Hi everyone I’m so new to all this. Had undiagnosed low b12 since my symptoms started a year ago . Went to a private doctor and received an iron infusion and sent home with 3 b12 shots per week. Problem I’m having is after I inject my whole upper torso, chest and ribs become extremely tight it’s hard to breathe also palpitations. Is this normal? My muscles are all super tight from the deficiency but the injections make it so much worse, I be crippled over in pain and cannot breathe below my sternum after injecting. Could this mean my potassium drops so quick, I eat and drink 1000s of potassium foods per day . Does anyone take potassium supplements when injecting . My active b12 was 40 so assuming my body is going to demand so much potassium putting it back into my cells. Thanks in advance
Hydroxycobalamin injections - Pernicious Anaemi...
Hydroxycobalamin injections
Hi,
Welcome to the forum.
I wondered if your folate levels and Vitamin D levels had been checked.
Forum members here often report folate, iron and Vit D deficiencies as well as B12.
Do you mind me asking which country you are in?
I'm asking because patterns of treatment and type of B12 used can vary between countries.
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).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring and an online contact form.
Testing for PA
pernicious-anaemia-society....
B12 Info.com website (formerly B12 Deficiency Info)
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands
If you're in UK, there's a lot of info I can pass on to you.
I'm not medically trained.
Hi thank you, I’m in the Uk yes. I had a ferritin of 13.6 and folate 3.5 in March last year. Was on supplements for both but Ferritin only raised to 52 with supplements but couldn’t raise it any further. Folate was raised to 13.6. Recently only found out my active b12 was very low. Probably treating iron and folate masked a b12 problem. My b12 serum was 370 back then but never treated as was told it was ok. I received an iron infusion 2 weeks ago now, on b12 injections 3 times per week along with 5mg folic acid, whilst eating lots and lots of potassium foods everyday. My vit d was 64nmol in December I did receive a loading dose injection in January and on supplements now along with magnesium . I do have the sally pacholok book. I’ve watched videos aswell.
Hi Kiz
I suspect you saw the same private specialist as I have … a Dr K? If so I would email him if you have not already and put the questions to him. Since my consultation in December last year I have emailed with several questions and received prompt replies with clear advice for no extra charge.
I also used to experience chest tightness after my B12 injections but fortunately not on the scale you describe. I am happy to report that having self injected every other day since December my symptoms are improving.
I hope you find an answer and support. All the best and thank you for sharing your experiences.
Yes I did, I have emailed probably too much, he probably thinks I’m the most annoying person in the world ha. Did you also have an iron infusion?? What symptoms were you having from b12 deficiency? Sorry another question how long into b12 injections before the chest pain etc stopped and you started feeling abit better. ?
I had no chest pain until I started the B12 injections. I didn’t need an iron infusion but was also deficient in D and folate. My B12 was 106 and I had extreme fatigue, swollen tongue and repeated tonsil infection, pins and needles in my lower arms and hands, cramps in my feet, lightheadedness, peripheral vision disturbance, swollen finger joints, pain in my fingers and wrists, weak knees, lower back pain, anxiety attacks, lack of concentration and very irritable and heart palpitations, constant headaches and my finger nails were brittle and ridged and I had put on 2 stone in weight although I had a loss of appetite. I also had the sensation of wearing tight shoes with pressure on my toes when in bed - hard to describe. I was not sleeping well either which is why I thought I was tired.
The B12 folate and vitamin D have reversed most of the above but I now have tinnitus and the fatigue still but not as bad as it was and I am losing weight- lost 1 stone. My fingernails are growing less ridged but I still have no appetite.
When I overdo it now or am due my B12, I get a headache (not like a normal headache), aching arms and shoulders, I can’t focus on conversations and I get very very cold - as if my bones are chilled. I lose colour in my face and I look ill.
