B12 is 110, D is < 7 and anemia - Pernicious Anaemi...

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B12 is 110, D is < 7 and anemia

GigiWA profile image
24 Replies

Hi, My B12 level came back as 110, and my D is less than 7 (I'm guessing they couldn't measure it?), and, of course, I'm anemic. I'm now giving myself weekly 1ml shots of b12. But, to be honest, I am still feeling very bad. I've just had my second one yesterday. I read someone else's post that they received a "loading" dose of many shots over the first couple of weeks, but my doctor didn't say anything about this. did others do a "loading" dose? Should I be feeling improved after 2 injections over 2 weeks?

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GigiWA profile image
GigiWA
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24 Replies

Hi Gigiwa,

I am not a health proffessional but have had PA for 23yrs ish. I doubt you would be feeling any benefit at all. Logically because you are so low. I also increase my dose of B12 injection by taking oral supplement. Maybe, this will speed up, your 'feel good' factor?

Lucy12345 profile image
Lucy12345

Loading doses are advised . See point 6 b12deficiency.info/what-to-...

6 doses in 2 weeks . But if you have neurological symptoms it should be every other day till improvement. If you do loading doses you will need to increase your potassium intake (either supplements or food) . Recovery might take a while with your levels, and you might want to take a b multivitamin supplement as well to help the B12. Have a look around the site I linked to. Very helpful. (Uk based )

fbirder profile image
fbirder in reply toLucy12345

if you have neurological symptoms it should be every other day till improvement

until no further improvement

Lucy12345 profile image
Lucy12345 in reply tofbirder

Thanks! That's what I meant to type.

clivealive profile image
clivealiveForum Support

Hi GigiWA are you in the UK? If so, whatever is your doctor playing at! He/she should be prescribing B12 injections as Lucy12345 has said.

Now you've started injections you need to keep your folate level high as this helps process the B12.

Do you know why you are so low in B12 and D?

ndodge profile image
ndodge

Hi gigiwa,

I agree that you should have shots every other day with a level that low! You might even need 2 rounds of loading doses to get your levels up faster to feel better and avoid damage to your system.

It is not surprising that you don't feel better as you really do need more b12. I am not a medical professional - just going on personal experience and information I have learned on this forum and by reading a book entitled Could It Be B12 by Sally Pacholok and books by Martyn Hooper, founder of the Pernicious Anemia Society based in the U.K. You might want to check those books out, they contain lots of good & important info.

All of the other supplements mentioned are important as well.

I wish you the very best with feeling better soon. If you read the postings from this forum everyday you will learn so much, too.

Take good care :-)

Paulaw22 profile image
Paulaw22

You should be given a loading dose over one to two weeks then your bloods done again. If the tests come back ok you don't need any more but if it is still low you will need them for life. My GP did mine so he knew how much was being given over a stipulated time so I could be retested. My surgery do my injections and my bloods are done regularly. Not sure that you should be doing your own at this stage?

fbirder profile image
fbirder in reply toPaulaw22

You should be given a loading dose over one to two weeks then your bloods done again. If the tests come back ok you don't need any more but if it is still low you will need them for life.

If the tests don't come back within the 'normal' range after 2 weeks of loading doses I'd be most surprised. Any blood tests done after injections start is pointless (see the relevant section of my summary for details - frankhollis.com/temp/Summar... -)

GigiWA What you need is to find out why your B12 was so low (and 11 is the lowest I've ever heard of). For nearly all causes of B12 deficiency you will need jabs for life. Only if your deficiency is due to a temporary cause (veganism, nitrous oxide abuse, metformin, PPIs) can you expect to recover and no longer need supplementation. Again, my summary has more details.

catherinejordan profile image
catherinejordan

3x injections for 2 weeks (1 ever other day)

Then weekly shots by your doctor till you improve

fbirder profile image
fbirder in reply tocatherinejordan

weekly shots by your doctor till you improve

Not quite what is recommended in the UK. For people with neurological involvement it's -

Loading doses 3 times a week - until no further improvement in symptoms - then maintenance doses every 2 months.

Gambit62 profile image
Gambit62Administrator

Sorry but 11 would be an incredibly low score for B12 - to be honest I'd be surprised if any machine was actually calibrated to read that low - do you mean 110?

