Husband dx PA about 6 years ago. Had injections weekly until B12 was in normal range than monthly injections. About 4 years ago due to insurance Dr had him switch to 1000 methyl chewable daily no more shots. B12 tested Annually and b12 blood test have shown normal levels while on orals. Husband has very weak legs and hands not functioning 100 percent since May, twitches since last October.
At our insistence Dr has just ordered an mma test, but now I’m wondering if that is necessary since Dr already knows he has PA. Dr just refusing to go back to shots bc blood test are within normal range so he feels sublingual doing there job and no b12 issue.
Any advise for mma or next step to confirm or rule out functional deficiency?? Is mma correct test at this point?
Also he never stops the sublingual before blood work (would that affect the annual blood results?)
TIA
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StRaphael
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Hi, really sorry your hubby is being treated so badly. As many other members will.no doubt explain in greater detail, those with PA need injections as they're usually unable to absorb tablets.The MMA test could be useful if it returns high & be counted as evidence in the fact that it can raise if inadequate b12 . On other hand it can return normal but yr hubby will still have a need for b12 injections!
I had considered normal b12 in serum in 200's, but Active b12 was low range, referred for MMA & that was very high so considered a functional deficiency.
During covid I swopped to sublinguals,but active b12 gradually lowered, I put a lot of diminishing health onto other conditions.
Earlier this yr, was very poorly again, neurobsymptoms back, plus exhausted, nauseous, vision issues, etc.
On testing b12 serum was 608, unsure of Active b12 as Dr had said he'd test, I started injections, lab refused to test,but I do know in November it was around 80, & mma last Autumn was still.in range. My mch was overange though.
So just goes to show, numbers really mean diddly squat if the symptoms are still there
it's those that need listening to.
I don't know how long it would've taken for my serum level to fit into the NHS box, maybe never, but I do know I wouldn't have wanted to feel any more ill than that. With tussles I've just managed to get injections back monthly, & still feeling rotten 8 months on, taking tabs alongside, in case they help. I just wanted to get maximum from NHS before I try other avenues of paying. Not done myself favours though!
That Dr is very wrong. I'd urge you to get those injections reinstated and ideally every other day until those symptoms improve.
Thank you for your help. I hope you start to feel better soon. So o guess first step to getting injections reinstated is to do mma (maybe it will come back high and his dr will help us!!) if not high we will have more difficulty getting him to prescribe injections again but I guess I’ll wait to cross that bridge if I have to depending on mma results. Ugh!
Just because the b12 shows up as normal in the blood serum test , does not mean that the B12 is getting into the cells . Hence the return of symptoms. Your doctor should know this fact . As your husband has a diagnosis of P.A. , this means that he should have B12 injections FOR LIFE . Injections are the most successful way of dealing with P.A.
If you cannot get re-instatement of B12 injections asap, I would seriously consider self-injecting . Neurological Symptoms can become irreversible if allowed to persist for too long .
You appear to be in the USA. ( reference to “ insurance” ) . You can easily and cheaply obtain Cynocobalamin injections from Canada where they are an “ over the counter “ item . Hydroxocobalamin ampoules can be obtained from one or two German. Online pharmacies which will deliver to USA . Give it some thought , if you have no success with your doctor . Best wishes .
Ty for your answer. Here in US insurance seems to affect Dr’s willingness (at least his Dr) he feels since blood test shows normal levels insurance won’t cover shots so won’t prescribe. We would prefer to self administer the shots rather than go to his office (much easier) we have asked him to just prescribe the medication we will pick up at pharmacy and do shots ourselves at home.. Nope. I will definitely order from Canada or Germany. We have no problem doing that - husband needs to see if b12 is in fact is what’s causing his issues I am hopeful it is, but no way of knowing unless we are able to try the shots again. It’s so frustrating it’s not like we are asking him to prescribe a narcotic or hard drug
I’m afraid your medical system is beyond my understanding. What if you asked for a therapeutic trial of injections? If he responds well to them, it could be a sign that the tablets are not sufficient (though to be honest, those symptoms already indicate that in my opinion!)
Just be aware that sometimes there is a few weeks of some symptoms worsening or new symptoms appearing when B12 injections are started. It doesn’t mean they’re not working, just that there’s probably a lot to fix!
