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trying to get B12 SI schedule right for me

Schpsych2414 profile image
7 Replies

hi all

Just trying to get my SI schedule right to feel my best. I live in the USA so tx protocol is once a month B12 injection. This doesn’t work for me. I need it much more often. It does seem I feel best when I’m injected by the nurse. I order my own supplies to SI at home in between nurse injections. I’m wondering if during the travel time from Canada to my home in US if the B12 becomes inactive due to exposure to varies environments during transport. Intramuscular seems best and that’s what I’m attempting every time I SI. Through blood labs my co-factors are monitored. I think I’m due for blood labs shortly including CBC and iron panel. Besides feeling exhausted and other symptoms, I’m noticing serious under eye darkness. I take vitamin and mineral supplements.

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Wheat profile image
Wheat

hello, many others have found B12 is used up quicker with extra physical mental activity and illness. They inject more to ameliorate this effect.

B12 will deteriorate/ be ineffective if subject to light, temperatures 75degrees and over. Should not be frozen. I have a small insulated portable travel case that has a section for a cold pack.

Best wishes.

lb9999 profile image
lb9999 in reply to Wheat

Hello Wheat,

Why do you say it shouldn’t be frozen? I buy hydroxo in single use vials. It’s specialty compounded and has no preservatives. I’ve always kept them frozen until use. Now I’m second guessing what I should be doing. Ha ha. Thank you.

Wheat profile image
Wheat in reply to lb9999

Hello, this forum consistently recommends that b12 is stored in a cool dark place, that 75 degrees and above it is kept top shelf of fridge. That freezing may make it less effective. Manufacturers do not mention freezing as such.

My Manufacturer of methylB12 states that its not necessary to store in fridge but that is acceptable too.

I use both hydroxy. and Methylcobalamin B12 and personally do not wish to take the chance that my B12 is less effective so will not freeze.

I suggest you contact your manufacturer/supplier for clarification re. storage.

Motheroflittle profile image
Motheroflittle

Have you asked your GP to increase your frequency? I told my NP that once a month did not relieve my symptoms and he increased my RX to every 14 days. It still wasn't enough so I now SI( IM) twice a week. The dark under eyes may be from fatigue. You might try a different brand of B12, just to see if it makes a difference. I have tried many brands and there are some subtle differences. I get mine from Germany, Amazon de. I have not had issues with temperature or faulty batches but it can happen. I try to stock up before summer hits the southeast. The S.C🌴 heat is brutal ! 🔥

Schpsych2414 profile image
Schpsych2414 in reply to Motheroflittle

Stocking up on the future is a good idea … NY heat can be rough but SC has is beat. My GP has me monitored and treated by a hematologist bc iron deficiency has been involved in the past. I told my heme doc once a month is not enough but it fell on deaf ears. Not sure how to convince her. I will look for the pdf. file on the support group FB page. Thanks for your thoughts. It’s so hard pushing through my days at work. I’m thankful for the weekends.

WiscGuy profile image
WiscGuy

To my knowledge, there is no standard treatment for B12 deficiency in the US. The following is simplified.

Most doctors are confused by B12 deficiency, thinking it is one diagnosis with one treatment, when actually it has been known for decades that patients with B12 deficiency tend to fall into on of two groups: blood symptoms (pernicious anemia, with enlarged red blood cells), and neurological symptoms, with nerve demyelination. Between 10 and 20 percent of patients with B12 deficiency have enlarged red blood cells. Treatment for B12 deficiency with blood symptoms is something like the following: B12 injection daily for a week, then weekly for a month, then monthly.

Treatment for people with neurological symptoms (eg, tingling feet or hands; difficulty thinking of the correct word in discussion; and many, many more) is something like the following: B12 injection twice a week for two years, then review, if no further improvement, fewer injections.

I suggest printing out two articles and taking them to your doctor: "The Many Faces of Cobalamin (Vitamin B12) Deficiency), from the Mayo Clinic Proceedings, a peer-reviewed medical journal;

Read the first paragraph, where the authors describe briefly the confusion among doctors because medical schools have been teaching incorrect information for generations; the box on the second page, where main items of confusion common among doctors are listed; and the section on treatment toward the end of the article, where the treatment I listed above are described.

sciencedirect.com/science/a...

"Vitamin B12", first author Bruce Wolffenbuttel, from the British Medical Journal.

bmj.com/content/383/bmj-202...

Briefly mentions many important aspects of B12 deficiency.

I am not medically trained.

Schpsych2414 profile image
Schpsych2414 in reply to WiscGuy

Thank you 🙏🏻

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