paradoxical B12 deficiency. Might this be my problem? Anybody know how to treat?

[Bertwills]

Hello, I’m wondering if this might be the answer to some of my lingering symptoms some of which are neurological.

I’ve always had high levels of B12 in all my Medichecks blood tests. I’ve been hypo for decades and have now settled on 40mcg of T3 split over 2 doses daily and test twice a year.

I have problems however with strange nerve pains in my face, arm and back linked to chemical sensitivities. I also frequently have an enlarged tongue with teeth indentations all around. It’s often red & inflamed too.

My memory is not good and I sleep badly, waking much too early most nights.

I have awful digestion with IBS. I follow a restricted diet avoiding foods that cause me pain. I’m gluten, dairy and FODMAP free. Low acid problems I think. I take digestive enzymes now.

I know that digestive problems are known to cause B12 deficiency due to malabsorption.

I’ve been reading up & wondering if my high levels of B12 are masking a deficiency and giving me symptoms.

Does anybody know if it’s best to inject B12 to counteract this? I’ve used B vitamins supplements for years although usually keep them at a low level because of the high B12.

Do I need to take extra B2, folate, selenium & molybdenum as I’ve seen suggested as treatment? Is this something I can treat myself or should I find somebody to work with? Can I buy injections for myself? Which tests should I do to monitor?

Sorry for all the questions but all I’ve found online so far are academic papers full of chemistry.

Thank you for any help. I’ll try the Pernicious Anaemia forum too though I get the feeling this isn’t really their area.

[GlowCoach Administrator]

How high is your B12 level?

Have you also tested key vitmins ferritin, folate, D3, if so what were the results? We need ALL of these vitamins to be at OPTIMAL levels for our thyroid hormone to work well.

Have you tried a probiotic?

[Bertwills in reply to GlowCoach]

thank you for reply. I have tried various probiotics without great results. My stomach is much more settled now but I think there might still be low acid & malabsorption. I’ll find my latest Medichecks results.

[CoeliacMum1]

Having pernicious anaemia some of those symptoms are as you describe typical B12 deficiency but also other things too, but if levels are high this shouldn’t be the case. Firstly do you know what test you’ve had for B12 active or total. NHS predominantly do total (in my area anyhow) so total will show what level is there in your blood but not necessarily what is actually doing you any good, but you’d hope having high levels some is getting through but maybe not the case.

Digestive upsets, metformin and antacids, poor diet,over cooking and alcohol are some areas that can cause our B vitamins trouble along with stress.

I think it’s a trip to the GP and hopefully they’ll look at folate (B9) too and maybe see a dietitian/nutritionist as such dietary restrictions could be causing other problems if not supplementing and maybe wise to get some expert advice on how to overcome these (if any) with correct doses personally to you.

[SlowDragon Administrator]

What are your most recent vitamin D, folate, B12 and ferritin results and ranges

How do you take your T3

As single dose……waking or bedtime

Or split as 2 or 3 doses spread through the day

[Bertwills in reply to SlowDragon]

hi, I take 2 doses of T3 a day. Ferritin & B12 are over range at Medichecks & have been for years, probably inflammation. D & folate are mid range at Medichecks.

Thank you for your reply. I think my problems are not now hypothyroidism except for my low stomach acid. I might try some injections to see if they help. Nothing ventured, nothing gained!

[SlowDragon Administrator in reply to Bertwills]

So what are your most recent TSH, Ft4 and Ft3 results

Testing early morning, last dose levothyroxine 24 hours before test and last 1/3rd daily dose T3 Approx 8-12 hours before test

Which B12 supplement are you taking

B12 mouth drops or lozenges avoid gut absorption issues

[humanbean]

I have a very high (over the range) B12 result most times I test it.

I discovered a few years ago that by keeping it at that level I fix a couple of health issues I've had most of my life.

I make sure I always take a B12 supplement (1000mcg) that is one of the active ones i.e. methylcobalamin and (sometimes) adenosylcobalamin. I take this about 3 or 4 days a week.

I also do my best to keep my folate quite high, while keeping it in range, although it has a tendency to drop frequently. I use methylfolate (1000mcg) for that. I take this about 3 or 4 days a week.

I also take a B Complex daily to cater for the other B vitamins.

One of the most likely reasons for me needing these high doses is because I have to take PPIs which cuts absorption of everything I take.

[Bertwills in reply to humanbean]

Thank you. I’ll try out some supplements to raise levels. I’ll also look at injections to avoid stomach absorption problems. It looks as if high levels aren’t the problem I thought they were.

[humanbean in reply to Bertwills]

That's true for vitamin B12 anyway :

perniciousanemia.org/b12/fo...

perniciousanemia.org/b12/le...

stichtingb12tekort.nl/weten...

and may be true for some of the other B vitamins. For example, Izabella Wentz takes (or took at one time) very high doses of vitamin B1 aka thiamine.

thyroidpharmacist.com/artic...

