Hi - newbie here. I was diagnosed with PA over 15 years ago due to anti-parietal cell antibodies and atrophic gastritis. Due to other health conditions I didn’t pay much attention and became a vegan ten years ago. Most recently I’ve been getting methylcobalamin and folate injections every couple of months. A year ago my homocysteine level was 12 and I started looking for other tests that could indicate what was wrong. Last month my labs were
Homocysteine- 6.8
MMA - 352
Unbound B-12 (transcobalamin) - < 88 (it was 122 in August)
B-12 - > 2000 (The most recent shot was 10 days previous)
I believe, despite the elevated b12 result that this indicates a deficiency? My only potential symptom is muscle cramping in my feet on a nightly basis and memory problems... I do have Hashimoto’s as well. Can anyone advise me?
Thanks,
I believe, despite the
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Inquiringmind12
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I wrote a detailed reply on another forum thread with links to B12 books, b12 websites, UK B12 documents and other B12 info. There may be something useful in it for you. See link below.
I'm not at all sure what you mean by "Unbound B-12 (transcobalamin)"
Transcobalamin is one of the two proteins that bind to B12 in the blood. It's also known as 'Active' B12 or holotranscobalamin. The bottom of the normal range is normally between around 20 and 35 pmol/L - nice.org.uk/advice/mib40/re... - although some labs quote a grey area up to 75 pmol/L. But even that means your value of 88 is normal (assuming it is active B12 that was measured).
here is the test definition. We don't have a holoTC test in the US but I think this may be a different name for it? The range for this test is 650-1340 pg/mL
Vitamin B12 Binding Capacity, Unsaturated (Transcobalamin), binds and transports vitamin B12 in the circulation. Increased concentrations are associated with patients with myeloproliferative disorders. Decreased concentrations are seen in individuals with megaloblastic anemia or Transcobalamin deficiency.
the test is usually referred to as active B12 in the UK and HoloTC/HoloT in the US
The range you quote with the test is the range that would normally be associated with serum B12 rather than holoTC
To be honest, if you are getting injections as regularly as you are then tests for both active and serum B12 are going to be difficult to interpret.
It may be that the test you have had is actually looking at whether you have a factor that is stopping HoloTC working properly and inhibiting transfer to cells - which is what it sounds like from the description. As its low that would imply that you don't have that problem ... and the low result may be a result of the high levels of B12 in your serum from the B12 injections.
Suggest you speak to the doctor who ran the test ... or to the lab that carried out the test
The test mentioned measures how much free transcobalamin (TC) is in the blood, available to bind B12.
The very low level of unsaturated TC isn’t surprising because of the high levels of B12 in he blood. Just about every TC molecule has already had a B12 molecule attached. The TC is almost completely saturated.
Thanks Gambit62. My doctor is only interested in the Total B12 number and so I ordered the MMA test and unbound test myself in order to get a better understanding of what's going on. The problem therefore is that I have no one to interpret the results
Hi, so I agree with you that your MMA is pretty high for someone with as much B12 in your blood, and when I had a similar problem (although my MMA was not as high as yours), I took it to mean my body was not "using"the B12 well. I read "Understanding B12 Deficiency" by Dr. Greg Russell-Jones, and he talked a lot about co-factors like vitamin B-2 (among other things) being important to be able to use the B12. So I started taking lots of B-2 riboflavin (200 to 300 mg a day) and it seemed to help, my MMA did go down, and I felt better. I still take a lot every day, along with weekly injections of B12, and it seems if I skip the B2 for too many days I can tell a difference, so could be something to it?? Maybe not for everyone but seems to help me...
Yeah, I don't know that one thing has anything to do with the other. I could have some sort of B-2 issue that is unrelated, but whatever the reason, my MMA DID go down. And I have trialed the high dose riboflavin enough times to believe it does help me. Of course, I can't rule out the placebo effect, full of my hope to feel better.... It has been a year and a half now since I was diagnosed with PA, and it still impacts me greatly, and I have come a long way, but am still trying to figure out the exact combination of things on top of injections to try to feel somewhat "normal."
