Did some of you get pregnant while they had PA or a B12D or remaining symptoms of past B12D?
What supplementation did you take during pregnancy?
Can we see with echography if the baby's neural tube is normal?
I am vegetarian since I was born so my intake of B12 is quite low. A few symptoms appeared 5 years ago during the pregnancy of my 4 y.o. daughter (fatigue, back pain), and many symptoms appeared during a new pregnancy a year ago transformed into a miscarriage followed by 2 miscarriages (now I realize maybe the miscarriages came from B12D). It took me several months to get a diagnostic.
Two months ago, my B12 was 138 (normal > 180) and I had more than 50 symptoms, including neurological ones. I had to stop working.
I have been supplementing every day for 2 months now, globally I feel better but I still have some pain and symptoms.
I am not sure yet (too early to take the pregnancy test) but I think I am 1 week pregnant. If yes, it is quite crazy because it means my ovulation date was J10 instead of J15 while my cycles are regular. I didn't want to get pregnant again before I was fine, but now that it has happened, I would like to evaluate the risks of my health situation for the baby... Another risk is to have another miscarriage because of my deficiency.
Thanks in advance!
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Marybrown06
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When you say you have been supplementing do you mean with B12 via injections prescribed by a doctor (presumably after a diagnosis of B12 deficiency)?
And has you GP been checking on your folate levels?
In cases of pregnancy, it's always receommended that any supplementing is done under direct medical supervision.
If you think you may be pregnant (and especially because of your past history) it would be advisable to book an appointment to discuss all this with your GP as soon as possible.
It would be advisable not to add any supplements until you have seen your GP. If you are currently taking any supplement at all, please discuss this with your GP as soon as possible.
If your blood test was a serum B12 test (as opposed to an active B12 test), then this is low. If you have neurolgical symptoms the treatment in the UK is B12 via injection and your GP may like to consider prescribing injections if you're not already on them. If you are self-treating with supplements, please discuss this with your GP as soon as possible.
Please note that having B12 level that is within the 'normal' reference range is meaningless once any form of supplementation has taken place: efficacy of treatment should be assessed on symptoms so if your current symptoms are due to B12 deficiency, it's likely that you are not receiving sufficient B12 (something to discuss with your GP)
Your GP should also want to test your folate, ferritin and vitamin D levels, together with other routine screening tests performed when newly pregnant.
So, I strongly urge you to see a medical practitioner so that both your and the babies health can be assessed and managed appropriately, from a very early stage.
Really sorry if this isn’t directly answering your questions but things are much more complicated when a pregnancy is involved. In particular, your past history suggests that early health management via a qualified medical professional would be the safest thing for both you and your baby.
If you think that your GP is not treating your B12 deficiency appropriately then please post again and we can help with advice and information that you can share with your GP. (It would be useful to know if you live in the UK - treatment regimes differ according to country of residence).
If you have been diagnosed with Pernicious Anaemia (or have B12 deficiency and a strong family history of PA), and are a memeber of the Pernicious Anaemia Society, then they will be able to assist you if you need help with your doctor.
Congratulations and the very best of luck...please let us know how you get on.
I asked for the B12 test and my GP saw my level and said I need to take 1 x 1000 mcg every 10 days... which is clearly not enough with all my symptoms. That is why I decided to take 1000 mcg per day.
But you're right I will try to change GP because she doesn't know anything about B12.
I already did all the blood tests and everything was good.
I think my B12D probably comes from my diet, but I would like to check if I have absorption problems following Gambit advice.
To know if I have PA or absorption problems, which tests should I ask/run?
And which type of doctor should I meet? I don't think a normal GP in France would know anything about it.
I cannot be sure I am pregnant because it is too early for a blood or pregnancy test. I just feel some symptoms.
Sorry, will have to be quick here so...to answer your questions and help with your doctor:
Treatment for those with neurolgical symptoms in the UK is via injections: six x loading doses and then, for those with neurolgical symptoms, an injection every other day until no further improvement (sometimes for many months).
Test for PA is IF antibodies: test not very reliable - 40%-60% of those with PA test negative so negative test does not rule out possibility of PA.
B12 deficiency has other causes as well (heliobactor pylori infection, crohn's or coeliac disease, GI surgery, tapeworm infection, medications that interfere with B12 absorption - to name but a few). GP should investigate these kinds of possibilities for potential absorption problem.
Ask doctor to test for heliobactor pylori infection and to investigate possible absorption problems (as above).
Blood tests - GP's often say things are 'normal' when they're not - sometimes it's where the results are in the range that counts (i.e. hovering at the bottom or top of the ranges). Get copies of blood test results and post them on the site for help with interpretation (results and the reference ranges).
About GP's who understand B12 deficiency - in UK, hit and miss - some do understand, some don't. Expect the same in France - you could try changing doctors or try to educate the one you have if they're likely to be open to re-education.
B12 deficiency can involve many systems in the body. If you have gastric problems, usual to be referred to a gastroenterologist for further investigation. If neurological problems are involved, usual to refer to a neurologist (neuro symptoms have many causes and it's good practice to refer to that any other causes can be rules out). If referred to any consultant, treatment for B12 deficiency should be commenced whilst awaiting appointments.
Note: your serum B12 levels will appear to be normal because you have taken supplements: this does not mean that you do not have B12 deficiency - it simply means that you have raised your blood levels through supplementation. Levels are meaningless once supplements have been started - doctor should be looking at and treating according to symptoms, not blood results.
Get folate levels tested: B12 and folate work together so if folate is low the body cannot utilise B12 properly.
Note: tablets and sublingual don't work for everyone - you've been taking quite high doses and your B12 level is still very low so suspect that you probably need injections instead.
Thyroid and diabetes need ruling out (cross-over symtpoms with B12 deficiency - thyroid issues often go hand in hand with B12 deficiency. For thyroid, test TSH, FT3, FT4 and thyroid antibodies TPO and Tg for full thyroid status (not just TSH).
Going to paste in some links to information that will help with your doctor. Note: treatment regimes may differ in France but the underlying principles about B12 deficiency remain the same.
It's a good idea to get familiar with the information so that you can share it with your GP and better frame your request for diagnosis and treatment.
Looks like a lot of links but most are one page long, and will give you a better understanding of what your GP should (and should not) be doing for you.
Very best of luck...do a new post if you have any questions after reading or need more help to,approach your GP.
Sorry if this sounds a little stilted....short of time...here come the links (apologies if you've already been given this information - no time to check):
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Marybrown - if you are based in France then you should be able to go to a pharmacy and get a B12 shot - think they will do it for you - without a prescription.
Given the amounts you are reporting that you need to supplement it is highly unlikely that you don't have an absorption problem.
A B12 injection is going to be a much more effective way of raising your B12 levels than trying to raise them through tablets, though you may find that the tablets are effective in helping you to keep your levels high.
To give you some news, I have just had a miscarriage today.
Pregnancy tests went back negative but my menstruations came 9 days late (which is completely unusual for me) so I assume there has been fecondation hence pregnancy symptoms but implantation failed.
I am feeling better now that I supplement but my body was probably not ready yet! I will wait for a few months before trying again!
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