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[Pumkin75]

Hi I've just had my first b12 injection. And I feel like 💩. I've git 5 more to go in the next 2 wks. Last nite after recovering my does in the afternoon was scary. Felt sick. Was on the toilet. Sweats. Hotness in feet. Anxiety through roof. Palpitations. Tingling numbness. Could feel my circulation in legs and hands. To day woke up to the toilet still felt sick. No appetite. Feel like brain not it self . And tinnitus plz help

[Pickle500]

Sorry to hear that it's a tough time for you. But well done for getting to the Doctor and getting your injections.

These are all classic B12 symptoms that can often flare up or worsen once you begin treatment. B12 works in the blood, nerves and your DNA, and the effects run across many bodily functions including gastrointestinal.

Be assured that it is a normal reaction to mega-doses of B12. Your system is 'waking up' dormant nerves and creating new blood cells. With this rush of B12 in the system, the body goes into overdrive to start sorting things out. In practice, many people get worse before they get better.

You may need to stay home and manage the effects for the next two weeks. Did the Dr check your folate levels? Also, your potassium can drop on B12 injections. But this can be remedied with high-potassium foods - Bananas, avocados, coconut milk, dried fruit and potatoes.

Hold on tight, it's a bumpy ride. But you will get better (after it's worse for a bit)

[Pumkin75 in reply to Pickle500]

Thank you so much for your reply. I feel a bit better from what you said. Reassured. I'm not sure what I got tested for. But will ask on Monday when I have my second injection. I really don't understand it all yet. Could you tell me what normal b12 is I'm sure the nurse said between 160 / 200. Mine at 75 is this why I'm feeling like this coz it was so low ? Thank you ones again for your help

[Pickle500 in reply to Pumkin75]

My pleasure.

Yes, your b12 is extremely low. A 'Normal' or within range B12 level would be around 500-700. And a deficiency is usually classed as less than 200. But this depends on the ranges your surgery uses - which, nonsensically, are different in each region of the UK.

Thank goodness you've got tested and are getting treatment.

NHS put B12 and Folate togther for anaemia, which you may have (as well as low B12). So the Doc should've tested you for both folate (B9) and Cobalamin (B12) and then prescribed a treatment or dosage of folate (folic acid) if you were low.

It's like entering a brand new world with B12 deficiency. It's a world no-one really knows until you're unwell, and then you're in the rabbit hole I'm afraid! It's worth reading as much as you can to understand what's happening. Dr Joseph Chandy is a good source and has a book, plus 'Could it be B12' by Sally Pachalok.

Meantime, drink lots of water, eat what you can, try to get sleep and take whatever you can for the anxiety. CBD oil in the evenings can help you relax and get off.

All the best

[Pumkin75 in reply to Pickle500]

Thanx you so much for your help. I will deffo take your advice. I'm so glad I found this forum. Means alot

[Hidden in reply to Pumkin75]

This forum is literally a life saver. I’ve been having B12 injections for 5 years and SI for 3 years, but I’ve learnt more from this forum than any other source. It also makes you realise there’s a LOT of other people out there just like you. It’s very comforting and informative. There’s at least 6 people on here that know more about B12 and Folate deficiency than any doctor or nurse I’ve met. Definitely tell them about your symptoms though, but I’ve heard this is a fairly normal reaction. It could also be that you’ve picked up a bug of some sort and it’s just bad timing that you’re ill after your first injection? Your levels are really low. Mine are around 2000 because of SI once or twice a week. After I had some blood tests the other day, the doctor called me basically telling me off because my levels were too high! But they will be, as I inject a lot as that works for me. However, my folate was extremely low, so I’m back on iron tablets which are helping. Keep hydrated and rest up. And stick with the B12. Your levels are so low. Hope you feel better soon

[Pumkin75 in reply to Hidden]

Thank you for your msg. Yes I totally agree. I think haveing the b12 injection was a shock to my system because it was that low. Yours is 2000 I've got a lot to go to get to that result. 😆 pickle500 was saying its a like a reversing syndrome. I wondered what was going on in side my body and brain. scarey stuff. I'm eating lots of food with b12 in. Wish I liked red meat but I don't. I have a food intolerance to gluten and dairy but still eating eggs and little bits of cheese. My belly just blows up eating nuts and cereal . Hopefully things will get better. Onward and upwards. Wish I could sleep through it all and wake up better thank again for reply means a lit haceing support x

[Hidden in reply to Pumkin75]

Bless you. I’m vegetarian, but my body can’t absorb B12 no matter what I eat, hence me having to SI. I still try to eat healthily for obvious reasons. And I’m slowly building my folate back up by being on the iron tablets (can’t remember if you’re on those as well?) but might be worth an ask if not. I’m feeling much better with them. Keep us posted with your progress. I hope your levels pick up soon, so you’ll feel loads better x

[Hidden in reply to Pickle500]

Hello Pickle, I just read your reply to Pumpkin 75 and it’s SO helpful to me because I’m just about to start Vitamin B12 injections. Your comments about the system is 'waking up' dormant nerves and creating new blood cells was especially helpful.

