I almost feel badly posting this as I am in the US and I know these tests are not readily available or used very frequently in other countries. I wish they were. I read that they are a good indicator that the B12 is working as it should.
It took me a long time to start injecting hydroxycobalamin. I had had anaphylaxis to cyano years earlier and I was scared. I did not feel well with the initial (and small) injections I got from methylcobalamin. So I dragged my feet on treatment.
My MMA was 1.04. (the range is 0 - .4) My doctors were UPSET....they said I was at a very high risk of a stroke or a heart attack, especially because my homocysteine was 25 too.
I had bloods drawn this week. My homocysteine is still not quite in range (13...range up to 10) but down from 25.
ANYWAY....my MMA is .1 down from 1.04 with the low end of 0. Mission accomplished. I learned everything I needed to learn (and empower me to self-inject) here.
I still have symptoms (some, I fear, are irreversible because my deficiency went unnoticed and untreated for so long and the doctors don't care about these symtoms anyway) but they did care about the heart attack/stroke risk, so even they are impressed with the results I have achieved with less than 2 years of injections every 3 weeks. I am doing my best to educate all my doctors about B12 and paying more attention to it. No one even tested my MMA or homocysteine until I asked for it.
Thanks for listening. Finally, some good news! I needed to share with people who understand. Nobody else does.
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EiCa
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Thank you. Seems like a silly thing to be excited about but it has been such a long struggle to get here. AND...my doctors are getting educated (and impressed) in the mean time.
Thanks Nackapan. I have pretty severe spinal issues. I don't know if they have been de-myelinated. I have not seen a neurosurgeon yet but it seems that this pain has only gotten worse since I started.
Three cheers for you! 🥳🥳🥳 Very happy for your great success!
Funny what issues they latch onto isn't it?! Who cares about existing nerve problems and quality of life but hypothetical risk of heart attack is supremely important 🤨
Nice to hear from you Jade. Hope you are doing well. Isn't it funny (and tragic) how my doctors (and those of many here) care only about the numbers and not about my (crippling) symptoms. I am going to ask for a neurology consult as my symptoms are so bad and after two years, they show no sign of improving. It will likely come up with nothing new but maybe I can educate another doctor about B12 supplementing. (When I asked my PCP to order the MMA and homocysteine test, I had to tell her NOT to order the serum B12 test or she would have). My neighbor was just denied B12 shots because her serum B12 is 212..."come back when it's under 200."
Good to hear from you. If I am not mistaken you were on hiatus for a good while. I hope the hiatus was helpful.
Hi EiCa, yes I was away for a while. It wasn't my intention to be gone for so long, but I was in yet another one of my folic-acid-not-working periods. Then I get very antisocial and lethargic. I couldn't get out of the dip. Recently I randomly found a paper that talked about how high doses of folic acid can tie up folate receptors and prevent the converted form (methylfolate) from being transported to the CSF / brain " - so essentially a functional folate deficiency in the brain [hereditary folate malabsorption]. ncbi.nlm.nih.gov/books/NBK1... . Folinic acid is the preferred form with this condition, so I ordered some and WOW!! I have never felt this clear headed and energetic. I also have other issues like inability to absorb pills containing cellulose, and almost all folate-type supplements contain it. So I keep having these dips and disappearing for months at a time. Sorry I didn't intend for this to be a novel!!
So sorry to hear about your neighbor! The way B12 deficiency is treated is truly scandalous!! It just boggles my mind that they are so clueless about it, even after we inform them. None of this is hidden knowledge nor rocket science. :/
I agree with WiscGuy about considering more frequent injections. You're already on hydroxy right?
You might also consider increasing folate - how are levels? The high homocysteine is indicative of one or both being too low. Since MMA is ok, perhaps the problem is folate. I know that without proper folate, I get raging low b12 symptoms plus all the mental crap.
It is certainly nice to have you back, and exceptionally nice to know that you had some break-throughs and have seen the light at the end of the tunnel.
I, too, found I respond better to folinic acid. It wasn't llfe-changing but my folate levels are slowly inching their way up so with folinic acid and being mindful of folate food intake, I think I might continue to progress. I just do well supplementing so I have to be very cautious or I get big set-backs. I think I have a B6 problem. B6 makes me super-stimulated. I obviously have methylation problems and my genetics seem to explain at least some of it. High homocycsteine can be an indicator of low B6 as well. I react very poorly to B6. I am currently trying to get it through food too. My homocysteine has come down from 25 to 13, though, and 13 is considered normal in some ranges.
It's funny you mention cellulose. I have been looking at the fillers in various meds and supps I take and wondering if cellulose is a problem. It's hard to sort out as I have problems with so many things.
Just nice to hear you sounding so chipper. Hope you continue your ascent out of the folic acid abyss.
