Concerned about my very frequent needs of self injections of b12

[Bummed]

I’ve been si for five years now. I was fine with weekly shots until about 6 months ago when my neurological symptoms reared it’s ugly head again. I have shocks pins and needles sore tongue and roof of mouth. Eyes also water.

I went to si every other day and about a month ago my symptoms subsided (5 long months of agony). Since then it seems that if I don’t si every day now I feel them coming back on. I try to go 2 days but the most I can be without is about 36 hours.

My concern is my need for this kind of frequency and will I have to do it twice a day. I will si as often as I feel necessary but it seems like my needs are increasing dramatically.

I take 400 mcg folic acid supplements daily and eat a healthy diet I feel like I might get to a point where I don’t even know how much I will need down the road. Every day si seems to be sufficient for now. Anyone else at this point? Have not read here people taking it every day. I’m a 63 year old male.

[Sleepybunny]

Hi,

I wondered if you had recent blood tests with doctor for folate, ferritin or other iron tests, Vitamin D, potassium, magnesium and if you had changed the type of B12 you are using?

Have you been tested for other conditions eg thyroid disease that have symptoms that overlap with those of b12 deficiency?

I suggest putting any thyroid results on Thyroid UK forum on HU.

In UK, GPs often only test TSH but there are other thyroid tests they (or a specialist) can order.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

It is possible for people to have Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

I wrote a detailed reply on another forum thread with links to B12 books, b12 websites, UK B12 documents and other B12 info which might be of interest.

healthunlocked.com/pasoc/po...

I am not medically trained.

[fbirder]

Ask for a referral to a neurologist.

There are scores of possible causes of peripheral neuropathy. A b12 deficiency may not be causing yours.

Are you on any medication for the pain? I couldn't live without my gabapentin. I've also found that alpha lipoic acid (3 x 600 mg) helps. It's used for diabetic neuropathy but my neurologist said it can't do any harm for me to try it. WIthout it I need codeine about once a month, with the ALA I don't need it at all).

[Bummed in reply to fbirder]

I’ve been to 3 neurologists and a neurosurgeon all of whom didn’t have an answer. Looking back at my bloodwork over the last 20 years my b12 level went from mid 600 to 210 When I hit the bottom number my symptoms came on over about 2 weeks. I had shocking pains Pin’s and needles crawling nerves then my tongue and roof of my mouth felt like I burned it. I poured over the internet because although my doctor included b12 in my blood work he never understood it to my frustration. Finally found a wellness doctor who was incredibly versed on the b12 subject and she set me on the injection path which from everything I read knew I needed. I was so relieved.

First thing I checked was my thyroid and all other areas that you guys mentioned and all came back fine. The b12 injections worked and does work although my concern is the new frequency. I was on gabapentin but it gave me little to no relief. Didn’t want to mask the problem with another medication.

If taking b12 every day is the answer I’m ok with it I just didn’t know if ultimately that was going to be good enough.

Thank you for your replies!

[aksundell]

I think that there are lots of things that can damage our nerves and peripheral neuropathy become more common with age. There are so many causes that one is not always identified. You may have more than one thing going on and that’s why you’re getting worse. I think extra B12 can help, but not cure other forms of peripheral neuropathy too. So, I wouldn’t assume that your problem now is also from B12 deficiency, but if more B12 helps it, you might as well keep injecting more frequently. I would be more concerned if you were having more central problems with cognition.

[Bummed]

I tested positive for lacking intrinsic factor. I accidentally left this out and just realized.