Why B12 Levels still so low after treatement?
My blood test showed 57L for B-12.Aft... - Pernicious Anaemi...
My blood test showed 57L for B-12.After 8 weekly B-12 injections,and iron infusions, my new blood test showed 136L for B-12. Why still low?
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Lulu33029
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Because this disease is so unpredictable and no one's no exactly why.Take a look at the following survey which was done 2015 by dutch research team
stichtingb12tekort.nl/surve...
Thanks for the info.
Gambit62Administrator
what were the ranges. It looks like the test was active B12 rather than serum B12 and the range is very different. 136 would be a good result for active B12.
Thanks for your response. The test result was B12 from serum. I've been diagnosed with PA by a Hematology & Oncology Specialist. The value from my serum IF was 274.4 back in Nov. 2021. My ferritin at the time was 10 ng/ml. I began weekly iron infusions and weekly B12 injections in Nov. 2021.
some people remove B12 much faster than others - and some remove it much slower - this doesn't correlate to whether people feel okay or not and there isn't any clear explanation for the variation.You don't say how long after your last injection blood was drawn for your test.
Iron infusions won't affect B12 levels - just your iron levels.
Lulu, I am not sure why your B12 level is still low. I can only add my experience. I initially had Serum B12 of 70 pg/mL (our good range being 232 - 1234 pg/mL) and I did injections every other day for 1 week then weekly at 1 mg. after three months my serum B12 only improved to 186 pg/mL. At this time I was not aware or or diagnosed with PA just B12 deficiency. I was just continued on this once weekly injection and at 5 months I spent the night in the emergency room the entire right side of my body went completely numb. I thought I was having some kind of stroke but that is what led me to my PA diagnoses and the cause of nerve damage. That was 18 months ago and my injections were increased to 2 mg weekly which I still take. My serum B12 is now off the charts like over 2000 pg/mL so I no longer have that test done. My nerve damage has mostly resolved itself about 95% anyway with the increased dose and also I went through six rounds of Neural Therapy injections. So a serum B12 of 56 pretty much means your PA is advanced. Not trying to alarm you, well maybe I am trying to jolt you because this low B12 is serious. Perfectly treatable, but serious You need to get your B12 levels up. One note about serum B12 blood test is that test shows both active B12 (B12 your body can use) and inactive B12 (not useful) so first listen to your body and its symptoms. Hope this is helpful...the key now is to get your serum B12 levels up. There are other tests that I get now such as MMA and homocysteine as these can check better for how your body is utilizing/metabolizing the B12 in your system.
Thanks. This is most helpful. Back in Nov. 2021, my homocysteine was 32.3 which I understand is high. I will check with the doctor on a retest of this. From what I read, I really thought that my levels would go back to normal. Thanks for the 'jolt'. I just need validation that I am not crazy. 😜
You don’t say what your symptoms are Lulu but your B12 was very low when originally tested, if this was the usual serum B12 test…..
From my own and family experience, medics have very little expert knowledge of B12 deficiency and don’t appear to be up to date with latest research.
From the BMJ research paper (summary only but your GP should be able to access), you’ll see that it’s vital that any neurological symptoms, (eg extreme fatigue, tingling, tinnitus, dizziness, loss of balance, etc.) are treated every other day until no further improvement (UKNEQAS link on the PAS website below).
No medic but it would appear that weekly injections are nowhere near adequate for you and is why many of us self treat to become (and stay) well.
The PAS has a page for professionals and you could try writing to your surgery with the following links, taking someone close with you for any follow up consultation.
These are the links I sent to my GP - Sleepy Bunny has provided many more that will, hopefully, help you get more frequent injections as soon as possible 🤞
pernicious-anaemia-society....
Advice on writing to your GP:
b12deficiency.info/what-to-...
Good luck finding answers Lulu.
This is amazing. I've been trying to do my on research, thankfully why I found this page because I don't know what to ask. I will pour over these links. I do go to a hematologist/oncologist doctor. Initially, I told him I had PA (previously diagnosed) and that I went through B12 treatment. He seems surprised and almost questioned my symptoms as something else because the B12 treatment should have lasted me a few years. When the results came back, Nov. 21, then he was contrite. (I reminded him of what he said). Thanks so much.
