Pernicious Anaemia Society
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Advice on self injecting

Hi again,

I had a GP appointment on 15th Jan. He reluctantly agreed to start me on B12 injections for a month (one a week) although he doesn’t think I’m deficient.

The receptionist couldn’t get me in until 8th Feb for my first so I had decided to self administer the shots and ordered everything I need.

I’ve now (after complaining) got an appointment for tomorrow morning for my first injection and then every week after for a further 3 weeks I’m then due a ‘review’ even though doc hasn’t requested and blood tests or referrals.

I’ve joined the PAS and have read that guidelines state loading shots of every two days for the first two weeks then spaced out after this initial treatment.

My question is...as I’ve ordered them anyway shall I ask the nurse tomorrow if she can teach me how to do it (fairly confident it wouldn’t be a problem anyway as I’ve watched loads of videos on it) and go to the surgery for my weekly shot and do the others in between at home?

OR

Keep my mouth shut and just self inject the extra? The only issue with this is that I’m not helping others if these professionals think the shots they’re providing are enough when in fact it needs to be carefully tailored to individuals.

If they don’t authorise it do I do as they say and have it weekly at the surgery and then complain it’s not enough (if it isn’t)

My symptoms are ~

Extreme fatigue. In bed all day most days. Never feeling refreshed after 8-10 hours sleep)

Depression

Anxiety

Pins and needles -arms, hands, feet

Numb toes

Balance

Sickness

Blurred eyesight when reading

Breathlessness

Stomach pain

Skin rashes (dry skin)

No energy to perform any tasks. A shower a day is the extent of my ability.

Brain fogs/confusion/can’t organise thoughts or find correct words.

Hot and cold flashes

I’m 41. Previously very active, resigned from my job as a police officer two years ago because I couldn’t cope with the shifts with my symptoms. Self employed now but can’t work at the moment obviously. Numerous doctor visits have all said depression previously. Although I know it’s not that. I’m depressed because I’m frustrated that I’m unwell and no one is believing me.

Previous blood result said 190 for B12 which raised to 530 after taking B12, Vit D And Iron tablets for a month. (Doc said I’m now in range and not deficient/anaemic)

I’ve previously, in my first post on here had lots of helpful information, so thank you for that.

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I had all the symptoms you list except skin rashes. I was suggessted to take 4 cold pressed 1000 mcg pumkin seed oil pills daily for a month to see if it helped with supposed depression by a therapist. This was March 2017.

I took 2 pills first thing in morning. Within 1 hour my anxiety/internal jitteriness reduced. It wasnt gone but it was noticible. I was not expecting anything to happen for over a month and only then for supposed depression. I didnt think i was depressed, i was scared i had dementia and was losing my mind. Of course i had not told anyone this as it would make me sound crazy. i was shocked. Not sure how it could have been placebo as i wasnt expecting ANYTHING for at least a month. I had not researched the pills at all. At the time i was way too out of it. I wasnt taking anything else except 3-4 ibuprofen pills 2- 3X daily for joint pain.

Jitteriness came back after appox 4 hours. I took 1 pumkin seed oil pill. nothing so an hour later i took another. After about 30 minutes the anxiety/ jitteriness reduced again.

4 hours later jitteriness. Took 2 pills and it reduced.

So i thought screw it, these pills are natural. I set a timer on my clock for every 4 hours and took 2 pills. Anxiety was halved immediately. It was definitly something.

Then after 4 days my knee and elbow pain was magically gone. WTH!

I had been having joint pain for over a year. Could not be placebo as i was NOT expecting it.

Researched pumpkin seed oil. Helps with inflamation, hair loss, incontinence, ect. They have folate, potassium, magnesium, zinc, copper, ect.

I started getting b12 injections in May 2017. After 9 weekly cyano injections (im in US) i felt better but still unwell. Found out i had h pylori in August 2017. H pylori is a root cause of b12 deficiency because those nasty bugs reduce stomach acid ph. This definitely effects b12 and iron absorbtion. In my opinion, i think that once it is out of control your stomach acid reduces so much you get hypochloridia which causes malabsorption of numerous nutrients.

