B12 only half the battle -- and an odd symptom

[vagabondbeauty]

Back story: I was B12, Folate, Vit. D deficient with extremely low Ferritin (9). These deficiencies have been going on for years and docs were pretty clueless, made me feel like I was a drama queen about it all, and I had an allergy to B12 shots. Was finally sent to a hematologist who was ON this - she caught the low ferritin and was extremely concerned about it and convinced me to do venofer infusions. She also sent me to an allergist to be able to tolerate the B12 shots.

So I made it through all 5 iron infusions through February and I have to tell you, treating this low ferritin has made an epic change in how I feel. It was slowly like I just had more and more endurance - I could do things for a longer time without having to rest. I didn't feel so "tired to my bones", migraines went away, hair stopped falling - I honestly hadn't realized how bad I was feeling before until I started to get a bit better! I'm not 100% and may never be again as this was going on for so very long. But she retests every few months and says if I fall below 50 again, we will just keep infusing to keep it over that number!

B12 shots and I don't get along too well. I can tolerate them now but I haaaaate the way they make me feel. Sleepy and edgy at the same time for a few days. I am injecting sub q at home and split the does into twice a month to try to limit side effects. Here's the weird effect --

When I have B12 shots I GET geographic tongue. Now my tongue does swell and have issues when my B12 is too low but the shots GIVE me geographic tongue for about a week post shot... Is this a thing that happens to anyone else? Any ideas why it would happen? I hate B12 shots as it is but this is just so weird since low B12 usually causes this, then I get a shot and it causes this. Strange.

[Sleepybunny]

Hi,

I just wondered how your folate levels were now.

I have fissured tongue which is related to geographic tongue. I am convinced that it was caused by B12 deficiency because after many years of treatment the splits have partially healed.

Have you had tests for the other B vitamins?

NHS link about tongue conditions

nhs.uk/conditions/sore-or-w...

I found a few articles when I searched online for

"geographic tongue b12 deficiency"

" geographic tongue B vitamins"

Might be worth searching forum posts here for "geographic tongue".

Some forum members report iron, folate and Vit D deficiency as well as B12 deficiency.

Has your vitamin D level been checked?

I'm not medically trained.

[vagabondbeauty in reply to Sleepybunny]

I am low in folate and vitamin d as well. Latest folate went up a bit so that was good. They have still not found a reason for these deficiencies, and I had tons of stomach tests. Lat one is a pill cam and I have to get an xray and am waiting on that for a bit because the last tests made me feel so bad.

Could the B12 be bringing my folate down right after I inject? I'm just not sure why the injections would bring on the geographic tongue unless it's messing with a different vitamin -- or my body just hates b12

[Marz in reply to vagabondbeauty]

B12 and Folate work together in the body - so good levels required - at least mid range. How much VitD are you taking and what was your test result ?

[Hectorsmum2]

I presume you have had thyroid bloods taken at some point. it might be worth posting them on thyroid UK with a list of symptoms to see if something thyroid might be the underlying cause of all these deficiencys.

[WIZARD6787]

I had severe B12 symptoms at age 10 and experienced both seizures and fissured tongue.

B2 is only part of my solution. Without B6 in the form P5P I suffer. If I reduce or stop taking B6 I suffer.

I am not worried about the effects of taking 5 grams per day for a year to 18 months of other forms of B6.

[qwertystar]

you need 5mg of folate/folic acid while on regular b12 injections