Since having my little boy 3 years ago I have had issues with a B12 deficiency. I have been given tablets and told to take these however they have said if it continues I will require injections. I am now 25 weeks pregnant and have now been taking dizzy turns and fainting along with the extreme exhaustion and fatigue when I know my levels are not right. I was taken off my tablets when I became pregnant as they said my levels were back to normal. I have been back to the doctors again and found that my level is back doen to 150 and been put back on tablets for the fourth time. The doctor was not interested staying that the issue was due to me being pregnant. Do you think it's worthwhile calling for a second opinion and asking about the injections?
Pregnant and low B12: Since having my... - Pernicious Anaemi...
Pregnant and low B12
Pregnancy does lower B12 levels but that doesn't mean it is all that is going on - and having enough B12 is important if you are pregnant as the foetus will be dependent on you for the B12 it needs for development.
Properly identifying B12 deficiency during in pregnancy is, therefore a very difficult thing.
Do you know what strength the tabelts were? And did they make a difference to the symptoms? It may be that you have a problem processing B12 rather than an absorption problem, in which case it could be resolved by taking tablets.
It would be helpful if you could get a referral to a specialist but unfortunately most of the 'specialists' don't really understand B12.
Are you a member of the PAS - if you are I'd recommend trying to talk to them directly - though I think the offices are closed at the moment due to holidays (until the 14th June).
Your B12 is very low Suzy and, although we are used to hearing members' experiences on the forum, I still am shocked at the ignorance and dismissive attitude of many GPs.......
Re. Testing, here is a link to the latest BMJ research document summary (GP would probably able to access the full document):
It states at the bottom of page 4 ' under, 'How is Response to treatment assessed', that once b12 treatment is started, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
...............
You're obviously aware that a good level of B12 is especially important in pregnancy as high demands are made on your body by the foetus and a good level works with folate to ensure the best possible outcome for you and your baby.
Sally Pacholok has written two excellent books that contain important information that no parent should be without, not to mention every midwife and medic (I'd recommend buying a copy for them too).
amazon.co.uk/Could-Be-B12-P...
This is a very useful link, with templates for writing to your surgery, as well as videos and research links:
b12deficiency.info/b12-and-...
It often helps to take someone close with you to your next appointment for extra support and witness that you are not to be fobbed off!
Good luck for better treatment Suzy
Thank you for your reply. I am currently waiting on my own doctor calling me back so I can speak to her about my results. This has been an ongoing thing for a while and they have said before they believe I have an issue with absorption but appear to be blaming it completely on pregnancy this time. My concerns are for delivery and post partum as I have read a few articles on issues occurring. My ferritin level is also sitting at 7 which again is low however my hb is 112 which is normal. Also have ongoing issues with vitamin d levels however they haven't tested for this recently. Fingers crossed my own doctor listens a bit better!
Hi,
Sorry to read that things are difficult for you. I've assumed you're in UK so some info below may not apply if you're elsewhere.
Link about "What to do next" if b12 deficiency suspected.
b12deficiency.info/what-to-...
"Since having my little boy .... had issues with a B12 deficiency"
Did you have gas and air mix during labour? Gas and air mix contains nitrous oxide which can inactivate b12 in body.
Nitrous Oxide
gov.uk/drug-safety-update/n...
Interestingly NHS website does not list B12 deficiency as a potential side effect of gas and air under its advice on pain relief in labour.
nhs.uk/conditions/pregnancy...
More on nitrous oxide in B12 books below.
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. Think it mentions pregnancy.
"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 a paediatric version of above book called "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"I am now 25 weeks pregnant"
Link about B12 and pregnancy
b12deficiency.info/b12-and-...
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
"they have said before they believe I have an issue with absorption"
Have you been tested for PA (Pernicious Anaemia)? Coeliac disease? H pylori infection?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
UK B12 documents
I suggest reading all of these if you're UK based.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
B12 in pregnancy is mentioned in above document.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
More info in pinned posts on this forum including useful summary of b12 documents.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
PAS (Pernicious Anaemia Society) offers support and info about PA. May be worth joining if you think PA is a possibility.
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
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...
Have you got a copy of your most recent full blood count (FBC) test?
Folate Deficiency
patient.info/doctor/folate-...
Coeliac Disease
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
NICE guidelines Coeliac Disease (2015 version) mentions anyone with b12, folate or iron deficiencies should be tested for Coeliac disease.
nice.org.uk/guidance/ng20/c...
Coeliac blood tests
coeliac.org.uk/coeliac-dise...
H pylori infection
patient.info/health/dyspeps...
Best advice I ever got was to always get copies of all my blood test results.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
Do you have any neurological symptoms?
Potential Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Letters to GP about under treatment of B12 deficiency with neuro symptoms.
b12deficiency.info/b12-writ...
"Do you think it's worthwhile calling for a second opinion"
I had typical symptoms of b12 deficiency for many years but levels were mainly normal range. I asked for second opinion, third opinion, fourth opinion etc and kept on fighting to get treatment.
There is a window of opportunity to put right symptoms caused by B12 deficiency before there is risk of permanent damage.
I don't understand why you are not getting injections.
"waiting on my own doctor calling me back so I can speak to her about my results"
May be worth following up phone consultations with brief, polite letter to GP as sometimes things said over phone may be misheard or forgotten. See letter writing links. In UK, my understanding is that letters to GP are filed with medical notes so are a record of issues raised. My personal opinion is that letters are less likely to be ignored.
Has GP read "BSH Cobalamin and Folate Guidelines"?
I gave my Gps a copy of BSH document plus a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency " and a copy of PAS Symptoms checklist.
Help for GP
PAS have a section on website for health professionals. They can join PAS for free as associate members.
pernicious-anaemia-society....
Useful PAS document "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members only. Some forum members have passed this on to GPs.
pernicious-anaemia-society.... See Page 1.
I am not medically trained.
Currently sitting in the doctors waiting to go in to start my b12 injections. My own doc called me back and straight away said I need to be on injections to get my levels sorted before I have baby. Thank you for all the info I was expecting to have to push it but she has been brilliant!
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