Please help me figure this out

Hi there,

New to the forum and apologies if this is the wrong forum to be posting in!

Just a quick history:

When I was 11, 2005, I had an episode of violent vomiting for less than 24 hours and felt great the next day. Within a week I was experiencing constant nauseous waves lasting a couple of minutes-hours followed by intense heartburn, particularly at night. My doctor thought I was having what she called stomach migraines and I was prescribed ranitidine which did help and I was taking them for around 3 years. I was symptom free until I turned 16 when the stress of starting college seemed to kick off IBS, after a year of useless antispasmodics I was told to take Imodium whenever needed, ended up taking roughly 2 a day for a year. Decided enough was enough and when I turned 19 decided to go Paleo which largely brought my symptoms under control. However, over the years, I had begun to experience more and more brain fog, depression, irritability etc. Mostly this was okay and was manageable but not preferable.

Fast forward to 6 weeks ago I decided to try taking zinc for some eczema on my hands, which actually worked great and cleared up completely. 2 weeks ago I figured it was possible that I wasn't absorbing B12 properly so I took 1000mcg cyanocobalamin 3 days in a row then swapped to methylcobalamin same dose, actually felt pretty good for the first few days but on the fourth day I experienced extreme nausea and had to go home from work. I stopped the zinc and B12 immediately but the last two weeks have been hell. My brain fog, confusion and depression have spiked dramatically. It's hard to explain but I feel like a different person, I'm easily startled by sudden noises, find it harder to focus on things and my brain seems overwhelmed by too much visual stimuli. On top of that I find it harder to look people in the eyes when I'm talking to them. This is scaring me a lot and isn't my usual behavior. I have also been experiencing nausea after almost every meal and my body feels a little bit fluey.

So, I think when I was 11 I got H. Pylori. This settled down after a couple of years. I'm wondering if I may have had chronic mild asymptomatic gastritis causing B12 malabsorption. Is it possible that taking zinc, which supposedly kills h. pylori and then flooding my system with B12 has caused a flair up of gastritis causing the nausea after eating? I don't have pain but do have frequent heartburn. As for the neurological symptoms can B12 cause that? Can it get significantly worse before it gets better?

I'm having blood tests tomorrow and have been referred to the gastro so I'll update on results soon.

Sorry for the long, rambling post! If anyone has any advice or wisdom it would be hugely appreciated.

Thanks!

Conor

[fbirder]

Get a referral to a gastroenterologist so they can stick a camera into your upper GI tract. They'll be able to tell you if you have autoimmune metaplastic gastric atrophy and if you have an H. pylori infection.

It's the only way to be sure.

[Hidden in reply to fbirder]

Thanks for the reply fbirder. Do the psychiatric symptoms sound like B12d? Still very confused as to why they would get worse following brief supplementation.

Thanks

Conor

[fbirder in reply to Hidden]

It's difficult to say. The brain effects of a vitamin B12 deficiency are many and varied. The most common seem to be 'brain fog' and mood swings.

[Gambit62 Administrator in reply to fbirder]

fbirder - Conor had a q on folic acid below - tried mentioning you but it didn't seem to work

Conor,

On the psychiatric effects - depression and anxiety can be caused by B12 deficiency - psychosis is also a potential symptom of B12 deficiency. My B12 deficiency got a lot worse after NHS treatment started - but now under control - as I ended up with functional deficiency. I had 40+ years of depression and anxiety which definitely got worse in the few years before I was told (following an accident) that my B12 was low following a fall that landed me in hospital with a broken ankle.

