Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone (doctor laughed when i mentioned this). I tried coming off b12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid b12 twice daily.
I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab.
I am ifab negative with first b12 level 164 and second 236, doctors are not treating me for b12 deficiency as my levels are 'normal'.
I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms
I am waiting result of a genetic test which will hopefully reveal where the undiagnosed b12 deficiency originates from.
Has anyone else found similar issues.
Brian
Written by
coisty1971
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I am using a uk company (similar to 23andme) and only going down this route because on my Dads side there has been undiagnosed I'll health and my brother, sister and myself all have similar symptoms. I believe a lot of my issues could have been prevented and I'm hoping to pass information down to the next generation. I believe our issue is due to constant stress and not methylation. Results should arrive in next couple of weeks.
I've had breathing, swallowing and strange anxiety; all went away with B12 treatment. They can creep back in if I'm not getting enough B12. The swallowing is awful. My jaw will also feel so worn out and exhausted. Before any treatment I remember not having the energy to chew or swallow. I had numb hands and my arm on my left side. "Numb" might not be the right word because it would hurt so bad I would wake up. I had improvement in the first 6 weeks of treatment there and have not had issues with my arm or hands again. Though my left leg acts up. When I sit, if my left foot and leg get the numb tingles, it's a reminder to take a capsule as I do not inject.
Thanks for giving me this info, I am aware of the whole link between low b12 = increased stress and high stress = low b12. When i am constantly waking during the night due to my body being in stress (numb hands or toes) I am immediately in fight or flight ie adrenal pumping which totally throws out my body clock and my body's ability to heal. My main issue was my ulnar nerve pinching on either arm causing my outer hand to go numb. This happens when you bend your arm during the night by sleeping with soft splints my sleep is now a lot better and I'm hoping once my nerves repair that I will no longer need them.
Gosh I had same thing re numb hands. I'm also not treated by gp as my b12 was in range although low. Sublingual b12 took away my numb hands that id bn complaining of for about 10yrs. I do have some residual weakness probs esp with left hand and if I forget b12 for while (like on hols) the numbness returns. I used to try to keep arms straight in night too, yr splints sound great idea x
They work really well but take a bit of getting used to. I got the idea off the web, someone said try using towels taped round your arms. I goto bed looking like the tin man from the wizard of oz lol.
It is possible to stimulate the Vagus nerve with regular gargling and practising the Uijay breath of yoga. Over the last few years my ability to stimulate the epiglottis with the Uijay breath has proved more difficult - which for me is in line with other things going downhill
Glad things are improving for you .... keep up the good work. Like you I have suffered from B12 deficiency ( No Terminal Ileum ) - having always had reasonable B12 results - in the 300's. Now injecting weekly !
I have read about this (stimulating your gag reflex, face in cold water etc) but ain't got round to trying it yet. I will also look into trying yoga, thanks for the advice.
Hi coisty1971 It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.
I was taking 400mcg methyl folate alongside 2000mcg methyl b12 daily but I don't think in my case the issue is a mthfr defect causing low b12. I got immediate results just by taking sublingual Cyanocobalamin. After speaking to my sister she said that after her b12 injection the stomach issues, tinnitus, clumsiness etc all go away but her overactive fight or flight doesn't. I was/is diagnosed with rapid cycling cyclothemia bipolar and ive been treated for over 10 years after a close suicide attempt. I am now off all my meds and depression/mania is not an issue when taking b12 and controlling my stress levels. In my case I believe my issue is a genetic stress condition which is why I need to find the answer as I don't want our families next generation having similar preventable life threatening issues. Having an overactive fight or flight mechanism is great when controlled but adrenal fatigue kicks in when it gets out of hand, this is what I believe causes my sudden mood swings.
My father, brother, sister and myself all have diagnosed hiatus hernias but i am the only one to undergo surgery. I believe that if I had been taking b12 supplements earlier that this would have been avoided. We have all been treated at some stage with either h2 blockers or ppis but after looking at the link between b12 and stomach issues and also after trying the baking soda test that we all have low stomach acid and that the years of antacids made things worse. This again once proved is essential information to pass down to my kids.
Have you had a saliva test for the adrenals to measure your cortisol and dhea. I found mine v helpful and needed to take pregnenelone for a non existent dhea level and found adaptagens v helpful for high cortisol- aswaganda holy basil and motherwort ( for sleep)
Your levels of b12 to me are still v low. Have you considered self injecting? ( my friend is a teacher in Japan and she gets help until her levels reach 600 then maintenance doses monthly. Her symptoms are so similar to yours)
Thanks for the reply, I am in the process of considering changing doctors as since being diagnosed with mental health issues my gp blames everything on this and won't look at my physical problems. I have a wish list which includes cortisol checks, homocysteine checks (family history of heart attacks in 40's) and check for diabetes. I wrote a 5 page letter to the head doctor at my practice detailing my symptoms and history. This was 3 weeks ago and didn't get a reply. I am a 46yo living in the UK and will look to self injecting as a last resort.
