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Severe B12 deficiency. Need to find injections (US)

Messages
6
Hello all,

I’m a 23 year old male (former college football player).

I have MTHFR as well as MTRR. After 4 years of severe health issues, I recently discovered from a hair test that I have severely low B12. My symptoms all line up with B12 deficiency (Paranoia, severe insomnia, tinnitus, EMF sensitivity, etc...). These symptoms all started after a football surgery I had 4 years ago during which I was administered nitrous oxide, an anesthetic which is known to destroy up to 50% of the B12 in the body following even one dose.

I found an anti-aging clinic near my house that offers Methylcobalamin shots. I received a shot on Tuesday and it had a miraculous effect on all my symptoms for about 24 hours. I’d like to try the shots daily for a while (since B12 is non-toxic in large doses). The clinic, however, is refusing to administer the shots more than once a week.

I’ve made several attempts at Freddd’s protocol utilizing methylcobalamin lozenges, Methylfolate, and the rest of the deadlock quartet. Unfortunately, I can’t seem to supply the B12 lozenges fast enough to meet my body’s needs.

For the short term, I’m realizing that injections are my only option. However, methylcobalamin injections are not available in the US via standard pharmacies.

Any recommendations for moving forward? I’m eating a diet high in meat and liver. I have low stomach acid, however, so I’m not absorbing most of the B12 in the food I eat.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
There are many compounding pharmacies that sell injectible MB12 by prescription. I do injections 3x a week.

It would be useful to track your B12 level uding a methylmalonic acid test (not seeum B12). You may also find you need B2, B6, B1, molybdenum, magnesium, potassium, and amino acids.
 
Messages
6
There are many compounding pharmacies that sell injectible MB12 by prescription. I do injections 3x a week.

It would be useful to track your B12 level uding a methylmalonic acid test (not seeum B12). You may also find you need B2, B6, B1, molybdenum, magnesium, potassium, and amino acids.

Thank you for the reply! Just to be clear, are you saying there are compounding pharmacies in the US who will sell methylcobalamin? I’d heard that methylcobalamin is not available via any pharmacy in the US...If that’s the case, im assuming I’d have to go through a doctor to get it?

Regarding the other nutrients, I am taking most of them aside from B1 and molybdenum.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thank you for the reply! Just to be clear, are you saying there are compounding pharmacies in the US who will sell methylcobalamin? I’d heard that methylcobalamin is not available via any pharmacy in the US...If that’s the case, im assuming I’d have to go through a doctor to get it?
Yes, it is prescription only. I have gotten it from 3 different compounding pharmacies that my doctor called in a prescription to. Many pharmacies also require a prescription for syringes, but I found a large grocery chain that will sell without prescription. I use 3ml syringes with 27 gauge needles.
Regarding the other nutrients, I am taking most of them aside from B1 and molybdenum.
B1 and molybdenum are used in the transsulfuration pathway, the step in detoxing after the B12/methionine cycle and making glutathione. The transsulfuration pathway gelps you to excrete any toxins you've mobilized so they don't get reabsorbed and redeposited elsewhere in the body.
 

BeADocToGoTo1

Senior Member
Messages
536
Also perhaps dig a little deeper to look at why you are so B12 deficient. B12 deficiencies can be due to, for example, pernicious anemia, gastritis, Crohn's, celiac's, SIBO, Candida overgrowth, EPI, malabsorption issues to name a few. Are you a vegetarian or vegan, or is your diet lacking in B12 type of foods, as that might also be something to look into.

These are some tests to consider:

Antiparietal Cell Antibody (APCA)
Methylmalonic Acid (MMA)
Intrinsic Factor Antibody (IFA)

My B12 was deficient amongst many other nutrients due to not absorbing food properly. So please consider looking into:

Genova FMV nutritional test, which is a great indicator of nutrient deficiencies, microbiome dysbiosis, malabsorption, etc. The 'Essential and Metabolic Fatty Acids Markers' add-on is also very helpful. Great Plains Lab has a version as well called Organic Acid Test (OAT).

