Vit b 12 deficient even though GP says no?

[rebspen]

Hi There,

I’m really hoping you might be able to help me as I feel that everywhere I turn I hit a dead end! I’m 32, female and have a family history of vit B12 problems; my Grandfather has pernicious anaemia and it may be that my Uncle has the same.

I’m fairly certain I have a B12 issue, this was a concern before but as I’m now 7 weeks pregnant I’m even more motivated to get this resolved.

I have been suffering with the following symptoms for 2 – 3 years, maybe longer:

-Extreme fatigue; find it very difficult to get up in the morning even if on the rare occasion I’ve slept right through

-Chronic pulsatile tinnitus in left ear

-Insomnia

-Brain fog/ depersonalisation

-Difficulty concentrating and remembering things

-Palpitations/ double beating heart

-Pain in upper back & neck

-Anxiety & feelings that something bad may happen imminently

-Depression

-Brittle nails

-Premature clumps of white hair

I’ve been seeing my GP on and off throughout this time and was given various blood tests plus a referral for a ENT specialist. At no point was there anything that was considered abnormal so they pretty much gave up on me.

By October last year I was unable to cope any more. I could no longer work for more than 3 days a week due to the fatigue and inability to concentrate.

I eventually sought the advice of a nutritionist which completely changed my life. She gave me a Bit V12 oral spray (Better you, V12 Boost) at a dosage of 2000ug per day. After just a month almost all the symptoms had begun to subside and I finally felt alive and well again!

When I found out I was pregnant, I went back to my original GP who told me that the dose was far too high and potentially damaging to the developing baby. He advised to cease the spray and instead just take a pre-natal multivitamin.

I have followed his advice but within 3 weeks, pretty much all my former symptoms have returned.

I was tested for Vitamin B12 in 2008 which showed my level to be c.500. I had it tested again in October (i.e. just before I started taking the B12 spray) and it was 800. The nutritionist however thinks this was a false reading as I was already taking a b-complex vit.

Even though my levels are far from low (I believe the official guidance is less than 250?), do you think there’s a chance I could still be deficient especially considering the amazing results I had from taking the oral spray previously?

If so, are you able to advise me in terms of my next course of action? Should I be pushing for more tests? Should I be pushing for GP prescribed treatment?

I have started to take the spray again at a high dosage but worry whether this is safe for my baby.

Thank you so much in advance.

[nostoneunturned]

I am not a doctor but it does seem to me that your baby will be harmed if you are deficient in B12. B12 is water soluble and certainly does no harm to non-pregnant people even in large sub-lingual doses as the bodily usage of sub-lingually delivered B12 is a small per centage of the actual dose. One of the helpful downloads from the Pernicious Anaemia Society, at:

pernicious-anaemia-society.org

is Kevin Byrne's dissertation "The Enterohepatic Circulation of Vitamin B12"

You might like to follow this link to very extensive info re B12, pregancy etc.

ods.od.nih.gov/factsheets/V...

I personally am wary of the given RDAs as up to date research indicates an RDA of 12mcg is nearer the mark than the old RDA of 2.5mcg. Martyn Hooper's book," Pernicious Anaemia: The forgotten disease " is very useful, as is "Could it be B12?" by Sally Pacholok and Jeffrey Stuart, though with your background it is most likely that you have them.

Also by becoming a member of the Pernicious Anaemia Society if you are not already, gives access to a helpline with a qualified medical person -in the afternoons, I think.

I trust you have a trouble free pregnancy.

[nostoneunturned in reply to nostoneunturned]

Did they check your thyroid and all iron levels, not just the ferritin? Ferritin can seem OK yet other irons might not be up to speed. Here is a useful link to a site where you can also read other helpful stuff:

stopthethyroidmadness.com/f...

And there is an Active B12 test currently available from St Thomas hospital in London but you have to go there with a referral, presumably from a GP, and have blood drawn there. Active B12 is between 10-30% of the serum B12 which the NHS checks

Info and leads on:

active-b12.com/What-Is-Acti...

[rebspen in reply to nostoneunturned]

Thyroid and ferritin were both fine. The only thing that stuck out slightly was a low white blood cell count but they said nothing to worry about.

Thank you for this information.

[Hidden]

Hi Rebspen:

Please check answers to my own question about B12 "in the pool" as opposed to "active B12", especially the link to the British lab that offers the test for "active" supplied by Marre.

Also, do you know your blood type? Mine is B RH POS (the RH factor causes one cells to have both antigens/antibodies). I got it from my British father, and it runs on that side of the family, with many having digestion/absorption problems. The link is definitely with B12, only found by chance by British doctors in 1920 when they searched for cure for iron deficiency.

As far as the baby you carry, everything I read in the past four weeks 24/7 indicates B12 is safe, the excess being eliminated by your body. If you read my recent broadcast note that meat consumption is what is helping me, not only raised the ferritin but B12 in the pool. I eat only lean meat, mostly tenderloin, plus turkey and salmon. Try also chocolate milk 2%. I can drink 1 litre of it a day!

