Hi there I've recently had my last loading dose of b12 around 3 weeks ago due to been deficient, no idea why, doctors have not said just thar I need them every 3 months for life but my question is, I'm having bouts of anxiety and palpitations 3 weeks later, could this be due to low potassium and or folate, my potassium was OK before injections and my folate was low but in range, would anyone know about these symptoms I'm getting or is it just side effects from the b12?
B12 injections : Hi there I've recently... - Pernicious Anaemi...
B12 injections
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Seanyd1974
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Hi,
Welcome to the forum.
I'm assuming you're in UK. Let me know if you're not in UK.
Some links I post may have details that could be upsetting.
Has your GP tested your potassium levels?
If not maybe you could ask them to test it as some people get a drop in potassium levels when B12 treatment starts.
Does your GP know about your symptoms? Might also be worth talking to a local pharmacist.
If you think it's urgent and you can't get a GP appointment, you could ring NHS 111.
In an emergency, always ring 999.
Many forum members report their symptoms getting worse for a while when B12 treatment starts before starting to get better. Anxiety as a symptom is often mentioned.
There are lots of possible reasons for developing B12 deficiency.
GP probably thinks you have a problem absorbing B12 from the gut because GP said you'll need it every 3 months for life.
Link about What to do next if B12 deficiency is suspected or just diagnosed
"and my folate was low but in range"
Perhaps you could ask GP if you would benefit from taking a folate supplement that has the RDA (recommended daily amount) in it. Local pharmacist might also be worth talking to.
It's quite common for forum members to have folate, iron and Vitamin D deficiencies as well as B12.
Has GP tested iron and Vitamin D?
People need good amounts of B12, folate and iron to make healthy red blood cells.
Also quite common for people here to also have thyroid problems. Worth posting on Thyroid UK forum on HU if you think that's a possibility.
PA and Coeliac disease
If B12 deficiency is not due to diet then I would expect them to at least test you for PA (Pernicious Anaemia) and Coeliac disease. These are two autoimmune conditions that can lead to B12 deficiency.
The usual blood test for PA is an Intrinsic Factor Antibody test. If IFA test result is negative that does not rule out PA. There are other tests that can help to diagnose PA.
If you suspect you might have PA, worth joining and talking to PAS (Pernicious Anaemia Society).
pernicious-anaemia-society....
PAS membership is separate to membership of this forum. You do not need a PA diagnosis to join. Lots of useful leaflets and other info on PAS website.
pernicious-anaemia-society....
The usual blood test for coeliac disease is tTG IgA test which looks for antibodies to gluten in the blood. There are other tests that can help diagnose coeliac disease.
Coeliac UK article - Getting diagnosed
coeliac.org.uk/information-...
They have an online self assessment for coeliac disease.
Other UK B12 websites
B12info.com
Run by a UK campaigner on B12 deficiency issues.
Has lots of useful info and interesting blog posts.
B12d.org
They organise interesting online talks.
The B12 Society
Useful symptoms lists
Two useful B12 books
Published several years ago so some bits may need updating.
"What You Need to Know about Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12? " by Sally Pacholok and J.J. Stuart (US authors)
I'm not a health professional.
This is only a small amount of the info I and others can pass on.
Just say if you'd like me to post more.
Thanks for your reply, the palpitations are just more annoying than anything, yes I'm from the UK, I've got a doctors appointment tomorrow, most or all autoimmune diseases cause a problem with absorbing b12, correct me if I'm wrong. I've got a condition called psa, psoratic arthritis which in turn is autoimmune so maybe that is the problem, I've been drinking lots of coconut water/ bananas etc, plenty of green vegetables, I definitely felt great initially after the injections but like you sat maybe my potassium has dropped, the doctors should really be monitoring me but they seem to know very little about any sort of deficiency.
I think PSA (psoriatic arthritis) is associated with psoriasis, an autoimmune skin condition.
Psoriasis is fairly common in people with PA (Pernicious Anaemia).
If you have neurological symptoms, I'd expect GP to give more loading injections then injections every 2 months.
Delayed or inadequate treatment increases the risk of developing permanent neurological damage.
I left detailed replies in the thread below eg suggestions of B12 documents to read, links if unhappy with treatment etc.
Some links may have details that could be upsetting.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
Many on this forum have met health professionals who lack understanding of PA and B12 deficiency. It's worth reading about PA and B12 deficiency in case you meet one like that.
I hope you have a helpful appointment.
Or mabe need another b12 injectikn.I lasted 5 weeks and needed eod again.