The psychiatric effects of B12 deficiencty got worse and I was starting to experience mild psychosis before I finally realised that I needed a lot more B12 than I was being given. My psychosis was more to do with not being able to filter out information - really couldn't cope with being in a crowded space and had to learn to totally rethink cycling in traffic to stop focusing on motion around me and go for focusing on what was fixed. I used to navigate by focusing on trees and plants because green made me feel slightly calmer - hated red as it really made me feel anxious. Although I've not come across the acting out in sleep that you mention I was put on citalopram at one point (number of years before low B12) which gave me dreams that were so vivid that i stopped taking the citalopram after a 2 days because I was scared I was losing my grip on reality - could be that the citalopram was affecting my folate levels at that point and making the B12 deficiency worse but can't be sure.

[humanbean in reply to Gambit62]

Gambit62 I think you must be missing a step when tagging other members by name. The Help topic about it is here :

support.healthunlocked.com/...

[Gambit62 Administrator in reply to humanbean]

as I was replying to fbirder didn't think it would be necessary to mention him as well as he'd get a notification.

As you will see from the response below the @+ name doesn't always seem to work - sometimes the name recognition is a bit on the slow side.

[humanbean in reply to Gambit62]

Yes, I agree, it is often temperamental.

[Hidden in reply to Gambit62]

Interestingly enough I was recently hit by a car while on my bike, what scared me was the fact that, despite it being unavoidable, my reactions were much slower than I believe they normally would have been. I was also on citalopram for a year and I can definitely relate to feeling like you were losing your grip, though I've had no problems with sleep so I'm a little confused what you're referring to there? Given how I've been feeling recently I've been way too nervous to get back on the bike which is a shame because I used to ride everyday.

When you say your deficiency got worse following treatment, were you getting injections or was it treatment for something else? How did you get it under control? Has the psychosis been resolved?

[Gambit62 Administrator in reply to Hidden]

all the neuropsychiatric problems have resolved. The normal treatment just kicked off something that meant that B12 isn't available at the cell level now unless I keep my B12 blood levels permanently astronomic. My mother (diagnosed with B12 absorption problems last year) has similar issues.

citalopram is known to cause very vivid dreams for some people and that was how it affected me. They weren't unpleasant at all and I didn't have any problems sleeping - except that I just wanted to sleep all the time. It was just the fact that the dreams felt as if they were real in a way dreams don't normally that totally freaked me out.

Citalopram is an SSRI and SSRIs can interfere with folate levels causing problems - the extreme of which is serotonin syndrome so possible that there was a bit of that going on - though this was a number of years ago and I didn't have similar issues with fluoxetine which is also an SSRI.

[Hidden in reply to Gambit62]

I'm really glad to hear the psychiatric problems have been resolved for you, that must be a huge relief. How much B12 do you have to take?

[Gambit62 Administrator in reply to Hidden]

As much as I need - I tend to use nasal spray mostly so no guarantee that I'm absorbing all of it - sure that some of nasal/sublingual ends up in gut. I also mix my B12s to match a wide range of symptoms that have built up over 40+ years of building deficiency, and going from experiments to find out what deals with what for me.

Also inject every couple of days.

Generally 3mg adenosyl (sublingual tab), 2.5-3mg methyl (nasal spray), 2mg hydroxo (nasal/injection) a day. methyl helps with some neuro symptoms but does nothing for the neuro-psychiatric.

I also supplement folic acid and B6.

[Hidden in reply to Gambit62]

That really is astronomical wow. I'll update you on my results when they come through next week, until then thank you so much for your help, it's actually calmed me down a fair bit getting some things of my chest.

All the best

[Gambit62 Administrator]

reference to a gastroenterologist as suggested by @fbirder would be a good idea - certainly would help with identifying a potential absorption problem.

From above it sounds like you noticed an improvement with cyanocobalamin but didn't get on well when you switched to methyl. People do respond differently to different forms of B12 so may be that methyl isn't right for you ...

Another possibility is your folate levels dropping from processing lots of B12

[Hidden in reply to Gambit62]

Hi Gambit, need to amend my post as I had a look back through the calendar and realised that the first day of problems was 2 days before the methyl arrived but I ended up never taking it so I had only been taking cyano at that point. Doctor has referred me to the gasto thankfully but it could be several months away unfortunately, at least the ball is rolling though!