Thanks Teebeevee! I will order the book you suggested. I had my B2 tested back in June and it was 11.9 (range 6.2 - 39). It was in range but on the low end, so it looks like I have room to improve. Often I worry that I'm taking lots of supplements that don't get absorbed due to the gastritis...
My only potential symptom is muscle cramping in my feet on a nightly basis
A few possible causes for this - not a complete list by any means!
1) Low iron/ferritin - It isn't safe to supplement iron unless you've been tested and found your levels are too low for good health. Low iron is a very common cause of cramp and muscle problems. A helpful website about iron in food :
2) Low magnesium - As long as you have reasonably healthy kidneys to excrete excess magnesium you could just supplement this without a test. Only about 1% of the body's magnesium is in the bloodstream. Cells outside the bloodstream could be deficient in magnesium and you'd never know from a blood test. For good info on magnesium and the best type of supplements to try :
3) Low potassium - This can be tested. You can look for links to lists of potassium-rich foods. Potassium supplements are also available but caution is needed because potassium has effects on the heart when taken in in excess.
4) Low sodium - This tends to occur in people with a low salt diet. Sodium is usually tested together with potassium. You could drink some stock that contains generous levels of salt, or just drink quarter of a teaspoon of salt in water.
I have always thought this was a magnesium issue and have supplemented with magnesium but recently I've been taking large doses of magnesium glycinate, magnesium citrate and also magnesium l-threonate, with no impact on the cramps, which led me to believe it must be something else. My magnesium RBC was at the higher end of the range when it was tested last month (5.9 - range 4-6.4) but i had been supplementing and the test was not supposed to be done unless I'd refrained for 7 days.
My iron status is normal (155. range 45-160) and my TIBC is 42% (range 16-45%), but my ferritin has run low for almost 20 years. It is currently 15 (range 16-232), but for many years was as low as 5, both before and after i became a vegan. In fact it marginally improved post veganism. At one point I was given iron IV's, which did raise the ferritin level for awhile, but seemed to have little impact on how I felt. It has been 2 years since I had the last IV. I do have a poor track record with iron supplementation orally but started up again last week.
I do follow a whole food plant based salt, oil and sugar free diet and have done so for much of the last ten years. On blood tests, my blood sodium was low once but is generally normal and potassium has never been abnormal. However, I've increased the amount of exercise I do significantly in the past year. Someone else pointed out that it could be a sodium issue last week, and so for the last two weeks I've been taking an electrolyte supplement.
Your iron is very high in range - about 96% of the way through the range.
High iron with low ferritin is possible evidence of an MTHFR problem - your methylation cycle might not be working. I know zero about this problem other than it can be overcome in some people with the correct supplementation.
With high serum iron, taking iron supplements would be a big, big mistake, but knowing about iron-rich foods might be useful in the future. There is always a risk while you have a methylation problem that taking in more iron will raise your serum iron even higher than it already is while leaving your ferritin no better.
I've had mine checked about 5 times now and each time it has been considered as "raised" not "high" ; between 350-400 nmol/L. The laboratory range used being 0-280nmol/L.
My B12 level was originally found to be low at 196 ng/L (range: 197 -771 ng/L) in Feb 2016- and loading injections started, then put on 1 every 3 months. Four months later my B12 was at >2000 ng/L straight after injection given, dropping to 860 ng/L two months after that. After checking two months after my next injection, my B12 was still at >2000 although I was really unwell by then - this was the first time MMA was checked (Oct 2016) and found to be raised. At this point I was told I had functional B12 deficiency and I was put back on loading dose again (of twice a week) for 6 months. My serum B12 was never tested again.
