I was diagnosed with B12 deficiency back in 2015, had my loading doses then continued to have injections every three months. The injections would wear off after about 8 weeks. When I went back to the GP to ask if I could have them more often they refused, as my bloods came back at >1000. The locum I saw even put a rather nasty note on my patient record saying I was "hysterical", complaining of flamboyant symptoms - basically branding me a hypochondriac!
As a result I've continued with the 3 monthly injections, but have supplemented myself with sublinquals and patches in between, which have really helped (I don't want to start self injecting unless I absolutely have to).
I had my last injection in early December, then found out I was pregnant. The GP I saw to confirm my pregnancy told me I had to stop the injections as they could harm the baby (really?!) So I am well overdue my injection and have stopped my own top ups. All I've been taking is Pregnacare for the folic acid and vitamin D, which I'm also deficient in (the gp told me to keep taking the vitamin D!)
I am now 11 weeks pregnant, and signed off work for two weeks because I cannot function! I am exhausted, sleeping for 12 hours a night (and napping during the day) getting very out of breath on slight exertion, but most of all I have to lay down for most of the day because I feel so dizzy!
I went back to the GP to get my levels tested again, and my B12 level is now around 350. This is supposedly in normal range, therefore as far as the GP is concerned, no further action needs to be taken. But surely if my level was over 1000 a year ago when I was having the injections, but has now dropped so much I should still be having them? Especially as I am going to use more B12 now I'm having a baby?
I don't know what to do, I'm worried I will get accused of hypochondria again if I go back to the GP and ask for injections.
Written by
stina
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You do need to continue receiving injections. Can you make an appointment with the GP who told you that injections would be harmful to the baby and ask him or her to provide you the source of their worry? Maybe that doctor has misunderstood something. I haven't ever heard of B12 injections being harmful during pregnancy. It is such a necessary vitamin for the health of both the mother and child that I would think denying the treatment is far more harmful than giving it could be.
You undoubtedly will have a fight on your hands. I don't know what research you might be able to find to help your case, but if you can find research that has been published in medical journals your doctor is more likely to have to take it seriously. Hopefully someone who is better at finding links to those kind of research articles will be along to help you.
This article seems to highlight how important it is to treat the mother's deficiency lest it cause one in the child, but it is case studies of babies found to be deficient and doesn't really focus injections for pregnant mothers: ncbi.nlm.nih.gov/pmc/articl...
Are you a member of the PAS. If not, suggest that you join and contact them. They will encourage you to write to your GP with relevant information to support the need for on-going injections during pregnancy and, if that doesn't do anything they may be able to follow up for you.
The reference to being a hysterical is rather unfortunate and unpleasant and really bad on the part of the GP that you saw - it's an opinion that isn't really medically relevant. Makes my blood boil to be honest.
As others - you need B12 during pregnancy and with-holding injections because of serum B12 test results being high is really old-fashioned and not in line with best practice. MMA and homocysteine are two tests that would clarify if you are actually deficient at the cell level but your symptoms should really be taken as the evidence for that.
Generally B12 levels in pregnant women are lower because of the amount of B12 being transferred to the foetus to support growth, so makes it difficult to diagnose a B12 absorption problem, but as your problem has already been diagnosed and was being treated (albeit inadequately) ... words fail me.
Have you been able to talk to a mid-wife about things? They may be more aware than your GP of the need to maintain good B12 levels during pregnancy and may also be able to intercede for you. If your partner is on board with your B12 problems then may be they could go with you to see the GP and help you argue your case.
"The locum I saw even put a rather nasty note on my patient record "
My understanding is that it is a patient's right in UK to respond to comments like this by asking for notes to be added to patient record which gives their side of things.
"I was diagnosed with B12 deficiency back in 2015"
What did GPs think was causing your B12 deficiency? Did you have an IFA (intrinsic factor antibody) test which can help to diagnose PA (pernicious Anaemia). Might be worth having a look at your medical records.
BSH Cobalamin and Folate Guidelines gives guidance to UK GPs on diagnosis and treatment of B12 deficiency. I'd recommend reading whole document. I think it mentions B12 treatment in pregnancy.
Above is part of a useful link about writing letters to GPs about b12 deficiency. Person who runs website can be contacted by e-mail.
B12 books
"Could It Be B12" by Sally Pacholok and JJ. Stuart. mentions B12 deficiency in pregnancy.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). book is up to date with UK guidelines.
