After what I'd describe as a less-than-satisfactory Doctor's appointment on Tuesday I decided to order B12 from Germany on Wednesday, it arrived today (Saturday) and I successfully self-injected for the first time, and it feels great - could NOT have done it without the wonderful support and encouragement and advice and tips from everyone here, thank you!
I could hardly stand up when I went to the doctors on Tuesday - this was the second time I went back and they still did not follow the guidelines, only saying that if another second loading dose "didn't work" then they'd do them again. I figured out that meant there'd be another gap after the second set and at the time I had / still have no idea of permanent 'damage' - ATEOTD I'm "me" so I'm not expecting miracles lol but as my health was deteriorating daily to a degree I'd never experienced before I was duly scared and I wanted to know I had options as I'd read others who inject daily or every other day for months after getting to the subacute combined degeneration stage, and with the stress of trying to battle the NHS I knew that was going to be a hard option.
I used the recommended supplier list from the facebook group and ordered some from a supplier a few people mentioned here. It was *really* hard with the brain fog, and the more you stress, the more brain fog and memory issues you get. I set up a google spreadsheet and searched the forums here, the facebook group, and the net for what I needed. I've attached a screenshot of the two orders I placed.
As per a note on the recommended supplier list from the fb group said I ordered the folic acid from Germany too but I haven't taken that yet as for one I'm booked in a for a blood test in a week (only after I asked, doc didn't even want to see me after first blood test) for folic acid, and second my research is leading me down the MTHFR path and there's - well, if you haven't researched the folic acid / folate 'arguments' then I'll let you enjoy that one. From what I can see, folate is the 'natural', folic acid is the synthesised B9, folate better for MTHFR, maybe, folic acid can make things worse, maybe, and so on - going to do more research before I decide way forward on that one, seems it's trial and error, everyone's different.
The syringes - got 2ml ones because although my initial thoughts as a n00b were "ok you got 1ml you need 1ml" but you need space so it's easier with a slightly larger one, although have seen people use 1ml ones. Pretty much all this lot I got from the supplier list on fb, plus some plasters which someone over there mentioned and I thought would be a good idea, turned out it was - but not only for where I did the jab... The green needles are bigger, got those for drawing up the B12 out of the ampoule and when I took it out of the package I thought I'd have a look at the needle but I was shaking so much I managed to jab my thumb lol, thought haha what a great start Steve! I thought "ok calm down, there's no point shaking like a leaf when you're doing it, that's gonna hurt". So I put my serious face on and got down to business.
I used the empty wrapper from the syringe to protect my fingers whilst breaking open the ampoule - there's a spot on it where you push (both those 'tips' I got from watching youtube videos searching for 'b12 self inject'). I did order a SharpsGuard Ampoule Opener from Amazon (amazon.co.uk/gp/product/B00... but it's not arrived yet and you don't really need it, just thought it'd be 'safer', we'll see I guess.
Then I drew up the B12 into the syringe, took a bit of time figuring out the right hand positioning to do this without tipping the thing up and keeping the hand steady. Chucked the ampoule bits in the sharps bin, then pushed air out of the syringe, making sure there weren't any bubbles in the liquid, gave it a couple of little flicks to make sure. Then I laid the syringe on the desk and slid the cover back on so it lessens the likelihood of me stabbing myself again - another useful tip I saw from the youtube vid on this page restartmed.com/b12-injectio...
Then I got the alcohol wipe out and cleaned the area - upper outer quarter of my left leg - I'm left-handed so guess that's why I chose left but planning to do it daily at the moment so planning to alternate legs. I thought I'd wipe and leave to dry for a bit whilst I swap the needles on the syringe but turns out you (well I did) completely forget what area I cleaned lol so I've no idea if I did inject there but literally just out of the shower so should've been clean, but still, next time I'll do it after I've everything else prepped.
So I removed the green needle, put it in the sharps bin, then put the blue needle on. I got shorter yellow ones as well as at first I thought I might subcut but after more research and seeing it doesn't work well for some and it works faster when you go into the muscle I decided to IM to start with. I got 1.25" length as I'm not the thinnest person in the world - saw one say if you're over 90lbs then 1.5" otherwise 1" but I didn't see 1.5" blue and TBH 1.5" sounded a bit too much for my brain to handle. I felt it go into the muscle so presume it worked ok.
So I stretched the skin a bit taught as that's supposed to help - was a bit worried as pretty hairy. Then I just kinda stuck it in, I didn't hold it far away from the skin to start, a few millimetres maybe, then it went in and felt a bit like going through blancmange! I felt the bit when it went from fat to muscle, admittedly thinking back perhaps it didn't go /that/ much into the muscle so maybe 1.5" would be better but perhaps I'm splitting hairs.
I tried to draw back a bit as that's what a few said on the videos to make sure you haven't gone into a vein but not sure if that worked or not, was a little awkward to do, many don't seem to do that, many do, anyway I guess it's good to check so did try. Then I pushed in slowly - 10-15 seconds per ml one vid said which I think I did about 10 secs - saw a post from someone who said they did it in 1-2 seconds and was wondering why it hurt...!
