I can only find cyanocobalamin on either sites, I am not sure about the *Mycare* one because I can't read it or get any information about the product.
I am really at my wits end with this condition I have I just want to break down because nobody is understanding that I need MORE .. I seriously need help
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Krealan
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Like you I found this difficult but it was because I need a high dosage (1000mg) so I had a long conversation with my GP and now I get my b12 on prescription and after a chat with the district nurse I can give my self my injections when I need them. I phone up and order some more when I use the 4th out of a box of 5 so it gives me enough time to get my next lot before I use the last 1.
I bought my own syringes, wipes and sharps bin from medisave and I keep disposable gloves in just in case I need help as I have nerve damage too my hands. When I need a new sharps bin I can take my old one into my surgery and they get the pharmacy too issue me with a new one.
Hope this helps it can be difficult but stand your ground. Low b12 levels can be very dangerous (trust me I know) but having found out that other family members also having pernicious anemia helped my case along with the extended stay in my local hospital with low b12 levels amongst other things. Keep fighting for what you need and good luck.
Thank you for your swift reply, I've been to my GP and complained at least 3-4 times already so I think I'm going to have to go down the self injecting route ... sorry to hear about your nerve damage in your hands, I myself have been struggling with this for about 4-5 years always felt like every 3 months was just not enough fro me .. my family doctor had the nerve to belittle me, make me feel so small when all this time I was right. He tested my b12 levels and they were very high 1400 ish but this was after an injection the same week, so ever since then he thinks I'm crazy when I bring up my b12 .. lately my hair has been falling out on my hairline .. where I used to have really nice wavy hair its so thin and lifeless .. some days I can't be bothered to get out of bed but I know I have to .. it makes me feel depressed even though I have a lot to live for and love my life :S .. I think I am going to buy the injections from Mycare and inject myself 1ml per week for the foreseeable future. I really have hatred for the way the UK handles this problem.
You can buy just one box and there is a link on the page.
Unfortunately the site is in German which can be a bit difficult.
They need payment up front on the first order so even when you have filled everything in they will send you a message saying that you need to pay first. You can pay by card after that.
The Goldpharma site may be a bit easier to use - don't know. I got a bit put off first time I looked at it because of the declaration that needed to be made but there isn't a problem with that as there is legislation in the EU that allows you to import medications from another country if you can't get them in the UK so it is okay to say yes if that is part of your struggle.
Sorry that so many GPs are so ignorant and unsupportive when it comes to B12 - there are some good ones out there.
It may be worth looking at whether other formats work for you - eg sublingual tablets, sprays (sublingual and nasal). I find that nasal sprays work really well for me and only use injection as a fall back.
I see they use Pay Pal would it be easier to purchase it through that instead I wonder? .. I will check it out, thanks for all your help, finally feel like I'm not insane talking with people who go through the same BS story like me with their GPs.
I prefer the 2ml Hevert or Lophacomp for intramuscular injection as they sting less.
Mycare's prices are usually a bit lower than Goldpharma's but their shipping is more expensive so it works out about the same. Having to pay for the first order by transfer, which is very expensive from the UK, put me off Mycare. I've been buying hydroxo from Goldpharma for 5 years without a problem. Delivery is usually 4 or 5 working days.
Was just about to purchase but noticed this difference, seeing as you purchase them and it arrive at your door step would you kindly confirm which site you used?
Oh .. I feel kind of silly now, sorry for being obsessive, how much was the total cost for shipping etc .. no hidden fee's I need to worry about is there? ... I'm from the UK, Wales.
Sorry, just checked which site I used last week and it was the goldpharma.com so they are one and the same company as my address is recorded on both sites with my account number.
I feel really happy and motivated that I'm finally going down this route, fed up with being failed by our medical system .. but hey feels good when you take your health into your own hands, thanks again
My hair also falls out when my b12 levels get low, depression is also common. GPs don't seem too understand that not everyone who has pernicious anemia can be treated the same as everyone reacts differently too treatment.
For years my own parents didn't believe me when I tried too explain how I felt, they just thought that I was being difficult. It wasn't until my pernicious anemia almost killed me for the first time. They are still struggling with it an how it affects me but they are trying. Even though I now get regular treatment I still have days where I want too do nothing but curl up in bed.
