Hi, I am a 34 year old mum. I have had ‘episodes’ of exhaustion since I was 19. I have had routine blood tests at the Dr and they always come back normal. In the last year my symptoms have become much worse. My symptoms are: exhaustion, complete fatigue that isn’t helped with sleep, pins and needles in my hands and feet. (But not consistent and it can’t jump from one place to another), chest pain especially after going up stairs, tiny red spots on my chest and abdomen ( dermatologist says it’s simply red blood cells being broken down but I have noticed it’s getting worse). I have been to my Dr, blood tests are all normal, slightly increases erythrocytes but no specific test for b12, folate or homocysteine. Does this sound familiar to anyone? I have no idea what’s wrong and all of the standard blood tests come back normal. I am starting to feel a bit crazy. Can anyone relate? TIA X
Please help! Could I be B12 def? - Pernicious Anaemi...
Please help! Could I be B12 def?
Hi LucyRose-86,
Apologies but I don't have time to leave a long reply.
I know from personal experience that it is possible to have severe b12 deficiency with an in range serum B12 result.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA (Pernicious Anaemia), B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
If you're in UK...
Many UK forum members are reporting difficulty in getting B12 treatment due to impact of pandemic.
I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.
healthunlocked.com/pasoc/po.....
It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.
I am not medically trained.
Thank you very much. 😊
I have read all of your links. Thank you this is so interesting. I haven’t been tested for b12 def, I have only had a full blood count and because I have a 5.3 Mill mcl level of erythrocytes the Dr says that I don’t have anemia and no further testing is necessary. My question would be.... because b12 is a macrocytic anaemia, could it present as a seemingly high erythrocyte count when really they are megaloblastic (just big and strange shaped blood cells and in a quantitative blood test they just shows as increased values). Thanks for your time, you are really well informed and it’s really helpful. 🙂
I cannot understand that your b12 blood serum level has not been tested , or folate . You definitely need those results . Absolutely essential .And even if your B12 Serum result is “normal “, you can still have P.A. You don’t have to have enlarged red blood cells to have P.A., though many doctors believe this . Symptoms are all important though , not blood results . I’m assuming that you are not vegan or strict vegetarian. You do need the b12 blood serum test result ASAP . I believe that surgeries are still doing blood tests during the pandemic . Other wise you could get a home test from a laboratory eg Medichecks .
If you have P.A. , tablets will not be of help ., and best not to take any , as that could skew a B12 serum result .
P. S. Just found that NICE states that B12 should not be tested if a full blood test does not indicate Macrocytosis . ,!!!!!!! This totally shocks me , and I cannot understand it . It is shocking , because it is a known fact the you can have Pernicious Anaemia without Macrocytosis .
Thank you so much for your reply! You are really well informed and it helps to talk to someone who knows what they are talking about. I will go to the Dr next week and ask for a b12 serum test. Should I also ask for folate, mma and homocysteine levels as I read these help with a PA diagnosis? Also is it possible to have an intermittent low grade fever with PA? And I am not a strict veggie but eat very little meat ( every two weeks or so) and I am lactose intolerant so no dairy for me either. Thanks a lot wedgewood for your help! 🙂
Hi,
Might be worth writing out a typical weekly diet, food and drinks for GP so GP can see what you are eating and drinking.
Meat, fish, shellfish, dairy, eggs, foods fortified with B12 are all good or reasonable sources of B12. If you are eating only a small amount of these type of foods; it's possible that any B12 deficiency symptoms are due to diet.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Peripheral neuropathy can be associated with B12 deficiency
Link about Peripheral Neuropathy
nhs.uk/conditions/periphera...
In UK, mild dietary b12 deficiency is sometimes treated with low dose oral B12. Severe dietary B12 deficiency should be treated with b12 injections.
Where B12 deficiency is due to an absorption problem in gut, UK recommended treatment is B12 injections. See BNF link down page.
If you're not in UK, it's helpful to know which country you are in as pattern sof treatment and type of b12 used can vary between countries.
There are many other causes of B12 deficiency besides diet.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Coeliac disease
UK guidelines suggest that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Any exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Any possibility of internal parasites eg fish tapeworm? For more info search online for " B12 deficiency parasites".
If you suspect that PA is a possibility then worth joining PAS as they can pass on info and offer support.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Overseas members can use online contact form.
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK.
At moment they are offering online meetings.
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
"My question would be.... because b12 is a macrocytic anaemia"
B12 deficiency does not always cause macrocytosis. About half of people with PA do not have macrocytosis.
Macrocytosis is mentioned in next link to a UK B12 document.
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...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
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...
"and all of the standard blood tests come back normal."
Have you seen the results or were you just told they were normal?
I learnt from bitter experience that being told everything is normal does not mean it always is.....
Best piece of advice I ever got was to always get copies of or access to blood test results.
