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Pernicious Anaemia Society
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What is the TREATMENT for PA? Not just B12 but what type b12 and how often?

Hello all and thank you in advance for your thoughts and comments. I was diagnosed with PA 3 months ago. So CONFUSED on what the treatment should be. Is there a standard treatment to get the B12 back to a good range? My primary care doc did RX for one shot a week Methly. Sent me to a Hematologist who said I should have taken one shot a day for a week then one a week for four weeks then back to see him. He insists that Cyanocobalamin is fine to take. Nutritionist said NOT to take Cyanocobalamin. She was very strongly against it. The four weekly shots I have already taken where Methylcobalamin as recommended by my FMD and nutritionist. Had to have made from a pharmacy out of state and insurance does not pay for it. I will get my 23 and me results results interpreted on Wednesday and that may point me in the right direction. What is the best way to go? Maybe a mixture of B12s. Why is there so much confusion and lack of information? So thankful to find a place to vent my questions. I also have Hashimoto's. I am gluten free to help with that. Do any of you use diet to help PA.

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Hi Cwilli

I see you are new here so welcome.

From your comments in your post, are you in the US?

The reason I ask is that the 'standard' treatment for PA differs from country to country in respect of the type of B12 (cobalamin) used for injections, and the frequency of the initial loading doses and ongoing maintenance injections due to the different types of B12 used.

For example, in the UK (and some other countries such as New Zealand where I live), hydroxocobalamin is now the main type of B12 used for injections, although cyanocobalamin which used to be the main type is occasionally still used. Methylcobalamin is relatively rare although available on a limited basis (eg in a dried form requiring reconstitution with saline solution). In other countries, for example Germany and Australia, I understand that all three types are available in liquid form ready for injection.

I am no expert on the treatment of PA in the USA and may be wrong here, but I believe that the usual form used is cyanocobalamin with methylcobalamin available on a limited basis only and hydroxocobalamin rarely if ever available.

I am sure that the US experts on this site will correct me if I am wrong! There are a few of them here such as Galaxie, so I am hoping that they will appear soon once you confirm that you are in the US.

In the meantime, I suggest that you read the pinned posts in the column alongside this one as these give some good basis information about PA and other forms of B12 deficiency and their treatment, but note that some of the information is related to the UK medical system and treatment protocols rather than those of other countries such as the USA.

In addition, here are links to a few older posts and threads here on this forum on US treatment of PA which may help.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

These threads in turn have links to a few US sites with information on treatment but apparently the CDC site is no longer in existence.

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Deuto thank you for your quick response. Yes I live in the states. Yes I am new here and I am also new to this whole autoimmune stuff. Ugg. I am not complaining more like venting. With a high stress demanding job in school finance, a diagnosis of Hashimoto's in October and PA March 1, I feel like life is demanding more energy than I have to give. At first I was excited to have a diagnosis because I had felt bad for so long and the Dr.s kept telling me I was fine when I knew I was not fine. But now I still don't feel much better. Maybe it takes more time. After the PA diagnosis it took almost 3 weeks to find a pharmacy that could/would do the Methly b12 RX. Then I was taking them once a week but guess I should have one a day for a week? So far have had a total of four shots. And will do weekly for another 4 weeks. I guess that is the plan. Thanks again. It really is so helpful to have a place to bounce thoughts around with people who have been/ are where I am in this maze of what to do now.

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Hello! I am in the states and get my daily shots of methylb12 delivered to Alaska from Lee Silsby Pharmacy in Ohio. We discovered very early on that I do not metabolize cyanocobolmin correctly, to say the least! Anyway...I did not feel really good until I had been on daily 5000mcg shots for six weeks!! We worked me up from 1000 over a period of months because at lower doses I had some relief, but still had days I could not function. I'm lucky to have a great practitioner who was willing to prescribe it. We've discovered I also have functional b12 deficiency and a gene defect and my PA went undiagnosed for over 5 years so I require a lot, but a lot is doing the job! I'm only about 9 weeks in to these shots and am doing better than I would have dreamed possible last year at this time. I blew up 10 balloons in a row yesterday!! Lol But seriously that's amazing!! Sept of 2016 I had to sit down every 30 feet and could not work in the kitchen for more than a 10 minute stretch. Now I can walk a mile and work for 2+ hours without a break! Stamina is a problem but every day a little more strength returns. I have not had a totally non-functional day since mid-April. Best of luck to you!!

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Thank you for your reply- just saw it today. Wow that is a high does. What does you lab test look like? Does it show B122 high? Tight on time right now but would love to chat more later.

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Here in the US, cyanocobalamin is what is usually prescribed. I myself just don't like the idea of there being cyanide with the b12, so I decided to use methylcobalamin and have it compounded at a local pharmacy. You can also get hydroxocobalamin, but most pharmacies don't have it on hand but can send away for it, or you can order it online from a pharmacy that carries it. I have no idea what insurance covers though, as I pay for mine out of pocket. If you don't want to stick with the methyl, I would go for the hydroxo over the cyano myself.

