Just wondering if anyone can offer any insight. Apologies for the long story-
I got diagnosed with a B12 deficiency 2 years ago , with a blood result of 152. I was also Anemic. I was suffering from bowel issues, exhaustion, brain fog, muscle twitches, joint pain, burning stomach and a whole lot more. All of the symptoms seemed to creep up on me and before I knew it I felt really unwell.
I had a whole barrage of bloods done testing me for rheumatoid arthritis, lupus etc. Everything was normal except my b12 level and a high normal rheumatoid factor- which was 19 , and my R bc was low.
They gave me the initial dose of 5 startup injections which yielded in little relief.. and a prescription for iron.
After a couple of months the only symptom that went away was the exhaustion, so I suppose the iron did its job.
So after doing some research and reading a lot of posts on the old PAS forum, I started self injecting hydroxocobalamin sub cut every other day. Very slowly I started to feel like my old self again. Some symptoms have never gone away, I still twitch and suffer zapping pains and have chronic ongoing bowel problems (for which I have been referred to a gi)
I self injected like this until I fell pregnant 5 months later. Not knowing how it would affect pregnancy , I went down to one injection a month.
Fast forward a year and because I breastfed I was still Injecting once a month.
In April I started getting severe nerve zaps and the muscle twitches increased ten fold. I also started to feel extremely anxious and was getting pains radiating in my muscles and intense pains in random places. For example one night my little toe started to hurt REALLY bad. So much so, I grabbed my foot until it mysteriously just went away seconds later. So back to the doctors I went for more blood tests.
He has referred me to a rheumatologist now and did a load of bloods-
I thought my B12 was going to be low given all the symptoms- but it was actually over 2000! I had a Microcytic anemia, and my folate acid level was 2
I have been on folic acid for 3 months now and iron twice a day but the last couple of weeks I have started to notice I feel worse. My hands and feet are tingling and going numb in my sleep. I have stiff legs when I wake up or if I have been sat down to long. I literally waddle for a few seconds before everything warms up and I can move normal again. I'm also getting pain in the bottoms of my feet and it hurts to walk sometimes. I
have the doctors this fri am for repeat bloods to make sure everything has corrected itself.
Last time I was there though, the Dr made a comment that I wouldn't need a B12 injection for 2 years given the amount in my blood.
After doing some research I have come across an article on Wikipedia which says that if folic acid is given before b12 it will turn any remaing b12 at cellular level into (can't remember what it is called) but basically rendering the remaining b12 useless.
Also from what I have read the b12 level in my blood might also be useless , as it didn't have the folic acid to complete the chemical chain?
So basically Im asking could I be B12 deficient again, even though I have a blood reading of over 2000.
Sorry for the ramblings, and if you have gotten this far- thanks for reading : )
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Helpme123
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Your body needs both folate and B12 and if you don't have enough folate then your body isn't going to be able to use the B12 that it has.
You will have used a lot of B12 whilst you were pregnant and breast feeding because you will have been passing B12 to the baby to support their growth.
There is a thing called 'functional B12 deficiency' which occurs when your body responds to high level of B12 in serum by producing antibodies to TC11 - the mechanism your body uses to transfer B12 to the cellular level.
These are links to some articles/abstracts on articles on the subject
you may want to look up the references in the second article which is actually arguing that high levels of B12 should be investigated but it does give quite a good critic of functional B12 deficiency - think the most relevant references are 64 and 65. One is to a study in denmark that showed that about 30% of those being treated for B12 deficiency showed the autoimmune response mentioned above.
Not having folate will have meant that your body wasn't able to use the B12 that it had and your folate did get very low. It may be that your body has either used up the available B12 now that the folate levels have recovered, or that it has used up B12 that it had and is low again.
totally disagree with your doctor on not needing shots because your B12 serum was above 2000 at the moment. The serum test is not an accurate guide to what is happening. It doesn't tell you how much of the active form of B12 there is in your blood ... and it also says absolutely nothing about what is going on at the cell level. You have an absorption problem and as the recycling mechanism for B12 relies up on the liver releasing B12 in bile through the ileum to be reabsorbed you will also be unable to recycle any B12 so it will just pass through the gut and be wee-ed away by the kidneys. Leaving you without B12 for two years will mean that you will definitely become B12 deficient with all the neurological risks that entailed. They need to treat you for both the B12 absorption and for any folate problems.