I have had B12 every other day since early December and the difference is nothing short of miraculous - I hadn’t even realised I was unwell until I look back. I started getting a tight chest immediately I stared the B12 but it is less noticeable now But I still get the tight shoe pressure in my toes when in bed! And pins and needle/tingling in my right arm and hand when in bed I am sleeping well on the whole. My tongue and tonsils not improved
I hope this helps I think it’s a long road to recovery but at least we are now on it - and we get to talk with lovely people on the way!
I should also add that since B12 started I have had a lot of teethache - not the odd one but the whole upper or lower jaw.
Gosh you had alot of symptoms. I had chest tightness before but everything seems to have gotten much worse since starting injections . I never had pins and needles before injections now I do .
Do you still inject every other day or how long did you do every other day, until your reduced ?
Did you ever have problems with your potassium level when injection or how did you keep that up?
I put a lot of my symptoms down to age, post-menapause and grief (I lost my younger brother in tragic circumstances) and it was only when I thought I had long covid as I was falling asleep at work and had repeated sore tongue and tonsils that I consulted my GP. She noticed that I had gone downhill as I frequently saw her when I accompanied my mother to surgery. It was she who decided to check for B12, I was shocked when she told me I had PA.
I still need to self-inject every other day. I know when I need my jab as I am a bit spacey and feel lethargic. I don't know when I will be able to reduce the frequency. My potassium levels were ok.
I’m so sorry about your brother. Good she checked though. My serum levels were always 300-400 range but my active b12 was very low at 40. Don’t think it was being used properly because I have iron deficiency. I’m struggling to see light at the end of the tunnel. The muscles tightness is unreal restricts every breathe I take.
hang in there … there is light at the end of the tunnel. Do you have any breathing issues normally? Ie asthma?
sorry also how much folic acid and vit d do you take and how often ?
I was 5mg folic within 6 hours of B12 for 30 doses and 80mg vit D for 3 months. Both finished now. Currently 5mg folic once a week and 1250mcg via vit D patch once a week.
I always wondered was 5mg folic acid enough for 1000mg b12 injection.
So u still inject every other day and only take 5mg folic acid once a week. How do you find the vit d patches? I have these patches too although dunno if I trust them or they could even work .
that’s what I was prescribed 5mg for 30 doses. Just awaiting results of blood test fir vit D, folic and iron.
Patches are supposed to be hyper allergenic but I react except on my tum. I use them every week but no reference as to whether they work in not.
yea I was prescribed a 5mg per injection aswell. I was actually told to inject 3 times per week. So none at the weekend . Ends up being my worst 2 days. I was going to say your injections are probably starting to use your iron up now . Maybe be worth getting that checked and ferritin. It’s an awful vicious circle. How quick did your palpitations go away? Did you have a pounding heart . Sorry I’m asking so many questions it’s still quite new to me . What a year it’s been
I inject every other day and extra if I need it for any reason such as o redoing it so I never go 48 hours without B12. Yes I had pounding heart and anxiety attacks but these lessened and have gone now. As you can’t overdose on B12 I am guided by my symptoms not a rigid timetable.
You are right had blood test yesterday for folic, Vit D and ferratin and some others.
I just be standing do something and my heart will just jump then causes me to panic. Then my tight neck etc is making me feel like my throat is closing , then the weak torso makes me not be able to breathe below my sternum it’s very hard. It’s the below the sternum gets me the most. I feel like I’m constantly holding my breath can’t let it out. Hope your results come back great☺️
it sounds awful. I don’t know what to say except keep
Looking for your answer and try to keep calm when it happens even though I know it’s scary. Tell yourself you can and will get through it. Try to breathe deeply when it happens snd keep calm.
yea trying my best. Was let get too far. My poor toddler has had no life because of this it’s a joke
Kiz
Having a toddler is especially hard but don’t feel guilty - they will enjoy being with mum whatever that looks like and just being there is a huge gift to a toddler
I have been thinking. I assume you self inject if so what time of day? In the early days of my injections I injected in the evening so a lot of my symptoms were while I was in bed, where I could relax and keep warm. Now that I am feeling better I take my B12 in the morning. I was wondering if injecting in the evening may help you too?