Really, so I could be withdrawing, even after having 6 injections, my last one was 3 weeks ago, thar sounds crazy
It depends on how long you were deficient. What your symptoms are .
For me symptoms got alot worse before improvements .
So not withdrawing az such but not keeping up with the momentum of treatment if that makes sense .
Obviously all your other replies give other reasons too.
I've had palpitations and shortness of breath for a few years and recently before the injections I was getting cronic fatigue so that's what made me go the doctors, I've got a heart condition called afib so I put palpitations and shortness of breath down to that, then after probably my 4th injection them problems disappeared but palpitations are back so it's most likely something to do with my b12 deficiency
I think you have just made the diagnosis!
Next question is how to get a trial of more frequent shots to confirm your diagnosis.
I have injections once per week because I get symptoms back in 3 weeks. Others on this forum need them more often than that. If you have pernicious anemia, you will need injections regularly for life.
Not sure I have pernicious anemia, I've not been tested, I'm just getting terrible anxiety and palpitations 3 weeks after my last loading dose, I wonder why that would be, I'm not taking any cofactors
Did the loading doses make you feel better? If yes, there is a good chance you have PA.
Say after my 4th one I felt alot better yes, no palpitations no anxiety, no fatigue but now 3 weeks after my last dose I seem to of crashed and feel worse
You probably have PA then and need shots more than once per 3 weeks. I get symptoms back in 3 weeks so I have injections once per week.
I am awaiting a rheumatology appointment for suspected PSA and I also suffer with palpitations - have done for many years and these get much worse when I'm tired. The same as you I went to the docs when the extreme fatigue (and other symptoms) got too much. Had the loading doses then was told I would be only given oral B12. I decided to pay to see a private specialist but in the 3 weeks between loading doses and that appointment (after which I started self injecting) I had new symptoms such as tinnitus, but some eased off, like breathlessness.
It sounds like you need more frequent B12. And perhaps a folate check as B12 and folate work together so your loading doses may have taken your folate levels down. I was below range on folate and was given folic acid to take after loading doses and I think that is quite standard. Perhaps ask your GP today? 6 months after starting self injections I am so much better but still get tired and have symptoms. Wishing you luck! Would you mind me contacting you privately if I do receive a PSA diagnosis?
Yes sure you can, get me on Facebook sean davies or email, seandavies59@gmail.com. you do know that psa can also cause cronic fatigue, I have it worse in my ankle and struggle some days going into work
I'm not on Facebook but will message you on here if that's OK? I did read that PSA can also cause fatigue and it may well be that the fatigue I have now (nowhere near what it was 1 year ago when I struggling to get through a day at work). My fingers are slowly getting more puffy - my wedding ring may have to come off soon. Currently awaiting nail sample results to rule out fungal nail and then rheumatology referral. I have been injecting every 2 days since April. The shortness of breath went for me within perhaps 4 weeks of B12 injections at this frequency.
Happy to be proved wrong, but I have yet to find any clear NHS guidance about the need for cofactors such as folic acid, iron, vitamin D etc. to be taken alongside B12 injections, as part of a comprehensive treatment package. Neither my GP or neurologist have suggested this despite blood tests showing that I’m low in the range for these. Because I’m ‘in range’ that seems to be OK in their eyes.
There is actually conflicting information. If you look up folic acid on the NHS website us clearly states that those that might not be able to take it are those with B12 deficiency and PA, and says speak yo you doctor first. There’s a potential circular argument here with no solution!
Personally I’m taking modest amounts of these supplements alongside my B12 injections ‘just in case’.
It’s certainly worth raising this with your GP to gauge their reaction and to see if they understand any link.
With regards to anxiety, it’s by far the main thing I’ve yet to get on top of despite a year of injections (some self administered) and taking the supplements. My GP and neurologists solution is antidepressants! I’ve declined.
Thanks for that reply, yes I've mentioned to the nurse twice about cofactors along side injections, she has said the same, low but in range so nothing to worry about, I've been drinking lots of coconut water the last few days so if b12 injections have not depleted my potassium then maybe I've bought it up to high, hence the palpitations, I'm not drinking it anymore, I've got appointment this morning and I'm asking for another blood test just to see what my iron and potassium is doing then I will go from there, thank god I've got a week off work because no way I could of gone in yesterday with palpitations and blured vision, awful
May be worth asking what your 'low' folate results are. Low but in range can make you feel unwell so good to know. Also vitamin D levels.