I plan on ordering from Germany the 10 ampoules of the B12 Depot if the MMA doesn’t show deficiencies just bc I want to try so I can be sure his issues aren’t B12 related. If I order how often should he take an ampoule? He was taking a shot once a month after they got his levels up to normal range - then dr changed to no shot but 1000 mcg chewable daily 3 plus years ago. Ty
Yes-same size syringe, but different size needles .
For intramuscular injections a 25G x 1 inch ( 25mm) needle is appropriate — Self injections into the Vastus lateralis muscle where it comes nearest to the surface —. at the outside middle of the thigh ( look it up on google )
For subcutaneous injection Use a 30 G x 1/2 inch or less into the tummy fat 2inches away from the navel , or the fat.of the thigh .
You will find good information on the internet . Best wishes .
Dr perscribed only 1shot b12 every 3 weeks. this means I sleep all day with other symptons. That is the treatment in Canada. The blood test is only for b12 in the blood. When I tried to explain I needed the test for b12 in the cells, he called me antagonistic and walked out. I have had an operation removing my intestines and part of stomach plus my g'ma died in the 1800's from PA.
Hello again, I am able to order 100 1500 ampoules from Amazon of B12 Depot. I’m soooo happy. Can you please lmk if he takes shot 1x month or more? Dr currently has him on sublingual at 1000 day tablet. (Which Dr thinks is working bc B12 serum was at 600 - but he. Ever stopped taking them prior to testing) MMA was done yesterday so waiting on results. I see there is another test - a blood prick?? Do you know if this?
You cannot overdose on B12. So you don’t have to worry about that . So you can inject as often as you like to keep symptoms at bay.
You can test for homocysteine which would be a good indication of how well B12 supplementation is working . You can get a reasonably priced simple homocysteine test to do at home , by exploring “ Food for the Brain Homocysteine test “ £49.95 . I recommend it . Have used it myself .
Methylcobalamin is regarded as being superior to Cynocobalamin. It is very sensitive to light and temperature . Keep it dark and cool . Cynocobalamin is rarely prescribed in U.K. Hydroxocobalamin is the usual B12 prescribed for injection in U.K. as it supposedly stays in the system longer than Cyno .
I have tried both Hydroxocobalamin and Methylcobalamin,and found no difference . But many people find Methylcobalamin excellent for neuropathy . Methylcobalamin is the most expensive cobalamin .
So - use both types . The 1,000 mcg is the usual dose for both .
1st 1000mcg of cybo done. Praying hard it helps. I have 2 more viles of the cybo and 10 of the methyl coming Weds. plan on giving him one every 3 weeks. May do every other, but I’ll see how he’s doing. Thank you for your help.
While under treatment with sublinguals MMA is very unlikely to show b12 deficiency. You can try, but if it doesn't show it, you certainly don't have to believe the result.
The repeated testing of blood for B12 once PA has been diagnosed and treated simply leads to confusion. Maybe the MMA will help, as it's a test of function.
Good luck. There's always 'self injection' if you can organise it and face it.
I am also in the US and the protocol for B12 deficiency here is worse than in the UK. It calls for weekly loading injections for a month and then monthly injections after that. I went through a couple of doctors because I was still feeling poorly and insisted I needed more frequent injections. I am currently seeing a hematologist who has agreed to every other week indefinitely. I’ve tried to get him to agree to weekly to no avail.
So my point is, it’s a struggle here in the US as well. Doctors here also insist on testing levels periodically which is fine with me because it just shows how much my level falls between injections.
Also, my MMA was normal so I don’t consider that much of an indicator. I have not been diagnosed with PA as IF was negative and am not on any meds that would cause a deficiency. Also do not have any other autoimmune disorders. COVID wrecked my digestive system and I have been battling B12 deficiency for almost 3 years now.
I hope your husband advocates for himself, even if that means getting a 2nd, 3rd or 4th opinion.
They are clueless. I haven’t met one yet that knows how to properly treat it if neuro symptoms are present. My symptoms currently are muscle stiffness/tension in legs and sometimes arms, pulsatile tinnitus, chest discomfort, digestive issues, difficulty taking a deep breath, and excessive hair shedding. I am better than I was in the beginning when I first discovered my B12 deficiency. I had to ask for my level to be tested after researching my symptoms for almost a year after having COVID.
To answer your other question about dosage, it is a 1000 mcg injection of cyanocobalamin, which is the standard dose in the US.
