Active B12 10 to 30%

[Katherine1234]

I am supplementing Jarrows B12 5000 mcg, 3 x a day for 5 months. My B12 blood test from the doctors has come back as 2000 high. I still have numb feet, creeping pins and needles over the left side of my face and head, extreme fatigue, short term memory problem, concentration problems, migraines with aura's, cramping feet and toes, numb fingers, sleep problems, ataxia and the lists go on and on. High MCV's, high MCHC, high MCH, high Monocyte count. Although other things have got a bit better.

If active B12 (useable B12) is 10 to 30% and if we take the 30% if lucky that would roughly make my useable B12- 600 - 20% would make my active B12 400 - 10% would make it 200 - could I still be B12 deficient even though doctor says my B12 is ok. I told her I was supplementing so results would not be accurate but she did not want to know.

Folate is 12.0 ug/L (3.4 -20.0) could 12.0 folate be too low and I should aim for top of the range? I supplement 400mcg folate a day.

Ferritin is 96.7 (20 - 300) could I possibly need more iron stores or is this ok?

Thank you so much for your help...

Katherine xX

[Gambit62 Administrator]

2000 is the top of the measurable range so likely that your serum B12 is much higher than this.

B12 deficiency is about what is going on in your cells not what is happening in your blood.

This forum is about a particular condition that causes problems absorbing B12 from food but after it has got into your blood it needs to get into your cells - active B12 is the amount of B12 in your blood that is bound to the protein that allows it to get into your cells - so that's the next step ... and then once it is in your cells they need to be able to use it efficiently which is a third place where things can go wrong (generally genetic problems which are rare).

So, serum B12 is a long way from being a gold standard.

Holo-T is also measuring what is happening in your blood so doesn't tell the whole story - unfortunately there isn't a test that does that.

Normal ranges are average ranges and most people that fall into them will be perfectly okay so it's not really possible to draw any conclusions about what is the right level for an individual. Your folate and ferritin look as if you should be okay though.

Your bloods show that you have macrocytosis but if the numbers are coming down then that means that the problem is healing but it does take a while. Some nerve problems take even longer to heal.

[Katherine1234 in reply to Gambit62]

In your opinion Gambit should I stop supplementing B12 for a while and get an active B12 test. I am feeling pretty lousy and although off the ground I am still housebound with the ataxia, chronic fatigue and POTS. I have been diagnosed with a non alcholic fatty liver and 3 rolling gallstones the biggest 6mm (I don't drink I cannot tolerate it).

My vitamin D levels are at 70.

I went gluten free for 2 weeks the gluten free stuff was just as processed and tasted like the bottom of a birds cage, so for 3 weeks now I am totally grain free...eventually I hope to be total ketogenic. As my IGA's were of the scale high. Thank you for replying to me Gambit xX

[Gambit62 Administrator in reply to Katherine1234]

you need to stop supplementation for 3-6 months to stand a chance of holo-T not being affected by the supplementation. Doesn't sound as if you are really in that space.

[Katherine1234 in reply to Gambit62]

I had severe ataxia, nausea and could not eat, severe muscle jumps, brain not working right, migraine auras, severe chronic fatigue, numb feet and hands, lost 2/3 of my hair, the whole 9 yards :0( I felt like I would not have been here in another 6 months it was that bad darling I had to do something as my doctor was not. As my B12 was 600 when tested, she said you must be supplementing, I told her I was not, but she did not believe me. I think l have found a doctor who looks like he is going to take me seriously someone smiled on me in my darkest hour :0)

[Gambit62 Administrator in reply to Katherine1234]

hope it goes well with the new doctor

[Katherine1234 in reply to Gambit62]

Thank you :0)

[deniseinmilden]

You might find injections are more beneficial... Please try to get your first one at a health centre that could care for you if you had a very rare bad reaction.

You might benefit from a broad spectrum multivitamin and mineral supplement as well as your extra folate, plus potassium, magnesium and iron as these are all needed to make the extra B12 work properly.

[Katherine1234 in reply to deniseinmilden]

My doctor will not oblige me injections Denise :0( even those I have enlarged blood cells. I am waiting on results from a blood test last week and I am hoping to see they mght have gone down slightly after 5 months of supplementing.

I take selenium, vtamin E, vitamin C, pregnalone and cortex (for low cortisol), ALA, L-Carntinite, Magnesium, taurine, fish oils, vitamin K2, jarrows B-rights, Jarrows B12, vitamin D, copper, zinc and boron, is this all ok?

I don't take iron.

Thank you for replying darling xX

[deniseinmilden in reply to Katherine1234]

All sounds good to me. Would a broad spectrum multivitamin and mineral supplement cover all/most of those things in one tablet (easier and cheaper) and give you a couple of other things too, like iron and potassium? All I can suggest is do what you feel is best for you.

Maybe read say Sleepybunny's recent replies about getting injections out of Drs and getting help on it from the PAS.

If not could you get one done privately to make sure you are fine with it and then do your own there after? It might sound a bit daunting but I can assure you it's well worth it to get your life back.

See replies including Wedgwood's for excellent advice on self injecting.

[Katherine1234]

I would love a broad spectrum to cover vitamins and minerals Denise it is so boring swallowing this lot a day :0( I am following Dr Sarah Myhills protocol so it calls for quite a lot....I forgot I take Q10 as well. I bloody rattle :0)

Thank you for heads up darling off to look at Sleepy Bunny's and Wedgwoods pages xX