So, thanks to a sympathetic GP (after a long struggle) I was getting B12 injections every 3 weeks and my life was getting back to a more normal state. Sadly, his surgery has been closed down due to NHS 'efficincy savings' i.e. cuts. My new GP, without asking me a thing about my symptoms or previous treatment /care just said, 'this is completely contrary to the licence. You'll only get it every 3 MONTHS from here.' She is re-doing my blood tests but what good will that be? None. It has now been 5 weeks. My symptoms are increasing daily and it's having a negative impact on my life already. I'd only just gone back to work having given up a very well paid job last year due to PA. Now, I'm so tired and stiff, I can't move without intense joint and bone pain , I feel anxious and I can feel the confusion returning. I can't sleep (ironically). Depression will be next. Oh, and not to mention - feeling all the time like I can't get enough air.
It's crazy. Whatever happened to continuity of care and listening to the patient.
Sorry to moan. I know l was lucky before to get the frequent injections and because I have experienced the massive improvement it made to my quality of life, I CAN'T FACE GOING BACK to how it was before.
Not sure what to do.
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I'm really sorry to hear that the new GP is so rule bound rather than patient bound. Actually the licence is for once every 2 months in the UK but that still doesn't resolve your problem. It is terrible to find yourself at the mercies of doctors who are basically incompetent when it comes to B12 but with the guidelines and system set against you it would be difficult to prove that in a court of law.
Have you tried contacting the PAS themselves for support.
I need a lot more B12 than the standard routine. I tried talking to my GP a few years ago - wasn't uncaring just ignorant - about treatment regime and got nowhere so decided to treat myself - not a decision I regret - not least because it gave me back power over my own health. I;m pretty sure that if I hadn't then I would have killed myself within a year of the incident as I really couldn't face life the way it was and was lookng at getting to the point where I couldn't cope with my employment etc.
There are things you can try beyond/before trying to source injections yourself - I find nasal sprays work well for me - others find sublingual tablets/sprays or skin patches help them. I do inject sometimes as well - source the ampoules from germany where it isn't covered by the prescription only restrictions - I do it subQ as I'm not sure I'd trust myself to do intramuscular. Lucky that you can't overdose and that B12 itself is relatively cheap. I get through huge amounts so I'm probably spending £2-3 a day (mainly the nasal sprays) but the ampoules actually cost less than £1 so if you were looking at once every 3 weeks that is scarcely anything.
Really hope that you find a way forward. In the mean time you are entitled to moan
amazon.de is a popular source - I use mycare.de (but you have to make the first payment there by transfer so I suspect that amazon.de is probably more straight forward
Can I ask what does subQ mean I'm new to this I take Jarrow 5000 is there anything better orally or sprays I'm a wince at self injecting don't know if I could.
subQ is just a shorthand for subcutaneous - so into the layers of fat under the skin rather than muscle. Its the method used for insulin shots (though these days people tend to use an insulin pen). Can either be done into the folds around the belly button or into the thigh. I prefer thigh as I find tummy really painful but people vary.
I'm going down hill to and I'm so petrified! 😞 I had my bloods done last Tuesday and he said they're 585 so completely normal after my loading doses in February, he seems to think I'm cured now, but my symptoms are already kicking in big time, now I've got a water infection that antibiotics aren't helping don't know if that's to do with b12 but I had the same before being told my b12 was low, I have a bottle of b12 (meth?) but need needles now and courage to do it my self I'm such a wimp! plus my family are very against me doing it myself but I'm getting desperate, I think the only way of getting our bodies right is self injecting, easier said than done!
Thank you! I got the meth? Of b12d and going to order some needles today, just looking for the right ones, I'm a bad worrier! Just told my husband he's not impressed but can't live like this! I've also got 4 kids that I feel guilty about cos I'm always to tired to help them
If your husband knew the damage that can be done by not keeping your B12 levels optimal I'm sure he would give you his blessing.
Read as much as you can about this condition. You can use the little search button at the top of this page to type in Self Injecting/ self Medicating . All the posts and replies will come up.
I will do, and thanks. It's got to the point I don't care what anyone says now, they don't have to deal with my problems and believe me I've had a lifetimes worth of problems already, hopefully once I've started it will help me get better and he will see the difference, I have no trust in GP's but he does for now but he hasn't suffered like I have, and he has a phobia of needles which probably doesn't help
I do understand. When you get all your bits and pieces together, maybe go to a quiet place and It will be done and dusted in a few minutes.
I inject MCobalamin, HCobalamin and I take Adensylocobalamin sublingual. B12 needs Folate and when you start getting more B12 into your system, more Folate will be used so keep an eye on that.
I also take a B complex to keep all the Bs in balance.
1 more thing, you don't have to tell anyone if you so choose.
