TheLupusSite.com banner

1 - 12 of 12 Posts

·
Registered
Joined
·
4,369 Posts
Discussion Starter #1
Hi,

I recently just discovered after a blood test that I am B12 deficient at present. This test was done per my request to GP after someone on this site suggested getting it checked as I had mentioned brain fog problems (thanks whoever it was)! I will be having another blood test soon to check levels, but in the meantime was just wondering.......

Does anyone have knowledge of treatment for B12 deficiency?

Are there different reasons for this deficiency, if so how are they determined?

Thanks

Lesley
 

·
Registered
Joined
·
150 Posts
Hi lesley,

I am B12 pernicious anaemia and with me it turned out to an autoimmune disease with 'anti-parietal cell antibodies'. I was told there was no DIRECT link with my lupus but it is an autoimmune disease and so it probably is connected via that.

I am supposed to have a vitamin B12 injection once every 3 months and it looks like strawberry jam in the syringe. It goes into the upper arm like a normal injection, stings a little but is really fine with no after - effects.

When you first have the treatment, they often give it to you more regularly, to get your levels up initially. You also need to make sure your folic acid is ok as this can interfere with it. Your doc should check your 'folate and ferritin' blood also.

Hope this helps,
love Cathy x
 

·
Registered
Joined
·
1,003 Posts
Hi lesley

I'm sorry to hear this,however at least you're aware of it now & can begin treatment.

all I know about it is that my friend who has crohnn's (sp?) disease has to have the injections that cathy has just described.I also thought it was something linked to vegetarians?
I am off to read clare's links now :) you learn something new every day on here :wink2:

sorry I can't help more lesley
good luck..I hope it helps with the brain fog!
take care..karen x
 

·
Registered
Joined
·
647 Posts
Unless you are a vegan or have very poor eating habits, pernacious anemia seems to be autoimmune related, though not necessarly lupus.

"1. Failure of the stomach lining to produce intrinsic factor. Intrinsic factor is a chemical produced by the stomach lining and combined with vitamin B12 in the small intestine. Due to an autoimmune disorder (a disorder caused by a person's own immune system attacking the body's organs and tissues), the production of intrinsic factor is blocked"

I take a prescription folic acid/b12/b6 supplement called comBgen.
 

·
Registered
Joined
·
6,152 Posts
Hi Lesley

Im glad you had this checked out. I think the person you were referring to was me :blush: On 4th January I wrote to you:

Hi Lesley

Just another thought. Have you had your B12 levels checked?
I just love the fact that we can share our experiences with each other and that not everyone has to re-invent the wheel every time. :)

I am on B12 injections for the rest of my life. I get them approximately every three months because my body just doesnt make B12 any more. The question you asked about how the cause is determined has eluded me. I didnt have any specific tests to determine the cause. All I know is that they the levels fall if I dont get the injection so I assume my body wont make them by itself anymore. Its relatively common with Lupus as I understand. It was the first blood test 'anomaly' that was picked up in my case.

Just make sure you get your levels checked as a matter of routine every few months. Low B12 levels can cause havoc as the links supplied will testify.

Luv n stuff
Joan:rose:
 

·
Registered
Joined
·
710 Posts
Hi,

Yes I have to have B12 injections every other week. I have chron's (in remission) as a result of this my body can not absorb B12 from food.

The injection must be done into the muscle. I self inject.

I also must take folice acid..another B vitamin.

Elaine
 

·
Registered
Joined
·
1,640 Posts
Hi,

I was B-12 deficient as well. I take oral B-12 drops everyday.

Best Wishes,
Sandy
 

·
Registered
Joined
·
553 Posts
This is really strange,

I was B12 deficient about 2 1/2 years ago with pos ana and the gastroenerologist dismissed it, so they never got to the bottom of it! Then I was Dx with lupus last year (strange that). The dermatologist said that the B12 levels could be to do with SLE.

Lesley I hope that they get to the bottom of yours soon and you are feeling better.

Anyhow I take well woman multi vits which have evening primrose in as well which is good for skin and hormones. It was the highest amount of B12 I could find at the time and it is enought to keep me away from the needle at the moment.

Hugs

Claire
 

·
Registered
Joined
·
4,369 Posts
Discussion Starter #10
Thanks everyone for your messages!

Joan - THANK YOU FOR YOUR INITIAL SUGGESTION!

I really hope my treatment is by drops or tablets as my initial thoughts were oh my, aahh to the words injections - I have an amazing bad phobia of needles! I can't even watch someone else have and injection or bloods without being sick or feeling sick that includes pics on TV too and my childrens innoculations! When I have to have bloods taken I feel panicky and ill for days prior, get extra headaches, bowel problems and sickness. I do manage to have bloods taken but boy is it an ordeal, even with the deep breathing exercises! It took me about 10 weeks to pluck up the courage to get my bloods taken just before Christmas.

To be told at some point in my life that I would have to inject myself would be unbearable - so I hope that never happens!!

Love Lesley
 

·
Registered
Joined
·
15,684 Posts
Hi Lesley,

It's great that they uncovered this, it's something that is sometimes overlooked as a cause to those symptoms.

I had a B12 deficiency in my teens not long after what I would class as my first flare. I had injections for some time and then as teens do forgot to keep going back as I had better things to do. I did eventually go back and the doc checked my levels again and they were fine, a bit on the low side so I supplemented orally and now don't even need to do that. So you never know yours may be a transient case like mine - I hope so if you have a needle phobia :wink2:

I have an Aunt with Pernicious Anemia and she has had lifelong injections, who knows what caused the glitch in me, but it was a glitch and not a permanent thing for some reason.

love
Lily
 

·
Registered
Joined
·
60 Posts
HI,
I am low b-12 too. I take over the counter tablets 500 mg, after 5 months I only raise my test level to 412... low is under 200/ which is where I was at the first test and have no clue how long I was low. My rheum thinks its not high enough, He said I could take 1000 mg tablets now , has anyone taken this amount and has it helped?

Otherwise my rheum will send me to my gp for injections, ( his office does not have the b-12 available in his office) I thought it might be helpful to begin with injections to boost the level and then go back to tablets to see if it stays more normal level. I guess the doctor will decide on this.
Karen
 
1 - 12 of 12 Posts
Top