Confused

[Caroline50]

Can anyone please advise as I'm totally confused !

For many years have had constant pins and needles first in legs only now also in arms and fingers. Also constant tinnitus in both ears, mouth ulcers every week, walking like I've drunk 5 bottles of cheap wine, breathlessness, relentless fatigue, vision problems, burning feet etc etc. Gave up many years ago trying to get a diagnosis until last Dec it was pointed out my iron was too low. Then found symptoms of B12 deficiency and had the proverbial eureka moment.

Iron is 17 (15-300) but serum b12 is 250 (180-900). GP wasn't interested until the clinical efficacy of serum b12 test was pointed out. They agreed to IF test but this has come back as negative. From the literature I understand how both tests are notoriously unreliable so I paid for a private holotc but this has come back at 70 (25 - 165). Granted I never had MMA etc tested but I've gone from being convinced that b12 was the cause of all these stupid symptoms to not knowing what to think.

If anyone has any suggestions / thoughts / guidance I would be extremely grateful as I'm now at somewhat of a loss. Many thanks

[Meblue]

I’m in the same boat. Same symptoms as you and my B12 was 560 even though I’m convinced I have a B12 issue because nothing else makes sense with my symptoms. I’m just trying to do this on my own with loads of B12 foods and maybe supplements. I know many people on here have just taken matters in their own hands because doctors don’t think anything above 150 could cause problems.

[deniseinmilden]

All tests are more accurate if they are repeated as intake from food and depletion from exercise, plus other things, do have an effect - and it is possible to get an odd rogue test too.

That said, (and obviously depending on lab ranges) while a serum test result of 560 is well above the range that is usually associated with deficiency symptoms, there seems to be quite a lot of people reporting quite severe symptoms with test results up to 250 - especially if they have been deficient for a long time.

There doesn't seem to be science to support it but if you just look at the anecdotes, it's almost like our bodies get ultra efficient at running on nearly none and so take up very little from our blood - so our blood levels aren't as low as our symptoms suggest - but in doing so the deficiency actually breaks the cellular uptake mechanism, along with our nerves, etc.

I'm not sure why your serum test result is on the low side but your holoTC test result is more towards mid range - although if they were done at different times, food and exercise, etc, could be factors in it.

ncbi.nlm.nih.gov/pmc/articl...

gives more insight into holoTC testing and suggests it may be a better guide than serum testing.

However... there are many nutrients involved with B12 use in the body and each is needed in plentiful amounts for the B12 to work properly as those of us who SI know - just because there's plenty of B12 sloshing through our veins and our test results are off the scale, it doesn't mean we feel well unless everything else is in balance too.

Have you had your folate levels checked?

Not only is this essential with the B12, it also produces similar symptoms.

Because it is possible to mask the symptoms of B12 deficiency with folate supplementation and B12 is so essential, it is important that you get your B12 levels up before you take a lot of folate.

I hope this helps a bit!

See Sleepybunny's past replies on how to get B12 from Drs and Clivealive's past replies on folate deficiency by going to their profile by double clicking on their name and looking under the heading "replies". Links to follow.

[deniseinmilden in reply to deniseinmilden]

Sleepybunny

[deniseinmilden in reply to deniseinmilden]

clivealive

[Caroline50 in reply to deniseinmilden]

Thanks for replying and the advice, appreciate it

[fbirder]

Have you seen a neurologist? That should help determine the cause of your neurological symptoms.

I would also think about getting and MMA and/or homocysteine test done privately. If your problems are B12 related then one, or both, should be high. It's Possible you have a rare genetic problem that affects of the two pathways that involve B12.

Once you've done the MMA/hCys tests then I would try taking methylfolate (400 mcg once a day) and any oral B12 supplement with at least 50 mcg (once a day). If your symptoms improve after a month or three, then you could try dropping one of them for a few months - but I'd be tempted to just carry on taking both.

If the MMA/hCys come back normal and the oral supplements don't help then you really need to see that neurologist.

[Caroline50]

Thanks fbirder for the reply. Yes I was referred to a neurologist due to restless legs. He was the one who said my iron was too low. When he did the vibration test there was no response at all in my left leg so he sent me for a MRI, had a letter back stating radiology had not scanned correct area and I would need another scan, but this never happened and I then had a another letter saying all ok? But looking at the images they only scanned the c spine (neck) 🙄

Re genetics my father had same symptoms and my son has just got tested as he has started having paraesthesia, tinnitus and gastric problems and has low folate <2 and low b12.

All my symptoms fit into b12, (folate is 5 so ok), and blood tests over time show b12 and serum iron are falling e.g. b12 - 282 (2015) and 250 (2018), iron was 41 (2006), 33 (2011) and 17 (2018). But the holotc result has thrown me a curve so not sure anymore. My nice simple theory has gone somewhat out of the window...

[Wowo23]

I believe b12 tests under 300 are deficient. Most docs only see "within normal range" I would ask that they try loading doses and follow up jabs for a few months and see if you have any improvements. It's completely safe and at least you'd know for sure one way or the other. Best of luck