You might also want to look into MTHFR - a genetic 'defect' that means your body isn't able to process unmethylated forms of B9 (folate) and B12 into methylated forms.
The pains in your feet could be alleviated by using an arch support.
I got some new trainers yesterday - this afternoon I went out in them for a run and butterfly hunt and although I love them I obviously need to do something about arch support in them as I got back in so much pain - outside of the ball of foot - and something that I haven't had for ages - since I started wearing arch supports about 15 years ago ... though I haven't needed them for the last year since I got my B12 levels right, but obviously these trainers just don't have even the small amount of support I have had in my previous trainers and it was such a relieve to get back into my sandals which do have a tiny bit of arch support .... anyway, called in at the chemists and got some orthotic supports which should correct the problem. Will see tomorrow.
Just thought I'd mention it as sometimes its good to have fall backs whilst you are trying to get your B12 levels right
its a long road isn't it? I thought I was on the home stretch, but earlier on my knee joint twinged and that was one of my first major joint issues going on 2 years ago..
I'm sure I'm not getting the B12 , despite my high readings and. I've somehow gotten deficient again : (
The thing that confuses me , is that I was still supplementing once a month.. Unless it is all to do with the folic acid deficiency...arrrggghhhh I don't know
But thank you for the links etc, I gotta be honest all the jargon confuses me : )
I think I'm going to start injecting every other day again and start taking a folic acid supplement. See if that makes any improvement and wait for my Rheims appointment : )
Hubby gets plantar first thing every morning- he stretches on steps now per physio - insoles help - not cheap ones tho'
as a child he had rollers to try to help the non-existent arch - no P.E. etc. (I told him he needs heels - strangely that didn't go down well?)
he refuses B12, Thyroid or any tests - "nothing wrong with him" (tada)(apart from rolling round floor in pain) luckily I've kept him off PPIs and he avoids bread etc. I do sneak in a bit of Cidre vinegre when necessary...
Yes I have some orthotics that I brought about 10 + years ago which did sterling service and were quite expensive at the time - not sure what they would be now - but they have lasted and are still perfectly serviceable though I don't really seem to need them now. The soft orthotics I brought certainly help with the trainers but haven't resolved the problem entirely.
I got them on recommendation of GP (who missed potential link to B12D but that seems to have been the story of the past 40+ years). I got up out of a chair one afternoon and the pain in my foot was so painful - I spent the rest of the day crawling around on my knees. My father had similar problems ... and my brother has similar problems ... didn't twig that it was probably B12 related until about a year or so after my diagnosis though.
Do I understand correctly that your 2000 B12 value was prior to the folate supplementation? It will be interesting to see what it is now. Are you restarting injections right away or waiting until your next blood test?
Hi Allyson yes that s correct I had all the results at the same time
B12- 2000+
Folic acid - 2
Also diagnosed as Anemic and prescribed iron tablets at same time...
My blood results at the time left my doc scratching his chin.
I was prescribed 3 months worth of folic acid 5mg and I continued with the monthly jabs. However this week after feeling worse with stiff legs, joint pains, tingling hands and feet, pain in my liver region?
I have started injecting every other day again. I'm on injection 4 now
I don't know if what im doing is right, but I'm sure my deficiency is rampant again. I haven't felt this bad in 2 years...
I'm wondering if my high serum b12 is due to it not being able to work properly because of the folate deficiency?
i.m Curious as to what the blood results are going to say as well, but also unsure of really what to do next? As I don't think my Dr has a good understanding of it.
Re. The folic acid issue, I was just looking for something else on reading list and came across this:
"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.
In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores.
Iron deficiency can be treated with oral ferrous sulphate (or suitable
alternative) 200mg three times daily with vitamin C supplementation."
B12 is involved in building DNA and the foetus takes the B12 it needs to survive and grow, but it it looks as though the pregnancy and breast feeding has left you severely depleted, to the point of having neurological symptoms, which need to be treated with more injections without delay.
It would seem that you could have an absorption problem as your folate and iron are also low. The high serum 12 blood tests would be meaningless as it would only measure B12 in the blood and not in the tissues.
There is an ongoing discussion on this forum about the effect of folic acid on neurological symptoms and, in your case, they do appear to be getting worse with folic acid supplementation so it may be a case of "trapping".