I was diagnosed with b12 deficiency, 169, in Oct 2014. I was told to take tables. Which i did for 30 months as i progressively got worse. It takes a long time to run out of b12 so who knows how long i had h pylori prior to testing b12 deficient.

You state you have stomach pain so please get tested for h pylori, sibo, celiac, chrohns if you gave to, in order to figure this out. Digestion is extremely important.

Btw, if you have h pylori, those iron tablets are feeding it. H pylori produces ammonia to reduce stomach acid ph. Vicious cycle.

H pylori uses iron, produces more ammonia, lowers stomach acid ph, reduces nutrient absorbtion.

Best of luck.

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Gosh that’s so interesting. I didn’t know/hadn’t heard of any of those! I will definitely research what you’ve mentioned. Thank you :)

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Btw, i started with weekly cyano injections. If i had to do it over again, i would have been tested for h pylori immediately and gotten injections twice a week. Definitely get your potassium intake up thru what ever means possible to the recommended daily allowance of 4700 mg daily. It is a lot. Not suggesting you over do it but Most folks dont get enough potassium which isnt usually a big deal, but once you get injections you could start getting cramping in toes and calves, charlie horses, if you dont get enough. Potassium pills are worthless, they only have 99 mgs. A potatoe averages 700 to 900. A banana has appox 400. I used friut punch flavor of Vitamin water. It has 880 mg per bottle and only cost me $1 per bottle at walmart. The other flavors of vitamin water do not have any significant amount of potassium.

I was hoping for energy after starting injections. That did not happen for me. I would have to take a 3 hour nap about 3 hours after an injection for first appox 6 weeks. This may not happen to you but you might schedule your shots so you can nap afterwards. Just fyi. Lots of repair will be getting done internally.

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Thanks KimberinUS, I will definitely do that thank you. I’ll start keeping an up to date diary of health too now, think I’ll need to keep a close eye on it all!

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Hi Turnerpie, I'm ex-job also, left in 2008 after being totally dicked by the job with only 15 or so years clocked. I had already been on Lansoprazole by then for around 10 years and without knowing it was most likely B12 deficient. Life was hard to say the least and 'depression' was part and parcel of daily life, despite GP's recommendations I flatly refused to swallow antidepressants which come with their own inherent problems. Anyway life got better but all the normal ups and downs always got on top of me, I figured that was just the way life was going to be, ageing prematurely in my eyes, greying, balding, feeling shit and listless, abusing alcohol as it seemed to make me feel better etc. It was only about 4 or 5 months ago that I started with the buzzing and numbness in my hands that some googling the subject conjuncted with 'lansoprazole' that I hit the jackpot!! B12 deficiency caused by proton pump inhibitors ticked ALL the boxes for everything going wrong with me, including a failed gall bladder and a nerve sheath tumour. Anyway, just thought I'd touch base with ya, well done for getting yourself back (ish) on your feet!!

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I left 2 years ago this month after 11. I’d had 5 months off with depression on 2014 and went back but now I’m educated a bit more on deficiencies I can now see that my symptoms were probably building from back then.

There’s no welfare in the job. I didn’t even get an exit interview to find out why either, or an email for that matter. You’re a number pure and simple. Luckily I’d already started my business on the side and continued building on that when I left.

Aspects of it I miss but the thought of having enough clarity to make decisions on the spot with how I am at the moment (when you’ve got such responsibility and no back up if it all hits the fan) I think I made the right choice.

