Insomnias d irritability after B12 jab - Pernicious Anaemi...

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Insomnias d irritability after B12 jab

browny52 profile image
26 Replies

I had my first B12 jab last week and now I can’t sleep and am feeling very irritable. Is this normal? Im due to get another one on Wednesday but not sure I should. Im trying to set treat after GP refused injections. I was treated for low folate but still felt awful. My B12 level was 259 and I was getting daily headaches.

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browny52
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26 Replies
Heididog20 profile image
Heididog20

Do jabs 8n morning. U need to do 6 jabs in first 2 wks as called loading doses. Then u could have every 2nd day to get feeling better as it can take several wks to months.

browny52 profile image
browny52 in reply to Heididog20

Thank you

jade_s profile image
jade_s

When first starting with treatment, it can get worse before it gets better. What country are you in? If in the US and on cyano, i believe you should get loading doses every day for a week. In the UK or on hydroxy, it's 6 injections given every other day. Are you self treating or going to a health spa for a shot or something else? No judgement, just recommendations will differ based on where/how you're getting injections.

Are you still being treated for low folate and/or have got a recent folate lab? Low iron can also make you feel worse. Please do post any recent labs you may have.

browny52 profile image
browny52 in reply to jade_s

Thank you for replying. My latest labs after 6 weeks on folic acid were folate off the scale and B12 277. I stopped the folic acid before my blood test in case it was that causing the headaches. I feel so awful and was getting daily severe headaches. My GP wouldn’t trial jabs so I got my hairdresser to do it as he does them. I felt a difference almost immediately. My head cleared. However it has completely disrupted my sleep. I feel really wired like I’ve had a mega dose of caffeine and I’m one week after now. I’m a bit scared to have a second jab just in case these effects worsen. I’m trying to eat foods with potassium and I take a calcium supplement with magnesium in. I’ve always had problems tolerating vitamins unless it comes from food. I was considering going the SI route if the jab was effective but am worried about how hyper alert my brain has become. Xx

jade_s profile image
jade_s in reply to browny52

I would do SI & the loading dose route if I were you. I understand your concern but with low levels only 1 jab a week won't be able fix much. I also got very hyper and couldn't sleep after my first, and then slept for 3 days straight after my 2nd one. After that it was a bit of a roller coaster.

Are you getting methyl b12 from the hairdresser? Methyl forms can make some people very irritable. I would go with cyano or hydroxy. Same thing for methylfolate, not everyone needs or can tolerate it.

jade_s profile image
jade_s in reply to jade_s

Also have you had a full workup for pernicious anemia and/or have other causes of low b12 been investigated? Are you vegetarian/vegan?

browny52 profile image
browny52 in reply to jade_s

I’ve had no work up for PI and my Gp won’t do it because according to her my levels are fine. I’m not vegetarian l. My hairdresser gave me hydroxy.I’m now wondering if all the nerve and pain problems I’ve been having for the last four years are all B12 related. Im going to have to self treat, but wanted to see how I was on a jab first. Im not sure im brave enough to SI but I think my hairdresser would be prepared to do loading doses for me. Thank you so much for replying xxx

jade_s profile image
jade_s in reply to browny52

I would have recommended doing the workup privately before starting jabs, if you're in a country where you can get your own labs. You can in the UK. Since you already started, you can't do mma or homocysteine but you could still get antibodies tested to check for PA. Intrinsic factor and Gastric parietal cell antibodies. For IF you will need to stop injections 2 to 14 days before the test, depending on the lab.

browny52 profile image
browny52 in reply to jade_s

I’m guessing if I wanted to do the other tests I’d have to be off the injections for some time? Im not sure I could cope with the symptoms. I did say to my GP about getting private tests but she said you can’t get private blood tests and then be treated on the NHS which is why I just went ahead and had a jab to get some relief xx

jade_s profile image
jade_s in reply to browny52

I completely understand, i have to self treat as well. Yes, for mma, homocysteine, and active b12 you need to stop all b12 for several months. But they are only used to diagnose a deficiency. Since you're now SI, it is moot. But the antibodies may help establish if it's pernicious anemia. Keeping in mind IFA maybe negative in 50% of the cases of true PA.

Pickle500 profile image
Pickle500 in reply to browny52

Please, please, please do not stop your treatment.

The B12 is charging up your system, creating new blood cells and waking up nerves. Having these symptoms is a sign that you are deficient. And the fact that you couldn't get treatment from the doctor means you need to put treatment into your own hands. And that means continuing with the jabs.

I think, if you can, you should try to get them more frequently. Also - take a sublingual dose of 3,000 mcg a few times a day.

You will feel TERRIBLE for a while. But you will have to put up with it as your body is repairing damage from low B12.

If it helps to think it about it conceptually, Dr Chandy calls this 'reversing out syndrom'. You can read more about it here: b12d.org/b12d/submit/viewbl...

