B12 folate

[Milley2]

If your taking alter day b12

And a folate supp of 400 ug on these days or few times a week

Would there be any reason fir increased neuro issues like ear ringing humming pressure increase once taking the folate after Mathis has happened a few times now ?

Why

Shoukd I nit take it

Why did it increase or worsen it to bed bound awFull

Or may he folate level ti high ?

And aggitated the b12 symptoms ? I heard it can do that m

[Foggyme Administrator]

Milley2...reply here to your previous post and the one above...sorry, but going to have to be necessarily brief...

1) Your increased neurological symptoms are likely due to stopping B12 injections for 17 days.

2) Your GP is wrong. High levels of serum B12 do not cause the symptoms of B12 deficiency. Everyone who injects vitamin B12 have high levels of vitamin in B12 - because huge amounts are being injected directly into the blood stream (mine are always over 2000). All the guidelines state that that once injections commence, it is not necessary to measure serum B12 levels (levels post injection tell you nothing about whether deficiency is (or was) present and can't tell you anything about how much repair has taken or is taking place.

3).Most importantly...the British National Formulary (BNF) - doctors prescribing guidelines - state that those with neurological symptoms (that’s you) should have injections every other day until no further improvement. This can take many months and some even have to remain on this intensive regime to keep well and stop symptoms returning. (Many GP's are not aware of this intensive treatment regime for neurogical symptoms - your GP appears to be one!).

4) You say that your folate levels are 17 - this is at the very top of the reference range (it usually goes to 20 and they don't measure any higher). You don't need to take any folic acid. Over supplementing with folic acid can cause abdominal cramps, diarrhea, rash, sleep disorders - including insomnia, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects....including neurological ones (tinnitus being one). Emerging research indicates that long-term over-supplementation with folic acid can cause irreversible neurological damage.

I suggest that you:

A) stop taking folic acid - your folate levels are very high - you don't need to supplement.

B) do your B12 injections as per the BNF prescribing guidelines for those with neurological symptoms (every other day until no further improvement). Be aware that you may feel worse before you feel better (to do with neurological repair but nobody really knows why).

C) Keep going with that regime (alternate day B12 injections and NO folic acid) and don't change anything (constant changes make it difficult to assess how things are going).

D) Monitor symptoms by writing a symptom diary - it's easier to look back and see what’s changing - and what symptoms are getting better. Repair of the nervous system takes longer so these will be the last symptoms to get better.

Print this reply so that you have it to hand and can remind yourself of the main facts - it’s all to easy to forget when we feel so ill - and there’s a lot of nonsense written about vitamin B12 deficiency and it’s treatment (especially by some of the Facebook groups - sorry to say.

Just know that repair and recovery can take a long time, especially if the deficiency has been present and untreated for some time.

There are some here who have reported improvements as much as two years after treatment has commenced but be aware that long-standing untreated B12 deficiency can result in some permanent damage. But you’re not at that stage yet - just keep up the B12 injections and monitor symptoms carefully so that you can take heart when you start to see improvement.

Good luck.

[Milley2 in reply to Foggyme]

Thank you so much I will print this out this gives me done sort of hope

[Milley2 in reply to Foggyme]

I was also told when I start b12 injections it will quickly deplete my folate thats why to take it along side the b12 injections other wise my b12 jan is useless and will do nothing ? I stupidly listened and got really unwell with folic

Acid

It’s bern a nite mare

[Foggyme Administrator in reply to Milley2]

When I was first diagnosed I accidentally overdid folic acid supplements - made me extremely ill!

Having B12 injections does not automatically mean an increased need for folic acid, which is only required in the presence of proven folate deficiency, detected via blood test.

I know GP's are not always helpful but it’s always best to try and get folate levels checked to see if supplements are actually required.

Some Facebook groups give out potentially dangerous advice. Anybody who queries that advice or posts peer reviewed research papers suggesting that advice may be dangerous is thrown out of the group! 🤷‍♀️

Try not to worry... give the B12 time to work. Unfortunately, it’s not like taking paracetamol for a headache...results can take some time.

[Milley2 in reply to Foggyme]

I was folate low in June I say at 3.1 they Gp put me in 5mg folic acid daily So it was a proven folate abs b12 issue ?

Kinda went along with it

But felt so rough

Folate ok niw I dint take nothing I eat lots of cereal and veg and fruit

Now more so now

[Milley2 in reply to Foggyme]

I was originally low in June they have me high dose 5mg I had to stop after I week of it was unwell

[Milley2 in reply to Foggyme]

I also wonder on sub b12 inj into tummy area Would once the b12 goes into tummy irritate the inside tummy ie

If you have a timmy issue

Injecting into that area would it be harmful ?

[Milley2 in reply to Foggyme]

So would it be normal fir increased pain increased symtoms whilst injecting I feel worse it’s so hard my ears are burning hissing is louder I know some say worse before better but wow this is vile it’s so bad worse than before on loading dose so I must have fallen very low again It does also make you worry that is it the b12 injection making it worse I hope not as thy say it’s harmless I hope so what’s your thoughts please