Then I pulled it out, it was bleeding a little so I stuck a plaster on as had to go out a few mins after - earlier I was like "should I do it before or after I go out" but turns out the self-imposed time constraint helped me focus & not come up with more excuses. I massaged the area a bit as another vid suggested to 'help it move around'. That's it really, it felt a bit 'weird', still does but nothing left apart from a couple of little red dots and I'm sure I'll get better at it as I do it more, glad I've got the first one out of the way, still nervous as hell about it but I can't think of many things I was 'good' at after only one try!
So if you are reading this and worried about SI let me tell you it's nothing compared to the sheer hell of trying to get the NHS to do anything, and there's places like b12d which will help if you don't have the money.
I'm still unsure on some of the issues like the hydroxocobalamin vs methylcobalamin debate as the latter is supposed to be 'better' for actual healing but right now I just want to get my B12 up, I haven't ever felt like I did earlier this week and never want to again, I feel for anyone who has to deal with that but have been encouraged by a lot of what I've discovered via the net in terms of both information and support, that's why I guess I'm typing all this as it may help someone somewhere sometime, if not then hey I get to talk about myself some more to randoms lol.
All the usual disclaimers, I'm a hacker not a health professional, this story is for entertainment purposes only and all that jazz.
Best thing? Heat in my toes. Been years since I had that - switching between hot and cold but since I haven't felt hot for ages it's great. Hopefully this is the beginning of getting better... long road ahead still, discovery, thyroid, no more gluten, and so on!
Thanks again for all your help and support, truly truly appreciated, I love you all xxx
Forgot to add I've still not decided what I'm going to do about the 5 jabs I've got booked in over the next 2 weeks at the doc, I've got blood tests booked for a week Monday and if I phone up to cancel these and tell them I'm now self-injecting I don't want them to cause hassles, but also I don't want to go in there and have 5x the stress of dealing with their "think you're a *special* case" attitude, so yeah I'm gonna decide tomorrow, I want to cancel but got to approach it carefully.
I'd suggest that you get the loading doses from your GP...difficult though it is dealing with the very strange attitudes some in the medical profession take to treating B12 deficiency.
This will 'keep you in the system' which means that you'll be able to access blood tests, further investigations (if you need them) and onwards referrals to specialists (which many find they do need - later, if not immediately).
If you self-treat and withdraw from the system too, you'll lose access to things that you may need in the future.
About the potential for MTHFR variations - yes, some people do have these, but there's a lot of hype and nonsense about on the Internet, usually put there by people trying to sell methylfolate and a whole host of other supplements.
Here's what 23and me say about MTHFR variations (straight from the genies mouth):
Most people don't need to take methyfolate (even when MTHFR variants are present) and in one particular MTHFR variant, it can be positively harmful. And it can also give some very unpleasant side effects. (sorry, it's late and don't have time for more explanation about this). Bioavailability from folic acid is much better, and it suits the majority of people.
See you've ordered 5mg folic acid tablets. Unless you have a proven folate deficency, a 5mg dose will be too high. And if you do have a proven deficiency, 5mg should only be taken for three to four months, then folate levels tested again and the dosage adjusted accordingly. Once a deficency has been addressed, some take a daily 400mcg maintenance dose of folic acid, but some don't need to supplement at all.
Also - over supplementing with folic acid and keeping levels consistently too high (or over the top of the reference range) can cause some nasty side effects (I inadvertently took too mic folic acid when first diagnosed and the side effects were terrible - the first one being insomnia, which was closely followed by others, some of which were very similar to the symptoms of B12 deficency). Here's some information about that:
Hope your GP also checked you ferritin and vitamin D levels - absorption issues often cause other deficiencies which would need addressing - and make you feel pretty ill too.
So...more good reasons to keep within the NHS system...blood test and monitoring. Bad as it can be at times (especially where B12 deficiency is concerned) it's much better to try and educate your doctors so that you can make them - and the system - work for you 😉
Hope your GP is prepared to work with you and look for the cause of your B12 deficeny.
Good luck with the SI and with whatever you decide to do.
👍
P.s. If,your planning on taking B vitamins, take care with vitamin B6. B6 is Neuro toxic and over supplementation can cause irreversible neurolgical damage. Also - if you take a multi vitamin, check the RDA of the B6 - some have over 300% of the RDA - far too much if it's something your body already has enough of.
Hi Foggyme thanks for your reply - just woke up & wow lots of replies lol! Yeah I think just not mentioning I'm also SI is the way at the moment.
I'm booked in for blood tests a week Monday - only because I asked for them. Forgot what I'd asked for so phoned up & they said Vitamin D, Folic acid & Iron. Asked on the phone if I'd had a set of complete blood tests lately and if I could have the results, they said I could ask for a printout when I next go in so I'll do that. From research into my particular issues I am looking for:
B5 & Magnesium ~ anxiety & depression
Thyroid ~ TSH,FT4, FT3 and TPO antibodies tests TPO Ab and TG Ab;
Coeliac tests TTG (IgA) + Serum IgA
Most seem to say you probably won't get all this done by the doc so really I'm going to focus on getting my biz up and running again so I can afford to get my own tests done.
