Baffling results and doc won't treat

[maddog7]

Hey all,

My blood results eventually came back, my antibody tests were both negative, H-Pylori was negative and MMA was bang in the middle of the normal range at 0.12 (0.00-0.28) Serium B12 at 270 (200-1000)

I'm quite baffled since taking B12 sublinguals appears to slightly worsen the symptoms.

I've pointed out the thing about treating regardless of test results but my doc is refusing even a single trial injection.

The other thing that might be of interest is that after 5 weeks of no alcohol I've recently had a couple of social nights where I've had only a couple of beers.

On both occasions my symptoms have been worse the next day.

Any thoughts on the above would be gratefully appreciated.

Cheers

David

[hopefull2016]

It's not uncommon for B12 to worsen your symptoms. I think it's a good thing and not a bad thing. Are you in the USA? There are usually many places you can get injections of B12 like weight loss centers, Walgreens, etc.

[maddog7 in reply to hopefull2016]

Hi hopefull2016,

I'm in the UK so it's not so widely available here unfortunately. I'm not far from Dr Chandy's practice so I may try to contact him about it.

Many thanks for the reply.

Cheers

David

[Cariad-y-Mor]

Hi maddog7 - I think beer contains alot of B vitamins.....but really don't know if that is why you had worse symptoms the following day.....just a thought. 🍺🍺🍺🍺🍺🌞

[maddog7 in reply to Cariad-y-Mor]

Wouldn't that be just the boon!

Joking aside, a useful and interesting reply bernie51. I'll do a little looking into it.

Cheers

D

[Lisahelen]

Have you been tested for coeliac?

[maddog7 in reply to Lisahelen]

Hi Lisahelen,

No, I've not been tested yet but as a result of your suggestion (and a couple of other kind souls on here) I've just done the coeliac.org survey thing which suggests I should be tested for it.

I'll mention it to my doc (if he's still open to discussion!)

Many thanks

David

[Sleepybunny]

I have read that drinking alcohol can lead to a drop in b12 levels.

ncbi.nlm.nih.gov/pubmed/151...

[maddog7 in reply to Sleepybunny]

Hey Sleepybunny,

Interesting article, the drops seem modest but alongside other factors like PPI use and possible exposure to NO2 it might be enough to tip things.

Thank you for the interesting reply

Cheers

David.

[fbirder in reply to Sleepybunny]

Interesting how the American definition of 'moderate' alcohol use (30 units per week at the higher dose) is more than twice the amount recommended by the NHS.

I also wonder if they looked into the diuretic effect of the alcohol - being as B12 is eliminated in the urine it might have an effect.

[Gambit62 Administrator]

was the serum B12 before or after you used the sublinguals? would have expected it to be a lot higher if was after supplementing with sublinguals if there wasn't an absorption problem.

Probable that MMA may have been affected by the use of sublinguals.

If I read your earlier posts properly you did find that some symptoms (brain fog) improved with the sublinguals but it was the neurological symptoms that got worse. As others have said it isn't uncommon for these symptoms to get worse before they start to improve. B12 is used in the processes that mediate neurotransmitters and it would appear that process is a very delicately balanced one so a small change can nudge it significantly in the wrong direction for a while. Seems to be a particular problem with COMT genetic variants in combination with methyl B12. However, it may just be that the brain needs time to adjust to signals suddenly coming through a lot stronger than they have done for a while.

I certainly find that alcohol impacts on where my symptoms are - I am female but I'm not postmenopausal so the effect noted in the study referenced by Sleepybunny may well apply to other age groups and may even apply if you are X-chromosomally challenged

[maddog7 in reply to Gambit62]

Hey Gambit62,

Thanks for the well thought our reply.

All results were before the use of any B12 suppliments and yeah, brain fog improved pretty much instantly after using methyl sublinguals, tingling hands, feet, torso and face got correspondingly worse. I do seem to have "progressed" a bit in that my feet ache quite badly by midday now and I do feel "puffed up" for want of a better description, my feet and hands seem to swell. I also feel like my joints seem to be being affected.

