coming back to life

[brendaann]

I am 59 and I have pernicious anaemia I have known and been doing B12 shots for a few years now. When I realized that this is what I was suffering with my number was 103 at that time I could not walk on my own I was in extreme pain, could no longer think enough to know how to make a good meal O and so much more I want to cry just thinking about it!!! I had been told I had MD for 7 years as my body was slowly deteriorating then the last year t got really bad I knew I was dying the last 6 months. Although I am doing much better now I will never be the same. also my daughter was having problems for the last few years she finely went for blood work and also has the same low B12 it was 137 she is having her injections every 2 weeks. she is 34 years old.

[clivealive Forum Support]

Hi brendaann do you have a specific question about your P.A. treatment?

Please come back and tell us more as there are many knowledgeable people on here who will be able to give you good advice.

[brendaann in reply to clivealive]

yes a few, I was having my shots in my arms rotating from one to the other I was able to get my numbers up to 617 and then they started to go down so I started having them in my legs and the number went back up even having shots every week the number will not go much higher. would like to know why... what else can I do? I was not feeling well at all so very tired all the time out of breath my heart was working hard and I would need to lay down and I would feel the throbbing all over and pain some times I thought if I fell asleep I might not wake up.. so I started to take the shots every 11 days and I have been doing better .. is there such a thing as having to much B12 to fast and can it effect us that way?

[clivealive Forum Support in reply to brendaann]

Fortunately you cannot overdose on B12 as any excess is excreted via your urine.

If you have a definite diagnosis of P.A. have neurological symptoms and are in the UK the N.I.C.E guidelines say you should have your maintenance injections every 8 weeks but many on here also find that they need them more frequently and self inject.

Can you ask to have your Folate level tested as this and B12 help your iron to make red blood cells.

[jpar in reply to brendaann]

Brendaann, I've had similar symptoms. I have 2 weekly injections of 1000mcg of hydroxocobalamin and I'm thinking of doing 3x per week. My tachycardia is much better now and my out of breathness is better although not gone. I have been getting injections now for 3 months. I am still ridiculously tired and have to sit or lay down often, but have noticed that my light sensitivity is getting better and so is the tinnitus that I have. I am not stumbling anymore and am sleeping a bit better. What type of B12 are you getting? Maybe it's not effective for you? And you may need a lot more....

[brendaann in reply to jpar]

I am on Cyanocobalamin 1,000mcg I have been on this for almost 2 years when I have my shots weekly my B12 number goes up to 617 if it's every 11-12 days they have gone done to 412 ... I knew they were lower because of how I had been feeling and pain. I have the shots I my arms for a while then rotate to the legs. This B12 is the only one we can get here in our area I have checked with all pharmacy's. I wish there was some thing else I knew to do that would be helpful. I will have a folate and D blood test done as well. I also have a thyroid disorder and take Synthroid daily and a blood pressure me.