Hi I live in the united states and wanted to know what I should discuss with my doctor next week. I am getting B12 injections every 4 weeks I think it is the regular protocol here. However, after reading here and my recent symptoms ie migrain with aura and speech problem episode (one a month lasting 2 minutes). I am wondering about "loading" shots that some people here have at beginning of their diagnosis. I do feel that monthly shot is not enough.
If I cant get any resolution from my general practitioner, who is the specialist I should try to get to see. A neurologist has ordered an EEG (already had MRI) but I don't get to see a neurologist unless something abnormal from the EEG. Wonder whether I should see a hemologist ?
Also if I don't get any resolution, where in the US can I get B12 shots at home? Or do you think the B12 Sublingual is just as good. At the moment I am taking methycolabim, twice a day.
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Janeames
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Janeames, in order to answer properly can you tell us what caused your doctor to prescribe B12 injections in the first place? Are you diagnosed with PA? did your blood test show low serum B12? higher than normal MMA and or Homocysteine? did you have both Parietal Cell and Intrinsic Factor Antibody tests done?
If you have not had these done then my suggestion is that you consider it. Also please stop supplementing B12, Folate or Biotin for several weeks before taking these tests as B12 supplementation can interfere with results. But consult you doctor as I am certainly not one of those.
I am in the US and regarding protocol in the US there really is none. There are recommendation for loading doses through and that can be different depending on how B12 deficient you were. In some cases it can be every day, every other day, twice a week etc. for a few weeks and then typically it goes to monthly. I started out with cyanocobalamin, the most common cobalamin type prescribed in the US, twice a week for two weeks, then weekly for two months, then monthly for 6 months. My megaloblastic anemia resolved itself quickly but the nerves, neuropathy, balance issue, slurred speech etc. were not improving so well and then I read that Methylcobalamin was a better and more natural form of B12 so I consulted with my doctor and I now self-inject methyl B12 every 4 days. I do 4 days because it seems I can feel it when I need it. Since I started doing that my symptoms have significantly improved.
If you have been diagnosed with PA, did you have a upper GI endoscopy done with biopsies to also confirm diagnosis of Autoimmune Gastritis (AIG) and to screen for stomach cancer.
I had a weird pressure on left side of my head and a speech confusion spate and I could not read my cell phone (sentences didn't make sence) so I had a lot of blood tests, a cat scan and then a month later mri. The only results that were abnormal was a slight B12 deficiency and a slight high homocysteine level. That was why I was given monthly B12 shots - I believe this is Kaisers protocol. And it seems to me from reading here that I need closer "loading" shots. I think mine are cyancobalamin so like you I should be on methylcobalamin. However the sublingual B12 are methylcobalamin. I appreciate information on your experience with the doctor and can be armed next week when I see mine.
I do not know what Parietal Cell and Intrinsic Factor Antibody tests are? would you explain do these tests have abbreviations is PC and IFA or other so I can look for the.
I have not been diagnosed with PA, but will talk about this with my doctor. This is all good stuff. Thanks you.
I am in the US. The questions you ask are difficult to answer because, in my experience, little or nothing regarding treatment of B12 deficiency is generally true or generally untrue.
My initial advice to people with questions such as yours is to try to learn more about B12 deficiency, about diagnosis of B12 deficiency, and about treatment of B12 deficiency. Those things are extremely difficult to accomplish because there are few sources of such information. I suggest printing out the following article from a medical journal, Mayo Clinic Proceedings (US), aimed specifically at physicians:
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Click on "PDF" in the upper left corner to get the article in a format that is good for printing out.
As you read the article, keep in mind that this article is written by physician/researchers, and the purpose of the article is to inform physicians of general information regarding the nerve symptoms of B12 deficiency. So presumably, readers of the article (doctors) will have been trained in medicine. Patients are generally not trained in medicine, but information in the article can still be very helpful to patients, and over time, as patients continue to learn about B12 deficiency, and its symptoms, diagnosis, and treatment, more and more information in the article will be exposed to patients.
In the first column, notice the statement that for a very long time medical students have been taught that B12 deficiency symptoms are limited to blood symptoms (such as enlarged red blood cells), and have not been taught that B12 deficiency can produce nerve symptoms.
Also in the first column, notice that there are two populations of people with B12 deficiency: people who have blood symptoms (such as anemia); and people who have nerve symptoms (such as tingling or loss of sensation in the hands and feet) and neuropsychiatric symptoms (such as irritability, depression, and psychosis). Notice the statement that there is little overlap of symptoms between the two populations.
Read through the six brief patient profiles. These profiles are intended to inform physicians of the wide variations in symptoms, and therefore diagnostic procedures, typical of patients with B12 deficiency. They can do the same, more generally, for B12 deficiency patients.