My sister doesn't eat gluten any more since paying for tests and finding out she's got issues with that, hence why I think I've got issues with it too as I've had issues with lethargy since birth and, let's say, more than one instances we could class under the delusion category, plus all the issues with weight & the result of when I previously gave up gluten and lost lots of weight and so on.
I've also seen my mother suffer for as long as I can remember going from one doc to another being diagnosed with this and that - parkinsons but then not, migraines, now platelet issues, recent paranoia about specialist not being a real specialist cos he'd prescribed these so-called 'last chance' chemo tablets but then didn't sign the release or something & she couldn't find details of him on the net (I said not everything's on the net just quite yet even though I've had a permanent 24/7 connection since '94!), believing in her angels & all that stuff. She seems to be up the hospital every other week with one issue or another, yet when I asked if she'd been tested for B12 she didn't sound as if she had been, which I find surprising given the amount of times she has been there but it echoes the struggles for diagnosis I've read time and again here and the various other things people have been diagnosed with.
With the brain fog, memory issues, wobbly gait and inability to walk far I felt like her the last few days, she's like that now after a couple of strokes. I came back as she wants to move nearer the hospital as has to take taxis and where she lives the surgery isn't great and so on, personally I think she's missing a lot that is in front of her eyes and the surgery will get better but just want her to be happy so done my bit and can help her from wherever I am in the world, plus come back if and when she does decide to move. Just want my life back!
I totally agree with you about the MTHFR and methyl situation. Also read similar on the folic acid, the issues, the only for 3 months, but also that it's a cofactor hence why I got it. I'm waiting until after my tests next week when I'll also have done more research though. Currently all the doc gave me when I asked for my results were these:
Also saw about the B6 issue so am aware of that - great to have you corroborate that.
The last few days have been a massive influx of various info but learned lots & it's made my life make a lot more sense now, just wish I'd stuck with my previous diet & not let it get into this state, but I didn't know I actually had issues with the gluten, just saw the results of giving it up.
The last few years in particular have been a living nightmare not knowing what the problems were & not able to do much either. Not easy seeing your life fall apart around you, not knowing why you sign up for networking meetings but then don't go cos you're too anxious to even walk out of the house, waking up every day thinking you're sh*t & not knowing what to do about it when a shot or two of B12 would've sorted it out.
Still, now I know eh.
I'm not holding out much hope for the GP, I've got an appointment to see the ENT on 10th only cos I said I was worried about the lump in my neck that's been there for a while but thought it might be gland issues as only feel it sometimes and further more recent one in my throat which I can feel when I swallow which she said happened to lots of people and it would just go in time.
I don't have my own transport at the moment and I only planned to come back for a few weeks so really want to get back out and on the road again, so fed up of being stuck here - felt great after my initial set of loading doses actually had the energy to get out of the house!
Thanks again
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Just read the 23andme link - yeah it's not folic acid I have the issue with just the gluten so current thinking is more along the lines of this is what happened:
Did you mean over 190lbs use a 1.5" needle? To get through the fat layer? I just ordered 1" needles after using 1.5" ones for a while, I weigh about 11 stones (154 lbs), was wondering about how long they need to be in relation to your weight/build.
1" neeedle should be fine...u less you have a very large layer of fat...and doesn't sound as if you do.
It's not an exact measurement/science...and having a needle that's too long makes it easier to hit bone...not that it would do any damage...just a bit disconcerting 😳.
Weight and/or BMI aren't good enough for noi atoms as to the required length of needle.
I weigh 110 kg (about 220 lb) and I use a 1" needle. That's because I have virtually zero fat on my thighs.
Grab a fold of skin (with fat) over the injection site and guesstimate the thickness. Half of that is the distance the needle needs to travel before it hits muscle. Add 0.5 to 0.75 inches to get the needle length.
So for me I measured 5cm, 2/3 of that is 1.33 inches which 1.25 was close enough, and every time my brain heard "1.5 inches" it went a bit funny - dunno why as it's not that much longer but looking at the green ones I got for drawing up IT DOES!!! *eek*
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but the green one's wider as well. Anyway should be asleep but woke up now can't get back to sleep. Had a couple of dried apricots & some coconut water earlier as that's supposed to help after SI for the potassium, dunno if it did but love the taste of them so not complaining.
Well done Steve! Gosh and brave going for intramuscular. I am retired nurse and have given thousands of im injections but still went for subcut for myself. When I orderred by own B12 I got loads of ampules for my money and injected daily for a couple of week as advised by Dr ******. As far as accepting the jabs at the doctor. It is upto you if you want to go there. I would recommend informing them. I treat myself for thyroid and B12 but have a good GP who just listens and observes and seems to be quite supportive and interested in this self treatment business. He has arranged that I get my thyroid blood done at the surgery. I also quite enjoy getting myself much better in a way the surgery can observe and I make sure improvements or problems are noted on my notes. It is my own little way of educating them.