Keep posting as it helps others in the same situation Jens.
Never really thought about other vitamins I remember my first folate was 6.4 should be over 5 (so normal) and b12 was 150, but I'll get some multivitamins to give them a boost, do you alternate what you injecting I've wanted to since I started going down hill and GP was adamant no injections before 3 months (literally begging) but worried they are different types, hydro from GP and I have methyl does it matter?
Most Multivitamins have very little of everything and not specific enough amounts to make any real difference apparently.
It is perfectly ok to take different types of B12 as members have found that different types help for different symptoms, Eg, pains, mood, memory, fatigue etc.
I've just registered at Boots on the needle exchange scheme. I told them exactly what I was going to do and showed them the B12 ampoule. The pharmacist was very sympathetic he even suggested I asked my GP for a private prescription. I now have 10 clean needles and syringes and a sharps bin to take back when I need more.
They gave me the needles, syringes and sharps bin. (Also came with some additional bits n pieces that I won't need to use + 1 condom! You never know one day I may have the energy!) When I need more I just take the sharps bin back to them and they give me a new lot. I had to give them my name and dob to access the scheme.
Great info Ryansmum. My local pharmacy sells the sharps bin for around £1.00 and will take them back when full. Do you put the used syringes in or just the needles?
In the UK they don't seem to give the right antibiotics for urine infections - I'm sure it must be contributing to antibiotic resistance by killing off some of the infection and allowing it to come back stronger so you need multiple courses of treatment.
There's something called d-mannose which you could try - quite pricey but it seems to work. Also worth trying drinking some bicarbonate of soda dissolved in water before bed.
I've been drinking lemon water which seems to help more than antibiotics, but been back to the GP this morning who's given me different antiotics for 2 weeks which i prey works this time, but going to keep moaning until they start listening to me or until they are fed up of me! Haha
I found the PAS helpful to talk to. Are you a member? Lifetime membership costs £20. Office open evry day from 8am till 2pm except Sundays. In some cases they can intervene on behalf of members.
I am absolutely devastated for you and sadly self supplementation may be the answer - in the short term - to give you your life back and enable you to work to earn a living.
However, much as I appreciate, understand and admire those in this community who do struggle to self supplement I think it is important not to give up the battle, started by Martyn Hooper, to get doctors and nurses, the NHS, the government and everyone between aware of the problems caused by the "one size fits all" syndrome when it comes to frequency of b12 injections whether for deficiency or P.A.
If only one of us manages to "open the eyes" of our GP then every other of their "same symptoms" patients will benefit.
Sadly I cannot claim to have been successful so far. I asked six years ago for more frequent injections, was point blank refused, was told it was "all in my mind" and I had to stick to "what it says on the tin" (with apologies to Ronseal).
By then I'd had P.A. for nearly forty years and knew virtually nothing about it other than how I felt in the run up to the next injection.
So I joined the Pernicious Anaemia Society and asked on their forum if I was "the only person in the world" who suffered the same symptoms and "unsympathetic" doctors and was astounded by the response.
Encouraged by the advice and support given I went back to my doctor and eventually and reluctantly he "allowed" me to have "an occasional" three week injection (I've always been on cyanocobalamin 1000mcg every four weeks since 1972) when I feel the need.
Not wishing to "push my luck" I have only used this "privilege" sparingly two or three time a year but lately I've been feeling a lot worse before the fourth week and in March took a nasty fall just three days before my next monthly injection.
So, my next task is to persuade my doctor to regularize my injections to be every three weeks and have it put into my notes instead of "as directed".
At the moment, although my type 2 diabetes is under control I'm low on Vitamin D and the doctor wants to get that sorted before making any decisions about the b12.
The b12 serum test taken in March showed as 469pg/mL (187 - 883) Normal - no action but the doctor did acknowledge that the results would be "skewed" as I am on the injections so I''m hopeful that at my next appointment I will have "won my case".
I feel that if I can "break down the barriers" for myself it will make life easier for the next b12d/P.A. patient along.
I hope you get the treatment you need and deserve and wish you well for the future.
Martyn hooper has a thread on his blog about people with confirmed PA having their injections taken away. If this is the case with you I'm sure he would be interested in your story.
Self injecting is so easy and painless. Not like I've heard when you get B12 jabs at GPs. It's so easy to do and inexpensive. No more battles and frustrations with GPs and horrible symptoms kept at bay. Really worth trying.
I initially got some from The B12d.org website but since have bought it from Amazon.de, Germany as recommended on this forum (B12 Depot Roxmedica 10x1ml Ampullen). Also syringes (BD microfine 1 ml insulin syringes) alcohol wipes and sharps box from Amazon. I got info from Internet on how to self inject and now inject into stomach fat subcutaneously and painlessly weekly. It so easy.
oh no! this is dreadful - speak to PA - don't rush to self inject, but you must fight it. I know (from experience) its easier to say than to do, especially when feeling so bad. do keep in touch with us to let us know what happens. we must stick together and find ways to get our voices heard - not only for us on this chat site, but for others who do not have a voice at all.