You may have better luck with a functional medicine doctor. They know much more than the PCPs regarding vitamin deficiencies. Or a naturopath. Both are out of pocket though.
Sorry to hear about your symptoms and difficulties. Is the 1,000mcg monthly? the ampoules I’m ordering from Germany have 1,500 mcg. I was thinking doing that monthly.
I get an injection every other week. But most people get one monthly at that dose. If your husband’s level is really low, he may need more than one injection per month to get his level up to a maintenance level. You will need to go by his symptoms and how he feels. Everyone is different and some need injections more frequently than others to keep their symptoms at bay. This is not a one size fits all treatment.
Hopefully there's something here that'll be worth passing to your husband's doctors.
1) Pernicious Anaemia Society had a page for health professionals. Health professionals from across world can join PAS as healthcare affiliate members, no charge for them to join.
If you search online for "B12 deficiency Wolffenbuttel" you should find several articles he wrote, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
Some forum members resort to treating themselves, some get extra injections privately, some try high dose oral B12 but this does not work for some people (didn't for me) and some as a last resort turn to self injection (SI).
I believe it is possible to buy injectable B12 over the counter in some parts of Canada.
There are other forum members from USA so might be useful to search forum posts with term "USA" to find them and their stories. Click on "Posts" tab at top left of screen on computer.
I think EllaNore is in US.
Many on here also report folate, iron and vitamin D deficiencies. Has he had recent tests for these?
It's quite common for forum members here to have thyroid issues. Thyroid UK forum on HU is a good place to ask questions about thyroid. It's a very active and supportive forum.
Yes, I'm in the US in Iowa. Here in the United States we only have serum B12 tests I've had my doctor's search for me to try to do an active B12 test and they can't find a lab anywhere in the United States that does active b12. If anybody else knows of one I would love to know. But as far as I know my doctors can't do an active B12 test for me. For me, serum B12 tests are useless. And if your doctor knows that you have pernicious anemia he should know that you need injections you cannot take sublingual. That's so frustrating. You can get B12 from Germany and Canada and seeks inject, like a lot of us do. But if you're from the US you might want to consider getting it before there's any import tariffs enforced and bans on medications shipped from other countries to the United states. Because that's what they're talking about doing. I plan on ordering a lot of B12 myself I have a Year's worth right now, and I plan on getting another two or three years worth. Just in case we're not allowed to get it anymore. This is very serious issue and I'm pretty worried about it myself so if you're going to self-inject you might want to get enough to hold you over for 4 years.
Yes. I had an MMA test, a homocysteine test, and two ifab tests. And many others but those all pointed to autoimmune PA. Even then, I still had trouble having one doctor believe that I had PA and not just b12d. But after 3 years they believe me now. The MMA test which is methylmalonic acid will indicate whether or not you have a B12 deficiency. High MMA is usually indicative of B12 deficiency. It's a simple blood test. Same with the homocysteine. High levels indicate b12D. The homocysteine blood test I believe has to be refrigerated.
Having just looked up my MMA test and my homocysteine test they were normal. It was my symptoms my B12 levels and the two ifab tests that finally convinced them. Mostly I think it was my symptoms. I also had an stomach biopsy and was diagnosed through that as well. But it appears me MMA was normal.
To be honest it took a lot of tests and a lot of doctors to finally accept that I have PA and finally put it in my medical records as that. One doctor, who is not my normal doctor, said, I'll be honest with you I don't think you have PA. you have a B12 deficiency but I don't think you have PA. I was livid. 3 years of tests and she throws them out the window. Also hematologists they think I have too much B12 in my system and that I need to stop getting B12 injections. I just ignore them and I treat myself. I have other medical issues going on though too so I do see the doctors a lot but as far as my B12, I treat myself. The symptoms, i think were a major factor. I could not walk a straight line or turn left. My brain wouldn't allow me to go to the left. I had vertigo very badly. I still do as of last week. I was talking wrong. Still do. My sensory issues are not great. Sounds, lights, movements etc, drive me insane. I lose me balance in the dark, Etc. Also, my MCV and MPV tests and others helped to convince them. Anyway, i hope that helps. I'm heading to sleep. I'll check back in the morning.
I just looked up my MMA and my homocysteine and mine are not high. So it appears you can have b12D/PA even if they aren't high. I'm a little surprised to be honest.