My wife commented tonight that my tummy felt "hard" (She's a 30 year experienced senior nurse)

I was at a gig tonight and my backside hurt unbearably from sitting and clapping made my shoulders ache and hands tingle like hell.

To date, I've not had any genetic testing done so dunno if I have any genetic issues other than being "X-chromosomally challenged"

I've decided to take folate and spatone (iron) suppliments as well as the B12 and see how that goes, was considering taking a B complex to see if that would balance things up a little.

Cheers again for the reply

David

[Gambit62 Administrator in reply to maddog7]

I haven't done a genetic test either - think about it but never get round to it.

Someone mentioned the ileocaecal valve in a response the other day - muscle that acts as a valve between small and large intestine. Sometimes it doesn't shut properly and you get flow back - symptoms very similar to B12 deficiency but includes swelling - apparently quite easy to close it manually - just mention it as you mention swelling in hands etc.

[Hidden]

Hi maddog7, since developing PA I've become intolerant to any alcohol. Just a thimbleful and I'm half seas over. Hic hic 😀. Other members of my family also have PA and have the same problem. If we do try and take a tipple it's just like having a dose of flu for 24-36 hours.

'M'

[Polaris in reply to Hidden]

Me too Mabsie - I have really enjoyed half a small glass of wine in the evening even though I know it depletes B12. But, however much I try to convince myself that it's too little to have an effect, I've come to the conclusion that even this small amount has a drastic effect on 'leaky gut' and inflammation of the lining of the stomach....😒🍸

[Hidden in reply to Polaris]

Polaris, We're cheap to take out and can drive home.😉 I haven't had alcohol for thirty years now. Oh well, can't dwell on it. What is to be is to be. 'M'

[Polaris in reply to Hidden]

That's true 😊You've done well to be abstinent for so long Mabsie. I hadn't been able to drink for years due to stomach issues, so had been enjoying a tipple since these had resolved on g/f diet - especially as I really miss naughty cake and biscuit treats too 😈

[Hidden in reply to Polaris]

I'm mostly gf but due to intolerances/allergies live on a very restricted diet and this means occasional treat. Not as good as you Polaris with regard to gluten.

Maybe maddog7 should try going gluten free. Just a thought.

'M'

[Polaris in reply to Hidden]

A very good thought and in line with Dr Kharrizian's excellent books on autoimmune/gut-brain connections 🤗

It's certainly working for me.

[srmika]

Hi there! I'm not a doctor, but I can share my experience with you. My levels were at 267 when I began my B12 treatment, and I was suffering big time -- no energy, felt like a total zombie, brain wouldn't work, memory was failing me, and had neuropathy. Even though my levels were at the low end of "normal," I was feeling the pain. Fortunately, my doctor agreed to give me injections. I got them every two weeks for two months and was still suffering. Now, I'm getting them weekly and am finally starting to turn the corner. If I were you, I'd push hard for frequent injections (I'm in the U.S. so get 1000 mcg every week). Like you, I've also found that alcohol makes me symptoms worse. For me, it's usually a few hours after having even just one drink. I don't know much about the correlation but can tell you anecdotally that it happens to me, too! I'm a big fan of a cocktail but have decided to back off until I start feeling better. I wish you the best of luck!

[maddog7 in reply to srmika]

srmika,

Thanks for the reply.

Even half and hour to an hour after a single drink I start to feel it. I seem to have developed sensitivities to all sorts of things I didn't used to be senistive to before, like soldering which I know can be nasty but didn't used to be a problem and 3d print particulates which don't seem to affect anyone but me!

I really can't see the harm in my doc trying even a couple of doses of injected B12 but he won't because he insists there is no evidence in the tests that indicates to him that they would help. Even if I only have a 10% chance of B12 deficiency the small cost and risk would be worth it surely to cover off the possibility of permanent neurological damage? Apparently my doctor thinks not.

I do hope you continue to recover.

David

[srmika in reply to maddog7]

Thank you -- and right back atcha! I sure hope your doctor wises up and gives you the injections. If not, people on this forum can certainly give you good advice on how to self inject.