B12

[carolyn_lsc]

I'm taking methyl-b12 shots. Three months ago my doctor raised my mb12 shot dosage from 3250 mcg every three days to 5000 mcg every three days. I thought it was making me really hungry--too hungry to the point of where I constantly wanted to eat. I experimented myself and have been doing the injections every 5 days instead of every 3. The hunger went back to normal.

However, I don't notice much of a difference when doing the shots every 5 days--the difference seen was mostly improvement in bowel movements. I will be seeing my doctor in a couple of weeks and will be expressing my concern with doing the 5000 mcg every 3 days and tell him that I think I did better with 3250 mcg every 3 days. I'm hoping that he'll listen to me because being hungry all the time is a huge problem, and I won't take 5000 mcg of mb12 every 3 days if that's what occurs.

However, my question is what do I if I'm still low in b12? I've been doing
mb12 shots for 1 1/2 years and still am low in b12. For most of that time it was 3250 mcg every three days until my doctor increased it to 5000 mcg every 3 days.

Carolyn

[rose]

Carolyn,

As difficult as being hungry all the time is, if it happens when you get B12, it probably is a sign of your body attempting to repair.

If you are low in B12 after all that, you store horribly. Or, if the shots were not methylcobalamin, you might have a rare inability to convert the other type to a usable form.

Are the shots definitely the methylcobalamin type?

rose

[carolyn_lsc]

Rose,

Yes, the shots are definitely the methylcobalamin type.

Carolyn

[rose]

That's exceptional! Good for you. :)

rose

[carolyn_lsc]

Rose,

So are you saying that I should consider doing the shots every 3 days at 5000 mcg like my doctor had me do? That the constant hunger is a good sign?

Carolyn

[mrsD]

Where do you obtain your injections? What company supplies it to you?
Do you get them from the doctor?

Are they compounded for you?

When a therapy fails one has to consider the drug or route of administration
is faulty, perhaps.

I once researched B12 injection. The cyano version is cleared from the serum in 72 hrs in normal people.

With your high doses, some should be in the serum, unless you are excreting it thru the kidneys at a high rate for some reason.

So I would look to the supplier of your injections. Maybe there is nothing in there? or it is subpotent?

What would happen if you subsitituted 5mg methylcobalamin ORAL daily for a while? I wonder.

[carolyn_lsc]

Mrs. D,

I get my shots from Hopewell Pharmacy in New Jersey. They are compounded for me.

Carolyn

[rose]

Yes, I am saying that it might be a good thing.

I sure would take the oral methylcobalamin. Whether the methylcobalamin shots are good or bogus, the oral is a good thing and can't hurt.

And if your symptoms have correlated (over time, not a coincidence) with the shot frequency, I would have the shots more frequently. Again, if you need that you must be an extremely rare case, but at least it is safe.

rose

[mrsD]

You might want to read this:

http://www.casewatch.org/fdawarning/comp/hopewell.shtml

You know when you use such high doses of something often, and injected, and
you do not show blood levels that reflect that...one really has to wonder!

What was your last serum value you had tested Carolyn?

[rsdpainradar]

This is amazing, my Dr told me I was a little low on B12 and to start taking the pills. I have noticed I have had more of an appatite but never connected it to the B 12, wow, I'm glad I looked on this site! Thanks,

[carolyn_lsc]

Thanks Mrs. D for the info about Hopewell. That info comes from Casewatch and is operated by the same person that operates QuackWatch, and I have absolutely no belief in anything that comes from those two sites. However, I did research Hopewell in terms of the Autism community. Many others use Hopewell successfully for MB12 shots. They are also an acceptable pharmacy on Dr. Neubrander's site and a certificate is provided for the MB12: http://www.drneubrander.com/page5.html It's not readible from my computer though. However, that's really as far as my research has gone about Hopewell. I've tried Wellness Pharmacy & College Pharmacy for MB12 shots and theirs stung like crazy which wasn't tolerable.

I had my last level of b12 check by a blood test from Spectracell Laboratories. B12 was right in reference range, but on the low border of being in it. My result was 19 and the reference range is from 15% up. That probably doesn't match the b12 serum test from Labcorp or Quest Diagnostics at all. My doctor wants me to be in the middle range of the reference range. Also some amino acid testing led to the need for more b12.

I had this same test completed over 2 years ago and interesting enough my B12 levels were the same in both. All the other nutrient levels changed over the two years. The first test 2 years ago was done before any mb12 and the 2nd test that was recently done was with mb12. So like you said it really does make me wonder.

Carolyn

[carolyn_lsc]

Mrs D.

