I've had 2 B12 injections so far, with another tomorrow morning. While I was waiting for the treatment to start I ordered some mouth spray for B12 - 1 dose is 1,200ug. Today I was so tired I had to stay in bed after dragging myself on a dog walk so I had a dose of it. I just wanted to check that this is OK to do in between/while the injections are happening. I'm struggling so much at the moment to do anything without struggling to breathe and the dizziness is so bad I get it when I am driving (steering wheel felt like it was melting in my hands!). I know it can take months to feel differently but I suppose I was hoping for an additional helper. I've been tested for PA but negative for the IFAB, but I have hyperthyroidism as well, which is currently not being treated (I've no idea why, different GP every time, call from locum booked in for tomorrow).
I've uploaded my bloods in case that makes a difference to how much B12 is a good idea! Its 148ng with the range of 189-883.
Thanks for reading.
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eatingbiscuits
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When I was in your position with B12D confirmed by a similar serum B12 level I took whatever B12 I could lay my hands on. IFAB was negative as many are. After a year of the inadequate (for me) NHS jab protocol, I took the plunge and began EOD self-administered injections. I wish now that I hadn't waited that long. My research tells me that you cannot overdose B12.
Can I ask Nackapan how you found out the NHS App was filtering yr results please? I was advised to join couple months bk after asking for a printout of results,which is how I had been getting results before. I've asked since for some older results,just to see what I've been tested for in past & told I'd have to write a letter to management and someone may be able to find them but no guarantees? Ironic really as I've already found someone else's blood pressure results on my App, yet iys a struggle to get my own on there! Ho hum!
My surgery has all records online from when I joined in 2019 and most records from my previous surgery going back to around 2000. I've found that some doctors like to embellish their notes with things that they ought to have asked or to have told me. Nothing so serious that I've needed to pick them up on, so far.
Extra B12 will do no harm. B12 is not toxic even in very large doses. But problems breathing is a serious problem. Get it checked out by your doctor. It could be asthma or something. I have asthma and a ventolin inhaler helps me when I have troubles breathing.
I did a fair bit of googling before I went for my injection which said the same thing. The nurse however told me to stop, because you "can't tell what's in it if it's from Amazon" and "best not to do something the doctor hasn't prescribed".
I am sometimes amazed at what nurses know but not this time...
When I had my 40yo MOT the nurse told me I had to swap all sugar for sweetners and real butter for margarine. Yuck!
Thanks. The breathing is oxygen not being able to be carried as well I think - I had it before when low on ferritin.
These bloods were why they've prescribed the injections. I had my 3rd today but it hasn't made any difference yet. I think I also have iron and ferritin deficiencies which I have asked to be checked also - booked in for the 17th as the earliest they can do them, so I will find out then if the B12 has improved. I read a study that said the hyperthyroidism needs to be treated first to aid the absorption, so it will be interesting to see.
29 is now officially (by NICE) an indicator of iron deficiency.
Clinical Knowledge Summary > Anaemia - iron deficiency
Last revised in September 2023
Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
I've restarted taking Spatone daily and magnesium with added B3/5/6 and zinc. I think I can tell the signs even without waiting 2 weeks for a blood test to confirm. Interesting about the update to NICE as I always think a lot of people are ill because of low iron and only just passed by GP on blood tests when it can be so individual.
I find it astonishing it took up to last year for this! With some labs having lower reference intervals at silly numbers like 10 or 15. As I see it, since this NICE update, no UK lab should ever have a lower threshold below 30.
I also notice my breathing is worse when my B12 is low, I only picked up on this when cycling, also my heart rate is elevated by around 10% for the same exercise level.
I’m currently receiving my NHS injections every 8 weeks, the GP upped this from 12 weeks about a year ago. I still run out of energy after 4-5 weeks so I use B12 ampules from Amazon. Sometimes they seem to do nothing to help though, I wasn’t aware till recently they should be kept at a certain temperature, maybe that’s affected mine, or possibly a bad batch.
Also I just got my latest blood test results and my Serum Ferritin level is 30, the labs range is 24-337 so I’m ‘normal’ but from reading other comments it looks like I’m rock bottom!
I think ferritin is key to the breathing. I also had a pulmonary embolism late Jan so have already got a damaged lung but the low levels of oxygen being carried around don't help. Seems my hyperthyroidism caused the embolism, and that was triggered in part by the undiagnosed deficiencies and stress ... Funny how the simplest things can cause havoc. I like Spatone with vit C in the sachets as a quick way to get folate and ferritin up (Amazon do boxes of them).
I’m going to try Spatone, I see Holland and Barrett sell it so I can pick up locally to get me started asap.
Without this recent blood test results that the nurse emailed to me I’d still be in the dark about this, and this is the first time I have actually received the full report, normally I just get a call to say everything is in range, no action needed.
I get breathless too & usually find my ferritin has dropped. Dr's have usually not been helpful & saidive plenty, with ferritin levels such as low 20's!It's often a combination of not enough b12 and iron stores I guess for me. My ferritin was in 40's prior to my recent 2nd loading dose & if i do iron profiles at this level it always shows need for taking iron.. I explained to Dr I find mine is best between 80-100, so will continue taking iron. But if I hadn't mentioned it,don't think anything wldve been said. I went for 8wk blood test wk before last to check b12,blood count & ferritin & the latter 2 got missed off,so been bk 2day & await result. I found last time that initially ferritin lowered further after loading dose. I'm still breathless & find some nights it wakes me up & I seem to have to remind myself to take deep breaths to get air in. It all improved before when b12 & ferritin got on better level...Hooe you find yours does too.
I'm hopeful the Spatone is going to be boosting it but the earliest bloods I could get were 17th June so it's quite a wait. They might improve in the meantime is my hope! It is frustrating how they don't do all the tests at once. I am taking these new bloods to find out the other deficiencies but also if I have Graves as they discovered hyperthyroidism - I am struggling to eat. They could have done the Graves test straight after discovering hyper but for some reason left it to me to fight to get the results then fight to call in only to be told I now had to wait another month for new bloods. In the meantime they've booked 2 CT's for my stomach that I have been turned away from because they haven't medicated the hyperthyroid yet because they've not done the full bloods! Its mad how much it is all costing the NHS to rent out the CT each time and no way for me to cancel it because there is no one picking up the phone!
Spray is fine whether you're injecting or not, but if you have absorption problems that won't be enough. In that situation I had to swallow - not just under the tongue - 25mg - that's 25000µg - before any got into my urine. Most users find something similar, either, as I did, all at once, or spread over the day.
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