I've got all my results on the nhs app, it's on the low end of in range
Low folate and b12 often go hand in hand, especially if an absorption problem. You would probably feel an improvement if you raise your level. As you start to utilise the additional b12 you will also be using more folate so may reduce levels further. Also note if Intrinsic Factor antibody test was carried out. It will be useful if positive in case they try to stop injections in the future.
I've been told by the doctor I'm to have the injections for life even before finding out why my active b12 was very low, that I find strange, so it is true that b12 injections will deplete my folate?
B12 doesn't deplete it, but as your health improves you will also need optimum levels of other vitamins to keep the improvement going otherwise it may stall. If you struggle to absorb from food you can see how quickly something else can fall as your body heals. It's such a difficult balance at times, particularly if it's autoimmune as you have other things going on and different medications which can also interfere with absorption. We have all been there I'm afraid and learning every day in a desperate effort to feel well.
Interesting your doctor did an active b12 test. Most haven't heard of it.
I think the normal b12 test is what is stored and active is more precise in detecting a deficiency, I've heard someone was was given the all clear until active b12 was tested and found to be deficient, I know in the states they don't test in that way
Most private tests are active b12. Perhaps the NHS have now also started. Keep a check on folate, vitamin D and ferritin as you start to feel better. Many people on injections find three monthly isn't sufficient though you may struggle convincing a doctor to give you more. Everyone is different as you will see from this forum.
Thanks for your feedback, I will be having them more regular than 3 months as my partner is a nurse who administers them at work and there not very expensive, will wait to see how my bloods come back and go from there, I've just got a feeling that other things have been knocked about by the injections, I could be wrong and could just be a time thing because I've heard you can feel worse before feeling better
Sounds like a plan. Do let us know how things go. It always helps someone. Good luck.
Just a little message to let you know how I got on, I'm having more bloods and testing my vit d aswell as it wasn't tested before also I got to have ecg, standard practice I suppose if tell your doctor you have palpitations, not until next week thow, I thought that should be done straight away but doctors these days are in no rush.
It's always best to get a full picture before supplementing. I was surprised when my vitamin d was only 79 at the end of summer though it had been 50 at the end of winter. I felt very unwell and supplementing helped with the anxiety I was feeling so it may be something which will help you. I had never imagined I would be low as I had always been outside so much and as we store vit d didn't want to overdose. Just goes to show things aren't always what we think and it also ensured I started supplementing earlier. Can I ask if you have any specific antibodies for PSA? Good you have the ecg booked too.
To be honest I'm with a new doctor after moving home, they don't come across as been that interesting if im honest, I've not been tested for anything, just a case of ok your b12 is and here are some injections, see you in 3 months for your next dose ,that is basically it, I'm little annoyed they have me booked in the surgery for an ecg, my missus been a nurse said they should of had me straight in for that considering my complaint is palpitations, even cofactors along side b12 injections, absolutely nothing from them, sorry for ranting
Most of us are probably ranted out on here, with it just breaking the surface every now and then, but we all understand and are all trying to get well. It's not uncommon for injections to be needed more frequently than 3 months (though getting a medic to acknowledge that is rare). Mine would last for three and a half weeks then I would slowly decline. They were stopped at the beginning of covid and I'm now unwell. Supplementing raises my levels and helps with the breathlessness but not energy levels, irregular heartbeat or brain fog. I also have high thyroid antibody levels again, something I hadn't had while on injections, but had had many years ago, which is why I asked how you PSA was diagnosed. I too was told I needed injections for life...before they decided I didn't. Many people (especially on the thyroid forum) have regular private fingerpick tests to monitor their levels which is so helpful and your partner may be able to do/choose the right tests to get a full picture (and evidence) of what is going on should they decided to change your treatment. Read as much as you can to understand your conditions and what they and their treatments have in common or contradict. Also, try and add one supplement at a time so you know if it doesn't suit you - I've made that mistake and paid the price. Only take what you need and reduce the load on your body.You are at the beginning of a new journey which most of us have walked, over many years, and are still walking (sorry for the long post).