Now some years later, I have been told that a genetic problem cannot be found in DNA, also that the raised MMA level might just be "my normal". That with a functional B12 deficiency, my MMA would be much, much higher.
There are other some other possible problems that you might want to be tested for:
I have also had low-range ferritin and folate and had to supplement these quite often. These are now at a fairly good level. I have osteoporosis of the spine so get Vitamin D supplements on the NHS- this will be rechecked by Dexascan in a couple of months.
These are all problems that seem fairly common if you have B12 deficiency. Issues that take a while to improve and stabilise. You might want to have these checked.
If you have Pernicious Anaemia, you can also have other autoimmune problems, psoriasis/vitiligo etc.
Also thyroid problems, especially Hashimoto's, which I know you have.
A homocysteine level of below 10 would be considered as ideal, 10-15 would be considered in the "grey area", and "high" anything over 15, as far as I can make out, and at this level would be considered mildly raised.
It sounds like you have a similar problem . I do have Hashimoto's and vitiligo. I also was recently diagnosed with chronic and reactivated Epstein Barr.
Unfortunately my MMA was not checked at the same time as my homocysteine last year, so I don't know if it's come down along with the homocysteine. It could be that the folate injections addressed the homocysteine value without addressing the MMA.
Is your analysis that one should supplement the B-12 with injections despite the high B-12 number? I do take Vitamin D as well.
my C-reactive protein is .5 so it is not elevated but i do have other inflamation markers in Collagen Type 1-c Telopeptide.
I can see that you have a lot to deal with. It is difficult to work out what is making you better or worse as everything happens quite slowly, don't you think ? With me, like fbirder , it is often friends and family that notice first !
Another problem is that there exists no marker for your "normal" - who ever tests normal people ? So usual MMA levels can only be guessed at. Haematologists once checked my MMA levels just before my B12 injection and then a couple of days later - MMA had gone up. This indicated to them that the likely reason was that I was B12 replete. My homocysteine was normal at 7.2.
Adult Inherited Metabolic Diseases checked my DNA for any reasons for functional B12 uptake issues but found none.
I do not have an analysis. I self-injected purely because the following was happening:
- The 6 loading doses did nothing for me- I couldn't even tell that I'd been injected or feel
any sensation when injected
- I got much much worse after the initial loading doses were finished and I was injected every 3 months - and it scared me stiff
- I was off sick (as totally unemployable) for 15 months
- I got better when back on loading doses of 2 per week and could finally actually feel my injections 3 months later. Friends, family, GP and nurses could see improvements
- These were reduced to 1 per month after I started deteriorating again at 6 months in
- I got worse
- Haematologists told my GP, in August 2017, that I should not be having more than 1
injection every 2 months
- Since I was due to return to work on a phased return the following month, and knew that I would deteriorate again at this frequency, I felt that I had little choice but to take
control of my own injections.
I started an injection regime on the premise that I could still get improvements with a loading dose, so continued until I felt remotely like me again. It took me over 2 years of self-injecting every other day.
I'm not the same, not cured. Not back to work in the same job or full time, but working !
And now injecting about twice a week. My GP monitors my ferritin and folate levels and gives me advice on whether anything needs supplementing and printouts of everything. I trust her. She has referred me to all the relevant consultants and sends detailed reports. I have been honest with her and with all the consultants. Most of them are more worried about my self injecting than they are about the original issues which drove me to it. Not my GP though.
This was my answer to my problem. None of us are the same or have the same symptoms or accompanying problems and issues. That is what makes this so difficult.
I wish I could find your answer too, but I can't. I can only say that the support I have had from the people on this forum has helped me immeasurably.
Don't lose hope. Keep copies of all blood and other test results as low-range can often get missed as an issue although it can lead to symptoms (eg: with ferritin). Record any symptoms and severity so that you can see if injections make any improvements and how long these last. Think MMA level would have to be higher to be considered by medical professionals as problematic, same with Homocysteine - so direction of travel more important here.
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