Different countries and even different regions within a country will use different protocols - if you are in the US - generally using cyanocobalamin - the regime for loading doses is very different from that recommended by NICE and BCSH in the UK where we use hydroxocobalamin - mention that just in case you aren't based in the UK. Even in the UK there is some regional variation though that doesn't stop you drawing your GPs attention to the general guidelines in the hope that they will consider following those.

You can find the BCSH guidelines here

bcshguidelines.com/document...

Treatment regimes are on p8

Basically they are as quoted in other responses.

GigiWA profile image
GigiWA in reply toGambit62

I do, sorry for the typo and thanks for the reply.

ruffnut profile image
ruffnut

My B12 was 98 when first diagnosed and the doctor gave me an inj a day for the first 7 days. You definitely need more.

scorpiojo profile image
scorpiojo in reply toruffnut

I had 94 😊 got one injection 💉 every two weeks for four now every 3 months... I think my GP gets his info from The Dandy comic! I got my head together by my fourth jab and gave myself my loading doses... After 14 I think in total I'm still waiting for the energy 😞.. You should at least have the proper loading doses and try and supplement yourself if you want to wait for the 3 months to tick by... I couldn't be assed to row with him, and sit in a waiting room full of ill germy folk so started to inject myself... I appreciate that's not the right way, or for some feasible, but with a dodgy thyroid etc I'll pick my battles with GPs for now... Hope the advice from others helps x

ndodge profile image
ndodge in reply toscorpiojo

Wow, Scorpiojo, 94 is low, can't believe you weren't getting more b12 & more often than that from your doctor! Glad you took things in your own hands and are getting what you need. Your energy will return, I bet, if you keep on with the loading dose schedule. Just a guess but with such a low number, you just probably need lots of B12. :-)

scorpiojo profile image
scorpiojo in reply tondodge

I've had 14 jabs 10 myself my fatigue and the lag at 3 is terrible x

Daisy77 profile image
Daisy77 in reply toscorpiojo

Mine too, or maybe it's the Beano!. I got a double dose injection and told to come back in three months. When I questioned that he said I would be ok. Definitely PA...big fat red blood cells, parietal antibodies in the stomach, feeling like walking dead. So I am taking an excellent B complex supplement , from Garden of Life, and 1000 mg sublingual daily. I am beginning to come back to life.

scorpiojo profile image
scorpiojo in reply toDaisy77

you must tell me the b complex tablets full name.. I bough cheap I think.. I use Solgar b12 in-between x

Daisy77 profile image
Daisy77 in reply toscorpiojo

Garden of Life Vitamin Code raw b complex. They are all natural with no nasty fillers. Brilliant. I came across them on a trip to the USA but find they are available on Amazon. I know that they are good because when I stopped them for a week I went downhill fast. The same company makes a raw D3 as well which I have just begun.

ndodge profile image
ndodge in reply toDaisy77

That's the brand of B complex I use, Daisy77. I use the Food Based B complex. Less upsetting to the stomach. Also, I only take one at a time- says take 2 but that is too much for me and makes me feel a little sick.

So glad you are feeling better!

Daisy77 profile image
Daisy77 in reply tondodge

Thanks, ndodge. I only take one as well. But I also take the methyl sublingual, 1000 mg and methyl folate. Where did you find them? Have you tried their other products?

GigiWA profile image
GigiWA

Hi Everyone, thank you all for your replies. I appreciate that you took the time to answer me. I have another appointment in a couple weeks and will speak with my doctor about loading doses. And, I apologize for my typo, I left off the 0. I actually remembered it wrong - I'm having memory problems, too, and had to go look at the results again.

Gambit62 profile image
Gambit62Administrator in reply toGigiWA

No need to apologise for the typo - the memory and brain fog are part of being B12 deficient so we are all there and we all understand.

It took me a while to get better.

Hope you can get your GP to listen and follow the BCSH guidelines on loading shots. Do you have someone you could share the materials with and could go to the appointment with you?

Also would be a good idea to list all your symptoms and monitor any changes if you aren't doing that already.

You can find a list of symptoms here

pernicious-anaemia-society....

Sleepybunny profile image
Sleepybunny

As Clive asked,...Do you know why you are so low in B12 and D? See link below for possible causes of b12 deficiency.

b12deficiency.info/what-are...

b12deficiency.info/what-to-...

Have you been tested for PA (pernicious anaemia)?

pernicious-anaemia-society....

Have you ever been tested for Coeliac disease?

coeliac.org.uk/coeliac-dise...

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