If you feel like a chat then my email is: penniseviour@yahoo.com and I'll get back too you as soon as I can
I just tried goldpharma sc, and after confirming,and searching for hydroxocobalamin,I found some. AS for methylcobalamin, you can get it ready made up in ampoules from Arnika apotheke. You have to E-mail them They have it in 10x1mg for 28.50 Euros and 10 x5mg for 39.80 Euros.plus 15 euros P&P (sent by courier) You can pay by paypal.
manufaktur@arnika-apo.de or phone them 089/452 468 468.They have English speakers.
You can get dried Methylcobalamin from Oxford Biosciences . but you have to buy the saline to reconstitute it from Bodfeld apotheke in Germany. £3.25 for 10x10ml ampoules plus P&p .
Please don't be desperate, like Iwas at first. I've been self-injecting for over a year, and have improved no end(even the numb feet are improving!) It's TERRIBLE to be upagainst the medical establishment, who have very little knowledge about Pernicious Anaemia, due to there being no research by the big boys with the money(ie the pharmeceutical companies) There is no money in it for them as B12 a natural product CANNOT BE PATENTED! You have friends here remember.
Just a thought on the hair loss as this can be also a low thyroid symptom which is not uncommon with PA - I had many symptoms of both PA and low thyroid but it was only when I self injected regularly and the PA symptoms started to diminish did it throw some light on the ones that weren't going (loss of eyelashes and eyebrows) and low and behold found out Gp had never ticked the box to get the thyroid levels checked in my blood tests - hence why they never showed up as being a concern!!! I can laugh now!
I just want to say thank you guys *all of you* for giving this amazing information and support, I think I will purchase the hydroxocobalamin from Goldpharma for the £12 .. I'm thinking to regularly inject once a week until then monitoring how much I need on how I feel etc ... £12 is an amazing price for 2 and a bit more months unless there is no hidden shipping fee's.
I have really slim/skinny legs but a lot of muscle hardly any fat so I'm wondering if a standard insulin needle will reach the muscle, I am worried about the whole aspiration thing but with practice shouldn't be a problem, oh and I'm thinking of buying numbing cream for the skin for the first few tries because I'm a wimp haha
Re:"I have really slim/skinny legs but a lot of muscle hardly any fat so I'm wondering if a standard insulin needle will reach the muscle, I am worried about the whole aspiration thing but with practice shouldn't be a problem"
I do not think an insulin needle will get to the muscle, I am really thin, thin legs and can pick up my muscles, and use the 23G needle. Aspirating is not necessary I was told as the needles are so sharp now that hitting any small blood vessel will just heal, but do get air bubbles out first. Have a good long practise on an orange with a needle and syringe, using water. It will give you the feel of how it will feel to put the needle in and to slowly inject the liquid. Its not the same as your leg, for it to feel more like your leg apparently a chicken breast is good, but hey who is going to waste a chicken breast?
Warm up the ampoule first to body temp by wrubbing it in between your hands, I inject after a hot bath so I can see the veins, get everything ready, look for a vein free spot and lift the muscle to make sure your leg is relaxed, give it a shake helps. I cross the leg I'm using so it hangs and is relaxed. I put the needle in slowly, then I can feel if it hurts; if it does it is in the wrong place, I'll start again next to the chosen spot. Darting I've only done the first time and no I personally do not recommend it. The only thing you feel, if you inject slowly, is going trough the skin, that is a prick, but after that it is like going trough butter, with something a bit thicker further own (the muscle). If you do it well you will feel very little, and practise makes perfect!
In time you may find areas on your leg that have no nerves you will feel nothing then.
Things that can go wrong is not connecting the needle well to the syringe (so called flying needle) and or a blunt needle (nothing happens), and hitting a vein, you will get a bruise then, but it goes in about a week (in my case anyway). But your sister will help you I hope! Numbing cream I've never tried, not necessary for me...
Wishing you good luck, and hope it goes well for you!
Marre is correct - insulin needles used for sub-cutaneous - you need a much longer muscle to do intra-muscular and it is something that you really ought to get someone to show you how to do.
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