I think which one you use doesn't usually matter, though there are some people that have a better response to one over the other, as well as some may have a negative response to one but not another. If you feel the methyl is helping, I think it's up to you(and your dr.) if you want to stick with it. Or if you want insurance to cover the costs, see if it covers the hydroxo and switch to that, that is if you can convince your doc to write you a scrip for it. The cyano may be perfectly fine, but I just haven't wanted to try it.

Your hematologist is correct about the treatment protocol, though ongoing frequency of injections may also depend on what your current symptoms are and your response to the frequency of injections. Such as, if your symptoms are returning before you are due for your next injection then you may need the time between injections shortened.

If you truly have PA, it means that you are lacking in the ability to absorb b12 normally through the normal digestive process, so that means that b12 injections are necessary to bypass the digestive process and get it directly to the blood. Changes in diet to include more foods high in b12, aren't likely to be too helpful because of the absorption issue, though it's possible it could help some.

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Cwilli and jbun

I've been on cyanocobamalin 1000mcg B12 injections every month for 45 years and I'm still "clivealive" at 75.

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Love it Clivealive!! So were you diagnosed with PA 45 years ago? I am wondering about life quality. Will I ever feel more like my "before I was sick self"? Thanks again!!

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Yes Cwilli I was diagnosed in 1972 which was 13 years after I'd had two thirds of my stomach removed due to a perforated peptic ulcer at the age of 17 in 1959.

At the time of my diagnosis I was offered the choice of eating raw liver three times a day or the cyanocobamalin 1000mcg B12 injections every four weeks for the rest of my life. I chose the cyano.... :)

When hydroxocobamalin came on the scene some 15 years later I found I could not cope with the three monthly injections so remained on the cyano.

Because of a return of some neurological symptoms in the run up to my next injection I now have them every three weeks.

I believe that cyanocobamalin is the "injection of choice" in the U.S.A.

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Oh boy so good to meet someone who couldn't take hydroxocobamalin and has taken cyanocobamalin for 45 years. I'm in the same boat having a reaction to Hydro 27 years ago. My only problem now though is that the Cyanocobalamin isn't working like it used to and my doctor won't let me try Hydroxocobamalin again to see if it has changed. I've lots of side effects at the moment and don't know where to turn. I get my injection every 3 weeks but my levels are 330 which is very low for ME. I don't feel the injections do any good anymore. It certainly doesn't give me energy like it used to. My body tells me when I need my next injection not my diary or calendar. I live in Ireland.

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Hi Bengie

I also use a Methylcobamalin B12 spray every day - you could try that to give you a "boost". It costs around £12 in the UK and can be got online.

Do you know what your iron and folate levels are? These work with 12 to make red blood cells.

I bid you goodnight and wish you well

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I asked my doctor on Tues about B12 spray but she wasn't in favour. I don't think it is available in Ireland. I don't like buying medication online as it can be stopped at customs coming into the country and you can't be sure what's in it either I guess? Thank you for replying and I'm off to bed now for a deep 10 hour sleep to be exhausted in the morning!! lol!

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Thank you Jbun. I feel the same way about cyanocobalamin, I just would rather not as I have read some negative things about it although if that were my only choice I would certainly do it. With continued low B12 despite 3 months of supplements (it was even lower after supplementing) March 1st I tested positive for both intrinsic factor blocking antibodies and parietal cell screen so unless there could be other reasons for this result I guess I have PA. I mentioned diet because going gluten and dairy free has really brought my Hashimoto's antibodies numbers down almost in half. I wondered if diet would also have an effect on PA in the same way it does Hashi.

Thanks again I really appreciate your response.

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Cyanocobalamin should be fine. It is converted to the two active forms by the vast majority of people - ncbi.nlm.nih.gov/pubmed/258... it is cheaper than methylcobalamin, easier to obtain and is more stable.

Yes, it does produce cyanide when converted, but teeny-tiny amounts. The amount of cyanide from one injection of cyanocobalamin is about the same as you'd get from 10ml of prune juice.

When you get your 23andMe results and you check them for mutations in MTHFR, don't let your nutritionist panic you into taking methylcobalamin just because you have a mutation. Over 99% of people will have at least one mutation in that gene. The only mutation that has shown any indication of causing problems is being homozygous (two copies) for C677>T. If you do happen to have this mutation then it can be sorted by supplementing with methylfolate.

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Thank you Fbirder. Good information to have.

I already know I am compound heterozygous 1 C677T variant and 1 A1298C variant. When I eventually found a really great Doc that tested me for Hashi even through my thyroid numbers were within normal range (she was right may thyroid antibodies were high) she also tested me for MTHFR as I was low in B12. But like I said I had the 23 and me test done because my nutritionist said it could give us more clues as to best course of action for me. Which I hope is true. I would really love to feel better. Thanks again.

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My doctor has indicated to avoid cyanocobalamin at ALL costs. He said any amount of cyanide is not good for the human body, especially when taking directly in a capsule or tablet form. There's a reason it's so much cheaper and one of the least effective types of B12.