Hi Mandyjane. Just to let you know...I've redacted the name of the medic you refer to as naming doctors contravenes forum guidelines.
Nothing to worry about, happens inadvertently quite often 😉.
👍
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Yeah good points Hidden I think I'll go to them and just see how it goes, they don't need to know anything at the moment unless they google me and find this but I'm sure they've better things to do.
On that paranoid front, not feeling great this morning, woke up at 3am, responded above then was up until 7am, just woke up and dealt with bad energies going "Well Steve you need to get out of the house that's your problem" and me trying to explain yeah I'd love to but y'know it's been part of the illness. Did 120,000 miles traveling a few years back - think I really want to be like this? Think I want to be stuck the f*ck back here with no energy to do anything and inability to focus on stuff?
Think it's gonna take more than another 5 jabs the doctor ordered for me to get out of this slumber, glad I'm SI. Now to continue to try and ignore the bad energies around. Got a week of empty house coming up as of tomorrow so that'll help. Can't wait to get my life back, this sucks!
/rant
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These issues are very common with people who have been very active and or stressed. It often strikes long distance runners. A good book to read might be Dr Myhills 'mitocondria not hypocondria'.
I have had to learn to be objective with myself almost like a scientist observing myself and taking note, without emotion. Just a kind of 'thats interesting? I wonder what happened here? I have learnt not to jdge myself.
Compter eng werd.
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Thanks but that doesn't explain how I had all the symptoms from a very young age, < 10. I'm more inclined to go with the low stomach acid and gluten story.
Agree with the being objective especially now as I can physically feel when I get stressed!
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Hmm guess it does explain the younger age stuff, I read what you wrote first as being the cause of it. Also being a little defensive as seen many say B12/PA misdiagnosed as CFS (I think, memory issues lol).
"Found' a copy of that thing you referenced on the net so having a read, thanks for the heads-up Hidden !
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"Most CFS patients are not depressed, just pissed off and frustrated that they cannot do more."
Hah
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Objective and kind.
All things with me tend to lead back to thyroid and the more I explore it all the more it leads back. Low acid is a thyroid symptom it is the reason people with thyroid issues tend to get low B12 and gluten is a commonly thought trigger for autoimmune thyroid issues. I think we often do have tendancys from an early age.My probs started age 15 but my child is ill aged 9. I personally wonder how much car fumes contribute and I also imagine that my generation will have a much higher mortality rate at an earlier age. I dont know when we started ingesting lots of flouride but that can also lead to issues.
Hi mandyjane very interested to read. You also self medicate for Thyroid. Can you tell me more regarding this and is it safe. Again as with B12, told I within range!! Sick and tired of " fighting " a constant losing battle with numerous GP' s
On the thyroid forum it is apparent that it is often unsafe to be treated by doctors. I have been on the forum for several years. In the beginning I paid privately to see doctors recommned by others using the forum as time has gone on Ihave become more confident. A common problem with the medical profession seem to be doses based on blood results and not symptoms. This usually means not enough hormone to supplement and ongoing deteriorating health conditions with multiple symtoms and some time coma or death. Rare but it does happen and we have seen one death and a couple of comas on the forum due to no treatment or not enough. Unlike B12 it is possible to overdose on thyoid hormones so there needs to be some care and very careful slow increases. Interesting the only overdose I have seen on the thyroid forum was down to a psychaitrist prescribing some active thyroid hormone at too big a dose. He was actually doing his very best but made a mistake. His patient carried on taking the prescribed medication even though it was causeing lots of anxiety and palpatationsas she trusted his opinion more than her own body. It didnt do her any lasting harm and she recovered once she stopped the medication. When we prescribe for ourselves we tend as we are not relying on a doctor to reduce quite quickly if we feel uncomfortable. IT can be done very safely in my opinion and although the rules of the forum are that 'it does not encourage self treatment but understands the reasons why' so although the admin will never enourage you do self treat there is support from admin and lots of other thyroid patients to do so. It is quite a tricky and complex business treating the thyroid and not as simple as taking B12. There are lots of factors to consider to reach optimal health but it is very interesting and I think safe as long as you keep posting and asking questions. A good book to read on the subject is by a Dr peatfeild. 'Your thyroid and how to look after it' I think. It is a good guide and covers a lot of the bases. If I did not self treat now I would be very ill very quickly. If I miss 2 doses I cannot maintain standing position and I was close to a coma a while back. My GP aware it is on my notes but noone dares prescribe and frankly I prefer to do it myself. I think it is safer.
Well done to you. It's liberating doing your own. ( expensive sadly )
As someone who is gluten free I'd suggest you just switch. My NHS test was negative the private one positive. Which all it did was waste time- you can be gluten intolerant and have nasty side effects. Just go for it- I also gave up sugar and dairy too.
