I got the MMA test done, with the following results:
Methylmalonic Acid148 nmol/L (range) 79 - 376 nmol/L
B121,902 pg/mL (range) 211 - 911 pg/mL
FOLATE>24.0 ng/mL>5.4 ng/mL (in case it matters)
I've been getting shots for more than 20 years and the b12 levels are now pretty normal for me. I'm now injecting once a week. Any comments appreciated.
Hi Linda730
Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise.
If they're not high then it means your cellular levels of B12 are OK.
High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
I wish you well.
Thanks, Clive
Hi Linda730.
Your MMA levels are within the limits of the reference range quoted so this means that your body has enough B12 at a cell level and that it is processing it properly. (Note: The figures Clivealive uses are in different units of measurement so can't be applied to your results).
Your serum B12 levels are over the top,of the reference range but this is what we would expect to see in someone who is injecting B12. So, nothing to worry about. (Mine are always over 2000 and we've seen them over double that).
You don't give the reference range for folate but at >24ng/mL, that looks to be high (probably over the top of whatever the measurable range was). Folate is very sensitive to intake so if you ate a lot of folate rich food,prior to testing, that may explain it. However, if you are supplementing with folic acid (or methylfolate), it suggests that you may be over-supplementing. Over-supplementing on a long-term basis can give rise to some unpleasant side-effects (from folic acid and more especially, methylfolate), so of your health is not the best, that could be one reason (look up the potential side effects on the Internet, if concerned).
Just wondering why you had the MMA test after 20 years on injections 🤔. Is there something you're particularly concerned about? Not feeling as well as you would like? 🤔
Thanks for the reply, Foggyme. I had been doing bi-weekly shots and was still feeling like symptoms were getting worse over time. I upped shots to once a week about 2 months ago. I never had the MMA test because no one ever mentioned it. I read about the test and I was curious if that could be one of my issues. My doctor, who is Irish, knew about the test and ordered it for me, but the nurse who called me didn't even know what the test was for until she researched it herself. There is such a lack of information about PA in the US; if we didn't request tests ourselves, nothing would happen.
I keep reading about all the different tests people have had when PA is first suspected. I had nothing but a blood test that I don't even know the results of. When I asked the neurologist any questions, he just referred me back to my GP, who didn't really know anything either. Because of that shaky start, I never had loading doses, I still don't know that I actually have PA or something else causing my problems, and I stopped getting shots for a few years because once a month shots did nothing to stop my symptoms, so I thought I must have something else.
I do think once a week shots is finally beginning to make some headway. I feel less foggy, with a little more energy, but of course I then go and over-do it and suffer for a few days. But I'm recovering faster, it seems.
Hi Linda 730. Ah ha, I see 😉. At one stage you were diagnosed with B12 deficiency, had shots, stopped them, eventually felt worse (presumably Because you became deficient again), and then re-started the injections...and are now trying to recover again. And never really knew what caused the B12 deficiency.
So, a couple of tips that might help:
1) many things can cause B12 deficiency. Dietary causes such as veganism can be responsible but the main cause is some kind of absorption problem (pernicious anaemia, Coeliac or Crohn’s disease, IBS, GI surgery, medications, heiobactor pylori (gastric bacteria), to name but a few.
2) It's not always possible to get to the bottom of the cause - the main thing is to get treatment (in the U.K., injections are the recommended treatment for all B12 deficiency caused by absorption issues).
3) If you want to check for Pernicious Anaemia, the test to ask for is anti-IF antibodies. However, 40%-60% of those with PA test negative for IF antibodies, so a negative test cannot rule out Pernicous Anaemia. It's possible to have something called antibody negative PA (AbNegPA). PA is more likely if a family member has it - or indeed, has any other autoimmune condition (these tend to run in families).
4) Those with absorption problems often have other deficiencies too, the main culprits being ferritin (a marker of iron deficiency anaemia), folate and vitamin D. Good idea to get these checked as deficiencies or low levels in these can produce similar symtpoms to B12 deficiency, make you feel quite ill, and also make it 'look' as if the B12 injections are not working.
5) Many here find that they have to inject very frequently to get and stay well, sometimes as much as every day. Very few can manage on the 'one-size-fits-all' prescribing regimes. If your symptoms return before your next injection, get better once you've had a jab, then return before the next jab is due, this is a sure indicator that you need more frequent injections. The frequency required for each individual differs, so it's a matter of working out what your body needs, then injecting frequently enough to stop the symptoms returning.
6) once you've become deficient - as you did again when you stopped the injections - it can take the body a while to recover again...and different symptoms recover at different rates. Neurogical symptoms, in particular, seem to take the most time and it's important to get enough B12 for neurological repair processes to take place (to avoid,potentially irreversible neurolgical damage).
7) it may be that when you originally thought your B12 injections were not working, this was because you were not getting enough B12 for the repair process to take place properly (i.e. enough B12 to keep you going, but not enough to repair properly. Perhaps more frequent injections at that stage might have made a difference.
8) A mistake many doctors make is in thinking that serum B12 leaves can be used to monitor the efficacy of treatment. This is not the case. Once treatment with B12 has commenced, serum B12 levels within the concept of the 'normal' reference range are meaningless. All that's being measured is how much B12 has been injected and how quickly it's being excreted by the kidneys. So...doctors should treat according to symptoms, not serum B12 levels.