I’m now fully prepared for this rush of B12 into my system and actually I’ll be welcoming any overdrive symptoms because I’ll know this is my system sorting things out.So it’s a kind of very helpful warning as well. Thankfully I have great support from a Dutch functional medicine doctor When I watched the movie about Sally Pacholok and did my own research I was actually greatly encouraged to find that I have many of the symptoms of low Vitamin B12.

All I can say is I wish I had discovered all this decades ago!!

Warmest thanks again

[Pickle500 in reply to Hidden]

Wonderful! Thanks for the acknowledgement. Glad you're getting treatment.

See how you feel once its done and update us here

[Pumkin75 in reply to Pickle500]

I feel a bit better to day anxiety gone down been eating alot more b12 foods. Still very tired I've not really done much since Fri. And I'm dew my next injection tomorrow. I'm dreading it. Hope I'm not like I was on Fri nite 😢 I will post my result tomorrow and let u know how I'm getting on thank you again just a star x

[Pickle500 in reply to Pumkin75]

Stay strong - you're getting the treatment you need to be better.

Dr Chandy suggests some people - and maybe those who are very low/deficient - go through a 'reversing out' syndrome. And this can mean you start to feel or experience the symptoms you had but much worse. But in theory, they will be 'going away in reverse order'.

Keep going and don't give up. You've been deficient for years probably, and your body needs gallons of B12 to get back to normal

[Sleepybunny in reply to Hidden]

Hi DeenieBeenie,

May be worth writing your own thread telling your story if you have time in future

Have a look at links in reply I left on this thread.

[Nackapan]

How severe were your symptoms before your b12 injection?How low did b12 get?

I was very ill before the first b12 injection but did get worse.

At least work being done to repair damage.

It's very difficult when they stir up your central nervous system.

Its overwhelming at times.

Hope your symptoms settle soo.

Diarrhoea is a known side effect from high dose b12 but also csn be a symptom of b12deficiency along with constipation.

Hope the surgery have also done the Intrinsic factor antibody blood test

[Pumkin75 in reply to Nackapan]

I was just very tired. I don't eat red meat aswell. Suffer from anxiety panic attacks for years and never had my b 12 tested. I feel a lot lot worse since I've had the injection.

[Pumkin75 in reply to Pumkin75]

It was 75 forgot to put that my poor brain not with it

[Nackapan]

Hopefully the b12 will stop your panic attacks.Also eventually help with fatigue.

Perhaps you were not able yo absorb enough b12 from your diet or you have PA ?

It does take time.

Weare often left with slot if questions as GPS don't seem to know much 🤔

Main thing is you are getting treatment

It probably took a few years to get that low. With the serum b12 the range is often 180pg/ml-914

My first ever one was 106pg/mL range put 200-900pg/mL

So annoying isn't it with no reference to what it was when well.

Some have 'in range ' results and poorly as low for them.

Even that test has an element of 'inactive b12 so z guide.

Often with low b12 other things csn be low

Vit D ,iron and folate common ones

Get a copy of your blood results .

It is s roller coaster.

J found sipping Jamaican strong ginger beer helped the nausea .

Also little nd often regular food.

[Pumkin75 in reply to Nackapan]

Hi kackapan was just wondering looked in mirror my checks are red never have that you think that's a good sign or my BP gone up x

[Pumkin75]

Thank you so much for your help. Hopefully I will get sorted and start understanding the results more and more. I'm at the doctors Monday so will ask what I got tested for and ask for a copy of my result. Thank you again.

[Nackapan in reply to Pumkin75]

Treat everything ax s good sign. Like rebooting

[Pumkin75 in reply to Nackapan]

I'm trying to stay positive. Till I've seen my b12 level go up. And know there working again. I'm in limbo land. Thanx again

[Sleepybunny]

Hi,

A lot of forum members report feeling worse for a while before starting to feel better.

Someone described it to me as the nerves waking up after being starved of B12.

A few people can experience a drop in potassium levels when they first start treatment so your GP may want to check your potassium levels.

If you get enough B12, I'm sure you'll start to see improvements soon.

Some links I post may have details that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Some UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BNF link below outlines two patterns of treatment for B12 deficiency in UK

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin (aimed at health professionals)

bnf.nice.org.uk/drug/hydrox...

If you have any neurological symptoms, check GP has you on the pattern of treatment for those with "neurological impairment".

NICE CKS B12 deficiency and Folate deficiency (aimed at health professionals)

cks.nice.org.uk/topics/anae...

I usually suggest to UK forum members that they track down the local guidelines on treatment/diagnosis of B12 deficiency for their area of UK as sometimes they are not helpful

See blog post below if interested about local guidelines.

b12deficiency.info/gloucest...

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

I am not medically trained.

I can post links to some very detailed replies I've written on forum with lots of B12 info so let me know if you'd like me to do that.