B12 or not B12! That's the question...

[philmews]

Hi friends,

I'm new to this site and am reaching out for some thoughts and advice please.

I was a very fit and healthy 39 YO male. Rock climbing, cycling and yoga were my weekly activities. I was assessed to have a metabolic age of 22! Mostly Vegan diet and raw vegan for about a year.

Since November 2016 I began to have a strange fatigue in my legs and arms. Then came pins and needles in feet and hands with sometimes scalp. Dead arm feeling sometimes. Tinnitus, brain fog and feeling very jumpy. I also have a history of anxiety and this has been much higher than my tolerated level.

Been to the doctors three times and had three blood tests. Each test came back 'normal' (although the first came back 'borderline' and was changed to normal when I asked what was borderline).

Was asking and asking for B12 bloods and finally got one. Upset to find it normal at 731.

Have been told by docs to take antidepressants as it's psychosomatic, however I was actually in a good place when my symptoms began to happen.

I've been taking a B12 mouth spray called Boost and it has been suggested to me that this could have an affect on my blood test?!?

Does anyone have any similar experience or any ideas of a next step??

I've had the neurology test and apparently I'm a fit and healthy man!!

Any help would be much appreciated.

Regards,

Phil

[Gambit62 Administrator]

a) did you supplement B12 at all before the symptoms kicked off. B12 is only found in animal products so if you weren't supplementing this would lead to a deficiency.

If you had been supplementing then it is unlikely that the low levels were entirely due to lack of B12 in your diet and you also have an absorption problem.

and yes the B12 boost will have affected the results

b) did using the B12 boost have any affect on your symptoms?

pernicious-anaemia-society....

c) I am assuming that your folate levels are good.

If you can get hold of them it would be good to review the full blood test results.

[philmews in reply to Gambit62]

Hi, Thanks of your reply.

Prior to the Boost, I didn't supplement with B12. Occasionally I'd take a tablet for a couple of days, however never for long or consistently.

The boost don't seem to have had any affect on my symptoms.

My latest blood test was:

B12 - 712 HBA1C - 5.3 GLUCOSE - 5 FOLATE - 12.1

I have no idea what this all means other than what I've been told, which is that these are in the normal parameters and that I was taking the B12 Boost prior to the blood test.

Maybe my symptoms aren't related to B12 at all and if not... Well.. back to the doctors

[Gambit62 Administrator in reply to philmews]

HBA1C and Glucose are test related to diabetes - HBA1C provides a guide as to how much your blood sugars are varying over time.

Yes possible that not B12 - difficult to say without range but 712 is going to be upper half of range so a good - result.

You definitely need to be supplementing B12 if you are following a vegan diet but would only need high levels if you had an absorption problem.

Other candidates would be VitD and thyroid.

[Lisahelen in reply to Gambit62]

There has been neuro(pins&needles) concerns mentioned by people suffering in the coeliac forum too.

[Gambit62 Administrator in reply to Lisahelen]

could be an undiagnosed B12 deficiency as ceoliacs is an absorption problem that can lead to a B12 deficiency.

response above was intended to be other conditions that have symptoms that cross over with B12 deficiency.

[Ryaan in reply to philmews]

Wedgewood is correct.

I also think it's an absorption problem and in need of injections.

You need correct procedure to stay off supplement B12 for a while before you get accurate blood results.

[philmews]

How do I get a more accurate diagnosis of B12 deficiency?

Started getting very dry skin on my face too plus really red cheeks and metallic tongue.

[wedgewood]

Even though you have high vitaminB12 readings you could be suffering from Pernicious Anaemia . If you have PA , you cannot absorb B12 thtough your stomach . You have to have B12 injections . The supplements you have been taking will give you high readings , but you might not be absorbing it . Also you need good quantities of folate/folic acid to work with the B12 . You need to have a test for the antibodies to the Intrinsic Factor which can prove PA . Even if negative, you can still have PA .

[Steap]

You never said if you began using the boost spray before your tests.

Any supplimenting prior to tests can bump up the blood levels but the damage will of been done prior to supplimenting.

My level was 153pg prior to supplimenting with b12 spray but jumped up to 700 after using the spray.

It's the length of time you we're running low that's really important as the damage creeps up on you.

The good news though is that you seem to be absorbing the b12.

Now it's just a long waiting game if it was indeed low b12.

Some people say it takes twice as long as it took to become ill to get better.

Seems like everyone reacts a little different though.

It can be a long time between starting to lose b12 and feeling the big kick (5 years + in some people) so take it easy and don't stop the b12 if you initially feel even worse. That happens when it's actually working.

Try upping foods with potassium in to lessen things. I find coconut water is great providing you have decent kidneys.

I found the methyl spray a bit overpowering but found hydroxycobalamin subliguals on Amazon.

I got 1000mcg but actually only take half each day. Many on here will say that's no where near enough but it seems to be improving things nice but slowly.

I was never a big meat eater, can't take dairy and had hpylori infection and suspected ulcer five years ago.

I guess that made it difficult for my body to get enough b12 from diet alone and with added stress from work I simply ran out.

Lots of funny things happen with low b12. All can be very worrying and won't help anxiety (low b12 actually causes anxiety too). You can get strange sensations, heart rate issues, visual disturbance, light aversion, sound intolerance, fatigue, insomnia, irritability. The list goes on ....

But the b12 does improve things

Stick with it.

I wonder if you'd maybe tried multi vitamins before hitting the boost spray. I think I made things worse by taking multi vit spray with a tiny amount of b12 but a good dose of folic acid in for two months prior to finding out my b12 was really low.

I fear the folic acid without sufficient b12 may of caused my neurological issues to get much worse.