B12 and symptoms upon supplementing

[B12issues123]

I started getting severe symptoms in Janurary; feeling of passing out, no appetite I would put food in my mouth and have to spit it out, and my body felt like it was on fire. It took 4 ER trips, 2 family doctor trips, a trip to the Urologist, an MRI, multiple different imaging tests, and dozens of blood tests.

My doctor hasn't diagnosed me with a deficiency yet, however I've had low bile for multiple years due to antacid use everyday multiple times a day on age 8 to 17 for a severe glyphosate sensitivity that caused stomach issues. My doctor did tell me to take 500 mcg, however I accidentally skipped 3 days and my day one symptoms came back, so I bumped my dose to 1,250 mcg since then I've had improvements, however the head pressure I get in waves specifically at night after my three doses (500, 500, then 250) of B12. If I don't spread them out then my symptoms get worse.

Last week was my first week supplementing with 1,250 mcg gummies the Methyl-... B12 , but 3rd week supplementing B12 (2 weeks prior was week 1 250 mcg, then week 2 500 mcg-750 mcg) and my symptoms seemed to be improving. This week my head pressure is worse, I can hear tiny bubbles popping in my ears, my toes go numb and tingly after taking doses, and I'm constantly hungry even though I'm hitting 75% nutrients and all my macro goals for the day. My blood sugar is testing normal as I was worried the head pressure was caused by that, and they tested my blood pressure a dozen times in the past 2 months and it's normal, I also had my eyes tested and it's normal.

The head pressure is mainly in between my eyebrows and along my eyebrows it feels my eyelids are sticky. It seems the lightheadedness and feeling of passing out has turned into head pressure. After taking doses it was getting better now it's getting more constant. Having weighted things on my forehead helps, and cold things. Like a cold rice sock helps tremendously.

I also have 3 buldging discs in my spice and an annular tear which is adding to the nerve pain. However my back pain has decreased since starting supplementation I've also had 3 physical therapy sessions.

I told my doctor my symptoms and how each time I lower my dose or accidentally miss one (which I doubt will happen again for a minute) my symptoms worsen. She said it's likely unrelated to B12. I asked her for a test to check my absorption for B12 over mychart yesterday, but haven't received a response ye. My B12 tested low-normal, but my folate tested high.

I have been plant based for a decade, zero supplementation for the first 3 years, then just fortified foods, then nutritional yeast, then I had to change my diet because I discovered a severe sensitivity to glyphosate, and I went 6 months with no B12 and then I started taking 1,000 mcg Colb-... B12 and stopped after 3 weeks and that's when my symptoms started getting severe.

I got to the point my legs were numb and I couldn't walk, stuck in bed and on the couch, now I'm using a walker and almost able to walk without it, I really do think B12 played a huge role in helping me walk again.

The first 3 times I went to the ER I was told it was anxiety and each time given anxiety meds that didn't help, I went to ER due to feeling of passing out, waking up gasping for air, severe abdominal pain (I also have ovarian cysts), burning sensation of the skin, pressure in head, and blurred vision.

I was put on a heart monitor, but everything came back normal besides a few irregular beats. As I lay here writing this I can hear my ears like there's a strand of hair inside my ear someone keeps holding tight and tapping it along with popped bubble noises, my head pressure is numbing, and my left toes are numb. The leg numbness had improved i have feeling in my right toes now.

My eyes feeling like I need to blink, but then I do and the feeling persists. It feels hot in my head, but I don't have a fever. Can anyone tell me if these are normal symptoms. I wish doctors would listen to me about this.

[KBird01]

I'll leave to others to comment further on your treatment, but just wanted to say that I couldn't take Methylcobalamin supplement due to it giving me excruciating headaches. I also had other side effects like feeling extremely anxious and jittery. I was also a vegetarian for many years and had high folate.

Did you have headaches with cyanocobalamin tablets? If not, I'd switch to those at least.

Have you had your iron and ferritin levels checked? These may also be low with your diet. Don't supplement iron without having levels checked first as too much iron is a bad thing.

[B12issues123 in reply to KBird01]

I read that Methylcobalamin absorbs better, I did not get headaches on Cyanocobalamin. However I’m on like 50,000% of my daily B12 with Methyl…and 2,000% with Cyanoco… I’m taking both just higher of one. I’m not getting headaches it’s just severe pressure behind my eyes and forehead.

[Sleepybunny]

Hi,

Welcome to the forum.

It's quite common for forum members to report folate, iron and vitamin D deficiencies as well as B12. Have you had all these tested?

Also quite common here for people to report thyroid issues.

Thyroid UK forum on HU is a good place to ask questions.

B12 websites that might have useful info.

Pernicious Anaemia Society (charity)

Based in UK but has overseas members.

pernicious-anaemia-society....

Has a support group in US. This group has an online meeting on 22nd March.

pernicious-anaemia-society....

B12info.com

b12info.com/

Run by a UK campaigner on B12 deficiency issues.

B12d.org (charity)

b12d.org/

Has online talks about B12 deficiency.

The B12 Society (charity)

theb12society.com/

B12 Awareness (US website)

Set up by Sally Pacholok, a US campaigner on B12 deficiency issues.

I'm not medically trained.

[B12issues123 in reply to Sleepybunny]

I was told my iron storage is low. My folate is high. My vitamin D was low, I supplemented 2,000 IU daily for a year. However I stopped taking it a few months ago.

[Oneash]

Yes, autoimmune sinusitis and ear nerve issues are all part of the gamut of symptoms I have experienced. So keep taking the tablets and co-factors, including B6, zinc and DHA omega 3 fatty acids, to rebuild your nerve myelin sheath.

Sinuses are full of quickly shedding skin cells, if your DNA is replicating badly your immune system goes on the attack. Sterimar is useful. Fluoride free toothpaste is best to use, Aloe dent.

Please get the message out to the vegan community to not rely on nutritional yeast.

Watch this,

youtu.be/QqjyAeOLyKM?si=U3X...(Not working as expected?)

[B12issues123 in reply to Oneash]

I’m not taking Omegas, but I will start this weekend. Thank you. I already use fluoride free toothpaste. I’ve been low-tox living for 4 years.

[Hockey_player]

I think you would get better faster with loading dose injections of B12. A small percentage of your large dose is absorbed by some people with PA. With numb legs and being stuck in bed, you were in a train wreck state. I don't understand why you are not being given loading doses.

[B12issues123 in reply to Hockey_player]

I asked my doctor for injections and was denied. I’m getting my MMA levels tested today.