My Drs refused my 8 week injection recently saying that it is only 3 monthly and it is nonsense the haematologist said otherwise - cos- look - he didn't put it in his letter. The underlining thought obviously that I was lying and go away. They know that I self inject every 4 days or so. I saw a remark on the screen by one of the Drs saying "God knows what she is injecting herself with". So I'm stupid as well as a liar. I haven't been back since they made me feel so bad.
Where to get from- well the 3 regular places have been mentioned on here already - Goldpharma, mycare and Amazon.de (the German site) who are now in English! - probably because of all of us who are using it lol. Needles from medisave or Amazon. I'll see if can put links on.
I get my b12 from versandapo.de. it is the cheapest and easiest. 100 ampoules hydroxy including postage to uk comes to about £55. Pay with PayPal. I get my insulin syringes for subcutaneous injections from amazon uk. Just because you self inject does not mean you are giving up the fight for changes to the bigger picture. Those of us who self inject do so as a last resort when we know we are in a battle we cannot win.
This is terrible, you had a GP who was treating you to alleviate your symptoms. Now you are expected to go back to being in pain again, just because you are with another practice? Are they not in anyway honour bound to continue a treatment that a new patient is already on? Would they do this to a diabetic, or someone on cancer treatment? I bet they wouldn't, because there would be an outcry!
Please try the Pernicious Anaemia Society and see if they will help you, and let us know how you get on?
I started Self Injecting last week ...(or rather got my husband to do it) I joined another site on Face Book ...Pernious Amnemia and got a lot of advice and links on there! I am sure there will be links and help here to as well so start to liberate yourself. After many wasted years of waiting for my 10 week injection I finally feel like I am in control! Life is to short to wait for NHS attitudes to change!
Then who did you mean by 'too many people in the country draining nhs resources who haven't paid in'? I am confused as there are proportionally fewer non-UK nationals claiming out of work / in work benefits than UK nationals.
Wish I hadn't left it so long before self injecting. I have severe Neuro symptoms after 5 and a half years of 3 monthlys and untreated low folate levels. Now injecting every other day but do wonder if damage is permanent. I was very determined to get it right with my doctors because I really would prefer to work with them but eventually realised that being able to say"I told you I was ill" wouldn't be much of a victory if my health was permanently affected.
THERE IS HELP AVAILABLE!!!! So sorry to hear of your struggle!! But perhaps this will help. I switched from shots to sublingual Methylcobalamin B 12 1000 mcg tablets daily by Solgar, a great vitamin company. They also come in 5000 mcg tablets. I am able to absorb the B12 very easily this way, but important to get the Methylcobalamin B12, which allows for better absorption. You place the tablet under your tongue until it dissolves, so it bypasses your digestive system, goes right into your blood system instead. The vitamins are not expensive and two of my doctors here in NY, gastro and endricrinologist, both supported the change. I have found it makes for a more consistent feeling of well-being and I don't get tired at the end of the month, waiting for my next shot. Of course, I am not a doctor and only sharing my personal experience, but I am convinced this is a better way to go for me and might offer you some relief as well. Always important to check with a doctor about what you take, but I have had a great experience. I hope this helps!
These are what are generally recommended because of better fillers. The Bluebonnet is the better because it hardly has any fillers - I haven't tried it myself tbh - but it does contain less, Ive looked and would buy next time if needed to. The Jarrow is slightly better - although still got sweeteners in it - xylitol instead of Solgar's Manitol. I've taken Jarrow - the 5000 one and found it useful to raise my levels but didn't really feel any benefit - only found benefit once started self injecting and got levels really high. Jarrow is the most popular I think. Whatever works for you, just wanted to give you the suggestion for next time to try.
Write to the minister of health explain everything you suffer with and how this has changed your life before and after. Maybe even include letters about other sufferers too get some photocopies to include with your letter. I did when they stopped a pain relief medication years ago, I got it reinstated, it was co proximol!! Its finished now so no longer can be got maybe from abroad but I won't go down that road I now have to suffer pain. Its worth a try you may even get them to look at Vit B12 again who knows? Don't accept it. without this try, good luck. I maybe writing myself too I have just gone on the tablets and feel different now the warts I had are going I had 11 on my hands, so I think the more we hammer them they might start listening. It might fall on ears that want to hear.
I am so sorry to hear this!! I was just diagnosed with pericious anemia yesterday and my doctor has ordered B12 shots for me once a month. WHY are they so timid about this??
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