[Gambit62 Administrator in reply to Hidden]

thanks for the clarification - good to know - it is true that people do experience some systems getting worse before they get better but in general that would be symptoms that are related to neurological problems and/or the auto-immune system kicking back in to working properly (as many of the things we associate with feeling ill are actually the immune system trying to fight off and kill the infection.

[Hidden in reply to Gambit62]

Thanks for the info, it's definitely thrown me for six but if there is a potential B12 problem hopefully finding/sorting it out now will be very beneficial in the long run. Tests tomorrow so.

Quick question, I had looked a little bit into folate but didn't realise it could be depleted by taking B12. Do you know if Quatrefolic (6S)-5-methyl-tetrahydrofolic acid glucosamine salt is folate or folic acid?

[Gambit62 Administrator in reply to Hidden]

@fbirder more qualified to answer your question than I am - my scientific background was in physics and not chemistry or biology but it sounds like a methylated form of folic acid and in chemical terms I believe folic acid is folate.

[Hidden in reply to Gambit62]

I'll look into it and ask around. Thanks for all your help Gambit, all the best.

[fbirder in reply to Hidden]

It's highly confusing the way that medics refuse to use proper chemical terms. Strictly, folate is the ionised form of folic acid. But the term 'folate' is often used as a catch-all for anything slightly related to folic acid - just to maximise the confusion potential.

Methyltetrahydrofolate is the chemical that actually works with B12. The vast majority of people can easily produce it from folic acid. Some people have a problem with the enzyme that does the final stage (MTHFR). Those people may benefit from taking methyltetrahydrofolate (also sold as methyl folate or metafolin).

Just out of interest, the (6S) bit tells you it's a single optical isomer and the glucosamine salt bit tells you it's designed to be easily soluble.

[Hidden in reply to fbirder]

Ah that's cleared things up a lot, thank you. Out of curiosity, in someone who has the MTHFR mutation would that form be a good one to take?

[fbirder in reply to Hidden]

Well, I'm heterozygous (2 copies) for the 677C>T mutation and I'm sure I improved quite substantially when I switched from folic acid to methylfolate.

[Gambit62 Administrator in reply to fbirder]

fbirder think there's a typo and you meant to say homozygous ...

gremlins as well as trolls?

[fbirder in reply to Gambit62]

Well spotted. Yes, homozygous.

[Gambit62 Administrator]

Not specifically B12 related but this post might help with coping strategies relating to the neuropsychiatric symptoms

healthunlocked.com/couchtob...

[Hidden in reply to Gambit62]

Really interesting approach, hadn't thought about acknowledging your thoughts and assessing them like that. I definitely have a tendency to shy away from how I'm feeling instead of verablising and breaking down each thought pattern - thank you for linking that

[Hidden]

Okay so my results came back in and I'm a little bit stumped.

Firstly the H. Pylori antigen came back negative.

T4: 21.8 [9-24]

TSH: 1.4 [0.2-5]

Folate: 15.9 [3-16]

B12: 506 [150-900]

Ferritin: 62.2 [15-200]

Haemoglobin estimation: 154 [130-180]

RBC: 4.97 [4.5-6]

Haematocrit: 0.428 [0.4-0.52 Ratio]

So, from what I understand its very possible to have a normal B12 level but experience deficiency if you aren't absorbing properly? Would the next step be trying to convince the doctor to test for pernicious anemia or other absorption problems? I suppose its very possible I have no B12 problem at all and the symptoms are something else, but its the first and only thing I've ever seen and gone, "that sounds like me all over".

I'm currently taking 1x Jarrow B Right and 1000mcg sublingual methylcobalamin per day and have noticed a marked increase in anxiety, depression, visual problems and fatigue since. I've read that starting B12 can cause a start up reaction as methylation begins to fire up. Should I see it through or stop taking it?

Thanks in advance

Conor