Hope the above helps, best of luck to you and the baby.

mashby

[purplemummy]

If you have pernicious anaemia ( which is likely if it runs in your family ) Then even if you eat a whole cow , you will not absorb the B12 .

Active B12 test at St Thomas's a great idea .

Plus read the book " Could it be B12 " American author .... Print out the stuff about babies & what happens if the are born to a B12 deficient mother .... It should shock him into action very quickly .

Also remember that you do not need to have your maternity care from your GP . You can have midwife care only . Gps get paid extra if you go to them but they are not baby specailists .

[rebspen in reply to purplemummy]

Thank you all- this is so so helpful.

I've read that if I have been taking b12 even in small amounts the tests could be compromised. The pre-natal vit Im taking has 300ug and in the last couple of days I've taken 1200ug of the oral spray.

I don't feel any better so hoping whilst the total b12 test may be skewed the active one is fine?

[rebspen in reply to rebspen]

I just spoke to GP. They're not happy for me to have this test done yet. They want me to have another standard b12 first an we can chat about next steps after...... Makes me want to scream!

I've emailed over the active test info from st Thomas' but doesn't seem to have made any difference.

Even if the standard test does come back with something significant (which I doubt as I've been supplementing) it will take 10 days for results then another 10 days for the active one. I don't really feel like I have that amount of time to waste given where I am with this pregnancy.

Do you know If there are any private London based drs that specialise in this?

Thanks so much again.

[purplemummy]

It will still be skewed but I would think if you pay for the extra tests that St Thomas's do Homocysteine & MMA that will tell you if you are low at a cellular level . I would email Denise Oblein at St Thomas's and see if you can speak to the very helpful Dr who runs the unit & ask his advice [e-mail] realise you are anxious due to your pregnancy ... I wish I had known I had Pernicious Anaemia when I had both my boys . I would have taken action then .

[purplemummy]

Hi again

You only need a letter from the GP they don't have to do anything else . If your GP is a problem .... Arggghh this makes me so angry ...

You could get another private Dr to do a letter for you ... or in fact anyone who has the letters Dr in front of their name . I really don't think St Thomas's care who the Doctor is ..

When they started doing these tests last year the only way they could get this past the PCT ie to be able to do private testing was to agree to some rules . One of which was that results had go to a Dr .

They are trying to change this .

I was tested at the "London blood tests " for intrinsic factor antibodies & Parietal antibodies ( not everyone shows postive even if you pernicious anaemia ) I was in range but had Intrinsic factor antibodies . ( as were both my children ) but I am treating all of us ... I am not planning on waiting till I am too ill to do anything about it .

[rebspen]

Thanks all - much appreciated.

I've just got off the phone to the GP and they've agreed to a letter for active b12 and MMA. Woohoo!

I'm just worried at how much it will be skewed by the supplements I've taken in which case it might just give them more proof that nothing is wrong.

[rebspen]

Incase it helps anyone else, I just got off the phone to St Thomas'. As I've been taking oral supplements they've recommended I wait a week before having the inactive test.

Im hoping that ceasing all vit b12 for this time wont cause my symptoms to worsen or be detrimental to the baby.

I have a few questions still and wondered if anyone might be able to help. Apologies if Im repeating myself or other people on the forum I just want to make sure I'm crystal clear!

--Would b12 oral spray have had such profound effect if wasn’t b12?

-How likely is it that I have pernicious anemia/ vit b12 defciiency given the blood tests & GP say highly unlikely?

- Is having a vit b12 vit deficiency just pre-cursor to p.a?

Any help appreciated and thank you so much for everything so far!!!

[nostoneunturned in reply to rebspen]

I am not a doctor but self-treated with sub-lingual tablets and sprays for B12 deficiency 167 (180-800) with 28 neuro symptoms and my opinion is your spray was definitely B12. From my experience I cannot see that there would have been such an effect had it not been B12.

The blood tests your refer to are those you have had for serum B12, last reading was 800, that is pretty good even if boosted by B supplementation, but measures total B12. The blood tests to reveal classic PA caused by antibodies to Intrinsic Factor are not perfect, many people have PA but no IF a/bs.

A person can become just as B12 deficient through having anti- parietal cell antibodies, for the parietal cells produce the hydrochloric acid/intrinsic factor but if a/bs are acting against PCs, resulting in a deficiency of hydrochloric acid/Intrinsic Factor then the B12 cannot be cleaved from animal protein so the result is again B12 deficiency by a different means.

Your last question: Having a b12 deficiency is not necessarily a precursor to PA as b12 deficiency can be caused by lack of B12 in diet which can be remedied by a change of diet. Unfortunately the NHS only offer supplement support of B12 tablets taken orally, as distinct from sublingually, but these tablets are cyanocobalamin, the least useful form of B12 and incapable of preventing/fixing possible nerve damage evidenced by extant neuropathy. Your spray would no doubt be methylcobalamin as methylcobalamin has already been methylised and so is directly useful to the body. The other two forms, hydroxocobalamin (delivered by injection by NHS) and cyanocobalamin must be methylised, using folate, in order to be useful to the body.