"In general, it has been concluded from anecdotal information that supplementation with folic acid at daily doses of less than 5 mg is rarely associated with a direct adverse effect on vitamin B12 deficiency associated neurological damage. Despite the beneficial anaemic effect of folic acid, pernicious anaemia should be treated with vitamin B12 and not with folic acid.
Indeed, Baldwin ends up his paper with the statement that folic acid had no place in multivitamin or "shotgun" anti anaemic preparations. Victor and Lear state that "prescribing oral multivitamin preparations for patients with anaemia cannot be too strongly condemned."
"Comment by Authors :
"The studies cited above demonstrate that treatment of vitamin B12 deficiency subjects with folic acid is a false and dangerous therapy, as it does not prevent the neurological damage induced by vitamin B12 deficiency supplementation with folic acid at daily doses less than 5mg. However, it has been rarely associated with a direct adverse effect on vitamin B12 deficiency associated with vitamin B12 associated neurological damage.
Anyway, the best treatment for vitamin B12 deficiency subjects is supplementation with vitamin B12 and not additional folic acid."
"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood. "
I have just started my injections again, so I'm hoping for an improvement sooner rather than later.
One question, if the above statement is correct about folic acid building up in the blood.
If my blood levels are over 2000 would the Folic acid I've been taking 'use' that up or is it more likely that the B12 in my blood is the recycled version and the folic acid has also been building up in my blood to?
And if the latter is the case will this show up on my bloods as high folic acid levels?
Oh gosh - good questions but I don't have that expert knowledge, I'm afraid.
If this helps, this what the haematologist says in the B12def. site film based on the book by Sally Pacholok:
"The body needs ample B12 in order for folate to work and one of folate's crucial jobs is to synthesise the nucleotide 'building blocks' of DNA. When folate is trapped in an unusable form due to lack of B12, it can't do this job correctly".
"Folate can do its job only in the presence of B12, so if you're B12 deficient, much of the folate in your body is useless".
As mentioned above I have got ongoing GI issues so it could be a possibility that I'm not absorbing them
But I've also recently read that if you are injecting frequently that it draws heavily on your folic acid and iron ... Can anyone clarify if that's true?
Thanks all so much for your help, I feel a little less crazy : )
Re. absorption, this is one of the best descriptions I have read on the thyroid-brain-gut and B12 connection and, although he refers to Hashimoto's, it equally applies to PA/B12 deficiency:
"Hashimoto's Healing- Facebook post by Dr Marc Ryan
Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability. Many researchers believe that this is ground zero for autoimmune disease. It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.
Brush Border
The small intestines are the place where leaky gut often happens.
And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.
Where Absorption Happens
This is the place where absorption happens.
And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.). One of the reasons for this is the breakdown of these brush borders. Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed. The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients.
Brush Border Enzymes
Brush border enzymes amylase, cellulase and invertase can be effective in digesting carbohydrates, proteins, and fats without causing irritation and digestion of the intestinal walls. One problem with using large quantities of pancreatic enzymes (which are commonly found in digestive enzyme formulas) is that they may actually irritate and digest the intestinal walls. The theory about the reason for this is that they help break down proteins and your intestinal walls are made of proteins.
If you have leaky gut, which many of us do, these proteins are exposed.
And these digestive enzymes don't know which proteins to digest and which ones to not digest. They break down all of them.
If you are using digestive enzymes, you should be cautious about which kind you are using. Because, if you have leaky gut, you may actually make it worse by using the wrong kinds. Brush border enzymes don't do this.
They are safe, well tolerated and can be a good tool in healing these tiny little paintbrushes."
I forgot to say that my own GI issues have been hugely relieved by avoiding gluten, eating several spoonfuls of sauerkraut daily (better than any probiotic, if high h/pylori is the culprit) and taking Swedish Bitters for IBS.
The tingling and numbness etc sounds alot like neuropathy. My hand will also pop open when I'm carrying something. It seems to go along with B12 d. Your bowel symptoms and a few other things you mentioned go along with IGA Def. It's an antibody that is your immune system. It CAN come and go. I suffered all my life to the point of being called a hypochondriac. Finally at 61 yr they found it. Also look for frequent bladder infections..sinus infections even cancer. It is hereditary. Good luck
Yes it's a deficiency. Immunoglobin A Def is a genetic immunodeficiency. IGA is a type of antibody that protects against infections of the mucous membranes lining the mouth..airways and digestive track. I've also read in a few places that it has something to do with the body's natural resistance to cancer.
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