1) Are there any ACTIVE B12 tests available in the United States? Can't seem to find any here. Relying on MMA, etc, isn't sufficient.
2) Can anyone recommend a doctor on Long Island (preferably), or anywhere in the New York area, that truly understands B12 health/deficiency and how to treat properly?
Thanks in advance all!
in US test is called holo-T
Please correct me if I'm wrong, but I don't believe the holo-T is available in the US. That is, in fact, the test I am looking for.
The impression I have is that it is actually a more common test in the US than in the UK but it may be a question of where it is available and if it is available privately - seems to be more common privately in the UK but rarely done on the NHS
From USA. I spent quite a bit of energy trying to find a competent doctor. I am good at such things and failed. Looking back I consider the energy spend harmful. I read B12 Survival Handbook and consider that harmful. I read Could it be B12 and found it helpful. I read B12 Deficiency in Clinical Practice and found that most helpful to me.
Self treatment including self injecting to be the way to go for me. It is wrong that is best it is not wrong that I do it.
I was under the impression that MMA and homocysteine were good markers of the B12 working properly. Do I need an active B12? My MMA and homocysteine were dramatically better soon after I started injecting.
I am from the US. I couldn't find any way to get active B12 test and frankly after two years of self injecting, I don't need any more tests.
I only know a doc in UT but he's well worth it.
Just get any doc to do a serum b12, folate, vit d, mma, IF, homocysteine, iron, thyroid, liver and kidney panel.
After that, don't need any tests. My b12 was 190, I was bed ridden. I'm normally a very active person.
I had the medical staff teach me how to self inject. The doc prescribed me B12 but in the end I just get B12 from Germany or Canada and self inject daily, some times twice a day. I now am able to exercise extensively, but it took 2 years.
There really isn't anything else the doc can and will do. There really is no use in doing any kind of b12 tests after the initial one taken before injections. The injections skew the levels making the serum b12 tests invalid. Just go by symptoms. Inject daily until you stabilize.
I also take b vitamines but a Multi w/o b6 then i Take high dose b1 and 50 mg b6 in P5P Form.
if left untreated, b12 deficiency can cause permanent neurological symptoms.
Read this, it will help educate you on some of the push back and myths the docs will give you.
by the way, I we t to Mayo Clinic and they told me b12 was not the issue despite it being low.
Don't WASTE your time there!!!
Don't waste your time with a hematologist. They really will try to take you off b12 injections.
I have always been a meat eater and my b12 had dropped despite eating meat daily yet the docs all thought they could just give me a few injections and then put me on oral b12.
I would ask them why oral b12 would work if I was eating meat and got low. If they don't (and they just can't) find the cause then they can't fix it, meaning I will never digest b12 orally. I will undoubtedly need injections for life.
Don't let them tell you to space out injections. That article I gave backs up the need for frequent injections until symptoms resolve.
Imevery time I tried to space the injections out, I would just regress. It took 4 years to get depleted, this it takes a long time heal.
Docs just don't have the means to figure out why it's happening unless you are vegan and don't eat meat. In which case oral will work.
I'm just saying injections really are the only treatment.
Thank you to you and to all that I've replied so far. My case seems to be a little murky. In 2018 I found out that I had very low B12. I was a vegetarian at that time and for the last 2 years have been vegan. Back in 2018, I began injections which brought my level very high very quickly. At that time I also took my first intrinsic factor test. It was positive, but it was shortly after my first injection which can result in a false positive. After several months of injections, I began taking a sublingual 1,000 mcg per day, and have regularly tested MMA, folate, homocysteine, Etc, all within range each time. I have also had negative intrinsic factor results since... until now. Just this past week my intrinsic factor result was slightly elevated. That is why I decided to look into an active B12 test, which unfortunately isn't available in the US. The other complicating factor was that back in 2018, when this all started, I had gastritis. The similarity to that time was dealing with a recent recovery from another stomach ailment that took months to deal with (strong antibiotic wiping out gur flora). I was looking for a good doctor to be able to ask if perhaps both stomach ailments may have had something to do with affecting the intrinsic factor test results. Present B12 li level is at 771. I was hoping to not have to start injecting again unless necessary. I told you guys this was a little complicated. Thoughts?
when was the last time you injected prior to the 771 level test?
I have not injected since 2018. My levels have remained in the 600 to 900 range since then on a 1,000 mcg sublingual daily. I've been monitoring with bloodwork every 6 months for the past couple of years, and these latest results were the first time I had a slightly elevated IF number since 2018. My iron and ferritin numbers also decreased a bit. Still wondering if winter stomach issues after killer antibiotic messed up my system so much as to interfere with absorption. MMA, folate, and homocysteine numbers are good. I guess I'll just keep monitoring in another 6 months? That's why I was hoping to find a doctor with good knowledge about b12 (likely a fantasy) to knock this around with and/ or was looking into a functional (active) b12 test in the USA (another fantasy). Thanks!
EONutrition has web sites on b1. perhaps try high dosing b1 and see if that helps as well.
watch videos eonutrition has on his web site. His information is based on info from an MD that worked at Clevland Clinic and wrote a book on it.
Supplementing high doses of b1 requires, potassium, magnesium and a b complex. The metabolism of b1 requires magnesium and other b vitamines, so high dosing b1 can cause a deficiency in those.
I take 250 mg / day of benfomax (b1).
The way I do my b complex is I get a b complex without b6, once per day;
then I take b6 in the form of P5P, separately. I take 50mg /day.
I take 400-800 mg of magnesium glucinate per day.
Any vitamins I take I research and find what the most bioavailable is. P5P b6 has fewer side effects. I get my vitamins from amazon. Pure or Kal (for magnesium) are my favorite brands.
I say give those a try and see if that helps.
And yes, seems like you are on the right track with tracking those other levels every 6 months.
As with every medical problem I have had, I have had to do the research and deliver the answer. I do rely on the docs for feedback and guidance, but w/o my research , they typically drop the ball. I don't blame them but rather the system.
Best of luck and ask any questions on this forum. So many here have a wealth of good information.
Thanks!
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