Others to perhaps consider in order to check for any absorption type issues:

Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin. Doctor's Data has something similar as well.

Spectracell Micronutrient testing - checks for intra-cellular (white blood cells) nutrient levels. It was the only one that spotted my vitamin K deficiency at the time.

24 hour fecal fat test (indicator of pancreatic enzymes and malabsorption)

SIBO breath test (SIBO can cause malabsorption, mind fog and many other symptoms)

HbA1c (standard test. 6 week blood sugar average indicator of (pre-) diabetes and food intake quality)
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I had a Spectracell and NutrrEval run together, and while the vitamin K is on the Spectracell, it was very inaccurate for some very important nutrients. The NutrEval is a better test as you can follow entire pathways better, where the Spectracell is more of a shotgun approach. The Spectracell fell down in the nutrients my nody is nloeung through really fast - said levels were ok on several nutrients where the NutrEval was screaming deficiency and it was evident in the enture pathway where the bottleneck was. Chris Masterjohn was pretty scathing in his critique of the Spectracell.

The Great Plains OAT (organic acids test) is interesting. It overlaps with the NutrEval but is missing some key info, althiygh it has a few things the NutrEval doesn't. The values of tgecteo tests correlate more closely with esch other than the Spectracell.

Yes, there can be reasons one is short of B12. Or some of us just need more due to how sick we are and our genetics.
 

outdamnspot

Senior Member
Messages
924
Is it possible to be B12 deficient even though blood test levels are high (without supplementation)?
 

Hip

Senior Member
Messages
17,824
I’d like to try the shots daily for a while (since B12 is non-toxic in large doses). The clinic, however, is refusing to administer the shots more than once a week.

You might like to look into B12 oils, which actually provide a methylcobalamin systemically absorbed dose that is higher than you get with injections.
 

Moof

Senior Member
Messages
778
Location
UK
Is it possible to be B12 deficient even though blood test levels are high (without supplementation)?

Yes, yes, and yes! I was so deficient that I had a whole list of symptoms including early dementia, yet my serum levels were sky high. I can no longer absorb it through my stomach, so I self-inject.

Any recommendations for moving forward?

Can you order things from Germany from the US? Injectables aren't available without a prescription in the UK either, but it's easy to buy hydroxocobalamin from EU countries where it can be sold over the counter. Also, Oxford Biosciences in the UK supply methylcobalamin as a powder that you can make up with saline to the injectable form – a couple of folk I know do that, and it works well for them. I haven't bought it myself, as I do fine on hydroxocobalamin (which is cheaper and easier to store).
 

outdamnspot

Senior Member
Messages
924
Yes, yes, and yes! I was so deficient that I had a whole list of symptoms including early dementia, yet my serum levels were sky high. I can no longer absorb it through my stomach, so I self-inject.



Can you order things from Germany from the US? Injectables aren't available without a prescription in the UK either, but it's easy to buy hydroxocobalamin from EU countries where it can be sold over the counter. Also, Oxford Biosciences in the UK supply methylcobalamin as a powder that you can make up with saline to the injectable form – a couple of folk I know do that, and it works well for them. I haven't bought it myself, as I do fine on hydroxocobalamin (which is cheaper and easier to store).

Did you notice any difference in terms of tolerating pills vs injections etc? Trying methyl-b12 lozenges a few years ago crashed me badly but I've read that can be the sweeteners etc if you're sensitive. I have a bottle of Greg's b12 oil I've been wanting to try but grew nervous when @Hip mentioned it can worsen/induce new allergies and sensitivities since that's a big problem for me already. I think the bottle I have is the adenosyl/methyl mix.
 

Moof

Senior Member
Messages
778
Location
UK
Did you notice any difference in terms of tolerating pills vs injections etc?

I was on oral supplements when I developed the deficiency, which is why my serum levels were so high. I obviously can't absorb it from my stomach, though, as I'd taken various types on a regular basis over a period of 20+ years.

I've never tried transdermal B12 – some others have had success with this – mainly because injecting is cheap, easy, and definitely works. I never, ever want to go through that deficiency again, so I'm not taking any risks!