Great to hear folinic acid works for you too! I'm using the Seeking Health brand lozenges. The rest have cellulose. The liquid one didn't work either though i'm not sure why. I'd love to know of other brands if you know any.
Sorry hear of your B6 troubles. Thanks for the reminder that it also affects homocysteine.
I assume you've tried different forms such as P5P (if i remember correctly). I think there's also liquid B6. I wonder if B6 has any 'cofactors' that would help tolerate it.
Fillers definitely make a big difference. Lactose & mannitol are 2 others people tend to have trouble with.
Thank youfor the kinds words!
I wish you continued success and best wishes troubleshooting the remaining issues. Onwards & upwards
I use Seeking Health lozenges as well. I wish they didn’t have natural flavoring in them, but I have to choose the “least worst” when choosing supplements.
I tried a liquid folinic supp as well. For some reason it just felt like it wasn’t working. Holding the lozenge under my tongue may be more effective absorption for me than quickly swallowing the liquid.
Gonna give P-5-P another try. A few “crumbs at a time.”
Forgot to reply here! I second the 'least worst' approach. Needs, musts...
I can't understand why the liquid folinic didn't work for me either. I had it shipped over from the US, so perhaps it got too hot during transport, or something with the excipients? Who knows. I do know I've spent a fortune trying to find the right f.a. 🙄
Really good news ! Self injection is never an easy decision - but in your case a very brave one.
The tests -methylmalonic acid (MMA) and homocysteine - are both available from the NHS in the UK.
I have had six MMA tests in all: my MMA remained raised (not high, like your's) in spite of frequent B12 injections for three years, then finally dropped into range. My homocysteine was checked only once, as 7.2 and so was safely in range.
The first of the MMA tests was requested by my GP, suspecting functional B12 deficiency. It took her three applications to laboratories before she was successful, but got her diagnosis confirmed. Lucky that I had a GP who knew what to ask for. Renal problems already eliminated by blood test as cause, and later, haematology sent me for a SIBO breath test - another cause for B12 deficiency and raised MMA - and so an elimination required.
The next four were requested by haematologists. I think they also had the homocysteine test done. The final in-range MMA test was by DNA specialists in Adult Inherited Metabolic Diseases.
I think improvements are often possible long after the medical profession might expect to see them. It also took years for my folate, ferritin and osteoporosis to improve and stabilise. So just keep going with what is clearly working for you.
Bravo EiCa! In the US also and all of my diagnoses to including my stomach cancer are a result of AIG/PA I also had to ask my doctors to run these certain tests.
My MMA and Homocysteine were high and B12 extremely low and they completely reversed over a few months of injecting although some of my extreme symptoms it took a couple of years to resolve. It is hard to find doctors in the US that want to be educated and I went through 14 doctors my first year and now have a team of 5 doctors that absolutely listen to me now.
I was asked earlier this year if I would be interested in mentoring a Med student and of course I said yes. So for the past few months I've been terrorizing my med student from Texas A&M Medical School. Just kidding on the terrorizing part. But my main emphasis is for them to listen intently to their patients. Who knows by the very fact they asked me to do this...maybe there is hope.
Anyway, congrats to you for stepping up to the challenge as it is not an easy one.
That's wonderful EICA. So glad that you got that under control and that you took your health into your own hands and were able to ask for the test you needed and get the results that you've needed. Good job fixing yourself and helping yourself. It is a good feeling to know that you accomplish something and helped yourself. We've all suffered so much with doctors who don't know what they're doing, so self-care is so important. And you have had success in your efforts. That's amazing. Keep it up. 🤗👏👏👏
I am happy to hear that your blood levels have improved and lowered risk of stroke and heart attack. I have spinal cord degeneration with accompanying loss of proprioception, and I am sorry to hear that you too are experiencing symptoms of spinal cord degeneration.
I too am in the US. One of the big benefits I had early on was when sleepybunny posted a link to the Mayo Clinic Proceedings peer-reviewed journal article "The Many Faces of Cobalamin (Vitamin B12) Deficiency", which clearly stated that B12 deficiency patients with neurological symptoms should be receiving injections up to twice a week for up to two years, and some patients were unable to ever lower the dose frequency; other sources said patients with neurological symptoms should receive injections every other day; and a couple people on this forum said that controlling symptoms required daily, or even twice daily, injections. I started with daily injections for a week, then weekly for a month, and symptoms began returning, and then went to every other week and I felt awful, and pressed my doctor to return to daily injections, which he very reluctantly agreed to, although even though I sent him links to the Mayo Clinic Proceedings article (I go to a Mayo facility in Wisconsin), he never understood the neurological, vs hematologic, doses, and even after two years he was still expressing concern over B12 toxicity. (He recently tried to buffalo me into reducing B12 frequency due to his mistaken notions of B12 toxicity and I am changing doctors. Even after all this time, and all my explanations of why it is a waste of money to order serum B12 tests, he ordered one, along with the folate test I requested, even though when I was requesting the folate test I explained once again why serum B12 was a waste of money - and of course he expected me/my insurance to pay for it.)