Thanks Howard39 already done, never knowingly consuming gluten again! Did it ten years ago and felt fantastic, just didn't realise it was actually killing me
LOL no thanks, never liked school, think the feeling was mutual! They didn't have any computer lessons at the time and all I wanted to do was hack on code. I guess it's my logical thinking from code, i.e. software either works or it doesn't that I don't need to be told a million times and since discovering the B12 issues last week and connecting the dots I can see I've been slowly poisoned all my life, and I kinda accidentally proved that ten years ago, now I know the reasoning and evidence behind that, plus I've been through all the "oh I can't eat bread / oh gluten free bread is shit" "oh what do I eat" etc. so am lucky in that respect. I was at the point where I wanted to open a cafe selling decent healthy food cos it's not that easy IMHO to figure out a decent diet, and do all the prep and so on, plus on the geek side I wanted a 'home' for Free/Libre/Open Source Software which doesn't have a 'shop' or 'sales team', it's just there ('the commons' / 'commons-based peer production'), plus I wanted a place where remote workers / 'road warriors' / makers / etc. could get out of the house for a bit and not have to endure screaming babies and crappy wifi in coffee shops.
So in terms of the food I'm fine, I just need to increase my variation as mostly I live on 1,000 types of chilli It was really hard the first time though, you get so used to just eating whatever, then suddenly you notice there's gluten in 99% of the labels you look at, but after a while once you get used to it you notice different things. It's all about what you focus on grows.
I also don't really use the 'freefrom' aisles, they seem mostly a con - and looking at the ingredients is shocking sometimes. I mostly cook from scratch, but it took a long time to also fit my work around that too, but then the benefit there is it gets me off the screen for a while - takes me half an hour to make my salads at lunch!
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So hah yeah, this is what I wrote back in 2005, when I just thought it was 'organic' food and was moaning about the food companies, before I knew it was gluten intolerance:
To be honest I really don't mind, there's nothing better than fresh food straight(ish) from the ground without any sh*t on it, and preparation all adds to the enjoyment of it. But sometimes it's not practical, I want options for when I don't have the time or want, and they all seem expensive still. I went to the organic/natural food show at olympia a few years back looking for potential things to resell, closest I found were these ball things but even they were a couple of quid each.
Now I cook from scratch my food costs are incredibly low too - when I was at uni many years ago I used to buy the cheap tins and frozen stuff but they just tasted awful and gave me heartburn - remember having a tin of spag bol from Netto which had *Maximum* 3% meat on the label lol. Now I have great food, and hopefully in a few months time I'll have a bit of a greater body and mind without the gluten I stupidly let myself eat again!
It is so awesome that the connection between everything I feel and b12 deficiency is so clear in here, yet a psychologist wanted me to come at lease twice a week (at a 100$ for a 45 minuts meeting) in order to "solve this issue". Thank god for the internet
Awesome, that's why I type a lot, helps feed the current search engine algorithms.
And thanks to us humans for the interwebs let's leave fairy tales designed for mass control out of the equation lol
Think I just paid the same amount for one of your psychologist meetings to inject the stuff daily for 3 months & still have enough spare for a few mishaps!
Do post your journey, am sure it will also help others!
Thanks carer999 - I wouldn't say brave, just more anxious about the potential bad outcome and a short time constraint. If it's gonna make life more bearable then small price to pay.
Did it again today, used the other leg this time and decided to shave the area first. Much smaller dot this time, and enjoy the tingles even though they only seem to last a short time at the moment. Trying to sort out all the cofactors too otherwise it seems fruitless.
The thinking is worse than the doing by a big order of magnitude!
I was like you until I realised I was soooo ill. I get monthly jabs from my doctor but it's not enough . last year around Christmas time all I could do was lie on the couch feeling my life ebb away. I had my order in for at least a month but was too terrified to do it, especially as my daughter who is a nurse begged me not to. Nobody could understand why I just couldn't do anything . One day I realised that if I didn't do it I would get to the point where I physically wouldn't be able to. With tons of questions to this group & lots & lots of support I eventually managed it. My hands were shaking like crazy & actually lost two vials. When I eventually pulled my skin tight, relaxed my muscle & laid the needle on, it sank in like butter, thank God. I still don't like doing them but goodness knows where I would be right now if I didn't. I just got to the stage where I absolutely knew I had to take matters into my own hands
Well done you! Sounds like you're more than justified to do that Justified I'm chomping away through them like there's no tomorrow... I'm hoping that once I get my blood tests back next week I'll be able to better figure out cofactors as at the moment it's lasting a day if I don't do anything but today I went into town for a couple of hours, then the bus driver decided to shut the door in my face and drive off, which is nice when there's only one every hour, and what with the stress of that and being out in public it made me extremely tired and agitated again.
But also I guess I have to remember it's only just over a week ago I could hardly stand up straight so I need to take things easy, just glad I can inject every day at the moment, even if it isn't "sticking". Have to train my brain though, a few times last night it started thinking about the injecting and it still eeks me out but it's not actually that much of an issue now when I do it... 12th SI so getting better every day.
Glad you took the plunge, being beholden to the NHS's woeful "care" is soul and life destroying.