PAS
I'd suggest contacting PAS. They should be able to point you to useful info.
Test Results
Do you get copies of all your blood test results? The most useful I learnt from years of trying to find out what was wrong with me was to always get copies of all my blood tests. I learnt to do this after being told everything was normal/okay over the phone or even face to face and then finding abnormal results on copies.
In relation to b12 I look at B12, folate, ferritin and full blood count results.
I am not a medic just a patient who has struggled to get a diagnosis. I also struggled with GP attitudes and it was strongly hinted that I had hypochondria and psychosomatic symptoms.
Just wanted to say my deficiency was discovered whilst I was pregnant (b12 level of 60). I too was experiencing similar symptoms; daily exhaustion and dizziness. I had my loading doses whilst pregnant and I was repeatedly told the shots were of no danger to the baby.
A friend of mine who was pregnant was found to be very low in B12 and was given loading doses as a matter of urgency, so I think your GP may well be wrong. I suppose it might depend on the stage of the pregnancy though - there may be more risk very early on as there is with other things - I think my friend was about 5/6 months.
Hi this happened to my daughter but she found out she had low b12 whilst pregnant, I have pa so know about it. Her doctor told her it may be low but low may be normal for her! It was 106 (148-700( On advice from Martyn Hooper from PAS we wrote to practice manager the doctor then made an appointment to see her and they had already contacted a haematologist who had told them they had to give her injections so don't give up but expect a fight, contact PAS, practice manager and PALS if you have to good luck
Thanks everyone. I've spoken to my midwife, who totally agrees I should still be having my injections! I've been referred to an obstetrician (due to the B12 and a family history of diabetes) but as it will be several weeks until the appointment comes through, I'm going to go back to the GP and take my partner with me.
When this whole process started two years ago, I had my intrinsic factor tested, and I tested negative for antibodies. It seems I have an malabsorption problem, caused by years of Naproxen or Aspirin (for migraines) damaging my stomach lining, culminating with a week in hospital last year with a GI bleed.
"I had my intrinsic factor tested, and I tested negative for antibodies"
It is possible to have PA even If IFA (Intrinsic factor Antibody) test is negative. This is called "Antibody Negative PA"
Possible that your GP may not be aware of "Antibody Negative PA" as I think it was first acknowledged in UK in "BSH Cobalamin and Folate Guidelines". Published in 2014. flowchart below mentions Antibody Negative PA.
I experienced them same thing 14 years ago. At that time I had been getting B12 injections for 3 years. I moved house, changed doctor and fell pregnant between quarterly injections and just as my prescription ran out (self injecting). On my first visit to my new doctor to confirm I was pregnant I was told here was nothing in my medical file to say why I was on B12 therefore he refused to prescribe me any more. I was young and accepted what the doctor said.
Sadly, over the last 14 years I have been diagnosed with various individual ailments and I was starting to believe that I was just an unhealthy person I was eventually told I had fibromyalgia as well as an unidentified autoimmune condition. For the last 2 years I have been seeing a fantastic consultant who has told me that the previous diagnosis was wrong and that it is very likely that all of my previous diagnosis have been related, I am now being treated for a AIH but also being very closely monitored for any changes. Just this week ,he has advised that he is concerned about my iron and folate levels - so I explained my story and I am now heading back into hospital for more tests. I am frantically trying to get n touch with my original doctors practice to see if they still have my records as he says that this could be the root of all my previous issues.
Doctors are great but never be afraid to question their decisions, I was and whilst not fully resolved yet to think that continuing with my B12 injections could have prevented the last 14 years of illnesses is frustrating to say the least.
Hi i know how u feel im just over 8 weeks pregnant am b12 deficent and not long after that vitamin d deficent my doct told me to get my b12 injection when i got there the nurse told me no as it was dangerous i have been bleeding on and of for the past 2 weeks spotting and bright red blood ive been for a scan but they told me to early to see but they could see the yolk sack and to go back in 2 weeks every day i see blood my heart is breaking and wvery day im living infear i dont know what to do and so angry no investigations of whats causing the bleeding is happening ive read alot of causes but yet no one is doing anythink to cheek if its these i was told its not a molar pregnacy or eptopic can any1 help me with advice
I've definitely read something, either a link on here or on the PA site or on the NHS site that stipulates B12 is ESSENTIAL in pregnancy as the foetus can take a lot of the mothers stores and,conversely, if there isn't enough in the mother's body the child can end up deficient. Which is all very worrying.
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