Please keep going and don't stop. It will take months for you to feel better.

browny52 profile image
browny52 in reply to Pickle500

Thank you so much for replying. I’m just a bit scared as I wasn’t even sure if B12 was my problem as my GP said it levels were fine, but I had to try something because I’ve been feeling so awful. The headaches are so debilitating and within an hour of my first jab it was like someone had given me a massive dose of pain killer. It was almost miraculous. But the insomnia and agitation have freaked me out a bit xx

Pickle500 profile image
Pickle500 in reply to browny52

Completely understandable.

I had punishing headaches and couldn't move. I found that sublingual doses helped clear them. Of course, they may not work if you do have PA or absorption problems but they do work for some.

Im sorry your GP was of no help. Your levels are still low. Try the sublingual b12 and see if they shift the headaches. They did for me and it was near miraculous.

You'll need alot of b12 before you feel better. The starting guns been fired now, with your first jab, so the race has started. You cannot overdose on b12, so take pots everyday. And keep having your jabs at the hairdresser. You may have to wait a month before it starts to clear

Pickle500 profile image
Pickle500 in reply to browny52

Try magnesium supplements. And CBD oil in the evening may help you sleep

browny52 profile image
browny52 in reply to Pickle500

Thank you so much. I’ve got some sublingual methylcobalamin but not tried it yet so will give that a go. I’ll get some magnesium and cbd to try xx

browny52 profile image
browny52

Massive thank you to everyone who has replied. I feel reassured to carry on treating now. Hoping that I keep making improvements xxx

Litatamon profile image
Litatamon

Have not read through, but are you getting methylcobalamin by any chance?

browny52 profile image
browny52 in reply to Litatamon

The jabs I had were hydroxy. Does Methyl cause those problems? The sublingual I’ve bought to try is methylcobalamin.

Litatamon profile image
Litatamon

Some feel no difference between any of the three choices.

And some do.

If anything has methylcobalamin I it - big time for injection s - but even pills & sprays -I am impacted adversely. In fact I bought a spray that was supposed to be hydroxocobalamin. And I felt off. And I thought that makes no sense. I turned over the bottle and it was a combination spray and it contained methylcobalamin.

My sister has to take injections as well. But when she takes pills as well (not all the time) they are methylcobalamin. I can literally tell when she is on them and when she is not. It is wild. She is less patient and more *jumpy* when she takes methylcobalamin.

Does mean methylcobalamin is bad? Nope. It is fine and good for many.

But not for me.

Does this mean it is your issue? Nope, not at all. But some experimentation will help you cross things out.

All the best to you browny52.

browny52 profile image
browny52 in reply to Litatamon

Thank you for this. I’m super sensitive to so many things so I’ll look out for problems and hopefully find something that suits me xx

Litatamon profile image
Litatamon in reply to browny52

It was the irritability & insomnia that alerted me. I took one methylcobalamin shot and could not sleep for entire night. Laughing, I know it is not funny but really! Not a minute. I take cyanocobalamin and sleep just fine.

And when methylcobalamin is in a secondary choice - pills or sprays - totally on edge.

So when you are getting regular injections and/or self-injecting drop the methylcobalamin pills - just to see.

Or source different pills now, just to cross it off or get a voila.

Also, it is possible you do not take to hydroxocobalamin. Clive, on here, does not take to hydroxocobalamin and takes cyanocobalamin. Everyone is different.

But give it some time. As people have mentioned it could be your body adjusting as well.

--------

Headaches. Before diagnosis, I had them daily as well. And I was never anyone to have headaches.

Just wanted to let you know I was both vitamin b12 & vitamin d deficient at the same time. And the headaches disappeared completely with supplementation of both. Mentioning this because I can not be sure which was causing them. Have not read but do you have a vitamin d level?

browny52 profile image
browny52 in reply to Litatamon

They didn’t check vitamin D and it’s unlikely she’ll do any more testing now. She said I’m just one of those unlucky people! I take a calcium supplement that has vitamin d in it but I might up the dose of vitamin d and see if that helps as well. I’m defo one of those unlucky people that never seem to show any problems in my blood (apart from folate deficiency) lol. Thank you so much for your help. Xx

Showgem profile image
Showgem

Do you have the range for your b12 level and have you had your b12 tested before and if so has your level dropped since then? If your levels are dropping you should go back to your GP to ask why and push for further testing for pernicious anaemia if there’s no other cause.

browny52 profile image
browny52

I’ve only had it tested once and it was 259. The range was 130-800. They wouldn’t test again as I’m in the range xx

cdominiv2 profile image
cdominiv2 in reply to browny52

How are you know? You get rid of the insomnia? What you did for that?

browny52 profile image
browny52 in reply to cdominiv2

I’m still having problems. I’m not sure what causes what sometimes. I need to post again for some more advice xx

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