Look at the list of common misunderstandings of physicians regarding B12 deficiency and related aspects. Again, keep in mind that this list is intended for the benefit of physicians, but can also be useful to patients by alerting patients to the wide variety of B12 deficiency basics that physicians likely don't know.
Further on in the article, look for a heading that says something similar to "How should B12 deficiency be treated?" Again, remember that this is intended for the benefit of physicians, who, it can be inferred, likely don't know that there are two distinctly different populations of B12 deficiency patients, with two distinctly different regimens of treatment. Patients can benefit greatly by realizing that doctors are likely unaware of the two different treatments, and are especially likely to be aware of the treatment regimen required for patients with nerve symptoms to improve to the greatest extent possible, which is to say, frequent injections, every other day or twice a week by most recommendations, but certainly no less frequent than once weekly, until no further improvement, even small improvement per month, is recognizable. Also in this section is a fairly extensive (for such a brief article) discussion of oral B12 treatment. The bottom line is that, unless there is clear evidence that B12 deficiency is the result of a vegetarian diet, or other diet with restricted intake of meat, treatment should be by injections of B12, because even massive oral doses of B12 are likely to be either ineffective or insufficiently effective.
My suggestion is to print out this article and highlight the information mentioned above, and provide the article to your physician as a resource. No other information, other than another article from a peer-reviewed medical journal, will seem nearly as valid to a physician.
A brief response to your questions regarding specialists: I was diagnosed by a neurologist. When the diagnosis of B12 deficiency was made, my GP had the ethical wherewithal to tell me he was unfamiliar with B12 deficiency. I subsequently made another appointment with the neurologist to ask questions about treatment. The neurologist replied that his expertise was in diagnosis and he knew nothing about treatment. My GP subsequently offered to refer me to a "B12 expert", who happened to be a hematologist. After hearing just a couple of my questions regarding treatment of neurological symptoms, the hematologist told me that he wasn't going to be able to answer any of my questions.
In my opinion, and I am not medically trained, if you find a doctor with even a minimal level of understanding of B12 deficiency with neurological symptoms, and you receive relevant diagnosis and treatment, you have the medical equivalent of winning the lottery. In most cases, if you want beneficial diagnosis and treatment, you need to be prepared to educate your physician. In my opinion, there is no better way to start than with the article described above, written by physician/researchers, published in a peer-reviewed medical journal.
Hi JaneAmes,I also live in the United States. Are you saying that you didn't get loading doses they just gave you one shot and then told you to come back in a month and get another one? You are absolutely supposed to start with loading doses. In the US we don't do it as good as the UK does. Here I got one shot a week for 3 weeks it's supposed to be 4 weeks and then you go to once a month injections. In other places they get much more than that. I feel that my loading doses were not enough to kick start me. Your symptoms do get a little stronger before they get better when you start on B12. You might notice even new symptoms that come up but everything will then start getting better again. It's almost like the darkest before the dawn kind of thing.
You cannot get B12 in the US over the counter. All you can get is the one injection a month and that's all we have coming to us. So I buy my B12 from Germany and have it shipped to the US It's very inexpensive about a $1.40 per ampule that's including shipping because shipping is about $30. But that's still very inexpensive to treat yourself for the rest of your life and have control over your own health. There are a lot of links here to the pharmacies in Germany and in Canada. I find Canada's a little bit more expensive than Germany.
Yes you could see hematologist. I've had four in the last few months and they didn't know what they were doing. They were concerned that I was odeen on B12 and they freaked out and sent me for all kinds of tests that I knew were unnecessary. So I didn't have any luck with my for hematologists. But I did have a lot of luck with my cancer doctor who treats a lot of B12 deficiencies there because of cancer. And she's really listened to me and has taken some of my advice and has ran test for me that I have requested. She's been really great. I don't know where you live but if you could find somebody who specializes in B12 deficiency that would be great but I think that is a non-existent thing in the United States. There are also B12 health salons that you can go to and spend $30 and get an injection. I've called several of them and they allow 59 injections in a 90-day period, But they are $30 an injection instead of $1.40
How long have you had B12D? Did they diagnose pernicious anemia? Is your B12D diet based meaning was it caused because you're a vegetarian or a vegan? If so then sublingual B12 can be absorbed and you can take it. But if you have pernicious anemia and it's not a diet based condition, then you won't be able to absorb B12 and you'll need to inject it. It just depends upon why you are B12 deficient.
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GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
No PA or B12 deficiency but I am still going to supplement with oral B12 - should i get any other tests before this to rule out for sure?
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