Big hug.
it is really hard, especially when I can’t breathe and whole body is tense 24/7 with migraines. I inject in the evening I too thought would be ideal to let it do it’s thing whilst I sleep. But when I wake up next morning it’s just worse again. Not sure what to do feel like I’m fighting a loosing battle .
I do t know what else to suggest other than to try to see a GP and talk it through. Take someone with you for support. Focus on your 5 main symptoms and perhaps start with a full blood check again - not B12 obviously! Clearly you need more help that you are getting.
Hugs.
just off the phone to my GP there now, said again I do not have low b12 or pernicious aneamia and that all my levels were fine and basically that private doc was just taking my money. But that other doctor told me I did, and gave me treatment for it. Said again it’s all anxiety, hitting a brick wall. Disagreed with everything I said the private doctor explained to me .
Ok so youve hit a brick wall with that GP. The NICE guidelines clearly indicate that symptoms are more important than the actual blood test level. Is there a different GP at the practice you could see or even change your GP practice?
yes that’s my Gp I’ve had from I was born. There are 4 different gps but they all disagree I’ve seen them all. They Have been putting this down to anxiety from day 1. Which I tried anxiety meds for 6 months only making me worse. My psychiatrist even sent them back an email to say that this wasn’t a mental health issue and was something physical they still don’t agree. Nightmare!! I think all gps here would just say the same I doubt I would find one that would agree to be honest. Just wish my infusion and injections would kick in so I can hopefully go back to them telling them that it all helped me.
just read back that you lost a stone in weight, I lost 3 stone . It’s horrible
I am happy to lose a stone as my weight gain made me feel uncomfortable but I sense you have unwanted weight loss. Perhaps it’s time to put in a complaint to your GP practice. It seems that they are making up the rules as they go along when they disregard specialist advice. A polite but firm factual complaint citing NICE guidelines may be your next step then. sleepybunny has some excellent links that would assist if you chose this route.
no I was happy enough to loose weight just wish it have of been done in a healthier way, I had put a bit weight on before hand. I at least had a lovely dress for my brothers wedding in December that I could never really have. Always felt uncomfortable dressing up. Yea I’m not sure I would have the gut to complain as generally I havnt a clue what I am talking about I wouldn’t even know where to start. Just wish I could fall asleep for 3-4 weeks and wake up and feel better lol wishful thinking 😂
I would be happy to help you if that is what you wanted to do.
I just wouldn’t know what to present to them. To be honest I’m not great with research and evidence etc
You don’t need to research to make a complaint. It basically explains your current situation, what has happened so far, what you are unhappy about, what you would like to happen. My offer of help still stands should you change your mind. You probably best rest as we have both had a busy day! Good night.
I too am under the care of Dr K… we need to publicise the Cambridge Iron Clinic more. I went for years trying to find someone to help me - if only I had known about him & the clinic back then!
All the best with your treatment
I agree, he has transformed my life from tatters to something approaching normality. I private chatted someone on this forum for his details as we are not supposed to recommend clinicians in this forum but I do agree with you, the Cambridge Iron Clinic and Dr Klein are the go to place for PA.
I think we have to be careful on the forum about naming health professionals for privacy reasons but also because some UK doctors in past who were helpful to those with B12 deficiency have been criticised for thinking differently.
With so few UK doctors with a good understanding of the issues we face, I don't want to risk losing the good ones.
yes I can see that but that has to be balanced with the potential risk of permanent nerve damage if one doesn’t get help when needed.
we are between a rock and a hard place.
Might be something useful for you in these threads below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 films and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Thread about Patient Safety, has lots of useful links for people who've had difficult health experiences.
Hello Kiz20! I'm reading this 8 months on and hoping you're much better now and found a way through that scary time. I'm having very similar symptoms, and also had an iron infusion on Dr K's advice, so any feedback from you could really reassure me right now. 🥺
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