I posted some of this on a recent thread but decided to post it separately in case others interested.
I've been thinking a lot ( when my brain allows me to) about how some forum members report B12 deficiency symptoms with normal or above range serum B12 results.
Some report B12 deficiency symptoms with normal or above range Active B12 (holotranscobalamin).
I recently found an article from 2022 that suggested an association between functional B12 deficiency and functional B2 (riboflavin) deficiency.
Search for "B12 deficiency paradoxical Russell" to find it.
I mentioned functional B12 deficiency in one of my replies on this thread.
I've been digging online, trying to find reasons for my continuing need for B12 injections.
PA and coeliac tests were negative. Tests for functional B12 deficiency .... MMA, homocysteine and Active B12 were normal range...I was supplementing with B12 when these were done.
While I think it's still possible that I could have Antibody Negative PA, these days I suspect some rarer genetic/metabolic issue with processing B12 or co factors.
Macro B12
Also came across interesting articles about Macro B12 which I think is a possibility in my case.
Macro B12 is a complex of B12 binding proteins with immunoglobulins.
If macro B12 is present in blood then it's possible it could mask B12 deficiency.
Search online for "Macro B12" if interested.
I'm not a scientist or a health professional.
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Sleepybunny
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This is a curious question Sleepybunny. There are some symptoms that are similar such as fatigue, weakness, sores in mouth. B2 def manifests more visibly on the skin, I think. I've really not educated myself to much on B2. I will see what I can find.
BTW, you say you're not a medical professional not medically trained. Although this may be true...in my opinion you are far more "educated" in this area than most white coats!
That is very insightful. The "needs must," I had not considered it like that but it is so true. I was bedridden literally on my deathbed. The only thing I could do was read and that I did... I told my doctor which tests to run and that's how I was diagnosed. Then I never stopped reading as it's saved my life many times so far. The next time when I read if the increased cancer risk I told my doc I needed a cancer screening endoscopy and bingo they found that. It was early stage so they just excised it. But you're so right if I hadn't needed to must educate myself I would certainly be dead today. It wasn't until I was OK that I stumbled upon this forum.
I have definitely noticed a difference when I was not taking my b complex regularly as the b12's effectiveness was reduced. Whether it was any one of the vitamins I didn’t have enough of or more likely a combination.
The b12oils.com site research section is very informative on topics such as this. Not only do they present the info but they then list all the references so you can research further.
I have recently discovered that genetically I am compromised on the absorption of ALL B vitamins so I am now taking B2, B6 and B12.
I have also discovered that genetically I transport vitamins B and D and folate poorly from blood to cells so I need to supplement at far higher levels than would be the norm.
So whilst my blood levels are high my cellular uptake may be sub-optimal unless I dose at higher frequency which is what I am doing by derivation and trial and error which was only supported by post-treatment test results- I think that’s an accurate representation of what I have been told but I am still going through all the test results.
I take the approach that at my stage in life I have more to gain than to lose by focussing on the alleviation of symptoms regardless of how frequently or at what dose I need to supplement. I sense that in time, but unlikely in my lifetime, research will reveal a better understanding of the diverse ramifications of functional deficiencies and how to address them.
Meanwhile we only have two options I think - suffer under the medics or trail blaze our own treatment which is what I am doing
So in response to your question I would say based on my experience there definitely is a link between functional B12 and functional B2 deficiency.
Can I please ask how you have discovered that genetically you don’t absorb other vitamins well? If it was genetic testing, how would I go about obtaining these tests?
I did a DNA genetics test with LifecodeGX via a Functional Nutritionist I then chose to have additional reports after the methylation report such as Metabolics, nervous system and nutrition - I think that was all of them. It wasn’t cheap but it has been very worthwhile as we are now able to target specific supplement needs.
Thankyou Sleepybunny B for sharing this, you are a legend! This perhaps is the missing link to some horrid skin issues I had for around 3 years before getting diagnosed with PA/AAG. I believe I had Seborrheic Dermatitis on my face which has since cleared up. It wasn't a symptom of PA, but was for B2 deficiency.
