Hi there I have decided that I'm not going to battle with my doctor anymore, I've tried to get my B12 injections increased to no avail, my last blood tests to see if I was absorbing B12 came back "NORMAL" whatever that means? still have all my nuro symptoms, but as my doctor told me at my last visit the damage was done! and the nurse giving me into to trouble for being early! absolute disgrace! so I've decided I'm going to self inject, can anyone please tell me the best place to order B12 and the correct needles to buy, I need to try this myself as I've had enough and I think it's the only way to try and take control of my own health. thank you in advance.
Going to start treating myself, self ... - Pernicious Anaemi...
Pernicious Anaemia Society
If you are on a phone, scroll down for Related Posts. Think you will find some info there ☺
I've had a look and I don't have a clue I've seen a link to 1ml & 2ml syringes but I can't find B12 and I don't have a clue what needles to use I will just have to Google it and hope for the best? thank you for replying x
people source from amazon.de, goldpharma and mycare.de ... and there are probably others.
amazon.de and mycare.de are German on-line pharmacies so translation can be a bit of a problem sometimes.
I get my B12 Depot-Rotexmedica from Versand Apotheke, in Germany. I usually buy 10 ampoules at a time as I can't afford to but a larger pack. Just make sure it's the hydroxocobalamin. The postage to uk is about £8. You just put in your card details to pay. Dead easy x
Company called ciringe on amazon do a pack of 36 blue, green needles syringes and swabs for about £13 but i know i have bought from a company called proximity who sold me as above with two sharps boxes but 100 total for about £18/20
Hi Jacqui0x. On a side note, I horrified to read that you still have all your neuro symptoms, and even more horrified to read that your doctor told you that 'the damage was done!'.
What!!! Unbelievable. And of course your B12 results won't show a deficiency - you've been having injections. So the levels will be high. Possibly very high.
It would be very useful if you could get your B12 results, and the reference range, and post them - wondering what your GP calls 'normal'. If they're low in the reference range (but not deficient), that's not normal, following injections.
Don't have time right now (it's very late) to look at your previous posts in details, but with neuro symptoms, you should have been having injections every other day (after the loading doses) until no further improvement. For some, this take many months. This is vital I order to prevent potentially irreversible neurological damage (sub-acute combined degeneration of the spinal cord). Your GP cannot assume you have this - or other permenant neuro damage - unless you have seen a neurologist and had an MRI scan of your head and spine.
I see you have been seeing a rheumatologist but don't see any mention of a neurologist? If you have neurological symptoms, your GP should refer you to a neurologist for further investigation and to rule out any other potential causes of your symptoms.
And he should prescribe the neurological regime of treatment for B12 deficiency. There's more about that, and diagnostic and treatment protocols, in the PAS pinned posts to the right of the page when you log on. Might be worth highlighting anything relevant to your case and taking it along to discuss with your doctor.
Whilst it's true that some people do suffer irreversible damage due to untreated B12 deficiency, it also true that some people suffer irreversible damage due to undertreated B12 deficiency - and your GP needs to make very sure that you are not one of those people.
Please do not let your GP assume that it is too late and that the damage has already been done unless he has hard evidence (in the form of MRI results) from a neurologists stating this and you have had an intensive course of B12 injections (the neurological regime). It can sometimes take many months of treatment (up to two years) to show improvements, so it is certainly,worth persevering with this.
You should certainly have this if you have been recently diagnosed.
Sorry I haven't had time to look back at your previous posts right now - if you've already been down the neurology route, then just ignore me 😀.
But still use the evidence in the pinned posts to try and get the injections from your GP.