This is a reply that I got from Dr. Neubrander's office regarding the low B12 levels & Hopewell. What do you think of it? Also I'd be interested in giving oral B12 a try. Do you have any suggestions of B12 that doesn't contain sugar? Most of the ones I've seen contain sugar which I'm avoiding.

B12 tests measures are not specific to what kind of B12 (methyl, cyano, hydroxy...). Raising or lowering MB12 based on B12 tests cannot be done as the test does not separate the kind of B12 you need. The only tests we use is doing the Parent Designed Report Form before making a change to the MB12 and then redoing the Form 5 weeks after a change to MB12 with NO OTHER CHANGES occurring during that 5 week period. Lastly, if you are doing B12 without the proper supplements in the proper ranges that mb12 needs to do its job, mb12 will not be utilized but excreted as excess.

Do you meet the Supplement Review Worksheet guidelines for Magnesium, Zinc, B2, B3, B6, Selenium and C? If these guidelines are low then the mb12 may not be processed and the excess goes out in the urine which may explain that the mb12 levels are similar.

http://www.autismweb.com/forum/viewtopic.php?t=9960


Carolyn

[mrsD]

When a dosage form fails...like you are experiencing, one should consider a
change. One option is to change the pharmacy you are using, while still getting injection. The other option is to change to oral administration.

http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=JRW-18004
This form of B12 is the most commonly chosen one on the forums here and at BT. This link is for the 5mg version (not all is absorbed, you know).

Taken once a day on an empty stomach for best absorption is best.

You have the right to refuse any treatment that you find ineffective or uncomfortable. Discuss this with your doctor, so you can have the blood work done before you d/c the shots, and after 3mos on the oral.

The numbers you state for B12 don't make sense. Typically they are in the "hundreds" not the "tens" but then I am not acquainted with Spectracell's ranges.

[carolyn_lsc]

Thanks Mrs. D,

I'm going to discuss the oral mb12 with my doctor in a couple of weeks. I also plan on discussing his thoughts about the hunger with increased amount of mb12 dosage. I'm going to ask him about increasing the shot frequency to every other day or every day with a lower amount mb12. I don't want to switch pharmacies because I've already tried 2 others without success. I'll let you know what I decide to do.

Carolyn

[carolyn_lsc]

Mrs. D,

I was informed that if you have yeast oral mb12 won't work because the yeast takes it all. Do you have any knowlege about this? I have yeast so I just wondered about this.

Carolyn

[rose]

I wouldn't think that even an horrendous overgrowth of bacteria would be able to deplete so much.

However, maybe you have the perfect combination: severe malabsorption, serious yeast overgrowth, and ??? That sure might be part of the puzzle.

rose

[mrsD]

If you have Candida, Carolyn I would hope you get treatment for that.
I know that parasites such as tapeworms do deplete B12.

And low b12 can simulate Candida overgrowth, but I have not seen
papers on the reverse.

[carolyn_lsc]

Mrs D.

Yes, we're treating my Candida, but it's not easy to get rid of. We've been working on getting rid of it for 1 1/2 years now. I don't have parasites though, thank goodness.

Carolyn

[orthomolecular]

B12 is manufactured in the GI tract by bacteria. So the candida problem means that your GI tract may not have the right bacteria or not enough of it.

I am not sure how using the sublingual form effects the absorption with candida problems.

Maybe the b12 patch would be the way to go. I think there may be a b12 cream. You might talk to your doctor about other forms besides oral and injectible.

[rose]

It has been thought that some can manufacture some B12 in their intestines, but if it happens at all it is very little. B12 must be obtained from the outside, regardless of how efficient one is at producing the tiny bit or recycling it.

The cause of malabsorption should definitely be eliminated when possible, but this situation appears to be worse than a severe malabsorption. I would look to use or storage.

And if one is extremely rare and for some strange reason cannot get it orally with huge doses, IM shots should be the most direct way of obtaining it.

rose

[carolyn_lsc]

I discussed this MB12 shot & constant hunger issue with my doctor today. We decided to drop the dose back down to 3250 mcg at every three days instead of 5000 mcg. We also decided to get a vial of MB12 shots & syringes instead of prefilled syringes. Someone mentioned that being in the vial instead of the prefilled syringes might help to make sure the potency stays where it should. So I'll just fill my own syringes. I do it all the time anyways for my allergy shots.

Carolyn

[mrsD]

I hope your multidose vial is amber (or protected from light in some way)

I'd also keep in the frig between doses.

[carolyn_lsc]

Yep, the vial is protected from light. Hopewell does a real good job of protecting their mb12 from the light.

Carolyn