Vitamin B12 deficiency

[Pipsqwark]

How long does it take for B12 Injections to work? I have just had my first one and have to have another 7 within the next 2 weeks.

[lsocher]

I was diagnosed with b12 deficiency. I thought I was anemic. Relatives thought maybe I had a thyroid problem. I started getting b12 inoculations, which really hurt a lot, but then I felt much better. Recently I discovered the patch- hey, it works for nicotine replacement therapy. Now I'm a happy camper.

 

I ordered mine at b12patch.com.

 

-LS/:hihi:

[Fidgety]

Just picked up on this old thread and thought I would add my twopenneth.

 

Pernicious Anaemia is the term used for b12 deficiency when it has been proven the cause is due to instrinic factor antibodies.

 

However, even without an apparent cause, b12 deficiency can ultimately be fatal.

 

Just because your GP tells you you don't have Pernicious Anaemia doesn't mean your b12 deficiency isn't serious.

 

There is also a problem in that the blood test done for intrinsic factor antibodies is unreliable. It's only about 40% accurate. People can have this test done a few times and prove negative, only to have another done that proves positive.

 

The other flaw is that the serum blood test used in the UK to measure the amount of b12 in the blood stream measures the total amount of b12. This, unfortunately consists of what they call 'active' and 'inactive' b12. Only the active b12 is available for the body to use. Hence, if 90% of the b12 is of the inactive form, then your blood test is only 10% accurate. So. If you have a blood test done that shows you have levels of say, 300. And, the acceptable level is 200. Although your GP will say your levels are normal, they could be as much as 90% out - which would make you extremely deficient.

 

Several other flaws occur, but the main one is that in the UK patients are only given an injection every 3 months. This is now being questioned as it's efficacy. NICE are reviewing the guidelines.

 

In Europe, most injectable b12 can be bought over the counter, and guidelines state it must be given once a month (or whenever you feel like it because it's only a vitamin and not on prescription) Yet here in the UK we seem to think that patients can survive for 3 months without symptoms returning.

 

Also you cannot overdose on B12. The World Health Organisation declared this back, I think, in 2006.

 

Pins and needles and numbness are signs of neurological damage and should be investigated.

 

Hope this basic info helps somebody out there.

Edited November 6, 2011 by Fidgety

[2001louise]

I know a month before my jab is due as my body starts attacking itself, I need more sleep, very ratty, very moody, like I'm pmt for a full month and I've asked if I can take it early. As I can't cope with the mood swings and I feel for my bloke and kids as they walk on tip toes incase I bite their heads off. Was told I can't have it any earlier as I run the risk of kidney and liver failure if I did.

[Fidgety]

If you've got a GP thats telling you b12 can cause liver and kidney damage then you're probably better off doing an internet search for Pernicious Anaemia and seeing what info you hit on for the UK.

B12 is a water soluble vitamin. What you don't need, you pee out. End of story.

Some people actually have B12 infusions from private doctors in an effect to restore their supplies and try to remylinate their nervous system.

 

If you were suffering from smoke inhalation after a fire, the medics would give you b12 intraveniously to neutralise the cyanide in your system. This would be in a volume hundreds of times greater than any 3 monthly jab.

 

Unfortunately medical knowledge regarding b12 in this country seems to be very low and as a result many, many people are suffering because of it.

 

As I said in my earlier posting NICE are now viewing the treatment as questionable. One of the questions they want answering is related to the cyclical cognitive function regarding the 3 monthly jabs. As you said yourself it becomes difficult to cope as the levels in your system drop.

 

Unfortunately, because of the lack of knowledge regarding b12, you really need to arm yourself with information. Do a search on Pernicious Anaemia.

 

You can also get sublingual tablets by searching the net or popping into a health food store. If you look for hydroxocobalamin or methylcobalamin on the label they may help you out.

Cynocobalamin has a much shorter half life, so if you can get the others they would probably be more helpful.

Edited November 8, 2011 by Fidgety

[Fidgety]

Just realised Louise that you're the one who posted back in 2008.

 

Please don't continue to live a miserable life just because your GP is ignorant.

 

As I said, you can buy injectible b12 over the counter in Europe. If you or any friends are going there, just get them to pop into a pharmacy. It's not expensive, in fact it's dirt cheap.

 

It's only a vitamin so it doesn't violate any customs regs.

 

Remember: if you lived in Europe you could get it any time you needed to!

[craigmason]

you can find help and support here

http://www.pernicious-anaemia-society.org/

[Fidgety]

... and there's me trying to be subtle cos I didn't know if links to other forums were allowed!

[craigmason]

they also have a facebook group

http://www.facebook.com/pages/Pernicious-Anaemia-Society/221232394585594?sk=info

[Fidgety]

Just thought I'd give this thread a quick bump since the matter of diagnosis and treatment of b12 deficiency and Pernicious Anaemia in Scotland is now going to the Government for debate.

 

The treatment throughout the UK is dependant on BNF guidelines.

 

Whether you have been diagnosed with B12 deficiency or PA - the end result is the same if you don't get treatment. It is fatal.

 

You also need the correct treatment.

 

If you are diagnosed, then it may be worth following proceedings or having a peek at the aforementioned society so you can inform yourself.