B12 vits😉: Hi I'm new to this site! and would like... - LUPUS UK

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B12 vits😉

emziee profile image
emziee
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Hi I'm new to this site! and would like help going bk in June I had blood test done it come bk my levels of b12 was 182 #low they put me on 50mg of tablets and told me to return after 3months so I did then they did my bloods again and come bk 599 with tablets but he has took me off my tablets for 3week and already started to feel awthful again got more blood Friday but don't no what to do.... 😟

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emziee
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Pop007 profile image
Pop007

I was under the impression you couldn't overdose on b12. Many people take daily dose! Used to help lack of energy, depression, heart disease and more...

Freckle1000 profile image
Freckle1000

Hi.

Sounds like you need to take those tablets to me ? Perhaps just generally at a lower dose. Try and hold off taking any until you have your blood tests Friday. But in the interum, contact or leave a message at your Drs saying you want to resume taking the tablets "ASAP"

Make sure they keep monitering it and if need be, find out why you're having a B12 drop.

What happened to me does not sound relevant to you're situation, as your B12 pills seem to work really well for you - but i will drone on anyway:

I had my Lupus (SLE) attack my stomach lining, causing me to be unable to absorb B12, as the body absorbs it through that lining. I have to get my B12 via injections.

A lot of the time my system has been over flooded with B12 and it has not harmed me at all.

But not knowing your medical history I cant say wether this would be the same for you if you took to taking the tablets without your Drs ok.

In the interum, praps take to eating as much food as you can that is super high in B12.

I hope things get better for you soon.

emziee profile image
emziee in reply to Freckle1000

Hey freckle hope ur ok. And yes I think ur rite I need them the tablets seem to have bin work they worked to get my level up by some times my energy level where not good and some times,tired do u think I should take more for energy cause the 50mg twice a day has worked up to now just gotta wait to have blood done in morning without tablet seeing if my levels are staying or going up hopefully they are its just I'm 28 and single mom and energy means a lot especaully with kids. 😔

Freckle1000 profile image
Freckle1000 in reply to emziee

Hello emziee,

With your pathology numbers I dont think you have anything horrible to worry about.

You're not anywhere near a pernicious anemia state. ( what i have too )

Just somthing to keep an eye on.

If i were you, start phone harrassing your GP for permission to resume taking the stuff post blood tests - until you get another apointment.

Ive seen on other posts here that a lot of lupus people take b12 just as an energy top up.

If your dr. proves elusive -

perhaps go to a pharmacist and see what they think about resuming it ?

My b12 was 92 when i was diagnosed. It had gone on undiagnosed for way too long and I was having some obvious neurological symptoms. With injections every 2 months I'm pretty much fine now.

Unlike me back then, it really sounds like you have a good thorough Doctor on your side who would prevent what happened to helentad and me.

I know lupus can do you're head in from worry at all angles.

I suffer from anxiety myself.

I know its hard, but try not to think about the 500 different possibilities. If there's a lupus issue, try to deal with it on a one step at a time basis. Write down a plan of steps, shove it in a drawer, do the essential medical steps when nessesary, then for the rest of the time concentrate on your life away from the illness. Don't let lupus roll around and around in your head.

I know its way easier said than done but grinding

anxiety alone will wear you out.

I also hope you get some back up being a single mum?

ps. A lot of the people on this site (like myself) are old veterans who come from an era when medical care and medicines were not as good as they are today. Dont let us freak you out !

helentad profile image
helentad

Hi, sounds like you need B12 permanently. It could be caused by a couple of things which need diagnosing. Mine was/is caused by Pernicious Anemia and I now have monthly B12 injections as I ended up with paralysis below my waist and was diagnosed with Pernicious Anemia at that point. If your bloods are still low with this test then I would suggest you ask to be referred to find out the treason for the low count.

Hope you get sorted.

emziee profile image
emziee in reply to helentad

Hi Helentad I will wait to have my blood done 2maro I have bin doing researching on net as I'm a worrier so dnt help I also suffer with depression I have had since age of 15 and aniexty too so hopefully I get the rite help I need but the tablet was working to bring my level up so dnt no I'll ask the doctors maybe I'm not eating rite 😒

helentad profile image
helentad in reply to emziee

Don't worry they will get you sorted you just need to be firm and stand up for yourself. Could you see a different doc at your GP who might be better? I was on tablets but didn't take them in properly but that's because of other medical issues (my paralysis was extreme case so not likely to happen to most people). They had me on injection every 3 months but I keep up with different groups etc and in U.S. They have found that monthly injections can help, my GP is from Cheq Republic and they give B12 for loads of things so she saw the possible benefits and agreed. Look under B12 treatments and maybe print things out to show your GP. If your a worrier don't google symptoms etc.

