Hello, I was wondering if someone could please explain why it’s not helpful to measure B12 levels after having regular B12 injections for pernicious anaemia? My doctor keeps measuring mine, even though I have pernicious anemia and am having regular B12 injections at the surgery. My B12 results are unsurprisingly in the normal range when they test me after having had an injection. I was hoping to be able to ask for a 2 monthly injection cycle but would like to know the reasons why the standard test isn’t very helpful so that I can try to explain it to the GP. Any help would be very much appreciated! Thank you.
Measuring B12 levels after PA diagnosis - Pernicious Anaemi...
Measuring B12 levels after PA diagnosis
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JadeRR
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I don't think anyone really knows why exactly symptoms remain even with high levels. I'm sure we all have theories but I haven't seen any definitive scientific explanations..
Anyway it's accepted that levels should not be tested after starting injections. Are you in the UK? Best i can suggest is to show them the guidelines, which state no testing & injections every 2 or 3 months, and a symptoms log which shows how symptoms evolve after each injection. Sleepybunny will hopefully be along to give you the BCSH/NICE links.
NICE guidelines suggest every other day injections if you have neurological symptoms. Absolute waste of time having 2 or 3 month injections as b12 only stays active for around 24 hours, although your blood will show high levels. This is why Daily or every other day is needed for healing. An injection every two months is the same as giving someone one meal every two months. Your doctor is a moron and has about as much understanding about b12 d and PA as a used tea bag. What people need to understand is that doctors are taught incorrectly and taught completely wrong theories, which they see as truth. Once you have an injection your blood will show high levels for four months but this does not mean you are absorbing the b12.
Thanks for that. I hadn't realised it was active for so little time. Just a quick read seems to suggest that we may lose quite a % within 8 hours and it may remain active for 48. Time for some more....Cheers
Ha ha it made me laugh reading that 🤣 also very interesting re the 24hr active period
Some info on B12 Institute site:
"2. Measuring vitamin B12 values during or after treatment, with the aim to measure the efficacy of the treatment, is of no use."
b12-institute.nl/en/diagnos...
It sounds like they are trying to make sure your B12 levels stay "in normal range", and guide treatment based on that, which is not the correct way to treat B12 deficiency (but this idea of keeping the blood level in a normal range is unfortunately somewhat common). My B12 is too high to be measured (as is the case for many others here, who have injected regularly in some cases for decades) and it doesn't do me any harm, indeed, those levels may be required to treat symptoms. Unfortunately as Jade mentioned, it is not really understood why levels of B12 need to be this high to control symptoms.
Maybe it’s because supplements raise levels very high . And it can take 4 months for it to fall to your baseline once supplements are stopped. Once I started treatment my serum b12 went from 220 to 1250+Over three months
My active b12 went from 58 to over 128 and that was in a month. At the same time my folate dropped from 33.5 to 25.
Hopefully someone will know more ?
Hi,
It's helpful to know which country you are in as forum members can then post the most relevant info. Patterns of treatment and type of B12 used can vary from country to country.
Testing B12 during treatment
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
PAS article "Testing B12 during Treatment"
(Some info in article above may be specific to UK)
pernicious-anaemia-society....
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring and an online contact form.
Membership of PAS is separate to membership of this forum.
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort
(Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands
(Dutch website with English articles)
Has useful lists of symptoms and causes.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
PA and B12 deficiency from other causes is not always as well understood by health professionals as it should be.
B12 article from Mayo Clinic in US.
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.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
This is a more recent thread where I left a detailed reply. Some info is specific to UK.
healthunlocked.com/pasoc/po...
I am not medically trained.
Wow thank you so much! This is amazing. I’m in the U.K.
Two pieces of advice I would give you,
1) Always get copies of all blood test results.
If GP surgery says everything is normal, check for yourself.