It's still not easy for me to do and sometimes I leave it too long thinking I'll"get over it" then I am nearly to stupified to do it. Nice driver by the way, Glad you made it home ok. The NHS doctors are hopeless, although mine has agreed to monthly"for a while" . I've not mentioned to her again just in case. I believe mine is due to Hpylori infection which I had to figure out for myself and ask to be tested for, which she found amusing until a positive result came back! This should have been caught years earlier instead of keeping telling me I had IBS! Anyway,thank God we educate ourselves, I feel soooo sorry for the poor souls who can't &put all their trust (and lives) into their doctors hands🙁
Well done. I self inject subcutaneous methylcobalamin for 3 years now (10 mg daily, but that's because I went undiagnosed for decades and could no longer walk. Am doing well now). However, I do much better on methylcobalamin injections (from Arnika Apotheke in Germany) with methylfolate. Folic acid supplements made me much much worse as did hydoxocobalamin. See 'Wedgewood' info here if you decide to go down that route.
Thanks ribbon yes I was reading your posts with interest. I'm very much starting out on this journey and do feel I might benefit from methyl but happy for the moment to chomp through the 97 hydros I have left in the cupboard
I've got enough funds due to me to get a decent set of cofactors - at the moment I've just got the 88x5mg folic acid tabs I have left, some cod liver oil with vit D capsules I was taking anyway, some "high strength" vit B complex & multivitamin tablets my dad had which were free samples shoved through his letterbox, and some paracetamol to keep the headache at bay.
Oh, and I've also been on champix for a couple of months cos when I said to the doc I was worried about the recurring lump in neck issue which I thought might be just flaring up glands and lump in throat issue and was worried it could be smoking she said well best way to stop worrying about lung cancer is to stop smoking so I said ok, went to the stop smoking clinic there and decided to go on champix even though I hadn't before cos I'd heard about psych issues. Did amazingly well and hadn't smoked until last week when I was so p*ssed off with this B12 stuff & bought a pack of tobacco. Finished it the other day though and haven't smoked since, really don't want to go back to being a smoker even though the evil monster in my mind does...!
Anyway so far I have on my list:
Magnesium
Methyl folate
Vitamin B complex
Vitamin D
Potassium - "We need 4,500mg of potassium daily"
Iron
Still figuring out what amounts I need, brain fog and memory issues tend to develop the more I look into it but I'll get there, just happy I have a cupboard full of B12 to keep me going!
I think mine stems from low stomach acid + gluten intolerance = thyroid issues -> B12 deficiency.
I definitely had B12d symptoms from a very young age, it's been quite a revelation.
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I forgot to say how awesome it is to hear of your ongoing recovery!
I hope I improve too and can help spread awareness of the issues and do something to make the process easier once discovered, I dread to think how much B12 I've used up just trying to figure out what the hell's going on and what I need. I'm very lucky I still have family around otherwise I dread to think where I'd be right now. Hopefully this is the last of the very low lows!! The only way is up etc...!
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...just read your bio ribbon - I see many similarities! Also have wondered if I'm just lactose intolerant not all dairy.
Anyway must try to get some sleep, got to get up & waddle down the road for half an hour then waddle back again just to have an injection I could have here (there is *no way* I'm trusting myself on the bicycle yet, brain way to fried, might forget I'm on it!) but am looking forward to getting out of the house, just glad I've had 3 injections - if I'd waited for them I doubt I'd be able to stand up.
Looks like you're on the right track, stevepurkiss. I don't take any prescription meds now. 'Champix' is one I've never heard of. Just looked it up and wouldn't fancy it - I never trust meds & potential side effects when brain is struggling to heal already. That's just me. I'm lucky, like you, to have had support, in my case from a very patient and kind husband.
I managed to ditch the smoking habit (chain smoked in my 20s) when I read that nicotine eats up B12 very quickly. It was pure fear that made me drop the cigs immediately (cold turkey) and I never looked back.
Yes, milk is very inflammatory for the tummy especially for anybody with gastritis (which I used to have from PA), coeliac etc. I find I can drink as much Kefir as I want to though. I make it myself (much cheaper!). It's a fermented milk drink (like yoghurt) and the lactose and other milk proteins are digested by the good bacteria as it ferments so I have no problem with it at all which is nice because I still get my calcium etc and it has improved my gut bacteria. No gut symptoms anymore. B12 & folate help the gut heal too.
Looks like you're on the right supplements so far. I use D3 5K daily and also Cod Liver Oil (Nordic Naturals lime flavoured liquid, easy to swallow) because the natural vitamin A is really good for thyroid and metabolism.
My magnesium needs shot up when I began D3. As did my calcium. I always take vitamin K (MK7) with calcium to stop it potentially lining arteries or forming kidney stones. I'd be wary of iron (can be quite a pollutant). I found that methylcobalamin and riboflavin (B2) greatly improved my iron levels with no need for iron supplementation. B2 is hugely important for those of us with pernicious anaemia and helps a lot with energy creation along with the thyroid metabolism. Yes, your'e right - thyroid disease left untreated will eventually cause B12 deficiency.