I hope you get sorted and start to feel better very soon.

Purpletop profile image
Purpletop

Too much vit B12 can cause diminished potassium, which in turn affects the electrical workings of the heart and weird arrhythmia might occur. That's why you've been taken off the pills, so that not cause an imbalance. If, however, once you're off the pills the b12 level is dropping again, then it's likely that you will be put on some sort of program to replenish the levels without going overboard.

emziee profile image
emziee

Hi every! sorry I was out Christmas shopping I no its earlier but get it out the way and energy is a problem and thanks for your advice it means a lot I think my dr is good as soon and I was getting symptoms or pins and needles in feet he did a asap blood test put me on tablets straight away and said take them for 3month at first blood it cum bk 182 then after 3months cum bk 599 so now 2marro will have bloods and find out in a few days what's happening off the tablets and yes I try not to goggle but can't help it even no it's not good an purpletop that wat Dr said to much is not good so took me off them I'm glad I got good Dr cus of heard people have to demand tests from their Dr 😄

Freckle1000 profile image
Freckle1000

Wow. It sounds like you really do have an excellent doc. That's 90% of your worry gone just there. : )

emziee profile image
emziee

And freckel I'm glad my Dr take me seriously I'm worrying now tho about blood 2maro :( I'm sure I'm Dr noes best ... :)

Freckle1000 profile image
Freckle1000

Hi. Sorry about the delay in answering. (From Australia) Hadda sleep.

If you're anything like me you're probably dwelling on the worst case scenario that's googleable.

Neurons that make you worry are the worst.

Take some comfort in knowing if your B12 levels are low, its100% fixable.

I'm not very savy about the possible different causes but -

If its caused by a little bit of stomach damage, that's never ever going to worry you.

My entire stomach lining is near dead, (atrophic gastritis) but I have no pain or trouble digesting.

I take a bit of Nexium to help with gut acidity and the drug has no side effects.

Definately don't worry about this one - just feel like rambling: I also occasionally take some digestive enzymes, (creon) but this is for another problem all together and for me is optional. Just gives digestion/gut balances a boost.

Try and

get your Doc. to explain clearly what's going on and what the next steps are.

I hope whatever his reasoning is sounds reasonable to you.

If you don't think what he's saying seems quite right, ask more questions, gently keep him on his toes !

Sorry about the time lag, but tell us how it goes !

emziee profile image
emziee

Rare thanks he hasn't really said much his just said take tablets and come bk so I went today and had blood done aaarrrgghh I hate needle 😔but has to be done my problem is now wat do I do in the mean time as I'm not on no tablet I'm scared my levels may drop so I went to pharmeys and explain my doctor took me off the tablet cud my levels came up and I'm waiting for result but scared in mean time with my level they told me to take b complex pills till result but as I suffer with anxiety I'm worrying weather to take or not just it causes more damaged ....

emziee profile image
emziee

Freckle how long has ur illness bin going on from and hope u feel well ...😉

Freckle1000 profile image
Freckle1000

Hi emziee, : )

I think b complex vitamins are harmless as they're made up of small doses of a lot of different types of vitamin B's.

They'd probably help give you a helpfull energy boost.

Given that you're still absorbing B12 through the stomach -

I would vigorously jump up and down and tell you to have a Google at foods high in B12. and absolutely overdose on those foods until you see you're doc.

Via food, you're body will naturally sort out how much it needs to keep in the system so you wouldn't have to worry about potassium and and heart rhythm stuff.

Munch on some liver ! Whatever it takes !

How long is it until you see you're Doctor ?

emziee profile image
emziee in reply to Freckle1000

Hey freckle u say that but Dnt understand I only started getting fatigue and weak and lack of energy after being on tablets for 2months even no the tablet were bringing my results level up I felt still shittie so I Dnt undastand an im off the tablet now just can't seem to get things due to energy levelvis their a possible the tablet stopped working towards the end.....

Freckle1000 profile image
Freckle1000 in reply to emziee

Sorry, I really dunno.

I don't think the tablet could just suddenly stop working...?

Hoping your doc. Did a broad general check up with your recent bloods.

Freckle1000 profile image
Freckle1000

ps. & hello again.

I'm an old codger - 48 years old.

I've had Lupus since about the age of 14.

I've just recovered from a flare. and I'm pretty well at the moment. My only challenge is haggleing with Drs over some new medications i'm on. Managed to convince my specialist to let me take most of my immuno -suppressants at night so I can sleep through the dodgy side effects.

This has cheered me up no end.

With a bit of a tweak and a nudge, I feel like things will be back to normal very soon. : )

x.

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