking if you can have them now. If yes to loading doses, how many did you have?
If you had neuro symptoms when first diagnosed with PA then my understanding is that you should have had a B12 jab every other day until improvement stopped.
You mention neuropathy, numbness and balance issues which would usually be considered as neurological symptoms. I am struggling to understand why you are not on the recommended treatment for B12 deficiency with neuro symptoms. More info on UK b12 treatment in BNF, NICE CKS and BSH links further down this post, some of the links will not show recent change in treatment guidance.
Pernicious Anaemia Society
Please think about joining and talking to PAS soon. They may be able to intervene directly and at very least can point you to useful info to pass on to GP.
PAS
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Support groups can be a useful source of info about helpful GPs etc. There is a PAS support group in South Scotland.
Untreated or under treated B12 deficiency can lead to further deterioration including problems with spinal cord. Is your GP aware of the risk of SACD?
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
B12 Deficiency Info website
Some UK forum members have had help from B12d.org which has support meetings near Durham.
As you're in UK, I'd strongly recommend you read all these UK B12 documents/articles...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
Link above shows recent change in UK treatment guidance.
NICE CKS
cks.nice.org.uk/anaemia-b12...
UK B12 Blogs
Martyn Hooper's blog about PA
Stories on here about how PAS supports its members.
B12 Deficiency Info blog
Unhappy with treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment for B12 deficiency with neuro symptoms. Lots of useful B12 info in link.
NHS Complaints Scotland
citizensadvice.org.uk/scotl...
HDA patient care trust
UK charity that uses a network of UK specialists and offers free second opinions on medical diagnoses and medical treatment. They have a helpline number.
HDA patient care trust 0207 935 8366
Coeliac Disease
Sadly having one auto-immune condition eg PA can increase the chance of developing another.
Have you ever been tested for Coeliac disease? Coeliac disease can lead to neuro symptoms.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Thyroid Disease?
I'd suggest putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH, which won't give a full picture of thyroid function. There are quite a few on PAS forum who have both B12 deficiency and thyroid disease.
Thyroid UK website
Have you had any surgery/other exposure to nitrous oxide?
Nitrous Oxide
gov.uk/drug-safety-update/n...
Diabetes
Have you ever been checked for diabetes? I have read that diabetes can lead to neuropathy.
Vitamin D
Have you been checked for Vitamin D deficiency? I've read that this is quite prevalent in Scotland.
nhs.uk/conditions/vitamins-...
patient.info/health/osteopo...
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Best piece of advice I ever got was to always get copies of all my blood test results.
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
B12 books I found useful
"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 is up to date with UK b12 guidelines.
"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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Help for GPs
1) GPs and other health professionals can join PAS for free. There is a section on PAS website for them.
pernicious-anaemia-society....
2) PAS members can access a leaflet " An Update for Medical Professionals: Diagnosis and Treatment " on PAS website. Some on forum have given this to GPs.
pernicious-anaemia-society.... See Page 1 of articles.
3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
I am not medically trained.
I think your best bet is to join and talk to PAS. Best to phone them.
pernicious-anaemia-society....
I agree with fbirder that it is a good idea to see a neurologist. I'd caution you based on personal experience that neurologists' understanding of B12 deficiency is not always as good as it could be so I'd suggest doing some B12 homework before any specialist appointment.
I'd also add that NICE CKS link mentions that GPs should seek advice from a haematologist for people with B12 deficiency with neuro symptoms. Has your GP ever contacted a haematologist?
You have been really helpful everything you have said makes sense. No my GP has never seeked advise from a haematologist and I don't think they probably know what treatment I am entitled to. I think I will give the PA society a call. I just wish I had this information before hopefully it's not to late.
It costs about £20 for a year's basic membership of PAS.
pernicious-anaemia-society....
You will need to be a PAS member to get support from them.
Blog posts that show how PAS can support its members.
martynhooper.com/2017/06/24...
martynhooper.com/2018/05/08...
I found it helpful to read the books I mentioned.
If finance is an issue then there's a good chance that your local library service will have copies .
I hope you get the help you need.
I used to ask for referrals to specialists in short, polite letter to GP along with evidence eg symptoms, blood test results, family history, extracts from Uk B12 documents etc . A GP does not have to agree to a referral request.
Do you have anyone supportive you can take with you to appointments? Even better if they know about B12 deficiency. Some GPs may find it difficult to cope with assertive patients and may be kinder if a witness is present.
Every 3 months seems not often enough, you may be needing more frequent injections. I’m sure someone here will give you correct guidelines for neuro symptoms.
Hope you’re able to find some good help here.
Wishing you best of health and hope you find some answers here to improve your condition and hope your symptoms improve.
Thanks me to!!
A lady who works for my endocrinologist has the same problem and she gets one every two weeks.
Diabetes and other diseases can make things worse if you are assuming your pa situation is to blame and you allow another disease to creep in.
Neuropathy & Vitamin B12/complex help
B12 and neuropathy 
Low B12 and idiopathic poly neuropathy
CA you get cured of PA?