Like you, I was getting progressively worse under doctor's care and had to take action. My understanding from years of reading is that I was born with genetic predisposition for PA and when a child or teenager I was fine until I got a flu or other infection or had dental work (laughing gas/nitrous oxide used by dentist - it hoovers up tons of B12 from the body) I got very weak and ill and nobody knew why. I would eventually recover. The thing is a young body can often recover and because our stomachs still make a good amount of parietal cells (our antibodies against parietal cells can be quite low in many cases when very young) we can eventually absorb the B12 again when the stressor has passed.
As one ages and goes through various stages (adolescence for e.g. is hugely stressful uses up tons of folate & B12) our parietal cells dwindle because of our genetic predisposition kicking in and we no longer bounce back so easily and of course our stomach acid gradually lowers as well after our thirties, as you've realised. Eventually we lose our liver stores of B12 and end up in a bad way...I needed 20mg daily injections and huge doses of folate, potassium etc for the first year before I could walk at all. Now I'm going for walks and doing house work and considering part-time work again.
Very best of luck with it all. I'm happy to share info because I've been helped so much by online forums like this one. Without them I would still be bed/couch ridden and perhaps losing bodily function and mental capacity. Doesn't bear thinking about...
By the way an immunologist I saw for coeliac when first diagnosed warned me not to take paracetamol. Neurofen etc are very hard on the villi of the stomach and can cause them to wear down apparently. I don't need pain meds anymore. Since folate, and natural dessicated thyroid (Erfa) and B12 etc I'm completely pain free.
Thank you so much for your thorough reply ribbon you wouldn't believe how much help that is! Been a busy day today, down the docs for my jab, got a printout of my blood test results & been scanning & stitching those all day so I could post them here & on the FB group hopefully to get more clues for the next stage.
Stopped taking the paracetamol today - wow there's so much in your reply above I'm gonna keep coming back, thank you! So good to hear you're getting there too, we are strong beings when you think about it.
I've been doing the same today with my blood results. So far so good but very difficult to get Free T3 tested (lab won't do it).
Turmeric powder (1/2 tsp in soup or casserole etc daily) is really helping me too. My husband does great on it also. It's a potent anti-inflammatory and great for PA guts. Best to add it to food rather than buy capsules (needs fat & heat & some black pepper to activate it). I learned about it (and the kefir, which he uses himself) from a BBC documentary by Dr Michael Mosley who talks a lot of sense. I get a gluten-free one from iHerb. We add it to soup along with a few tablespoons of bone broth.
Bone broth healed my husband from gastritis too (induced by HPylori). It's fantastic for repairing the collagen in our leaky guts. It can be hard to find a gluten free one but we get Osius brand in UK now. It's all rather expensive along with the supplements but I believe it's worth it to heal. The gut biome is hugely important for our healing.
I've heard lots about Turmeric but not used it in recipes as yet, will have to try! Bone broth - still has that weird sound to it, I'm sure it's not as bad as it sounds and also keep hearing about that so must try that too.
Hopefully once I've got my B12 levels up I'll be back on my feet and in my own place / not here so will have more chance to cook properly, for the moment I'm focusing on just cutting out the gluten & jabbing myself every day. Am feeling a whole load better than last week but that's also to do with the fact the house is empty apart from me this week, no doubt the stress will increase again next week so can't get enough B12 in me at the moment!
Interesting - I thought turmeric was used in quite a lot of cooking. Will heed the warning thanks, although I don't seem to suffer from bruising. Unless I walk into things, which I'm not doing any more thankfully cos I've been SI for a week now and can actually stand up straight and not walk into walls yay... and it's thanks to wonderful people like you Foggyme you're a star!
Hi stevepurkiss. Talking here about the high dose supplements now available. Think the amount used in cooking would be okay...assuming that this is not used excessively (no idea what ‘dosage’ would look like in terms of the amount used for cooking).
So pleased to hear that the B12 is beginning to make a difference 👍
Yes, and it was great that the nurse today also obviously saw the difference too. Am aware this is the beginning of a (hopefully) long journey. Am also determined to do something to help ease the process when people find out - last week was *really* hard to try and organise a ton of different things in order to SI - at least it took my mind off the actual injecting though, and taught me to observe my mind a lot more, I do tend to do a million things at the same time & not pace myself enough.
Thanks again!
Just did my 5th SI today & feel like a pro now So thought I'd post an update on what I've learned so far:
- Today was the first day I remembered to pull the skin taut. Today was also the first day blood didn't come out after and it left only a very small dot you can hardly see. I think the two are related
- Warming up the ampoule in your hands is a Good Thing.
- SI is really the only answer (IMHO, disclaimers & all that) to recovery. It worked out with all the kit about £1 per injection, for me that's a whole load cheaper than having to fight a failed system and the stress just making me more ill. There's places who help if you don't have the money.
- It's still a whole load scarier in the mind than in reality. Every time I think about it it still weirds me out so trying not to, and when I do I observe it and move along, luckily my brain's still a bit fried so I forget what I was thinking about anyway lol.