A website you might find helpful for looking up possible benefits and dangers of high levels or doses of vitamins is this one :

hormonesmatter.com/

[Imaaan]

You might want to look into h plyori, sibo and gut dysbiosis. Also have you ever had a sleep study done?

B1(Thiamine HCL) helps with digestion and acid production. Start low and slow if you decide to try it. Make sure you're taking a good b complex, I like Thorne Basic B. The higher you go with B1, you're going to require its co factors ( b complex, magnesium and potassium) I like to get my potassium from food sources like coconut water. It's great for the adrenals as well

I tried 100mg and it caused me to produce too much acid. That said, I absolutely loved how it made me feel energy wise. I dropped down to 50mg and I still was getting reflux in my throat. Dropped down to 25mg and still felt it gave me reflux. I'm thinking of either trying other forms of B1 or retrying it after I do a round of herbal antimicrobials for my SIBO.

****I have a hiatal hernia so I'm sure it might be contributing to my reflux *****

[Serendipitious]

Bertwills,

My B12 is also elevated without supplementing. I am wondering if I have a genetic tendency towards this. I will do a Lifecode GX Methylation report to see what's happening. Every time I see the GP I get asked about this and taking any supplements further raises levels but so farh hasn't provided me any benefit that I've ever noticed.

The activation and reactivation of B12 also requires other cofactors (vitamins and minerals), even if you supplement directly with an active form (as it will become inactive, and much of the benefit is from the ability to reactivate). Hopefully the Methylation test will present the genes in this context, including genes that impact the cofactors. It is possible that insufficiency of some cofactors are impacting the ability to utilise the B12 for other individuals too like yourself.

Methylation report

[Bertwills]

Yes Serendipitous, that’s very much the area I’m interested in.

I’ll have a look at the test you mentioned. I’ve done so much to try & sort my health out & have made progress but something is still giving me problems that are resistant to all that I’ve done so far.

Mainstream medicine is not helpful nor the very expensive functional medicine practitioner that I consulted. I’ll keep researching. I’d love to know how you get on.

Thank you.

[Serendipitious in reply to Bertwills]

Bertwills,

This was the test I was referring to:

lifecodegx.com/methylation-...

The problem is this isn’t widely known and nutrigenomics is an emerging science. I don’t know who your FM practitioner is but it’s possible they weren’t trained in this. All the best.

[Bertwills]

Thank you. It does look interesting.

I think I’m going to experiment with adding the appropriate supplements & not worry about getting a high level of B12. Hopefully some will make it through to my cells & if no improvement after a couple of months I’ll think again.

[Yppah]

I find sublingual by Cytoplan or spray by BetterYou increase my B12, whereas swallowed pills do not.

[Bertwills in reply to Yppah]

thank you. That’s useful to know.

[Spreadlove8]

Hello, IAM on the same situation, high b12 without supplementation and many neurological symptoms, did you treat yourself ? Can you please give me an update ? Thank you

[Bertwills in reply to Spreadlove8]

Hello, I’m sorry to hear you have similar problems. It’s so hard to try to work out what might be the root cause. I’ve experimented with loads of supplements & seen I’ve been to see a neurologist. Didn’t help at all. At the moment I’m taking the usual supplements & trying to build up stomach health with probiotics, hoping to improve absorption. My inflammation levels have reduced so has my B12. That’s probably what is causing my over range test results. I’ve been concentrating on other areas. You’ve reminded me. I’ll look again at the B12 problem.

[Spreadlove8 in reply to Bertwills]

Thank you so much for your response. Have you ever tried B12 injections? Have you checked if your B2 levels are deficient at the cellular level? Have you tried taking selenium, iodine, or molybdenum? I'm sorry for all these questions, I'm feeling lost and trying to find solutions since, unfortunately, the doctors aren't helping. Did your neurological symptoms improve when your B12 levels decreased?

[Bertwills]

No to first 2 questions, though I’d like too.. I’ve taken selenium on & off for years, I might not need it now as I take T3 only & it’s recommended for conversion of T4 to T3. Molybdenum I took for 3 months without a noticeable effect. Iodine I’ve never tried. Too worried about effects. It’s a major ingredient of thyroid tablets so getting some everyday.

I don’t think my decreased B12 was noticeable. The things that have helped are improved diet, gluten & dairy free & digestive enzymes from Time Health. LDN was brilliant for a while, really reduced pains, stiffness & fatigue. Stopped working so well after a 2 week virus . Now I cycle on & off, 3 months off & then on until I notice effect waning. I get mine from clinic158.com. Self refer if you’re interested.

The “cure” for my pain turned out to be Xanax the benzodiazepine. Purely by chance I found out it works against muscle spasms. My dog was prescribed it, I tried it & it worked so I use it when in pain. Private pain consultant prescription though. Class C drug not allowed by NHS. Miracle for me after 30 years of pain.