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.

27 Replies

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Deuto

a year ago

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...

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.

Cwilli

in reply to Deuto

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.

LadyThor

in reply to Cwilli

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!!

jbun

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.

fbirder

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.

Simplicity17

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!

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.

in reply to fbirder

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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