Frequency of injections

[Quigley2005]

Is it really possible I need 3 injections a week? Coeliac disease 11 years . B12 deficiency diagnosed 14 months ago. Worst symptom I have is a light head or dizzy or woozy every day.worse when walking. Feel very unbalanced. Had every test under the sun re the the strange head thing but all normal. Could it be that I need loads of b12?

[deniseinmilden]

Or even more!

There are lots of us who need daily jabs and several who need to inject twice a day.

If you need it, then you need it!

Make sure you also have plenty of the necessary supporting supplements - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron and vitamin D - ideally from your diet but possibly as additional supplements.

[Quigley2005 in reply to deniseinmilden]

Wow that's a lot of supplements.thank you for your reply

[Nackapan]

I'm in the same time frame. My head symptoms are the worst. I'm weak and off balance when I need more b12. Arill get the rather sudden heavy horribkrme eyelids with tinnitus if I fight it I get a headache. So have ti keep very still and close my eyes. All sorts of odd things still occurring.

If yih need the frequency tou are on tiu need it. No point in setting g yourself back.

I also think it isn't logical needing si much. But your body tells you. Some of my symptoms were also helped by raising vit d and ferritin levels. I continue to have 3 mo they blood tests to try and get the levels that suit my body. (Not b12) unless I need folate checking

They are done together for some reason.

Have you tried cawthorne pysio vestibular exercises ?

I start my day with the eye ones. Tedious but I think it all helps

[Quigley2005 in reply to Nackapan]

I will Google the cawthorn thing.thank you

[Cherylclaire Forum Support]

Have a look at the right hand column of this page : at the bottom there is a heading "All Things Pernicious Anaemia Society". If you click on this, you'll find "Latest Poll" - there you will find over 700 responses to "How often do you feel you actually need your B12 injection?"

It might be 5 years old but unfortunately, not much seems to have changed for us - YET !

PAS is currently involved in new research into why this is the case.

I am currently reducing my frequency from every other day to two a week. Self-injecting every other day for over two years has given me so many improvements that I feel that I can now take this risk. It needs close monitoring (by me) because it was a slow accumulative improvement -and so would expect it could also be a slow accumulative decline in reverse. Staying positive, I'm hoping to keep what I have gained, maybe even improve further.

It hasn't cured anything though and I haven't had a completely symptom-free day yet.

[Nackapan in reply to Cherylclaire]

I hope that happens for you soon and your new regime goes well.

I'm still waiting for a symptom free day.

Glad you keeping positive

[Quigley2005 in reply to Nackapan]

Some days I think it cant be the b12 level. Was tested amongst other things and it was over 2000 so how can I need it so much. I'm sure I dont have PA and dont have gastric symptoms. I wish you a merry xmas x

[Nackapan in reply to Quigley2005]

Its what is teaching the cells. ??

A merry Christmas tog you. Lets hope the new year will bring g some light on to almost our queries

[Nackapan in reply to Nackapan]

Reaching the cells!!

[ljmulledy]

Yes!!! I inject several times a week sometimes. I base this on how i am feeling.

[Nackapan]

I don't know how you know when reaching the cells? Shoudvr been ? Before not!also just correcting my typos

Yes good to base it on how you are feeling

[BirdlessBox]

I got online access to my med. files recently and have found that I may be Ceoliac though they told me I wasn't. One of the the things I noticed was low protein that is a sign of malnutrition due to bowel damage. I never realised that it, or IBS, causes a broad spectrum of deficiencies. If you look at all your results you may begin to get a picture of what is going on for you. If you are still not absorbing correctly you may benefit more from injections of other supplement too, like iron or other B Vitamins, or what ever else is available. Good luck

[snowbird1234]

there are lots of things to look into....

kinda of like ....which came 1st.. the chicken or the Egg?...makes US think...LOL

1. your diet... what are you eating... and i am guessing

how your body works... & why

your Intestines need help... which could be why you have Coeliac...even if it is DNA we can change where we are with what we choose.

2. learn about detoxing your body (get away from Sugar !)

3. putting good flora in your intestines

if you can not take in Milk,,, try Keifer it has the best stuff for US... I mix mine in with yogurt & use as sour cream in recipes

There's a specific type of anemia that's triggered by a B12 deficiency. Called pernicious (which means "dangerous," because it was potentially life-threatening in the past) anemia,

it is a red blood cell deficiency that happens when the stomach doesn't make enough of a protein called "intrinsic factor", which helps the intestine absorb B12, says Moon. Pernicious anemia can be the result of an autoimmune issue, a problem with the stomach lining, or even a congenital condition passed down through families. Treatment usually involves B12 shots, possibly combined with supplements

Lack of intrinsic factor may be due to an autoimmune reaction in which your immune system mistakenly attacks the stomach cells that produce it. Vitamin B-12 deficiency anemia caused by a lack of intrinsic factor is called pernicious anemia.

Intrinsic factor is produced by the gastric parietal cell. Its secretion is stimulated via all pathways known to stimulate gastric acid secretion: histamine, gastrin, and acetylcholine. ... The cobalamin-R-protein complex is split by pancreatic enzymes in the duodenum, where cobalamin is bound to intrinsic factor.

Intrinsic factor binds to vitamin B12. ... Vitamin B12 is needed for red blood cells to form and grow. Some people do not make enough intrinsic factor or have a condition that destroys it. If your body does not make enough intrinsic factor, you can develop a type of vitamin B12 deficiency called pernicious anemia

Keep Looking..... You will find a solution

[Nackapan]

I'm not sure about that either. So.wtomes more b12 .makes me feel worse as though the body overwhelmed.

I was put on HRT helped for a out 6 days but then mistakingly made my body believe I could do more. Went for a walk . Newly collapsed then went onto a 6 day migraine. I think it was raising my serotonin levels . I tapered off hrt after o ly 3 weeks.

I'm 58 and finished the menopause 3 years ago which j believe emwzs the start of my b12 declining.

It does help lot of women.

Probably better if started younger as hormones still around.

Ik trying b12 weekly at present bug after my odd reaction to the last injection might review and see.

T C

[Susannna]

I loved reading your message because it sounds so familiar. Celiac disease. Then severe B12 deficiency. Lightheadedness/balance issues - and hand tingling/carpal tunnel. Neurological tests and MRIs and vestibular tests with findings that were "non specific" or "multi-factorial" or "idiopathic". Hearing loss in one ear only - I'm don't know if that might improve or not. Now that I'm getting B12 injections twice a week, the light-headedness and hand tingling symptoms are almost completely gone. With less frequent injections, the symptoms would improve, then return before the next injection was due. My doctor is satisfied with prescribing this frequency of injections based on my symptoms. I get the vials and syringes and self-inject.