Please post again if you need any more help or advice - you GP sounds extremely ill-informed about B12 deficiency (indeed, has he even investigated why you have it?). Tut, tut tut, I despair of these GP's 😖
Please take care and good luck with SI, if that's the route you choose to take. Many people here to help you with that if you have any problems 😀
Hi Foggyme I apologise in advance I'm dyslexic so my writing isn't the best, I was diagnosed in 2011 with M.E & Fibromyalgia, I've had nuero symptoms for 4 years before that and lupus symptoms including butterfly rash, anyway I was diagnosed with PA and vitamin D deficiency I think just over 9months ago, aswell as nuero symptoms I've had bouts of alopecia and I'm suffering from muscle wastage, no explanation given to why that's happened, in a previous post I included a picture when I seen the rheumatology doctor she sent me for a nuclear bone scan, i was then sent for a further xray as it showed abnormalities, she diagnosed me with wear and tear arthritis to the base of my spine, inside my hip joints and my shoulders, I also get severe odema in my lower legs, I get breathless like gasping for air, even turned yellow at one point? the nuero symptoms are staggering, slurred speech, words coming out wrong, infact I fell off the pavement 2 weeks ago in front of a bus while visiting my dad in ICU I could go on, my Gp refered me to the pyschatratic department, I didn't go as I know the mania, depression, anxiety and irrational thoughts are arising from the B12, basically I've had enough, I can't put myself through anymore battling with a doctor, all I know when I was first tested all my levels were extremely low, so sorry for the long reply I'm going to find the links and order everything today, my husband says he'll inject for me & hopefully if it works my hands won't shake as bad and I'll be able to do it myself Do I just phone my surgery and ask them for copies of my blood tests? again so sorry for the long reply x
Sorry Foggyme Foggyme i forgot to mention my great grandmother, my grandmother and my aunt all have PA x
Hi Jacqui0x. Oh dear, oh dear...sounds like your GP knows nothing about PA...like so many other we read about.
So sorry that you've obviously not been taken seriously about this, and yes, it does sound like many of your symptoms could be down to PA (though there could be other causes). And with a family history...grief...what is your GP thinking (or, more to the point, not thinking).
And it could well be that you have a big package of different autoimmune conditions since they do tend to come along in groups.
Sadly, so many are driven down the psychiatric / anxiety / depression route alone, when B12 treatment could be the answer (as many here have found).
And yes, if you phone reception at your surgery, they should be able to print off all your blood results (your absolute right to have these).
Can well understand why you've elected to go down the SI route and really hope that this starts to make a difference for you very soon. Just so sad that you've been forced into this because of the way your GP has dealt with you 😖.
And very well done to your husband...
Very best of luck...lots of people here to help if needed...and sure we'd all really like to hear how you get on 😀.
Thank you so much Foggyme I've posted a link in the comments to make sure I'm ordering the correct B12? I have to give a go, I've been sick for tooooo long, I'm hoping once I SI I get better then I'm going to tell my GP that I've had to treat myself and then change my GP, after all my daughters could inherit this, prays they don't 🙏 if that happens no way will they be treated like me x
Good for you Jacqui0x. And a change of GP sounds like....well...just what the doctor ordered!
If you have a look at the link fbirder gave above and then see his reply to Sallybones (the first reply in the thread) that gives information about B12 supplies.
Most people use 1mg hydroxocobalamin (though a few prefer 1.5mg - I use the 1mg).
The German site fbirder gave a link to offers an English translation option so should make it easier to see what you're ordering.
Good luck 😀
Thank you so much Foggyme I don't know if it's just my brain that's not processing things or my eyes not working, I missed fbirder post 🙈 I'll check that right now, I really can't thank everyone enough, I'm going to order today that's a guarantee, as soon as it arrives I'll let you know in saying that I have 3 vials in my cupboard from my Gp prescription but I'm scared to use them, 44 years old and I'm scared to use them incase the Gp says what happened to them? X
For me it's eyes and brain both! They both see and think whatever they like, irrespective of what's actually in front of them on the page 😖.
And I know what you mean about vials in the cupboard...I was in the same position...and they're still there! Bought and used my own. And feel quite cowardly for not using them (but at least I gave no grounds that could then be used against me...)
How sad to be so wary of what a GP might say...just because we want to be well!
Hi. I was undermedicated and use sublingual B12 and folic acid. My B12 count went up from 400 to 800 and i felt better. I lack your courage to self inject but thought I would mention it. Good luck and get well xx
This is all brand new to me. I have been on B12 injections (one a week) for two weeks...due for another in a day or two. I bought sublingual B12 at chemist..haven't a clue whether I need folic acid. I live alone and literally have no one to advise me on anything, so I googled and came upon this site. I just found out a minute ago, reading a post, that depression and anxiety can be a result of lack of B12. That's encouraging, as I wondered why on earth I was so anxious about "nothings," and feeling down. My B12 levels were well below the acceptable range so my doctor put me on the B12.
