Hi l am fairly new to the site but have had PA for almost 34 years and there wasn't much information back then so l have just tried my best to get on with it and for most part that was ok. Until recently l was able to make it through the 12 weeks until my next injection and the rest of the time l struggled through. The last few months have been some of my worst. I got the flu in October and ever since have gone downhill from there. I was still having the flu like aches in my thighs and upper arms in November so went to see my GP and all she kept saying was "You're depressed but we will run some blood tests just to check". Blood tests came back normal so no further action. I went for my injection a few days early in December and almost had to beg for it (this nurse called the doctor and after much discussion they agreed) she also said would l be willing to go onto tablets daily to which l said no way. Fast forward about 6 weeks and the pains have returned with a new symptom. My left thumb feels like someone ripped a really sticky plaster off quick and then it feels numb (like when you get an anaesthetic for dental treatment and you lips feel all funny) and sometimes the pain makes me drop things because it takes me by surprise. I am waiting for a call from my GP and want to get my point across how bad things are and not get fobbed off like last time. So was wondering if anyone has had this problem or has some advice. Many thanks for reading and l hope it all makes sense and doesn't sound like someone rambling on about nothing and sounding like an idiot.
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CraftyKit
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Thank you for your reply. Yes l put on hydroxocobamalin right from the start. My levels were so low they weren't on the scale or so they said when the results came back.
I was diagnosed some twelve or thirteen years before you and put on cyanocobamalin every four week for the rest of my life.
I had two "Schilling" tests - one in 1968 which was "inconclusive" and I struggled on for another four years until a second one proved positive for P.A.
When hydroxocobamalin was introduced in the 1980s I had an awful allergic reaction to it and so have continued with the cyano ever since albeit now having the injections every 3 weeks.
Please do insist that your doctor checks out the B.N.F. website link I posted above. The amendment is fairly recent and he may not have an updated "paper copy" on his desk.
Thank you for your reply. I was diagnosed early 80's and until now l have managed to just get on with it but now every day feels like a struggle. I have printed off the new guidelines and have highlighted the important parts ready to take with me on Thursday.
If you do have PA , and I’m sure you have , you can try to get the Society to intervene. If you get no joy , you can do what many of us have to do when faced with a GP who knows nothing about PA. Many of us have to self-inject if we start deteriorating before the next designated injection . It’s easy and cheap. The ampoules of. 12 can be obtained at German online pharmacies which ship to U.K. . Everything else from U.K. So if you are driven down that path , come back here and you will get all the help you need .
I have been thinking more and more about self-injecting (not a lover of needles but needs must) just need to find out where to get them from as l have never done this before.
As we can only get B12 ampoules on prescription in U.K.we get them from online pharmacies in Germany , where they are available over the counter . Not all German online pharmacies will ship abroad . I will give you two that we on this forum use and find very reliable —-
These sites are in German so you may need a translation app .
I use a 1mg x 1ml ampoule B12 Hydroxocobalamin, made by Rotexmedica. If you order with German online pharmacies , you can use the PZN reference number which is printed on the box . Then you will get straight through to the item you require .
The reference number for a pack of 10 ampoules is 03862297. Sometimes there is a cheaper offer for a pack of 100 . The number for 100 ampoules is 03862305 . Sometimes it’s cheaper to buy 10 x10 single packs . The shipping costs about €9.00 ( courier delivery ) As I inject weekly . I always buy 100 . The shipping costs the same no matter how many you buy . The use by date is usually about 2 1/2 years hence
You can also buy from amazon.de They have a site in English . Some of the pharmacies they use do not ship to U.K. . You just have to go through the list of suppliers till you find one that does . You cannot use the reference numbers to order from Amazon.de . You have to search for’ Rotexmedica vitamin B12 depot’ . to get B12 Hydroxocobalamin.
A 1ml syringe , some swabs and a yellow sharps bin for needle disposal . You can look at some injection videos on utube ( some are not very good )
If I can self -inject , so can you .Honestly ! The benefits are huge . It’s really cheap —. If you buy in bulk ( 100 of everything ), it costs just over £1.00 for an injection. It’s so convenient . You never need to have the awful symptoms again . You just need to experiment how often you need to inject to keep the symptoms at bay . You cannot overdose . I really wish you the very very best .
It all makes sense to me. I too realised something was wrong for many years, but despite multiple GP visits, the symptoms were over looked for years, until I finally took action.
Since starting Cyanocolabinum injections my life turned round. PA has been ruled out by my GP based on B12 serum tests, which some say are notoriously unreliable & I concur.
Cutting to the chase. I tried B12 drops which I bought online & to my amazement the cuts on my legs, which were blue with lack of oxygen, began to heal, along with some other nasty symptoms, like mouth ulcers years old!