I am homozygous for the A1298c mutation and have a lot of health issues from it. The only B12 that crosses that important blood/brain barrier for this problem is methyl B12, which MUST be taken with methylfolate in order to have the body absorb it into the muscles, nerves and tissues. Yes, the other types of B12 are cheaper ~ for a reason. And are completely non-effective for most health problems...so why would you put cyanide in your body to save a few bucks when it's not going to help you feel better?

Best of luck!

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Thanks for your input Simplicity17. I appreciate the response. I too am A1298c. I am glad you brought up methlfolate. How do I know if I am low in folate? Would it be on my lab results? Or do you have to ask for it specifically?

Thanks again!

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Most regular physicians are ignorant of the MTHFR genetic defect...sorry, sad but probably true. You have to seek out a Naturopath or someone knowledgeable who can request this genetic test. I was horribly misdiagnosed with and treated for MS for years, when what I really had was this genetic 'defect'. The two conditions are SO similar it's frightening, but doctors don't know to look for this issue. You think (haha) it would have dawned on one of them that something was wrong when my B12 levels came back >2,000!!! (Normal range is 250-450). The regular B12 was just sitting accumulating in my blood, and never getting absorbed into my muscles, nerves, etc., because I had no folate to activate it! My body started shutting down because I was severely deficient in both B12 AND folate. I can't imagine how many people really have THIS issue, and not what they're been misdiagnosed with. Sad.

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Does your doctor also advise you not to eat apples? Or prunes? Or apricots? Or almonds? Or any of the thousands of other foods that contain or produce minuscule amounts of cyanide?

Do they advise you not to travel by road, where you will be breathing in cyanide from petrol engines?

Of course not, because that would make them look silly.

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As your response makes you look silly. She has no issue with naturally occurring forms of unavoidable 'cyanide', but chemically added forms that are indeterminable in quantity/quality, that we intentionally put into our bodies that should be avoided.

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But drinking prune juice is an avoidable source of cyanide. And one 50 ml glass of prune juice will give you more cyanide than several cyanocobalamin jabs.

Or, if you're not in the habit of drinking prune juice, what about apples. You know, them healthy things that keep the doctor away?

Apple seeds contain a compound called amygdalin which, like cyanocobalamin, contains a cyanide group. One apple seed contains about 5 mg of amygdalin, which produces 0.06 mg of cyanide.

1000 ug of cyanocobalamin produces 0.02 mg of cyanide. That's one-third the amount in just a single apple seed!

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Thank you Fbirder. The more information I can gather the better. Have to consider all options. I am glad you have found what works for you.

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In addition, the fact that you have this defect means you will ALWAYS have a folate issue. There is no need to have a particular test to check your levels. It is something (just like a diabetic takes insulin) that you have to address every day of your life. And you will NEVER get a sufficient amount through food alone ~ only a methylfolate supplement will put a dent in the matter. And importantly...titrate, titrate, titrate when first starting out!!!

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Of course, an easy way to test to see if your body is making enough methyltetrahydrofolate is to get tested for homocysteine levels. This is converted into methionine in a mechanism that uses mehtyltetrahydrofolate as a methyl donor.

If you really do have a significant problem with MTHFR then your levels of homocysteine will be raised.

That's why a real doctor will test for hCys, because, unlike a fake doctor, they do understand biochemistry.

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You have to admit that a physician testing for homocysteine levels is not a common place procedure, like checking for cholesterol or blood sugar levels. One doesn't even think to ask what their homocysteine is unless they become aware of a medical condition that necessitates it. More importantly, high homocysteine levels do not indicate that it is solely a folate problem, as elevated levels have also been linked to cardiovascular disease, osteoporosis, and certain types of cancer.

Obviously my homozygous MTHFR is a significant problem for me, as my HL is now 10.9, on a reference range of 0 - 17.50, (down from 13.8).

The truth of this matter is that my Neurologist (a 'real' doctor) was completely ignorant of the MTHFR condition, didn't know to look for it, and treated me for YEARS for MS, when what was causing my health condition was a severe B12/folate deficiency ~ which looks very similar to MS, right down to the brain lesions. Apparently a 'real' doctor didn't understand biochemistry THAT well.

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Cwilli ~ just curious. Did you get peripheral neuropathy or weak leg muscles from the deficiency? Those are the primary issues I'm trying to overcome.

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Hi Simplicity17. No not really however I am just kinda weak all over. Tired. Can't walk as far or as fast as I used to. And need more rest time. I am finding that exercise is very important with autoimmune. Even if you don't feel like it, even if it is only a little bit - our bodies need to move. And every little bit counts. Also just as important not to over do.

I do hope your symptoms get better. How long have you had PA? How long have you been getting B12 injections? Have you had other things tested; iron, D, so on. They all work hand in hand.

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Cwilli... Sorry, I have PN - peripheral neuropathy, and megaloblastic anemia due to the folate deficiency (from the MTHFR). I do not get B12 injections, as it is not the correct type of B12. I'm prescribed high dose sublingual methyl B12, as that is the ONLY kind that will work for this problem. Regularly get tested for other vitamin/mineral levels, but fortunately have no issues with anything else (including blood sugar and cholesterol, thank goodness).

Sincerely hope your weakness and fatigue improve.

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