But of course b12 deficiency can be found while the person is on the way to full-blown PA owing to IFab's, or low and inefficient hydrochloric acid or PC ab's so GPs are supposed to measure B12 twice at a specified time interval to find out if the B12 is declining then do the relevant antibodies tests.

Purplemummy's correct in saying eating a whole cow does no good B12-wise if you have PA as B12 would not be able to be cleaved from meat. But your B12 spray would be absorbed sub-lingually via membranes under tongue, and also elsewhere in mouth, so avoiding the stomach/gut/ileum route to the blood stream/cells, but getting into the blood stream directly. Sublingual doses are seemingly high because a high percentage of supplemental B12 is lost. Normal digestive processes are much more efficient.

The above is a potted version from the learning sources mentioned above, as B12 deficiency/PA is in your background you will, no doubt, read them with deep interest.

So glad you can have the Active B12 test and be in contact with those at St Thomas who have really up to date knowledge. You really will be fine

[Charistory]

Don't lose hope, the best is yet to come. I was in a similar place and understand your concerns, symptoms and the drain on one's body while pregnant as I was not properly diagnosed while eating for 4 brains (3 precious children and myself). Tandem nursing twins exclusively while carrying our 5th child in womb in under 8 years was a challenge. Doctors are often helpful, but not all knowing and they may miss something, especially if they have never been trained in it. If I was in your shoes, I would use your tax return money and go to a naturopathic doctor (ND) for a second opinion and targeted testing of the size of your red blood cells. Be sure it is someone who will take the time to listen to all the pieces of your health puzzle. My ND called for tests of my MTHFR gene and confirmed two variations or anemias; Pernicious anemia and a folate anemia(hyperhomocysteinemia) I would refer your 2nd opinion ND to: MTHFR Case Studies of Miracles, Mistakes, and a Thousand Pens” August 2011 by Jared M. Skowron, ND in Naturopathic Doctor News and Review that discusses the variations of the MTHFR gene. I would also consider reading: “IODINE: Why you need it, Why you can’t live without it” by David Brownstein, MD, as pregnant women are over 600% more likely to be deficient in it.

The way I made it through (some days more gracefully than others) while undiagnosed was asking for and receiving help from others and paying close attention to eat regularly the highest quality most nutrient dense forms of the foods that made me feel best, not just going down, but 3-4 hours after. Foods that made me feel best were sushi, eggs, calve's liver, and wild salmon with skin with greens and cheeses like feta, moz. and chevrie and sprouted grain organic bread. I also craved sea salt in garlic hommus and salsa. A soy and greens protein shake with metabolism boosting spices like cinnamon and ginger also hit the energy spot. Those foods that kept my energy up for several hours made the keep list. Those foods that made me want to nap, got wait listed. When I ate best for me, I felt good enough to swim butterfly and play advanced recreation volleyball. If I ate junk (like refined sugars and empty refined carbohydrates), I was ready for a nap. When I felt good, I would try to fit in exercise as that helps increase oxygen to the brain, both yours and the baby and decrease depression.

I would also immediately supplement with, in addition a whole food organic prenatal supplement, B12 in the form of SUBLINGUAL methylcobalamin, iodine rich foods, whole food D3, bioavailable folate (Actifolate by Metagenics), nutrient dense protein rich foods, foods/oils high in essential fatty acids, Zyflammend, anti-inflammatry foods, Drenatrophin PMG, and Seriphos (phosphatydalserine). Such foods and supplments are great stuff for sleep, reducing stress on the adrenals, red blood cell replication, nervous system building, building the placenta and the baby within you, and maintaining your body. I feel best taking (and I'm not pregnant now as far as I know) 4000 iu B12 divided in two doses and 10000 iu whole food D3 in two doses, I also supplement daily with "Calm" magnesium, a supplement by Metagenics called Actifolate with 2 forms of bioavailable folate (one of which is L-5 methyltetrahydrofolate) and Seriphos (Phosphatidylserine Serine). All of these foods and supplements are available online through Dr. Michael Murray ND, Amazon, Vitacost, and New England Nutritives, no doctor appointment or shot necessary.

With deep gratitude to all those who helped me each step of the journey,

Charistory

[Jaxon1985]

Hi All

I have been very sick with extreme fatigue, dizziness, heart palpitations, folate deficiency in blood tests (despite taking supplements) and fainting despite eating a high vegetable/egg/red meat and healthy diet for years. I have developed neurological symptoms recently including numbness and cold hands and feet.  I went to a private doc Monday since ive been to my gp so many times and he said I have pernicious anaemia and need b12 injections. When he said that I then told him that my aunt died from pernicious anaemia so he said to go back to my gp and get another full blood count immediately. My boyfriend Immediately bought me a vitamin b12 oral spray and full vitamin b 1ml drop to keep under your tongue which ive had lots of since Monday. I just went to the gp who said my b12 was 350 last year which means it's absolutely fine despite low folate but they'll retest me just in case. 

I am concerned that all the sprays and drops ive taken over the last few days will skew the results? Should i retest if it comes back normal again or will it not have had time to get into my blood? I am also celiac with many gastro problems so have trouble with absorption.

Many thanks,

Jacqui