My daughter and I are both B12 deficient, she is having 2 monthly injections. She’s struggling to get pregnant and I wondered if there is any evidence of this being an issue or advice for women in this position that anyone knows about?
I know once pregnant women have a greater need for B12 top ups as the foetus will put an extra demand on them.
Thanks
Yes I have read in one of Martyn Hooper’s ( our founder and chairman) books on PA , that B12 deficiency can lead to infertility. Maybe an increase in injections would help , or if your daughter does not have Pernicious Anaemia , just supplementing with B12 tablets between injections . Homocysteine levels are important in fertility , and play a crucial part in conceiving and in keeping the foetus . A low Homocysteine level is what you should be aiming for , certainly under 12.
Low B12 can also affect male fertility .
Don’t forget that folate/ folic acid is also important . Plenty of green leafy vegetables, peas etc or a folic acid tablet (say 400mcg) is also needed . Best wishes .
Hi,
Some links that may be of interest. I am not medically trained.
Link about "B12 and Pregnancy"
b12deficiency.info/b12-and-...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you both been tested for PA (Pernicious Anaemia)?
In UK this would be an Intrinsic factor Antibody test (IFA). IFA result is not always reliable and it is still possible to have PA even if IFA result is negative.
Coeliac disease
UK guidelines suggest anyone with unexplained B12, folate or iron deficiency should be checked for Coeliac. I have read that Coeliac can lead to fertility issues.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection
patient.info/digestive-heal...
Nitrous Oxide
gov.uk/drug-safety-update/n...
If you suspect PA is a possibility then worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
PAS blog post about how PAS can support those seeking PA diagnosis
martynhooper.com/2017/06/24...
B12 Deficiency Info website
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
UK B12 documents
If you're in UK, I suggets reading all of these documents.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Above document mentions pregnancy.
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...
B12 books I found useful
Pregnancy is mentioned in all these 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).
"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".
If in UK, local library service may have copies of these books.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 13 is about fertility.
Point 14 is about pregnancy.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
B12 Awareness (US website)
Stichting B12 tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 treatment
It's vital to get adequate level of treatment or there is a possibility of neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
More B12 info in pinned posts on this forum.
Do either of you have neuro symptoms eg tingling, tinnitus, pins and needles, tremors, memory problems, balance issues, words finding difficulties, restless legs syndrome, brainfog etc?
Have you seen neurologists if neuro symptoms present?
Wow thanks you for all of these links.
We have both had many tests and slightly different results re: PA etc but it her own ( pregnancy) needs that I’m concerned with particularly so the info you’ve provided is all really useful Thanks
Your reply is 100 times better than mine — great !
Hi again,
"We have both had many tests and slightly different results re: PA "
I hope your GP is aware that it is possible to have negative results in tests for PA and still have the condition.
See BSH Cobalamin and Folate Guidelines link and flowchart link in my other post and Martyn Hooper's book " What You Need to Know About Pernicious Anaemia and B12 Deficiency " for more info on Antibody Negative PA.
PA can run in families. If there is PA in blood relatives are your GPs aware of this?
If there are blood relatives with PA, then your daughter may find still find it difficult to get her doctors to consider the possibility of PA because there may be an assumption that any low B12 is due purely to pregnancy.
In UK, test for PA is Intrinsic Factor Antibody test (IFA). Some countries use a parietal cell antibody (PCA) test but this is not recommended in UK as a diagnostic test for PA.
Links about IFA and PCA tests. See section on what test result means in both links.
labtestsonline.org/tests/in...
labtestsonline.org/tests/pa...
It is possible to have more than one cause of B12 deficiency at the same time.
Auto immune conditions
Having auto immune conditions in the family increases the chances of family members developing other auto immune conditions.
Have doctors excluded the possibility of other auto immune conditions that may impact on pregnancy eg
Thyroid problems
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 PAS forum members who also have thyroid issues.
Lupus and Hughes Syndrome ( also known as APS, antiphospholipid syndrome)
aps-support.org.uk/about-ap...
Coeliac disease
In UK, two first line tests are recommended for Coeliac disease
1) tTG IgA test
2) Total IgA test
As I said in other post, UK guidelines suggest anyone with B12, folate or iron deficiencies should be tested for Coeliac disease. Might be worth checking if both of you have had tests for Coeliac in past.
If yes to being tested for Coeliac, were both recommended tests done for each of you?
UK GPs often forget to do Total IgA test.
tTG IgA test checks for a particular antibody to gluten.
Total IgA test checks which patients have IgA deficiency.
Patients with IgA deficiency will have a negative result in tTG IgA test even if they have Coeliac disease and will need alternative tests for Coeliac disease.
If both tests weren't done, I don't see how GPs can be confident you do not have Coeliac.
If you were tested for Coeliac, were you each told to eat plenty of gluten in more than one meal a day for several weeks before blood taken.
One reason for a negative result in tTG IgA test in a person with Coeliac disease is that patient was not eating enough gluten before tests and therefore there were not enough antibodies to gluten circulating in blood to register a positive result in test.
Coeliac disease and Fertility Problems
coeliac.org.uk/healthcare-p...
Have you been checked for other nutritional deficiencies eg Vitamin D, folate, iron etc?
Vitamin D
nhs.uk/conditions/vitamins-...
What to do next if B12 deficiency suspected
b12deficiency.info/what-to-...
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
Again thank you for this amazing amount of useful information. I will share this with my daughter as I’m not sure what tests she’s had done. She has currently has two monthly B12 injections and seems to have a supportive GP so hopefully she can arm herself with knowledge and ask for some more investigation.
There is a familial link - my great grandmother lived off liver milkshakes ( yuk) as she had been diagnosed with PA. she lived to me a good age but was deaf and blind in later years so may have had some neurological damage. I’m sure the milkshakes had limited effects.
Vit D is something we are very aware of too as I had a co-occurring deficiency - the Vit D took a lot longer to identify than the B12 which confused many drs and me as we all expected me to feel better as soon as I’d had my loading doses but it went on for over a year. It is now under control with sublingual spray.
Thanks again
Chiming in with my personal story. I was B12 deficient in 1995 and started self injecting. In 1996, the first month we tried to conceive at age 27, I got pregnant. Same thing in 2002. I even had had cryosurgery on my cervix for dysplasia (which can be caused by b12 deficiency), which allegedly might have made it harder to conceive but it did not.
Do keep up the injections during pregnancy
Thanks for your reassurance Ashweb90
How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
