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Vitamin B12?

(9 Posts)
DragonMamma Thu 27-Oct-16 22:49:22

I was recently diagnosed as vitamin b12 deficient after readings of 150ng/l then a few weeks later another of 99ng/l

I've already started my loading dose injections and I'm awaiting bloods on IF.

Can anyone shed any light on why it would drop so dramatically over such a shot period (around 7 weeks) and what else I should be pushing my GP to do or look for?

I am early 30s and eat a vit b12 rich diet so no worries there.

I've been the driver for this after a maxfac guy highlighted a problem with my tongue and my GP was scratching his head when it comes to understanding why it's so low/fallen so dramatically.

I just need to feel better and hopefully address it so that I can survive on the 3 monthly injections....

bluebell9 Fri 28-Oct-16 12:33:02

I have pernicious anemia so I have B12 injections every 8-10 weeks.

I also have a diet high in B12 rich foods but I can't absorb the B12 from the food as I don't produce intrinsic factor which allows the B12 to be absorbed.

If injections every 3 months aren't enough, and you are feeling tired/rundown toward the end of the 12 weeks, ask to have them more often.

PA is an auto immune disease, and people with PA can be more likely to develop thyroid deficiency. They found I produce auto-antibodies that attack my thyroid but I don't need medication yet as my levels are ok.

DragonMamma Fri 28-Oct-16 18:42:56

Thank you for your response.

They are testing my IF to see if I have PA so hopefully that would shed some light.

I queried the 3 monthly injection and the nurse said they don't consider giving them more often. What happens then?

I feel so poorly, I can't face feeling better then slipping back to this again!

RockinHippy Fri 28-Oct-16 19:24:38

Unconfirmed PA, but B12d diagnosed here too, so is DD, PA is only one reason why you cant absorb B12 though, theres others. There's several reasons why B12 can suddenly drop too.

Lots of PA in my family, so thats most likely for us, NICE recognise that ID, PCA & Serum B12 tests are all unreliable, so a negative PA test doesn't mean you don't have PA, but a positive test does.

Heliobacter Pylori infection is another much more common reason for B12d, it causes Gastritis, so it can affect food digestion/nutrient absordtion, there are other reasons too.

The blood chemistry around B12d & other Vits & minerals is complicated & certain other deficiencies can mask B12d as they work together, so correcting that deficiency might mean your getting a more accurate B12 reading now.

The NHS Serum B12 testing isn't really much good, it measures all the B12 in your blood, not what your body can use, you just we the unused stuff out, but it will still show in your blood for a while. So it might be higher if you have had meals rich in B12 or were taking supplements or eating fortified foods before your blood was taken. It could have dropped if you were tested on a day where you had eaten less B12 etc.

Plus theres a long list of drugs that deplete B12, even Gas & Air used in childbirth/some dental work etc, Also pregnancy as your DC gets its B12 stores from you, if your B12 is ok, you suddenly end up low.

Lots of reasons, I'm not medical or anything, but B12d/PA is massively misunderstood by too many Doctors. You've been lucky, sounds like you have a good Doctor. Too many of us have to fight for testing & treatment, so we have to learn & educate our Drs as for the most part, they don't have a lot of training in deficiencies & often misunderstand the guidelines too.

But, treatment can make a world of difference, you do need to take other vitamins & minerals too, as B12 needs these cofactors to work. You need to be taking...
5mg of Folic Acid, (thats 12 of the 400mg ones) whilst you are on your loading dose,
Magnesium(not oxide)
Complete B vits(for a lower dose B6)
plenty of potassium rich foods
lower dose iron supplement such as Feroglobin

My DD was very ill, on a good day, she stuck in a wheelchair, in severe pain, raging anxiety, barely slept & much more. I knew we had PA in our family, but it had supposedly been ruled. finding out SIL had the hereditary type too, I've had to learn this stuff so I could fight for treatment for her sake. I will come back with links to my sources of info. DD who missed nearly 2 years of school is now back on her feet, back in school & is out dancing at a halloween party with her friends tonightsmile. She gets monthly injections

RockinHippy Fri 28-Oct-16 19:35:39

THIS WEBSITE is a great source if info.

Also on the "useful links" page, there is a link to "Pat Kormics Facebook Support Group" you will find all the help, answers to questions & advice you need there. They were a godsend to me & my DDsmile

DragonMamma Sat 29-Oct-16 08:42:19

Thanks Rocking Hippy! That's great info.

The Dr didn't mention taking folio acid for my loading dose. I'm halfway through now, is there any point in starting them now?

DragonMamma Sat 29-Oct-16 08:43:46

PS, I'm so glad your dd is better. Sounds like she was really poorly. I fear I was heading that way, every day I was that bit worse. It was frightening as hell.

RockinHippy Sat 29-Oct-16 13:20:34

The Dr didn't mention taking folio acid for my loading dose. I'm halfway through now, is there any point in starting them now?

Sadly seems that they rarely do

Ys definitely start taking it asap. B12 uses up folate (which your body converts folic acid into) so not supplementing could mean that you end up with a folate deficiency instead & symptoms are similar

RockinHippy Sat 29-Oct-16 13:25:58

PS, I'm so glad your dd is better. Sounds like she was really poorly. I fear I was heading that way, every day I was that bit worse. It was frightening as hell.

Thank you.

Its weird, looking back I can now see a very clear timeline of her health getting worse, that coincides with things that I now know depletes B12. But symptoms are just so wide spread & yes its very scary, so I am glad you have a half decent doctor.

Our GP now sees what happened to DD after treatment, as "nothing short of miraculous" which it is really,

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