I found the following quote from the following site:
"Riboflavin deficiency usually occurs with deficiencies of other B vitamins due to a diet low in vitamins or an absorption disorder." msdmanuals.com/home/disorde...
I am so happy I found this site and community. I will do further research when I can, I would also be interested in keeping this thread active or pinned somewhere as I believe you could have stumbled on something significand that I don't ever recall referenced. I would love others to share their findings.
Apologies if you've touched on this elsewhere and I've missed the post...keep in mind any gut issues especially infections such as h pylori or SIBO the bacteria gobble up B12 and iron. These infections can be "mild" enough to cause issues that you have learned to deal with (pop a pepto or TUMS) and yet are still stealthy enough to linger and cause anemia-related symptoms and this is apparently more common than not. Have you checked your reticulocyte and platelet counts? Repeated high retic and low platelet although within normal range albeit just barely can point to this as a possiblity via constant RBC turnover or bacteria steals B12/iron and your body has to rebuild RBC's over and over again - non technical since it is late here! Or you can provide a poop sample to doctor for evaluation of possible bad tummy bugs
Another B12 anemia culprit in the absence of obvious PA (intrinsic/parietal) is the much debated MTHFR component or methylation of B vitamins. Consider having yourself checked for an MTHFR issue. My result was 677tt which points to the need for supplemental riboflavin, interestingly, since this genotype is predisposed to hypertension along with other fun issues. Too early to tell if taking riboflavin is doing anything, rather, for now BP unchanged and 120/80 or lower, and hasn't gone up (or down). I think the only way to find out is to space out B12 injections and see what BP, heart rate, and symptoms occur while taking riboflavin. Trial and error as always.
hi , my b12 blood serum tests reveal a extremely high serum number. Before I was supplementing at all it was over 1,000 around 1500 plus. After years of showing signs of b12 deficiency damage I personally had a b12 binding capacity test done. My Transcobalamin was so low the lab barely picked it up. I highly recommend getting this test done. It costs me $35 and once I had it done my doctors totally stopped treating me like I was crazy. It proves you need it because Transcobalamin is a protein transport. With it being low you are permanently deficient
Thanks for posting your story. If you have time, maybe you could start a new forum thread with it as I think it would be of interest to many forum members.
Would the result of the test be affected if person was taking oral B12 supplements or having B12 injections?
I don't think the test you mention is one that NHS doctors often order, I'm in UK.
Does anyone know if the "B12 binding capacity test" is available in UK?
Happy to help, its also called a Transcobalamin test. I had to order mine from a private lab here in the US. None of my doctors even offered to do it. I don’t think many know much about b12 illness let alone other illnesses besides PA. Look online for labs that offer it. Its worth the out of pocket testing cost. Everything health related is super expensive in the US. But this was a $30 test that changed everything for me as far as care. I still am just self injecting according to my personal need and not relying on a doctors prescription.
Even if you have to travel to get tested, its so important to know whats behind the constant damage. Especially if your b12 blood serum runs high.
You gave to stop supplementing two weeks before the test. Thats all. So it is not too bad to prepare for the test.
I'm in the US. Which testing lab did you order from? Ulta doesn't have it available, Quest and Labcorp don't have this either. Since you're in the US are you SI with cyano?
I had similar issues. I was having major neuro issues( starting to be unable to walk well) but my B12 was in the 900s. If it wasn’t for a functional Dr who told me to start B15 injections I would have gotten so much worse.
Lots of places it can all go wrong. Also I shared an article recently that showed people with dementia, who had normal blood serum B12 levels, had non in their cerebralspinal fluid. So I wouldn't be surprised if it isn't getting somewhere it's needed, differently, in different individuals, due togene expression, or somesuch.
The complex Vitamin B12 absorbtion process in the digestive system.
Wow, that resesrch is mind boggling! A very clear mechanism to explain how serum levels of B12 can be high yet we can still experience major deficiency symptoms. Two comments:- firstly, I love the reference to the "current dogma" of serum testing (would love to quote that next time I politely refuse a B12 blood test!) and secondly, what hope do we have of gps ever recognising this metabolic condition, given their meagre understanding of vitamins??
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