9) Many cross-over symptoms between B12 deficiency and other conditions so, if symptoms persist or get worse (despite frequent injections), it's usual to investigate further to rule out other potential underlying medical conditions. Hypothyroidism often goes hand in had with B12 deficiency (test TSH, FT3, FT4 and the thyroid antibodies TPO and Tg, to exclude). Neurology referral for ongoing neurological symptoms, gastrology referal for gastric issues etc).
And yes...doctors are often not good here with all things PA or B12 deficiency...so goodness only,knows how you manage if the USA is worse!
Only touched briefly here on a few things that might be relevant to you. There's more information in the third and fourth PAS pinned posts (to the right of this page or at the bottom if using a phone). It's also information that you can share with your doctors 😉.
And please excuse me if the above is already familiar to you....it's always difficult to know how much people are aware of when they post here, so I usually err on the side of caution and say some words, just in case...😉😀
Good luck Linda730. Hope you begin to feel better soon and please post again if you need any further help or advice. Some really knowledgable folks here who are always willing to help.
👍
Thanks for the list, Foggyme. Even if I know most of the information, there are so many people who are helped by having everything laid out so nicely.
fyi, I was first diagnosed with MS in the early 1990s, but not supported by MRI lesions. After about 4 different neurologists, I went to the one who diagnosed the b12 deficiency, or more accurately, that I would need b12 shots for the rest of my life. Back then it was a lot easier finding out about MS than b12 issues. Most of what I've learned has been from my own research and groups like this one.
Did you know the PAS is the only support group for PA I've ever been able to find, other than the ones that now exist on FB?
Yes...the Pernicious Anaemia Society is quite unique...the only charity (or organisation, or anything - worldwide) that provides expert support for those with PA, drives research projects to improve the diagnosis and treatment of pernicious anaemia, and lobbies for change to current Ne-size-fits-all treatment protocols. So hurrah for that.
So...if I read you right, the MS was a misdiagnosis? Or do you have both?
👍
Misdiagnosis, but many overlapping symptoms, so they went for MS right away. It was over 5 years before the b12 shots diagnosis happened. In the meantime I ran the gamut of doctors/negative MRIs/a lot of conjecture that it was 'all in my head'. 🙄
Oh dear yes...I've been through a 'wrong' MS Diagnosis...and the 'all in the head' conjecture...and fibromyalgia, CFS, ME, anxiety, depression etc. over the years. Turned out to be PA and an underlying autoimmune condition...which was apparent if anyone had bothered to do anything about abnormal blood results...for many years.
So know how distressing this all can be. For you, and for many others who appear in this forum...and likely many other too 🙄.
Please you eventually found an answer and hope that things are improving since the B12 deficiency was finally diagnosed.
Good luck and take care 👍
Thank you for this post, interesting reading. My grandmother, born 1886, had PA so something I like to keep an eye on. She brought me up with tales of raw liver and frightened me! May be I moaned too much about travelling on two buses to go to the doctors with her in the school holidays!
Hi silverfox7 
I never heard of anyone else in my family with PA, but there is a prevalence of cancer on my mother's mother's side (non-specific) and Alzheimers on my father's mother's side. I wish people did more research into how PA influences other diseases.
Agree. I've recently been treated for breast cancer and I know of no one else in my family with any cancer but I'm finding it seems to go hand in hand with thyroid problems which I also have.
Have you found that doctors treat individual symptoms as if there is no relationship between them? And that PA/b12d has no relationship to any of them? That's been my experience way too often.
They certainly do Thyroid wise and as a shortage can affect every cell then symptoms are numerous. Patients can often be prescribed for various illnesses but one thyroid sorted properly then many 'disappear'.
Thyroid is a whole different issue. I am also taking thyroid for a deficiency that only shows in symptoms. In some ways, thyroid treatment is even more archaic than b12 treatment. The only thing I know for certain is that my body temp is more than 1 degree below normal, sometimes as much as 2 degrees low (F). My GPs have never considered it an issue.
All I really know is that I get tired of fighting all the time about things that seem so obvious to me.
Have you joined the HealthUnlocked Thyroid Group? I learned so much more after I did!
I'm not sure if I joined or just read a few posts.
I did a lot of reading before I picked up the courage to post or even reply to anyone but I learned such a lot by just doing that. They are a great bunch!
This post is quite old but I am wondering how you are doing and if weekly injections continued to help you
Oh my thank you so much for your reply!! I am in a place where I am trying so hard to find balance with all of this. I currently inject cyno weekly and that was working pretty good for a bit but now I feel like I am slowing sliding backwards. The past 2 weeks have been awful. Just dizzy and off balance and terrible pressure headachaches/weak sore muscles, short of breath. Most of this had completely gone away.
May I ask what form you inject? I am considering switching to hydro but I’m not sure if it is necessary.
Again, thank you so much
I'm glad to share I use cyano, which I get from Canada. It does sound like you need to inject more frequently, at least for now. Remember that any stress, good or bad, can increase symptoms and therefore we can assume your need for b12. It definitely won't hurt you. The biggest consideration is price, really. I've had to talk myself into more injections when needed, no matter the cost. I hope you can get stabilized again soon!!
Thyroid results - should I have MMA, homocysteine checked too?
Results MMA & Homocysteine
Correct MMA test??
