Feel like I'm losing it- b12 deficiency

[ArtfulPinkBird]

Hi all,
I don't often post but was hoping some of you may be able to share your experiences. I have been feeling out of sorts for some time now, it started with increased fatigue and hair loss a few months ago along with muscle twitches and cramps. More recently, I've been feeling out of breath and am having daily episodes of fast heart rate and most nights, I am woken by my heart pounding. My anxiety has shot through the roof and I feel constantly wired and on edge. I've had a referral into cardiology made by the GP due to the palpitations and have had a couple of ECGS already which showed sinus tachycardia, however she also tested my b12 levels which came back at 160, which I now understand to be very low. I've got more bloods tomorrow to test for intrinsic factor antibodies alongside a lot of other things, and I've ordered high strength supplements to start as soon as I've had the bloods done tomorrow.

I guess my question to you all is, for those of you who have had a confirmed b12 deficiency, does this sound similar to your experience? I feel like I'm losing the plot! My heart is constantly thudding in my chest and my anxiety is through the roof which is unusual for me. I'm always freezing cold and seem to need to take a deep breath every few minutes as I don't feel like I can get enough air in! I am due to begin b12 injections but the GP wants these tests doing first before they start as they may affect some results I assume. Help me figure out how to survive until then- I've had insomnia for months now too so am beginning to wonder if that's also linked. Thanks for reading.

Forgot to add, the GP doesn't think the palpitations are linked to the b12 hence the cardiology referral, but is this something any one else experienced with a b12 deficiency?

Anyone?

Every single one of those things are symptoms of b12 deficiency. You'll likely have loading dose injections and will feel a lot better within a week or two of those being complete.

OP I had terrible palpitations and felt so ill generally. I went to GP who tested B12 levels which were 112. I wasn't offered injections (intrinsic factor test came back fine) but was given supplements.

It has taken a very, very long time to feel better. My B12 is still on the low side. I should have pushed harder for injections, but I just felt so rubbish I didn't have the energy.

You are not losing the plot, it is incredible how ill B12 deficiency can make you feel. A friends father ended up in psychiatric hospital because his levels were so low.

Have you had thyroid and Vit D tests. All often go hand in hand.

Push for the injections!

I'm so sorry you went through that and that you weren't offered the jabs. I have been offered them, however due to the GP wanting to test a few more things first I'm unable to start them until after the bloods are done as it may skew some results. I'm not sure when they will happen though as I've not been given any appointments so I will chase this next week.

It's unreal how poorly it can make you feel isn't it. Yes they have tested what feels like everything, intrinsic factor I've just had done today along with a complete blood count. The GP did vitamin D, folate and iron all at the same time. Iron is slightly on the low side but vit D and folate are ok, low- normal.

I have started using a b12 mouth spray so fingers crossed I might see some small improvements before I get the injections. Thanks for taking the time to reply.

Thank you for your reply. Yes I believe the plan is for the injections to begin now I've had the last lot of bloods done today. I'll chase this the beginning of next week if I haven't heard anything by then although I'd imagine the GP is waiting for my blood results before she books them in.

Definitely take the jabs.
If you have neurological symptoms such as brain fog, muscle weakness, you should have jabs every other day until no further improvement. Push for this.

What is your ferritin, folate and hb? They all work together.

My b12 was 140 in summer and ferritin 10. I felt amazing after loading doses but I should have had the neuro protocol because the improvements didn’t last.

Im now going privately for an iron infusion and b12 for 10 weeks. I really hope it helps!

Hope you’re feeling better soon. Go armed with NICE guidelines.

LittleLapwing how do you access the jabs privately, please? Do you have to provide proof of deficiency?

I had all of these symptoms when I had B12 deficiency. My level was 153. I didn't know how I could ever feel better, but regular B12 injections did the trick.

phone them tomorrow. dont wait. youll feel so much better on the jags. if they won’t give you them providing you take a recent blood test result to prove youre under their threshold superdrug and local chemists can offer you the jags.

i paid £25 during lockdown when i couldn’t get a gp appointment and i wasn’t for feeling shite again. my tummy and digestion isn’t right either when i’m low.

the nhs in scotland gives you them three monthly. i got mine moved to two monthly as i run out and start feeling awful again. we don’t absorb things as well as we used to as we get older. thats what happened to me.

im also on magnesium i buy myself for calf pain and folic acid on prescription.

I made an appt with a specialist in B12 and iron anaemia. I have private insurance so I’m doing it through that, def push through the NHS first!

How do you prove to super drug or boots you have a deficiency, would showing them my NHS app with the blood results in be enough? I did look into this as I'm desperate if I'm honest but it said it needed to be a written letter

I have jyst read that Boots do their own B12 test and will give the injections based on the results of that.

There is nothing to stop you taking high dose B12 supplements, but best to take the methylcobalamin version rather than any other. Some people have a gene mutation which means they can't process the other (?cyanocobalamin) type. There is plenty of information on the health unlocked forum.
I take high doses B12 and D, I have an underactive thyroid which became apparent in perimenopause, although sadly was told by various NHS doctors/consultants they couldn't find anything wrong/it was all on my head. I was on my knees. So I had to find a holistic doctor who set me on the right path. Vitamin D: 10000IU winter, 5000IU summer, good normal levels
B12, as part of a B complex capsule 150ug daily. Any excess is excreted by your body.

My levels when the GP orders blood tests are always good rather than high or above range even on those doses.

However ideally you need to buy better quality products than what is usually available in the high street. Again the forum could help you with which brands to look out for. Or there's bound to be a Facebook group.

once you get this sorted, you will feel so much better.

i presume the app is all you need but give them a ring. or your nearest pharmacy who does it. They basically just need to cover their backs. You couod do a dump and email it to them if needs be.

However id phone thw gp today. i’d beg them for help as you feel so awful. maybe a gp could quickly look at the results and allow the practice nurse to do the jag? it’s easier to get appointments with our nurse these days than our doctor so that might help?

if no joy i’d be googling whi does the jags near you and phoning one of them to see what evidence they need.

There is a B12 Wake Up group on facebook which has lots of files with information and will help you advocate for yourself with your GP. It is good news they are testing your IF to get to the bottom of it, and if you can hold out for a few more days worth doing so until you get your results as supplementing now could possibly impact any further tests.

My GP refused to test me further at all ☹️ because my B12 serum was in range (this can happen especially when taking supplements and still be deficient). I was getting significant b12 deficiency symptoms (after 8 years on omeprazole). With no support from GP I bought ampoules of B12 from a European pharmacy and I injected myself at home every other day for 3 months, then monthly for several months (and also took the cofactors) and my symptoms are now mostly gone. I am off omeprazole now so hopefully will be able to absorb again and switch to oral supplements.

Supplements won’t help if you don’t absorb b12. Push for injections

@ArtfulPinkBird I know this post is old but can I ask how you're feeling now?

Can you tell us what good products you use??