Log in
Pernicious Anaemia Society
16,620 members11,523 posts

Am I burning through my B 12,,,

Hello All,,,five months ago I found out about my PA. Beening an overachiever I also had to have an iron absorption disorder along with it. I had all the symptoms of PA, so no need to go there.,,,

My GP has not been exposed to PA, so he has been very good to me. He recommended 30 days of loading doses (120 B 12 level) and then a blood test. B 12 levels went up to 1200 and I went to one shot a week. At the end of a month my levels went to 600. My GP was hoping my iron would go up, but it did not. Two rounds of IV iron and my levels went up to 300 ( ferriton was at 9 to start). I went back to work and start to crash (symptoms began to return) by day five prior to my next shot.

I was advised to hit myself twice a week( by my hematologist) to see if things would get better. Well,,,, by the third day I started to crash,,,,I am now on every other day with my shots. I hit myself so I'm ok with the shots. I work an assignment that requires me to workout five days a week. I run six to eight miles ever other day and do regular workout in between. If I want to stay at my assignment I must maintain physical requirements as well as other stressful duties.

Sorry for the long post but hears the question,,,am I burning through my B 12 because of my lifestyle, or did I damage my system from not catching my PA sooner.

I had the symptoms for about eighteen months but brushed them side until I knew I had to talk to my wife and GP about them.

Any help would be greatly appreciated,,,

As my wife say's,," its a great day for a great day, go take a shot!"

7 Replies
oldestnewest

Hi 4154 do you have any idea what your Folate level is?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

5 likes
Reply

To be honest I wouldn't worry about how frequently you need the shots - listen to your symptoms and go with those - and if it ends up being daily it ends up being daily - there are even people out there who do it more than once a day.

I find that I seem to get through a lot of B12 but my levels also seem to need to be well up 2000 for me to feel okay so don't think it is entirely about 'burning through B12'

Some people respond to high levels of B12 in their blood by stopping the mechanism that allows B12 to pass from blood to cells. Its a bit like building a dam and if you keep your levels really high then enough trickles over the top into the cells - and that is what seems to be going on with me. What that level is is going to vary from person to person ... and there is a bit of me that suspects it may even get higher as you recover from deficiency (and immune system gets stronger - as the reaction is an auto-immune response).

The rate at which you lose B12 (excess is filtered out by the kidneys) gets higher as the levels in your blood get higher so likely that most of what you are injecting is really being 'flushed away' rather than burnt up.

Personally I find that topping up frequently with nasal spray can be very effective - also use some sublinguals - so that would be something you could try if carrying around needles etc is problematic.

6 likes
Reply

your comments on the falls in levels do imply that your kidneys are at the very efficient end when it comes to removing B12 from your blood.

3 likes
Reply

What type of b twelve are you using? Methylcobalamin is the best type on a one ml. Twice a week dose....initially injecting every day with this would be alright but after that a maintainence dose of one ml twice weekly should be enough although everyone is different and only you can judge the amount you believe you need ..... as for your iron absorption problem I am not sure that oral iron medication will do any good .,.....you maybe need some more investigation into that..may be some other underlying cause .. As for your running I don't believe that should make any difference...what about diet?....the main thing would be the type of b 12 you're using try methylcobalamin if you are not already using it

Reply

One thing more that I would say if parietal cells are not working properly in your stomach ..for me taking oral b12is useless as it is not absorbed

1 like
Reply

thank you for your comments,,,I will look into the Methylcobalamin,it may help. For me, it would be useless to try oral medication,,, it"s just not absorbed in my system.

I will continue to jab myself and hope that things will be better in the future,,, thanks again,, and remember,

"it's a great day for a great day"

Reply

Make sure all other B vitamins are taken ,B6 and B2 are particularly needed but all of the B vitamins should be upped.

You could try by taking a smoothie of veg or shake but up the vegetables and fruit,lemons and coconut juice are quick ones and also provide much needed potassium and magnesium.

Reply

You may also like...