This was my MMA
Aug 29, 2022, 10:18 AM
My reading: 0.14nmol/mL
Range: <=0.40 nmol/mL
My Homocysteine was 8.4 and the range was <15 so that was good too.
My b12 was 221
But those test do indicate a b12D, if high. But i have PA abs mine are not high. Not sure what that means except you can have b12d with normal tests.
What amount do you take currently in shots per week? Month? I’m going on our own and am getting the b12 depot from Germany. Out Dr here insist he stick with sublingual- no prescription so on our own.
I started off with once a month then I went to about every week and then I went to every other day and now I inject every day. Sometimes I go a day without. Here and there but for the majority I inject every day. Everybody's different and depending on your symptoms and how long you've had them you can try once a week and see how you feel. if that's not enough you can go more. I would base it on your symptoms. And if you have really bad neuropathy I found that injecting every day keeps my feet from hurting as bad as they used to. It doesn't take it away completely and they're going numb but if I don't inject at least every day or every other day my feet start to hurt again. We are all on our own. So we are here for each other
I buy the single dose ampoules that are 1ml or 1000mcg. I use a diabetic syringe. There are lots of videos on YouTube on how to self inject. There are links to some really great info and where to buy, etc pinned to this group. Lots of resources. Sleepy bunny, I think put it in her comment. Self injecting puts control back into your hands. It's a very good feeling.
Yes I am able to get 1000 ampoules from Canada, and sister is nurse. So you use 1000 mcg weekly? I’m just not sure where to begin in terms of quantity.
I inject one ampule every day. Everybody's different you could start off with once a week and see if you need more. Some people do every other day, some people do once a week, some people do every other week, it just depends on you and your symptoms. That's great that you can get that from your sister. And there are lots of videos online to help you. I just break the top of the ampule off and suck up the B12 and tap all the air bubbles to the top and then I injected either in my leg on the side of my thigh or in my belly or in my arm by my shoulder, where you would get a vaccine.
B12 stores are in the US, look online to find one. May be more costly until you can purchase from a cheaper source but it can get you started. Also some chiropractors offer them at their offices. After PA diagnosis, I ended up self treating due to the lack of knowledge. I was in a terrible state and I believe the info on this site helped saved my life. I bought Dr Chandy's book for my GP and Hematologist. The information and my obvious improvement caused them to open their eyes and I am now able to SI EOD by prescription. I am not where I want to be yet and may not ever get there but thankful I am better than I was at diagnosis. Suspect I had had it for 20+ years.
In case it helps, this is my list of acronyms and abbreviations:
helvella - Abbreviations, Acronyms, Latin
A document containing a list of many of the abbreviations, acronyms and Latin terms you are likely to find when reading documents about thyroid. Don't assume an old copy is up to date!
SI EOD=is self inject every other day. I still struggle to understand all the "lingo" and initials used. I was first diagnosed with Hashimoto's Hypothyroid disease years ago, that was a battle with doctors in and of itself. I had tiredness, ocular migraines, vertigo and a host of other things. Just past few years, my husband became disabled and I think the stress finally finished me off. I lost 60 pounds in 6 months, could hardly function, just wanted to sleep, couldn't eat, terrible stomach pain, couldn't sleep, extreme anxiety, crying, heart palpitations, loss of sensation and depression. Was sent to many different specialists and told to take antidepressants. Grrrrr!!!! I knew there was something wrong as I was always happy, busy and productive. Gastro doc finally diagnosed the PA and accompanying issues. Got better with initial treatment but once I was switched to tablets, I tanked again. That's when I bought my own B12 injections and self treated. We are each different and it truly is an individualized journey. But the advice on this site is very beneficial to get you started and get help along the way. There are very knowledgable people on here. I am caregiver for my husband so rarely get on.
I wish the best for you, this is not an easy journey.
I am in Texas. I inject 1000 MCG (1ML) I use Cyanocobalamin but got another at B12 store, I think it was Methylcobalamin. Some issues remain, probably due to the long delay in diagnosis but thankful for any improvement.
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I am hopeful it is, but no way of knowing unless we are able to try the shots again. It’s so frustrating it’s not like we are asking him to prescribe a narcotic or hard drug
MMA result 
MMA TEST ADVICE PLEASE
Missing MMA Result 
MMA Test - Worth Doing if on supplements? 
Confounded by two different results for MMA test. One negative, one positive 