Hope you’re doing ok now...I’ve got a bit of a fight on my hands I think with diagnosis but I’ll just inject myself and see how that goes if it comes to it! I’ll work on a process of elimination...see, job came in a bit handy! 😀

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Yeah my exit was swift, initiated by myself; after many years carrying firearms in The Met I walked away with the proverbial cricket bat shoved firmly up my butt through NO wrong doing of my own, very long story etc but the door shut firmly on me. Had I been a minority (you know the groups I mean) they'd've been all over me. I did have a fair chance of legal recourse but even the federation proved they are a crock of manure when it comes to it lol Life actually got better albeit at the time I was in and out of jobs, depressed, drinking heavily etc. Looking back now I have had such a rich life since I left rather than becoming a pension chaser lol

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So how you getting on with the jabs, have you started yet?

I'm just ordering mine online and also planning to sort the potassium aspect as well.

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I did my first on Sunday, wasn’t as bad as expected, did thigh. Just about to do my second one now. It’s the brain that needs training...everything is screaming ‘Nooo! Stop!’ Now the first is done though think I’ll be ok. Not feeling much better yet but know it takes time. I’ve just ordered a batch of 100 vials I’d just ordered 10 first to see what they were like. They work out at about 46p each rather than around 70p each when ordering just 10. Good luck, let me know how you go.

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Well done!!! That brain part, that's the worst for me. I won't say exactly what, in case I 'contaminate' you and plant negative stuff in your head, that's not fair seeing as you're making progress lol

Mine should be here in the next two days or so, haven't sourced and needles yet as am going to try local chemist for the all in one insulin ones to start under the skin first.

Keep Us updated!!!

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Personally I’d go for the intramuscular from what I’ve read it works better apparently and it really didn’t hurt at all. There was a bit of resistance pushing through the layers which wasn’t pleasant but I’m desperate enough to want to feel ‘normal’ I did however, manage to drop the needle and caught it causing it to stick in my finger which throbbed for hours! 😂 such a doofus

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Laughed a lot at that lol

Listen I abused anabolic and androgenic steroids in my late teens as I competed in bodybuilding and did some Olympic-style weight lifting too, so IM injections a re no stranger to me, and I think therein lies the whole phobia with me now.

But here's a tip; if you're using the blue needle for IM in the thigh, when you're ready, just pop it in there like a dart, don't pus slowly as you'll encounter some resistance as the sharp tip meets the outer membrane of the muscle and then you have to push harder etc.

Again, it's counter to what your brain is telling you, but try to believe me, a gentle 'thrust' like a dart and its in there in a moment!

Inject and then pull out smoothly, not really fast, as on the way out you can 'skite' the sharp tip on the edge of the skin's puncture and cause it to tear minutely, which makes the entry point a little inflamed for a while afterwards.

That catching it and pricking your finger with it, 'may' have ever so slightly blunted to tip so it wouldn't have been so supersharp for the injection, so it your entry point hurts a little this time, you'll know why.

Best practice is to use one needle for loading the syringe, and then a fresh one for the injection. If you're going to use the sae needle for both stages, be sure not to allow the tip to touch the bottom of the ampoule as this will also blunt the tip a bit.

Are you cycling your injection sites as well? Maybe alternate the thighs (although if you're right handed, doing the left can be a bit awkward).

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Yeah that makes sense. Just done it. (Before I read your tips!) Same side, was going to alternate but I’m right handed and it felt awkward. From what you say I’m pushing in way too slow. I’ll dart that bad boy next time! Thanks for the tips. I’ll try separate needles too for loading.

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It kinda comes naturally after a while lol

You know when you hold the loaded syringe upwards and expel any air and flick it to reove any little bubbles, just allow a tiny amount to leave the tip and roll down the needle, it acts like a lubricant, its not necessary but it help it slide in soother.

I'll leave you to your recovery, every minute is a step towards being better although it doesn't maybe feel like it right now!

Good job buddy!!!

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Another good tip! I wiped it off after getting air out! Good God I need a factory reset...seems obvious now! All noted. Will be injecting blindfolded soon lol. Thanks for your help. Take it easy

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You’ve bought everything to self administer so I think you’ve listened to your body and answered your own question 😊

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Yes gave myself my 5th injection today and received an order of another 100 vials in the post. That’s me well on my way :)

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