Having drawn a blank from my GP, & discovering one can’t overdose on B12, b/c excess B12 is urinated from the body, I decided to be bold. I bought 3000ugr ampoules of Cyanocolabimun from Germany online, along with the suitable disposable syringes, needles, & scheduled a series of injections.
The improvement was amazing, my blood oxygen levels rose & my nerves ( I have peripheral neuropathy) began to heal, I could feel each of my toes & feet, whereas before, they were like numb useless blobs of pain & I couldn’t walk without severe pain.
I started with injections every other day last Nov, & after 4 months, my feet, legs & nerves continued to heal. As to whether I have PA I am still unsure, but my intention is to get a IFA test via my GP & hopefully the truth will out! Until then I take an injection when my feet become painful & numb. I’m hoping that eventually they’ll heal even more.
I’m not recommending you do the same as me, as hopefully the penny will drop with your GP, but don’t hold your breath my friend! Remember your not alone with this particularly overlooked deficiency of Intrinsic Factor or Colabinum which makes it impossible for your stomach to absorb vitamins like B12. I also top up with Folate vitamin & D3 as I am still pretty much housebound due to my spinal cord injury.
Thank you for your reply. I have had pernicious anaemia for 34 years and have had injections for all of this time and until now just got on with it as best l could. I did have many other issues along the way which l was always told were not related to my b12. Anyway fast forward to present day when things have started to change a great deal and is getting harder to deal with. I had my appointment today as l am sure most of you have guessed it didn't go well. I told her about my pains and numbness and that after talking to all of you it was more than likely related to my lack of B12 to which she dismissed. She said my levels were around a 1000 and the recommend levels are 400 so she wouldn't be looking at giving me my injections more often. She wants me to have more blood tests but l expect they too will come back clear and l will be no further forward. She said she will speak to me a few days after the blood test and we may look at tablets to help with the nerve damage so will just have to wait and see.
If your nerve damage is new/ newly worse, could you ask her if you can see a neurologist ? (warning: long wait involved !) There must be a reason- and with a long-standing diagnosis of Pernicious Anaemia, she should be a little concerned about numbness. If she does not think it relates to PA, what does she believe is the cause ? It is after all mentioned on any list of B12 deficiency symptoms, however paltry. What are the tablets prescribed ?
There cannot be a "recommended level of B12", within a wide range that usually starts at around 160 ng/L and goes right up to about 800 ng/L (depending on local laboratory and a bit of a postcode lottery) ... these numbers are based on samples - and so presumably some of the population must have a "normal" averaging 800 ng/L, or it would not be the upper end of the range! When in your treatment cycle your blood was tested is also important: 1000 ng/L unsurprising if you had recently had an injection. Yes, your current blood level is above normal*, which means she won't budge on that at the moment -and so a wait for further blood test results: what is she testing you for ? Would be interesting to know what else she is looking for. At least she is looking, so does believe that you have a problem. Not much, I know.....but it means the door is still open.
Tablets/ sprays alone are not recommended treatment for those who have a very low serum B12 level (which you did have) or severe neurological symptoms, even by research that promotes use of these products- because no long-term studies have been carried out on patients with those conditions. You have a long-term diagnosis of Pernicious Anaemia, which as you know all too well is not a curable condition, but can be managed with life-long treatment. Some people supplement between injections effectively with nasal sprays and sublingual lozenges, but for some they seem to have no effect. It seems unlikely that this will be effective in your case, especially since your condition has worsened, with no (as yet) discernable cause- seems reckless to me for your GP even to suggest such a transition.
Have a look at the Pernicious Anaemia Society's website: newsletter about new research into why some people really do need more than others- worth being a member if not already.
*After injections started, my blood tests often showed levels of >2000 ng/L, yet I was still symptomatic.
Thank you Cherylclaire for your reply. I went for my blood test today so will now have to wait a few days for the results to come back. I did ask what they were testing for and from what l can remember they are checking my b12 levels, folate, thyroid, kidney function and a few others so at least they are listening. The tablets they keep talking about are B12 daily tablets instead of my 12 weekly injections which is why l keep saying "No".
Wanted to update you. I spoke my GP surgery today and all my bloods have come back clear again. I spoke to a different GP as the one dealing with me was off and they asked how l was getting on with the tablets l had been given. I told her l hadn't been given anything but the other GP had mentioned something which may help but she wanted the blood results first. Anyway turns out that there was a prescription sent through for me but no-one bothered to tell me. She also said it sounded like nerve damage to which l said well l have had PA for almost 34 years but she was adamant that this was not the cause because my levels were to high at over 1,000. They just don't listen.
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