Hi,
Just checking I've understood...
Did you have an injection every 8 weeks over a period of time?
Or 8 injections, one per week?
I'm assuming your original B12 result was 57ng/L and after the B12 injections it was 136 ng/L.
Let me know if the units are wrong. B12 is sometimes measured in pmol/L. It's also helpful to see the ref range which is usually put next to the actual result.
Was it Serum (Total) B12 that was measured or was it Active B12?
If your B12 level is still low (I'm assuming it was serum B12 that was tested) then that suggests to me (I'm not medically trained) that you probably need B12 injections more often.
What are your iron results like now?
Have you got recent folate results?
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...
I've said this to many already but thank you so much. My Nov. 21 serum results were 57 pg/ml. (vs. range of 232 -1245 pg/ml) My ferritin levels were 10 ng/mL (vs a range of 15-150 ng/mL). I started weekly iron infusions (IV Venofer 300 mg) at the center and B12 injections (1000 mcg). My folate results in 2021 were 5.3 ng/mL (vs. >3.0 ng/mL) and the latest are 4.1 ng/mL. All the latest results were from 3/7/22. I will ready through everything. (I really thought it was a quick fix with the injections and then back to normal. Now kicking myself for not following through which I usually do)
Hi,
"My folate results in 2021 were 5.3 ng/mL (vs. >3.0 ng/mL) and the latest are 4.1 ng/mL. "
Your folate results are in range but don't look great to me and they seem to be dropping.
Have you asked GP if you need to take a folate supplement?
Most of info below will be in the links to threads at the bottom of my other reply but I'll put the info here as well in case it helps someone reading your thread.
Some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
PAS website has lots of useful articles. Some PAS members print them out and pass them to GPs. They also have a page for health professionals that your GP may find useful.
pernicious-anaemia-society....
pernicious-anaemia-society....
I think good supplies of iron, B12 and folate are needed in production of new red blood cells.
Deficiencies in one of B12, folate or iron can mask deficiencies in the others.
B12 and folate deficiencies can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to microcytosis (small red blood cells).
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...
Thyroid Disease
It's quite common on here for forum members to also have Thyroid issues.
I 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 other thyroid tests that GP or a specialist can order.
Thyroid tests
thyroiduk.org/getting-a-dia...
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above)
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
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 next year.
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 (over 40 pages).
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I keep urging people in UK to find out what their local guidelines say, have a look at this blog post about a UK area that has a poor reputation on this forum as to how B12 deficiency is managed.
b12deficiency.info/gloucest...
Once you track them down, keep eyes on them as they get reviewed every few years and there are moves in UK to put more patients onto high dose oral B12 as an alternative to B12 injections. This is often promoted as easier for patients, but cynical me suspects the main incentive is financial.
To anyone reading this who's not in UK, I suggest trying to find out if there are any national or regional guidelines on B12 deficiency in your country.
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)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you been tested for PA and Coeliac disease?
Make sure GP follows recommended diagnostic procedures ( some don't!).
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
More on Coeliac UK website.
Misconceptions (wrong ideas) about B12 deficiency
Too many on this forum suffer from a prolonged effort to get a diagnosis or from inadequate treatment which I think is partly due to some health professionals having misconceptions about B12 deficiency.
Worth knowing what the common misconceptions are in case you meet a health professional with some.
B12 article from Mayo Clinic in US (aimed at researchers/health professionals)
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...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
UK treatment guidance has changed since above blog post was written.
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Useful B12 books
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 does not show updated BNF info.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.
Best piece of advice I ever got was to always get access to or copies of blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
Sleepybunny mentioned that people with "pernicious anemia" (immune system attacks "intrinsic factor", which means people can no longer absorb B12 via the digestive tract) are sometimes encouraged to treat B12 deficiency with B12 pills, liquids, and other ingestible substances. This issue is discussed quite thoroughly in the article Sleepybunny referred to as follows:
"B12 article from Mayo Clinic in US (aimed at researchers/health professionals)."