I learnt from bitter experience that sometimes GP surgeries say everything is normal when it isn't.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
2) Get hold of the local B12 deficiency guidelines for your ICB (Integrated Care Board) in England or Health Board in Wales, Scotland, NI and compare them with BNF, BSH, NICE CKS links below.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (40 pages).
CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) on July 1st 2022.
It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced so if you can't find ICBs B12 deficiency guidelines, try looking for previous CCG guidelines.
Some ICBs may use the change from CCGs to ICBs as a chance to review local guidelines.
Check your local guidelines every few months as they sometimes get updated unexpectedly.
List of ICBs England
nhs.uk/nhs-services/find-yo...
Health Boards Wales
wales.nhs.uk/ourservices/di...
Health Boards Scotland
NI
To find local B12 deficiency guidelines
1) Try a search of forum posts using terms "local guidelines"
2) Search online for "name of ICB/CCG/Health Board B12 deficiency guidelines"
3) Submit a FOI (Freedom of Information) request to ICB/Health Board asking for a link to or copy of local B12 deficiency guidelines. Put FOI (Freedom of Information) in search box on ICB/Health Board website which should take you to a page explaining FOI.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates covering a variety of situations linked to B12 deficiency.
NHS Complaints
patients-association.org.uk...
Care Opinion website
Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.
A few go to Press/other media if unhappy with treatment.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
b12deficiency.info/gloucest...
in reply to Sleepybunny
Sleepybunny...... thankyou !One day the future might look brighter for all !
🤞
"If someone could please explain why it’s not helpful to measure B12 levels after having regular B12 injections for pernicious anaemia?"
PAS article "Testing B12 during treatment"
pernicious-anaemia-society....
There are some useful quotes in the article.
Testing B12 during treatment
(from Dutch B12 website)
stichtingb12tekort.nl/engli...
"I was hoping to be able to ask for a 2 monthly injection cycle"
If you have neurological symptoms, you could point out to GP that the BNF hydroxocobalamin pattern for those with "neurological impairment" is
a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months
There is no set time limit as to how long every other day loading injections could continue for if neuro symptoms present. Could be weeks or even months of them.
How many loading injections did you have at the start of your treatment and did you have neuro symptoms prior to starting treatment, still have neuro symptoms or have started to develop neuro symptoms?
BSH Cobalamin guidelines suggests possibility of review after 3 weeks of every other day injections for those with neuro symptoms but my understanding is that if symptoms are still improving after 3 weeks of every other day injections then the every other day injections should continue.
GP can find this info in online BNF or in their BNF book Chapter 9 section 1.2
I suggest having a copy of BNF info with you if treatment is going to be discussed in an appointment.
bnf.nice.org.uk/drugs/hydro...
BNF hydroxocobalamin also indicates that maintenance injections for those without neuro symptoms can be every 2 - 3 months.
My personal view is that in UK, loading injections for B12 deficiency do not continue for long enough especially when neuro symptoms are present.
I had to resort to treating myself as NHS refused to treat me and I did not see any improvements in my many neuro symptoms until I had had weeks even months of loading injections. I had been symptomatic for about 15 years prior to starting to treat myself and count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and permanent dementia. I had both dementia symptoms and spinal symptoms prior to starting to treat myself.