Im waiting 4 some tests at hospital i have iron deficiency animeia waiting 2 go for abdomen ultrasound to see if any underlying stomach problems ie polyops or vein blockage or rippsin stomach as i had an ulcer a few years ago +lost halfcmy stomach so waiting is very nerve racking waiting for appointment and results sue browne derby
I have these same issues and have had some B12 deficiency signs for 25 years. I started treating with daily cyano shots two months ago. So far I've healed partially from heat intolerance, I can sweat now, for the first time 9 years, and I have no more tingling in my hands. I'm hoping the nerves that help clear the bloating will heal next, because I still struggle with that. How many years were you undiagnosed and suffering from B12 deficiency before you took supplements, and how long have you been doing treatment?
I am 46 and first noticed stomach / anxiety issues when I was in my late teens which was made worse by my heavy drinking and wild lifestyle. I have not drank alcohol for over 10 years. I had a hiatus hernia op in my early 30's then diagnosed with cyclothymia in my mid 30's. I have had back problems for over 20 years, eye focussing issues for over 20 years (getting worse) and tinnitis/numbness/confusion etc for the past 5 years. I have had a constant sore dry throat for the past 3 months (probably nothing to do with b12). I should have my genetic results back before the 24th Oct.
I have been taking different types of b12 sublingual supplements for about 5 months since my sister said all her issues went away after she was given b12 injections. Once I have my genetic results which will hopefully point to the cause of my symptoms I will demand b12 injections if this is what i need.
I really wouldn't place too much hope in those genetic tests. There are very few medical problems that have a proven genetic cause. BRCA1 and MEN1 are two that spring to mind.
There are more conditions where there is some evidence for a link between specific mutations and some medical conditions.
There are a lot more conditions where one-off, poorly-designed, small-scale, non-repeatable studies have come up with a link between a mutation and a medical condition.
Some irresponsible people leap on these latter studies to push them as proof that the mutation causes these conditions and that their website/book/pills can fix these problems. Just check out (not-a-real)Dr Ben Lynch and see just how many different conditions he blames on the MTHFR gene. He has even jumped on the anti-vaccine bandwagon.
I couldn't agree more and would never recommend anyone to go down the route of genetic testing but in my case I felt I had no option as my doctors are not treating my symptoms and I am confident that if I had known what I know now my life would not have been as shitty as it has been. My biggest mistakes was going on antidepressants and antacids without doctors looking at other causes first. My Dad and brother have had problems with low iron, both are still on prescribed long term antacids (Dad ranitidine, brother omezraplol). My sister and myself no longer need any antacids since taking b12. There are a lot of genetic defects which could tick the boxes but until I look at my report I don't want to worry about specific ones or to scare others.
This thread was not started for anyone to start guessing at what genetic defects could be running in my family. I am going to stop posting but would like to say thanks to all those who did give helpful advice on my b12 issues.
I have always had anxiety and fight or flight for no reason for the past 25 years, turns out it’s parasitic infection. I had gastroscope, colonoscopy and ct scan. All of which cannot see the parasite. I took a leap of faith by taking anthelmintic and lots of worm passed out in my faeces. Turns out they are residing in small intestines area which scope cannot reach and low resolution ct scan cannot resolve. The anxiety issue is completely gone and didn’t come back. I suppose they the enemies living with me who keep attacking my intestinal lining, hampering my absorption of iron and b complex and even sucking my blood.
Yes. I've also had lifelong IBS, bloating, constipation and a host of other symptoms -- all now clearly pointing to folate & cobalamin deficiencies and severe vitamin malabsorption issues.
I just started taking a prescription form of active methyl-folate & b12 and b6 Sept. 2017 and these (40+ year) IBS, bloating constipation symptoms have resolved for me as well! Oddly enough, most of my current MS flare up symptoms resolved while taking the B complex.
I, too tried coming off the B complex, but all my MS and digestive problems returned within 3-4 days off the pills and only 18 hours after getting my first injection earlier this week.
RE: "... genetic test" I used my FTDNA and 23andme RAW data to ascertain that I do have a MTHFR mutation -- an impaired folate metabolism & a host of cobalamin deficiencies.
as an update I now no longer need to take B12 for my stomach issues since I started taking Choline daily and I am also now taking magnesium which has helped a lot especially with anxiety, tremors and weirdly my eyesight is a lot better now. I am now no longer getting issues i was associating with low blood sugar BUT I still have a sore neck and post nasal drip which could be due to silent reflux. This has been constant since my stomach bloating/constipation is now fixed. I have also found too much methylfolate makes me severely overmethylate including severe paranoia.
I got my DNA results back and I dont have any MTHFR problems but it did show an issue with DHFR, COMT and MAOA/B (fast) plus lots of others. It did show up a rare 1% issue linking to MS and Ulcerative colitis but this along with around 5 others I was looking into were deleted from my raw file after 2 months?? Long story.......
Doctors that laugh at us should go ____ themselves. That is one of the most belittling infuriating things. Here in America it's called consumer directed healthcare for a reason. I have autoimmune gastritis that caused my PA. And I had to solve that mystery all on my own, with doctors giggling as though I'm somehow amusing.
Hi i have same issues hard to swallow nd acid reflux and my b12 level was 203 so dr feel it fine but also he give shots me for 2 months and then stop so my symptoms come back again..i have so many neurological symptoms too..now again I went to doctor and start injection from last 1 week...does this issue cure ?what you feel when you swallow something?
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