The reason I am rehashing all this is I am wondering whether you ever considered more frequent injections of B12 in treatment of neurological symptoms of B12 deficiency .
I'm a new member here and I live in US, too. I haven't been able to get any of my drs to check my mma only homocysteine and saying I needed thyroid medication. I declined.
I've tried all sorts of diets and supplements and things got worse instead of better. Right now I'm managing symptoms myself because I haven't been able to find a doc who listens.
I was wondering where do get your hydroxycobalamin injections here in US?
Have you had your serum B12 tested?(Unless you have been supplementing and then that’s useless)
The measures that qualified me as a candidate for urgent B12 supps were homocysteine and MMA. I have never really studied up on other tests that would point to deficiency, but maybe others can chime in here and help. My red blood cells were fine. (Size and number) So was my intrinsic factor. Can you find a functional medicine doctor who would be more inclined to test other things and/or order hydroxy for you? I had to have a script but two different doctors wrote for a 30ml vial (1 mg/1 ml) from their preferred compounding pharmacy
I do not inject that often so I was wasting a lot, it was expensive, and I didn’t like the preservatives. So I started ordering from Germany and have used individual ampoules since.
I have heard Walmart sells B12 OTC I am not sure if it is cyano or hydroxy but everywhere in the US you will need a script. (Which is another reason I went overseas for it)
Hope this helps. If you need more help, I’m pretty much here!
I did measure the b12 levels for years... first they were below 300 then when the NP told me to supplement they rose above 1500, and she kept saying to continue supplementing but it did not made me feel good so I stopped taking it. Last time I took an adenosylcobalamin lozenge was two months ago.
The platelet number fell in 100k last time I checked and the size of the RBC was big which meant PA or something similar and homocysteine was elevated but they didn't do MMA or intrinsic factor labs. And these were functional drs...
Can you please share where do you order from Germany? I'd like to see if hydroxycobalamin makes a difference for me too.
When I did a Genova minerals and vitamins testing three years ago the folate was extremely low and b12 low. I've supplemented with both on and off but haven't had much success. Once the dr gave me a cyanocobalamin shot and it worked for one time, the other two times it was awful. So I stopped despite the NPs insistence. (you'll feel worse before you start feeling better, she told me!)
I am thinking that a moderator or someone here frequently has a handy list of vendors for purchasing ampoules overseas. I have used one pharmacy in particular but they haven’t had any since I last ordered in Oct. 2022. I am picky though. I prefer the PanPharma B12 depot (hydroxy) but availability has been impossible and now intermittent. I think production of it may be picking up. That said, I only order in mid-late fall to avoid any extreme temps as it takes up to 3 weeks from the date I order to receive it.
Hevert hydroxycobalamin is 1mg/2ml serum. I have some for backup but I prefer not to inject more serum than I have to.
Pascoe seems to be more available too. It is stronger. 1.5mg/ml. So you could try either of these options if you can get them.
Ordering overseas can feel overwhelming at first. I translate the website and go from there.
If anyone has an easily available list of vendors for Sunshine, can you please post them? Meanwhile I will look up and post the name of the pharmacy I have used successfully in the past. I never get it quite right! (If I navigate away from a post in the middle of it I always lose it)
Hopefully answers coming soon. I feel fairly confident you will be able to get Hevert hydroxy. I got it back in Jan. on Amazon.de.
Wedgewood and I keep a list though i'm sure others do too. I will PM it to Sunshine, easier for me to copy/paste a URL than all the various vendors and details
And EiCa please do post your source here if you don't mind, I like to keep the list up to date
I think apotheke-marienbrunn.de is likely on your list but if not, here you go.
Could you possible send me a copy of your list. I have tried to capture sources over the years but I have not done a very good job of keeping a neat and tidy list that is easily accessible and my ordering time will be coming up soon.
Thank you so much, Jade. I promise to put it somewhere accessible (and hopefully I will remember where that accessible place is when/if I need it) I find it pretty promising that my pharmacy has what I like to use in stock now. They haven't since Nov. 2022.
This is where I have successfully gotten the Pan Pharma hydroxy depot for the past two years. It was $40 for shipping but you can order a lot for the same shipping cost. Last time it was $10 US for 10 ampoules.
I just checked. It is showing Pan Pharma available right now! I wish I felt comfortable ordering in my his hot weather. Hopefully this is a good sign of steady availability. (Now $10.90 ampoule at the site I listed above. )
That's awesome EiCa!! And, you are a positive ambassador for ALL of us with your testimony to your doctors who are being forced to see and acknowledge the real benefit of more frequent B12 injections
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Can a needle be used twice in quick succession?!
Further frustrations with NHS
too late to prove b12 deficiency?!