Thank you so much for your detailed replies Sleepybunny, I will read through everything. I first had neurological symptoms about 9 years ago, mainly affecting my bladder nerves, pins and needles, problems with my coordination, as well as debilitating fatigue. I was sent to hospital because I became unable to pee and went into retention which was a medical emergency. They had no idea what was happening so checked all sorts of things. The only things that came up was a kidney infection (caused by the retention), very low B12, low iron, and signs of anaemia (overly large red blood cells, low blood count). My B12 was low enough that I was given the loading dose of 6 injections and I was given an iron infusion. This was given over 3 days and that was it. I was then sent to probably every nerve specialist in London and was given self catheters. There was a huge improvement in my tiredness after the B12 injections, it felt almost magical in terms of the difference it made - I went from being bed ridden to being able to walk around on my own. And I noticed that my bladder nerves began improving rapidly. While I waited to see a the next nerve specialist (NHS), the GP surgery did an intrinsic factor test which was negative so they left it. Nobody had really spoken to me about PA, other than to say that I didn’t have it. The focus was on some rare nerve conditions but every scan for those was negative and they couldn’t understand why the nerves had improved on their own. I was feeling fatigued again and my nerves were getting worse once more about a year later when I saw the final nerve specialist who mentioned that my B12 was a bit low again. She said it was unlikely but possible that it could be related to that and discharged me back to the GP. It was only at this point that I started taking charge and saw a private GP who suggested having B12 injections every 2 months and referred me to a gastroenterologist who diagnosed me with PA. The NHS GP then agreed to give me every 3 months and that’s what I’ve had ever since. It’s interesting to hear that injections were supposed to have been every other day for nerve issues and I wonder what might have happened recovery-wise had that been done. My bladder nerves have never been 100% since but they are much improved overall. I do have injections at home now but I often wait until I feel tired to do it which it sounds like isn’t the right idea. I was hoping to increase the ones at the GP to a 2 monthly course in addition to the at home injections, as I’d like to have it recognised that the neurological symptoms were linked to my PA but this has been much more complicated than I thought it would be and there is a great deal of misunderstanding from doctors.
"the GP surgery did an intrinsic factor test which was negative so they left it"
Are your GPs aware that it is possible to have Antibody Negative PA?
See UK diagnostic flowchart below.
stichtingb12tekort.nl/engli...
As you describe neuro symptoms, it seems you didn't have the recommended level of loading injections for those with "neurological impairment" when treatment started.
You could ask (in a letter to GP/practice manager) for loading injections to be restarted, pointing out (politely) that you did not get treatment pattern recommended in BNF for those with B12 deficiency with "neurological impairment". I suggest relevant quotes from BNF hydroxocobalamin info, BNF, BSH Cobalamin guidelines.
You may want to point out to GPs and practice manager that inadequate treatment of B12 deficiency increases the risk of permanent neuro damage including damage to the spinal cord.
May be worth discussing SACD in letter/conversations with GPs. SACD stands for sub acute combined degeneration of the spinal cord.
I am not saying you have SACD, I am not medically trained but I am saying that your GPs should be aware that SACD is a potential consequence of B12 deficiency.
Mentioning it may make your GPs sit up and listen to you.
See Point 1 in letter writing link below.
It's about being under treated for B12 deficiency with neuro symptoms present and there is a letter template to help people write their own letter.
b12deficiency.info/writing-...
Neurological Consequences of PA
pernicious-anaemia-society....
PAS article about SACD
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog about PA, mentions spinal cord damage.
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
More about neuro symptoms
Does your GP have a list of all your symptoms, especially every neuro symptom and definitely any that affect your spinal area?
See Symptoms lists in one of my other replies.
Were you ever referred to a neurologist?
NICE CKS - when to refer patient with B12 deficiency to neurologist/haematologist/gastro-enterologist
cks.nice.org.uk/topics/anae...
NICE guidelines - Suspected neurological conditions
Challenging GPs can affect GP/patient relationship so be prepared for this and have a back up plan.
Changing GPs is easy but no guarantee of better treatment.
nhs.uk/nhs-services/gps/how...
Going private is also no guarantee of better treatment.
"overly large red blood cells"
The medical term for this is macrocytosis.
Blood tests linked to B12 deficiency
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...
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
b12awareness.org/cobalamin-... (from B12 Awareness, US website)
NHS link about Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
My mother had been diagnosed for a number of years and was getting regular B12 injections.
Eventually her GP told her that the 'bood levels' were fine and she did not need further B12 injectiions.
Both my sister and myself thought that was 'good'.
The decision by GP caused my mother to develop stomach cancer which caused her demise and did not get adequate pain relief towards the end of her life. Myself and sister had to plead for more pain relief.
I also have P.A. but get monthly injections now.
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