Not b12 def now? : So there was a mix... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Not b12 def now?

Emmy1991 profile image
9 Replies

So there was a mix up with the blood tests at my surgery last week I went to test for h.plyroi and PA but instead nurse just tested my b12/folate again lol even though I told her PA. ugh! Anyway it says on my blood tests results b12 def unlikely. My doctor phoned me today to say we know your b12 high due to your injections. (4 loading doses) my orinigal level was 198 now shot up to 1809. Aswell my red blood cells have returned to there size as I did have a high MCV yay lol

Folates still low as I'm having a hard time taking tablets did to my stomach so doc said just try take them every other day. Actually I'm scared my stomach will be set off by any tablet. Wish I could inject it lol

She said we don't want to give you another injection (April) if your folates low

So am I still b12 def? How long will my level stay that high?

Written by
Emmy1991 profile image
Emmy1991
To view profiles and participate in discussions please or .
Read more about...
9 Replies
clivealive profile image
clivealiveForum Support

I don't know if this will help Emmy1991

google.co.uk/url?sa=t&rct=j...

wedgewood profile image
wedgewood

I just want to mention that on my journeys through the German online pharmacies , I have seen ampoules of Hydroxocobalamin combined with folic acid . That might suit your tummy better . Doubt whether you can get those at the surgery though .

Marz profile image
Marz in reply towedgewood

Same here in Crete - both are combined.

Gambit62 profile image
Gambit62Administrator

If all your symptoms have improved you probably aren't B12 deficient any longer but you probably still have a B12 absorption problem - which could be PA or h plylori or something else. If you have an absorption problem then your body will no longer be able to store B12 as it used to so you will become deficient again. This can happen well before the levels in your blood start to fall into, let alone under, the normal range, and its likely this will happen long before you get to the point of showing any signs of macrocytosis again - which is only one symptom of a B12 deficiency.

What needs to be treated now is the B12 absorption problem.

Emmy1991 profile image
Emmy1991 in reply toGambit62

I don't feel any different after having injections to be honest. I find that I don't have the usual B12 symptoms lol everyone mentions pins and needles I don't have that. I'm having tests done at the moment for things been refered to a Gastro. Awaiting my h plyroi and pa results. My next injection is April. Been thinking of SI. But dunno if my problems are all down to this.

Gambit62 profile image
Gambit62Administrator in reply toEmmy1991

well, you have enough B12 to have reversed the macrocytosis and must be managing to absorb some of the folate as well.

People are very different in how they respond to a B12 deficiency and how they respond to B12 injections. My main symptoms were actually depression and anxiety but I'd had them for so many years that I didn't realise this until I actually started getting the amount of B12 I really needed.

Sorry to hear about the eating problems in the past - certainly does sound as if there are other things that may be going on.

Does sound as if you have a GP that listens. Have you mentioned to him that you feel better for having gone glutten free. Yes, it may be the power of the mind but there may be something in it as ceoliacs can cause absorption problems including B12, folate and iron.

The amounts of B12 you had in the loading shots is enormous - enough to keep an elephant going for a very long time - so the levels aren't really raised that much in that context. Good that the GP recognises that the result didn't mean anything.

MariLiz profile image
MariLiz

Are you vegetarian or vegan? If so, you won't be getting any B12 from your diet. Do you have other digestive issues that might explain why your stomach isn't absorbing the B12? I hope your doctor will continue to treat you, otherwise this currently good level, will soon go down again.

Generally, once you begin injections any further blood testing is useless. The injections should continue for life.

Emmy1991 profile image
Emmy1991 in reply toMariLiz

No, but I've had eating disorder in the past. I had bulimia.

And I don't know what my stomach issue is at the moment. Took some antibiotics in Nov and was under a lot of stress everything started then. Feeling full when i eat, bloat, bouts of nauesa. It was really bad December it felt like all my upper stomach from the inside was swollen. I was constantly belching it was so weird and so hard to describe. Strangely enough since being off gluten I feel slightly better but doc didn't wanna do this test at all. I know you have to be on gluten to do this and they are gonna treat me next injection April I just need to try and take my folic

I can't believe it's that high I thought it would be 500 or something

How long do you think it will take For my levels to go down?

MariLiz profile image
MariLiz in reply toEmmy1991

I think everyone is different as to how quickly the levels will go down. Some of it will be used by your body and some is just excreted. What I'm not certain of is whether any is stored in the liver to replenish our natural stores. Sorry to hear what you have gone through, and I really hope you will feel better soon. Hope all the tests will show what is going on with you.

My repeat blood testing after six loading doses was done after four weeks, and my level was only around 600. My starting level was 176. I just think it's different for everyone.

Not what you're looking for?

You may also like...

Root cause of autoimmune B12 def

Hello- I was just diagnosed with PA and was prescribed injections (cyanocobalamin unfortunately)....
mchimes profile image

Just Starting My Journey with PA/Vitamin B12 Def. Insight needed.

Hey everybody, I'm a 31 year old Male who has been battling some health issues for years and have...

B12 functional def

Hi, I was diagnosed b12 and folate def Oct 2016. Received loading jabs over 2 weeks, then onto 12...
faras66 profile image

Help: PA test, hyperosmia & B12

Hi all, I recently had blood tests done for possible Hashimoto's & one thing that popped up was a...
kittysmummy profile image

B12 injections not working

I have pa I have b12 injections every 3months but I'm still so tired and stomach is bad constipated...
kyanah profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.