Palve: After suffering from vertigo... - Pernicious Anaemi...

Pernicious Anaemia Society

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Palve

Palv profile image
Palv
6 Replies

After suffering from vertigo, years of burning mouth syndrome, being diagnosed with diverticulitis and then 2 yrs of neurological pain, I’ve been told I can have loading doses of plus one every 3 months. I know it should be more if you’ve got neurological issues.

I don’t want to self inject. Can I take any form of sublingual pill to support the injections or does they have to be hydroxocobalamin the same as the injections?

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Palv
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6 Replies
Palv profile image
Palv

Also should I take folic acid?

OldmanD profile image
OldmanD

It doesnt matter which cobalamin although so many will tell ye Hydroxo . . . . . Cyno is used all over the world . . . . . . The Hydroxo or Cyno is only the method used to make and delivery the cobalamin as best I see and I have used both . . . . . If you have been tested and are not absorbing the first thing I'd sort out is B12 followed by Folic acid B9 in that order. . . . . If you take B9 without B12 and go back to your GO and get tested the results may be far from correct . . . . . . If you not absorbing and have got as far as your symptoms suggest you are likely to be way past the point of oral meds . . . . . .

bookish profile image
bookish

Hi, yes you can try oral or sublingual supplements alongside injections. Some get benefit and some don't. I got a slight benefit from cyano, a bit better from hydroxo although it makes me itch, better still with methyl (but not too much to begin with, as some definitely don't get on with it) and I now use hydroxo, methyl and adenosyl. As OldmanD says, definitely B12 first then folate, and again the type (vitamer) may make a difference to you. My vertigo and burning mouth resolved along with reduced neuropathy when I added methyltetrahydrofolate liquid to my B12 supplements - small dose only, start low and slow. Folic didn't help me and my serum folate looked high, so I wasn't using it well (came down with the methyl forms of B12 and folate). You could try adding magnesium as well (slowly.....)

Nackapan profile image
Nackapan

My vertigo went .Am left with a vestibular disorder though.

Only take modest amounts of folic acid after b12 starts.

Folate is usually tested ag the same time as serum b12.

You will then know your status.

Get a paper copy of your blood test results.

Vit D

Ferritin are common to get low too.

I trued a sorts of b12 sublingual% tablets / sprays.

Spent alot if money.

They didn't help me redundancy b1e I hectikn frequency.

See how you get on with your 6 loading doses.

8 weekly at least shoukd be given with neurological symptoms.

Hooe it goes well.

NorthallertonBob profile image
NorthallertonBob

From advice read and verbally given to me: If ones stomach does not produce Intrinsic Factor then taking B12 tablets will not / cannot be absorbed into the body. The only method of B12 absorption is through injection. To my mind taking tablets will not do any harm so similar to drinking a glass of water when not very thirsty, no harm will come to you. My GP friend did inform me that if this was the 1950's we with Pernicious Anaemia would prematurly die. Fact. Hospitals used to make patients eat raw liver in an attempt to get B12 into the body.

OldmanD profile image
OldmanD in reply toNorthallertonBob

Liver wasnt only within hospitals I remember my grandfathers generation eating very lightly cooker liver near to every day. . . . . . Cyno was first available in the 1940s. . . . . . Raw liver was discovered to help a prized dog that was ill to recover and it moved on into humans. . . . Anything but die a horribly slow death. . . . . Hence the Pernicious in the name. . . . . .

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