My main question is why all of a sudden I'm getting these palpitations 3 weeks after my last loading dose, would my potassium and folate have tanked, I've been drinking lots of coconut water, could I have over done it and raised it too high?. Answer to your question about psa, I've had mild psoriasis since I was young and in turn can lead to psa later in life, with me it started in my ankle, pain and stiffness had a scan and I was diagnosed with it ,it can also affect your gut, all in all it's autoimmune which in turn again causes deficiency, it's a crazy horrible problem to deal with
As you had palpitations for a long time prior to your loading doses and after them they disappeared for 3 weeks before returning it would seem perfectly logical to me that the b12 resolved them. Convincing a gp may be a different matter. The only way of knowing is to see if they abate after your next injection. My routine would be dying duck...injection, lunch, nap, get up paint garage door....3.5 weeks dying duck...injection, lunch, nap, get up garden for 3 hours, cook dinner and be looking forward to the next 3.5 weeks - you get the picture. This would be labelled as placebo by many doctors, as Dr Morris in the Cytoplan video mentions, and you seem to have had the same reaction and it is very real. Your b12 levels may have been checked yesterday to make sure they are high and if so they will remain high for quite some time, which doesn't necessarily reflect how you feel but treatment will depend on those levels. Then the dilemma begins as to what to do next. For the very short term I would wait and see what your potassium and folate levels are as it will only be a few days before you get your results (only because it may help choose the most suitable supplement and you know what you want to address first) and get the ecg done. Stressing will make things worse but recognising you have something going on helps you be a bit kinder to yourself.
Yes so it's treating the symptoms not go on your b12 numbers, so doctors are basically saying your levels are now fine so your fine, they no very little, my missus told me it takes 7 years to train to be a doctor and they spend 45min of that 7 years learning about deficiency, it's crasy, one of her best friends is a doctor and that's what was said
That pretty much sums it up. As far as I’m aware there’s no agreement on how long it stays high when injections have ceased either - plenty of opinions, but I can’t find any medical evidence. Also due to the very complex nature of the way we absorb and utilise b12 there are a many ways we can become deficient - from saliva to dna mutations and everything in between before including other conditions which can contribute to these miserable symptoms. I’m afraid we are at the mercy of doctors saying things with authority and with a very firm grip of the wrong end of the stick. Luckily there are many kind people here who will be happy to help and share their experiences for you to start your own journey.
I had palpitations and breathless it was because of this drs checked B12 I was below 50! Had loading doses and then every 3 months for life, this was reduced to 10 weeks because symptoms returned. Just in process of trying to get every 8 weeks as again symptoms returned about week 7/8.. good luck with it all, been on this journey since January and I’m still struggling with fatigue and arm weakness.
Hi Veraveg,
I left info for UK people struggling to get adequate B12 treatment in this thread.
healthunlocked.com/pasoc/po...
Some UK forum members try self treatment. Some get extra B12 injections privately, some try high dose oral B12 but this doesn't work for everyone (didn't for me) and some as a last resort try self injection (SI).
Thank you ☺️
Welcome to the club. I'm 17 months into this. Here's what I wished I'd known sooner. Great that you have a partner that can give you extra doses as the NHS usually won't.Your Dr will want to do a blood test after your loading doses to see how you respond. After that you are free to not tell them what you are getting extra.
What kind of folate are you taking? L-methylfolate and folonic acid are better than folic acid, which is a synthetic substitute and counterproductive in some people. Folate works hand in hand with B12 in the body, you can't have one functioning properly without the other.
I have psoriasis too. I'm starting on extra vitamin B6 too to see if that helps.
It's good to add vitamin D to the mix and balance out your potassium and magnesium, excuse for an Epsom salt soak in the bath. I like magnesium lotion.
Oily fish, liver paté and walnuts are good to add to your diet regularly.
If you can't absorb vitamin B12 through your ileum you need injections for life.
Vitamin B12 is essential for every cell in your body particularly:
Hemoglobin production, have they spotted megaloblastic cells? It's why you are tired and breathless, not enough oxygen going round.
Nerve myelin sheath and your brain myelin. As this repairs expect anxiety, sudden fatigue, mental short circuits, memories returning, but sometimes jumbled, obsessional thinking, negative catastrophising, strange aches and pains. Oily fish helps mending here and just knowing it's not you and it will pass. Deep sleep needed as you mend. Pain killers can use up your B12 fast, best avoided, especially ibuprofen.
DNA replication. The knock on of B12 deficiency is every bit of you needs to heal and it takes time. (Badly replicating DNA can cause cancer in the long run, be aware, but don't stress about it.)
Recycling of protein in your liver, which is why low B12 leads to high homocysteine, which can lead to non alcoholic fatty liver disease. B12, B6 and folate work together to break it down.
Know that being in stress mode stops you being in healing mode. Gentle movement to keep lymph flowing, but don't overdo exercise, you've got enough bodily repairs to do.
It's a roller coaster this " reversing out" business. Give yourself a break on everything for the next 2 years. Big hugs. This forum has been invaluable for me and a life saver for many. There's great knowledge and support here, just ask. 🍀
I'm not taking any cofactors at all, this is why I need another blood test to see what has depleted if anything
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