Access to Blood test results (England)
nhs.uk/using-the-nhs/about-...
In relation to b12 deficiency I look at serum B12, folate, ferritin (or other iron tests) and full blood count FBC (also known as Complete Blood Count in US).
If you have results for FBC, perhaps you could post them here along with reference ranges. If you do, take care not to post any personal info such as names etc.
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...
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. See BNF link up page for up to date 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
Neurological Consequences of B12 Deficiency
If a person is b12 deficient from whatever cause, it's vital to get adequate treatment as consequences of under treatment can be severe.
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs and representatives of devolved administrations may be worth talking to if unable to get adequate treatment.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Wow Sleepybunny! Thanks! That’s loads of information. I will get researching. Thank you for taking the time to reply. I really feel like this could be the answer for the first time in years. This forum is amazing and everyone who has replied has been so knowledgeable and helpful. Thank you again 😊
You can get enough B12 without eating meat , as long as you don’t cut out eggs and fish . You already omit a source of b12 by cutting out dairy .But of course , if you have P.A. , you will not be be able to absorb any B12 from food . Injections are the answer .
Certainly you should ask for folate to be tested ,as B12 and folate work together . I don’t know if the NHS will test MMA and homocysteine, as they are quite expensive tests . But do ask for them , because it indicates that you have some knowledge . But don’t do any supplementing until you’ve had a test . You should know that if you get the test for B12 antibodies ( IFAB test ) , that a negative test does not mean that you don’t have P.A. , That’s just another gauntlet that P.A. patients have to run .!
I wish you all the best .
Thank you so much for taking the time to reply to me. As I said to sleepybunny above I really feel like this fits my symptoms. If I hadn’t written on this forum I would never had had this information so thank you again. I hope you are having a good day 😊
It really makes my day Lucy-Rose if I think I’ve helped somebody . I wish I were more knowledgeable. I can only help with simple things unfortunately . I had a terrible time before I got a diagnosis ( had to go to a private doctor to get it, with a positive IFAB test ) . By this time I believe I’d had P.A. for certainly 15 years . So I’m left with strange feet !( diagnosed as being “idiopathic“ — But they have recovered from being totally numb , which is great . So I can still drive . I won’t tell you the whole story — too boring ! I just want you to get the treatment that you need — whatever it is . It’s awful to be fobbed off all the time , especially when you are feeling unwell as you are . It takes so much strength . And you’ve a life to lead and children to care for . All the best .
Hi again,
You could access your online medical records or ask for copies of any blood test results for past few years and look closely for any patterns in results.
Although you've been told your results are "normal".
1) There's always the chance that some were not normal. This happened to me more than once.
2) Borderline results in several tests may be significant
3) Have any of your results been dropping over a number of years?
If a B12 result was 600 ng/L then at next test was 300 ng/L then next was 210 ng/L that could be significant although all within normal range.
Details about online access should be on your GP surgery website. Look for online access, patient access, emis access.
May be worth looking at whole medical record.
GPs have been known to make mistakes in info.
GPs have to correct factual mistakes eg wrong name, wrong date of birth.
They do not have to make changes eg to a diagnosis just because a patient disagrees with what they have written.
It is possible to ask for a note to be inserted in medical records that says patient does not agree.
gponline.com/amending-medic...
Do you have any neurological symptoms?
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
Neurological symptoms include
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
Does your GP have a list of all your symptoms, especially any neurological ones?
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, requests for referrals any other supportive evidence.
If yes to neuro symptoms has your GP referred you to
1) a neurologist
2) a haematologist (See NICE CKS link in my other post)
3) a gastro enterologist if gut symptoms present?
A gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H pylori infection and other gut conditions.
Warnings
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
If relationship with GP/specialist doctor becomes strained, can be helpful to take a supportive friend or family member to appointments. It's my impression that GPs are sometimes kinder when there is a witness present. Even better if person has read up about b12 deficiency and is willing to speak up for you.
nhs.uk/common-health-questi...
Films about B12 deficiency
I would ask for MMA test. My GP had my MMA tested because she could see that my B12 deficiency symptoms were getting worse despite injections raising my B12 from 196 ng/L to over 2000ng/L within 4 months.
My MMA was raised - which by then should have normalised. The lab where blood test was done confirmed her functional B12 diagnosis. I was then put back on loading dose for 6 months.
Later, when I deteriorated again, I was sent to haematology, who tested my MMA another 4 times. Always raised, but never high enough to cause concern for them- and eventually dismissed as "probably my normal".
All 5 tests were done on NHS.
GP did have some trouble getting the initial test done as most local labs do not perform this serum test. She persisted, because she recognised a similarity with an unresponsive B12 deficient patient from 10 years previously, who on further investigation turned out to have functional B12 deficiency.
A good GP is essential. I still believe she was right in her diagnosis.
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