AM I CRAZY? questions on B12 injections

[Crzygirl]

Hi, I have received 1,000mcg of cyanocobalamin injections weekly for about the past 10 weeks, I do have neuropathy that showed on my EMG & I do have tinging arms, legs, feet, hands etc. Depression, anxiety. This has gotten SOMEWHAT better. But is not gone. It has also helped my energy, prior to starting injections I could hardly make it through a day without falling asleep. I am only 20 and in college. I also take magnesium, Deplin for folic acid as I have the MTHFR gene, Iron because my saturation was under 20%. My Vit B12 was in the mid 200's and my neurologist is convinced it is a b12 problem but so far I've seen 2 hematologists who say I just need antidepressants, I've tried them and they don't work! I am also on birth control pills since August but I'm afraid to go off of them because even though I still feel depressed I cannot live with the pain and the PMS symptoms I had before, I'm not sure what to do! I've had thyroid checked, antibioties etc and all is ok. I know the birth control pill can make my moods worse, should my brain fog and neuropathy be gone by now? I only have 1 more weekly injection left & I don't know what my neuro is going to do after that. I feel like I am 80 ;(

[Lisahelen]

Have you been checked for coeliac, many report the same sort of pains etc prior to diagnosis.

[Crzygirl in reply to Lisahelen]

Thanks for the reply. I have had the blood tests for celiac and it was completely normal.

[Claire80]

Hello, I totally understand how you feel. I was first diagnosed with iron deficient aneamia when I was in college. I had to take high dosage tablets to get me back on track and was off and on them for about 10 - 15 years. I'm now 35 and 3 years ago I was also told I had very low B12 so I was given the injections one a week for two months then one every three months so I think your DR will give it to you every few months after the initial boosters.

I was also on the pill from age 17-33 and I only recently sound out that it can hinder absorption of vitamins and particularly B12. Now I've been off it for nearly two years I guess my body is still trying to balance out.

I took it because I have PCOS and irregular periods so I totally get why you want to stay on it. I would remind your DR that you'll need the injections if you're on the pill for a while.

And the injections really do work. Once I got into the state of having them every 3 months - I felt amazing!! I've been off the injections for 8-12 months now as my DR wanted to see how I would be but I know now that I'm struggling and need them started back up again.

Good luck, always here for a chat x

[Crzygirl in reply to Claire80]

Since I am taking iron tablets daily & have had about 10 weekly injections of b12 do you think I should be a lot better? The iron & B12 appear to be the only thing that makes me feel better, but I'm still far from great.

[Claire80 in reply to Crzygirl]

It did take me quite a while to feel much better. I'd say after the first injection I got when I moved to the three month plan, I noticed a big difference.

I know that can seem quite a wait but it's building up your reserve that makes the difference. Hold on lovely, you will get there.

I'd also notice about a week or two before I was due my next injection that I was feeling low but then a week after getting my injection I would be bouncing around. My family always laugh at me when I get it because I'm like an engergitc puppy!

I'm also doing research into nutrition as from what I've read so far it can make a big difference too.

X

[Bonjourtristesse]

I think it's too early unfortunately to expect to feel ok. You don't know how long you have been deficient. The good news is that you've caught it early and have someone on your side (your neurologist).

It's a good sign that you're feeling more awake, I would keep going with the injections if your neuro is willing. It can take a while to see improvements and if you can't find the reason for your deficiency (pill could contribute to it) you will need maintenance doses. It might be helpful to keep notes of changes/improvements and ask the neuro to continue treatment on this basis.

The good news is you are young so you are likely to have less damage than a lot of us have. I have been on every other day since November and I am just starting to get two pain free days where I have full sensation. I've probably had symptoms for around 20 years.

[Lyntwo]

You may need injections more often than what your current regimen provides. I am now 70 and male but first had these problems whilst in college after military service when in my mid twenties. Over my life I had lab work readings always at the low end of normal, and most of the time afflicted with long bouts of brain fog and depression.

It was not until my late sixties when my B12 levels went below the cut off point for normal that I was diagnosed as having Pernicious anemia and was given B12 injections. Those relieved my brain fog, depression and much of my neuropathy.

I have to, in my circumstances for best abatement of brain fog and neuropathy , self inject more often then the official regimen states. (note I live in the USA, and for reasons of economy they keep trying to place me back on tablets and no longer provide injections and so had to resort to self injection of B12) I also take Iron supplements of which a need for was indicated by blood work.

You are the one who can best understand your body. Please just know that you are not the only person caught in this confusion.

I sincerely hope you acquire the regimen of treatment which helps you live a full life.

Please do read the Pinned posts on this site!!! Especially PAS Information about Pernicious Anemia and B12 deficiency from....