I'm not really sensitive to supplements, except lithium orotate and oral forms of magnesium (both cause hideous RLS), so I'm not the best person to advise on this. But if it's an oil, maybe you can try a tiny amount and build up the dose slowly if you don't get a reaction? I really hope you manage to find a workable solution. #fingerscrossed
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
How did you realise you were deficient?


I had peripheral neuropathy and my ME doctor prescribed weekly B12 injections which had immediate good effect (neuropathy disappeared)

Yet, when a blood test showed no B12 deficiency, the GP in charge of administering the injection stopped the injections. The peripheral neuropathy started again and my ME doctor sent my GP a letter explaining that I was still
Deficient.

By this time I had learnt about sublingual (under tongue) sprays from the knowledgable PR community and, with my ME doctors okay, used that daily instead.
 

Busson

Senior Member
Messages
102
I had peripheral neuropathy and my ME doctor prescribed weekly B12 injections which had immediate good effect (neuropathy disappeared)

There are some (not many) studies of B12 acting as a painkiller, even in people who are not B12 deficient.

If it turns out you are B12 deficient and respond to methylB12 then also taking methylfolate (and even B6) might help with the psychological symptoms you describe by reducing homocysteine, although it may be wise to keep an eye open for an entirely different cause.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I've been taking B12 for many years. My cobalamin was always just about undetectable on hair analysis. For a few years I did B12 injections by prescription - 3 x a week and noticed no difference. I tried both methlcobalamin injecions and then hydroxocoalamin, and neither seemed to have any effect. The sublingual tablets didn't really do anything for me either, probably part because I was too impatient and didn't wait long enough for them to dissolve.

And then I tried liquid sublingual methlcobalamin, and two 5000 mcg doses per day, I finally felt a difference. But I had to take it every day, twice a day, and I figured that absorption was better with the liquid - I would hold it in my mouth and not swallow it right away, and also, I think I would have needed injections daily to get the same amount of B12. 3 x a week was just not enough.

Now I'm getting by with one 5000 mcg. dose of the liquid sublingual methlcobalamin and doing okay with it.

My numbers on my blood work are irrelevant. They're always high but it means nothing in terms of how well I'm utilizing B12 and in fact indicate that I'm not utilizing it well, which is why I have to take so much.

I've used two liquid methylcobalamin supplements, both worked well - Bluebonnet and Why Not Natural B12 - I've gotten them both from Amazon.
 

Busson

Senior Member
Messages
102
And then I tried liquid sublingual methlcobalamin, and two 5000 mcg doses per day, I finally felt a difference. But I had to take it every day, twice a day

@Mary 5,000 mcg sublingually is a large dose to be taking continually for a long period. I can understand such doses being necessary at the beginning whilst replenishing depleted store. I found that high dose B12 (1mg by injection or a few squirts of Greg's oil) started off good but after some months became distinctly troublesome.

I appreciate only a fraction of sublingual B12 is taken up (perhaps 2 percent) but you dose would be too much for me. Isn't there a danger of adapting to such a dose and then getting the appearance of deficiency symptoms between doses? A sort of symptoms rebound effect. Do you have any thoughts about this?
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I appreciate only a fraction of sublingual B12 is taken up (perhaps 2 percent) but you dose would be too much for me. Isn't there a danger of adapting to such a dose and then getting the appearance of deficiency symptoms between doses? A sort of symptoms rebound effect. Do you have any thoughts about this?
Hi @Busson - first, sorry for not replying sooner. I somehow missed your tag. I've not heard of adapting to a dose of B12, and having apparent deficiency symptoms between doses. I haven't had any noticeable bad reaction to the B12b and no sign of deficiency symptoms between doses. However, we are all different. I know that many people would have a terrible time on the B12 I'm taking. So I'm not making a general recommendation for people to take the same dose I do.

The main point I was trying to make was that after trying injections which many seem to consider to be the gold standard for supplementing B12 and having no apparent positive results, I found liquid methylcobalamin to be effective. And as I stated above, I think I would have had to do injections daily to get to an effective level. So that might have been the problem with the injections - not doing them enough.