How did you know you needed folic acid? Is it mentioned in the blood test results?
Hi there LCW8 I asked my useless GP about folic acid and he said I didn't need it? yet everything I've read says I do? the wonderful members on here will answer you if you write a post, I'm going to phone my Gp surgery tomorrow when it's open and ask for copies of my blood tests as the members on here are way more informed about B12 deficiency and PA, depression and anxiety is common x
Thanks Jaqui. I have a copy of my blood test, but don't think it mentions folic acid. Its 2 am where I am (in New Zealand,) so will turn it in soon, but I am very glad I came upon this site. I asked the pharmacist if I could buy syringes for self-injecting hydroxocobalamin, they said, No, you have to see your doctor!
I wasn't too happy about that,, because I want to have some measure of control over the situation and it seems to me that before the end of the week I have the extreme exhaustion and weakness etc back.
Thought maybe every three days would be better.
Anyway, I found (the only) bottle of methylcobalamin in the same chemist shop (a drop under the tongue daily - though I am only doing it three times a week - don't want to upset the apple cart-with the injections!)
I have suffered lack of B12 for about ten or more years and I know I have done a lot of damage to myself in waiting that long to be treated, except I never discovered what it was till a couple of weeks ago!!
Thanks for your encouragement, I am grateful to have some real help from people who have suffered the same thing as myself and who are obviously far more knowlegeable!
Hope it all goes well with you!
It's terrible the situation we are in, we only want to be well if you can find your blood tests I'm positive if you post them here the members will be able to tell you exactly what's going on, I feel you with the chronic fatigue some days I can barely move and if I push myself I end up worse! vicious circle. The only way is to treat ourselves at least try, from what I've read from members some have got their life back after self injecting, I'm definitely taking this route, I hope you get better too ❤ sometimes I'm quite on here but without this site and the members on here they give me hope for a healthier future x
Hi there LCW8 I asked my useless GP about folic acid and he said I didn't need it? yet everything I've read says I do?
You do need folic acid. One of the reactions mediated by B12 also needs folate to function. But it's quite possible that your diet supplies enough, especially if you eat lots of leafy green veg and lentils.
Personally, I reckon there's no harm in giving nature a helping hand by taking supplements. 400 ug a day should be enough.
This is my basket goldpharma.com/basket/ it says oral?
Your basket won't show up for us, so we can't see what you're planning on ordering. You need to get one that says either
- "ampoules/phials (oral/parent)" -- where "parent" stands for "parenteral", which means for injection, or
- "solution, injectable"
(see the dosage forms filter on the left side of the screen).
Thank you jade_s when it said oral that's the bit that had me confused? it's for 10 vials, I thought that would be ok if I inject every 2 weeks to see how I go, I'm going to the canary islands in January and I'm going to see if I can buy it over the counter there? x
oh yeah that confused me at first too, but i guess it's because you can just drink them too LOL!
I personally wouldn't hesitate to get a few extra boxes as they should be good for at least a year or two, and then you get more for your money (in terms of shipping costs), plus some extra just in case you decide to go more frequently or get stuck over the holidays. That's just my opinion. I don't know the situation in the canary islands.
I get my 'tools' from Medisave who are online and they supplied 100 off each of the 21g (blue) injection needle. 23g (green) draw up needle, 2ml Luer Slip syringes and preinjection wipes by post for around £17 a couple of weeks ago. The German suppliers all have English language versions of their websites and will supply by courier with a charge of around 8 Euros and will supply 1mg in 1ml ampoules of Hydroxocobalamin in quantities of 10 in a pack for, I think, around 7euros. I use their Vitamin B12 Depot product and fortunately I have a student member of a partner family from German who brought me a 100 pack just last week - they inject just fine.
Just put what you are looking for into Google and you will have plenty of choice. Then you can use the prescription medication as you are directed and the privately sourced stuff whenever you feel you need it.
I would add though I am just another B12 deficiency sufferer and not medically trained, but like most of us getting to know more about my condition than my GP. You are the worlds leading expert and authority on one essential subject - you. The GP only knows a little about many problems and even then only what you tell him about you.