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What Would You Do?

I hate gluten

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I hate gluten Apprentice
I hate gluten
Posted

So my B12 was low and they gave me an injection 3 weeks ago. I dont know about other people but I know my body, and I can garentee it is low again. My celiac test came back neg (not shocked started the diet first) and I have had a great improvement with quality of life since starting the diet. It got even better with my b12 shot and perscription D. My question is the doc. wanted me to wait 6 weeks before testing my levels (to see if it is dietary- hahaha- or my body) and I do not think I can go that long. I am getting tired again and not nearly awake as I was, it feels like the fog is coming back. I just woke up and am enjoying life for the first time in 6 years. They told me that I should have been neurologic last time it was so low. Yeah , really want that to happen. Should I wait, part of me says yes then the other part is like " girl are you insane, you just wasted 6 years of your life" What would you do?

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mindwiped Rookie
mindwiped
Posted

I'd at least call to ask what they wanted me to do. Tell them just what you posted, that you feel yourself running down and don't want to get back where you were, does the doc recommend the tests be moved up? I know I asked a specialist about doubling a medication that I'd had doubled, but had backed down to the 1/2 dose, and was needed doubled again. They weaseled around, and I finally said something along the line of, well the 30 mg isn't cutting it, and they've given me 60 before, why can't I have 60 now? At that point they realized the med list my PCP gave them was old and had me listed at the higher dose. Dose doubled, and I'm a happier camper. Ask, and you might just receive, ask not, and suffer in silence. Good Luck!

rumbles Newbie
rumbles
Posted

Definitely call the doctor. B12 deficiency can cause some

serious and long term issues. You're not a guinea pig, and

you shouldn't have to jeopardize your health; if you're

symptomatic again, they should be able to test your levels

now and see if they've dropped again.

georgie Enthusiast
georgie
Posted

Drs often like to test in the beginning like this to see if you are absorbing 'any' B12 from your diet - or if you are not.If the levels have dropped after 6 weeks this is a sign you have PA which is another autoimmune disease. An endoscope may then be needed to check the stomach for gastritis, and also an Intrinsic Factor Test and Parietal Cell Antibody Test - to check if it is PA. The IF and PCA are not a reliable test though. If PA is considered you will need a loading dose on B12 - 6 jabs in 2 weeks - then monthly or bimonthly for life. There is a nasal spray now which some say helps them, and huge doses of B12 tablets may work - although many of us don't find they do. If you are showing any neurological symptoms you need B12 regardless what the blood tests say.

NicoleAJ Enthusiast
NicoleAJ
Posted

It depends on what your B12 level was before you started getting the shots, but B12 is stored in the body for a very long time. You'll have to be the judge on how long you want to wait for the shots based upon how you're feeling. One word of advice though--have the doctor write a prescription for the cyanobalimine and the syringes and then have a nurse in the office show you how to administer the injections yourself. I did this a long time ago and couldn't be happier about my decision. I was so sick of having to schedule shots and pay copays and go out of my way for B12 shots. My doctor prescribed them once every two weeks, and once I had gotten up to a certain level, he left it up to my discretion how often I would do the injections. Now I know when I need one, and it's a lot cheaper to buy the prescription than to pay copays and waste my time.

I thought I'd just add that I tried to fill a prescription for the nasal spray about a year ago, and it was over $300 for a one month supply on my insurance (needless to say I did not fill it). My syringes and B12 only cost about $15 for 12 shots, which is less than I'd pay for a supply of sublingual B12 which may or may not be effective.

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