Hi I have just been given ' begrudgingly ' by GP.. a trial ' loading ' dose of 6 B12 Injections. The nurse who did them said I would have them every 12 weeks after. The following week received a letter for more bloods to be done, hence I do not think GP will follow through with 12 weekly, because according to her I was within range!! I have read and follow with great interest your posts. You state you inject daily. How long does the amount last that you have ordered above. Seriously thinking about self injecting weekly. Cannot do any harm. Like so many other people, possibly yourself included. I have been ill for many many years. I now fear greatly that it has done irreparable damage 😣😢😢
Hi maypole66 sorry to hear about your struggles but good to hear you're thinking about taking control. Please of course remember I am not a medic just someone who is trying also to get better!
I ordered 100 ampoules, so if you're only injecting weekly that's 2 years worth! The date on the ampoules is 03/2020 though so that should be fine.
It's a whole load cheaper than this rigmarole of fighting the system.
I'm injecting daily at the moment as I don't know how much damage I've already done - I was diagnosed with large red blood cells back in 2015 but although that's a sign of B12 deficiency it wasn't associated with it then. Also I was in a really bad state last week, plus from what I've seen it says you can't overdose on B12, the cyanide treatment is 5,000 times the amount of one injection.
I believe in the U.S. I read the guidelines are daily for a week if have neuro systems, then weekly. In the U.K. it's every other day until no further improvement. I'm just gonna take it how it goes - the way I see it is the more the better at the moment to give my body opportunity to recover, and the rest it doesn't use goes down the loo, but with 94 left I'm totally OK with that!
Thanks for quick response. I was diagnosed in 2003, yes you read right!! 2003, with large red blood cells. Been a constantly struggle since. GP thought to tell me only 6 months ago ( think it was 6 months, cannot remember surprisingly) ... But unbelievably insisting I am ok. She said she wrote a correspondence to a friend in Haematology, who apparently said there is no suggestion of PA. So as you can see I am really fighting with them. I will keep you updated on my decision. Many thanks.
Well to be honest I really don't see what the end result in fighting them is, I'm getting far more info searching online and connecting the dots, no solution the NHS give me is going to help as far as I can see.
From what I can tell, your levels need to be high for it to do any repair work as well as operate your body and mind. There's also a whole debate around whether the hydro injections actually do much repair and the methyl is better at that, but at the moment I'm happy to have any B12. Everyone's going to be different.
Got to go now, back to the surgery for smoking clinic and to ask for more blood tests, cos the doctor certainly isn't so once again it's DIY NHS time!!!
Just thought I'd add keeping a diary also helps, nothing special needed just write down the time and what you feel. It's helped me see how I stress myself out as well as being a good record of what's going on.
WOW what a fantastic post. This has helped me greatly. Not sure if you have seen my recent posts, but i am going to start self administering B12 injections. I have found out they use Hydroxocobalamin when i had " loading doses ". So will order that i think, because i will still have 3 monthly B12 at Surgery ( may as well keep in the loop )..That's if they don't stop me having it after i lost it with a " trainee " Dr yesterday!! ... Just fed up with fighting with Dr's all the time. Waste of time. Particularly mine. I have been to the Surgery more times this year, than i have in all my adult life!!....Hope you are still feeling good on self injecting....
Just done my 50th today - I think the lessons learned so far is cofactors are important. I had started taking folic acid but my lips went dry and had brown patches so stopped that but B12 needs that. I recently started taking methyl folate, seeing if that makes a difference. Also now taking 15,000UI of Vit D as blood tests showed I had deficiency in that, and magnesium, Vit K2 complex & Vit B3, plus a B Complex & multivitamin, and zinc on the way. Did get some l-carnitine fumarate but reading that's not good for hypothyroid so stopped that. So much to research & discover & try out cos everyone's different!
Just wanted to thank you for this information Steve. I ordered from your lists and have just completed my second jab. Almost painless. First time, I too jabbed my finger pulling the cover off the needle so lesson learnt. Feeling more focused already and a little more myself after years struggling with 8 week jags cycle and GPs who don’t seem to get it and want to diagnose me with ME instead.
Awesome! Just done my 50th lol. Just managed to get lots of cofactors so that's helping, think I wouldn't have needed as many if I'd had those from the start but y'know, cashflow...!
Good to see I'm not the only one jabbing their finger
Are you still doing every second day? Any improvement? Any side affects? My family are a little concerned so trying to reassure them that this is better than just following GP advice and getting progressively worse.
Daily, sometimes twice but everyone's different, it depends on many factors. As usual I'm no qualified advisor, just communicating my experience.
B12 is just one part of the equation, you have to work out from your symptoms and life issues and listening to your body to see what works. The FB group have a file with details of cofactors.
As for improvement - well, I couldn't stand up or walk straight just over a month ago, and two of those weeks I spent building a website for a client so yes, I'd say there's been an improvement. As for the Doctor, well still no word back from the haematologist they wrote to six weeks ago who's supposed to be supervising my treatment.
Side effects? You start (or continue) to realise just how much stress depletes B12 and thus how much your thoughts affect your health and, well for me at least, having more B12 going around my system seems to give me the ability to see that.
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First time self injecting
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Losing my Internist!! Self injected first time today! 
