Hi all, first time reader and poster here. It was discovered I was B12 deficient some years ago, but was originally misdiagnosed for PA as they just did the loading doses at the time. After complaining about symptoms for a while, I was then diagnosed with PA and started the 12 weekly injections. Alongside this I also have hypothyroidism.
For the past 8 months-ish, I have felt that the frequency of the injections was not enough for me. After a month or 6 weeks have passed since my injection, I start to feel the lethargy and general mood issues return. I spoke with my GP at this time and was given a blood test (approx 4 weeks after my injection) and was just told the results were normal. I have never been given the exact levels.
A couple of months ago I started to develop tinitus, and more recently I have been having some blurring of parts of my vision. This is combined with the usual feelings of no energy, mood changes, irritability and lack of sex drive. I also noticed in the last week that I have patches of what looks like vitiligo on my hands. I'm aware this isn't a symptom but as this is also an autoimmune, I know they can be connected.
I called my surgery this morning in the hope to discuss again the possibility of having more frequent injections, and a call back was arranged. As soon as I answered the phone to the (nurse practitioner, not GP!) I could tell it would be a futile conversation. She was totally uninterested and dismissed my symptoms as if they were just a common cold I was complaining of. The tinitus apparently could not be linked because if I had symptoms before the last injection, and it didn't go away after that, it couldn't be linked. She described the skin changes as possibly hyperpigmentation, which is in fact a darkening of the skin, not patches with no colour. And she told me to get an eye test for the vision issues, which I don't necessarily disagree with but she was so dismissive of my concerns.
I'm pretty fed up with this not being taken seriously. How can they possibly think that every person with PA responds to the exact same treatment? Surely if you are not getting enough B12 for a long period of time, you can still get new symptoms? I shouldn't have to be made to feel like I'm a nuisance when I want to speak about genuine concerns for my health.
Is it really the case that people just give up with their GP's and start to self medicate? I would rather fight tooth and nail with my doctor to get them to listen than have to self inject.
Anyone have any tips on how to get the GP to listen?
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My GP surgery is generally lovely. Really helpful. However, I decided the fight over B12 just wasn't worth the effort. They did move to every 8 weeks, and there is general agreement every time I go that I must be desperate for a top up; but they haven't agreed to more.
I learned to self-inject, and I use as much as I need. Until recently, I didn't tell the surgery about my injecting in between, but I just got a phone call saying they won't do my next injection due to covid19, so I told them I'd inject at home. Who knows, I may even eventually tell them I inject once a week. I'd be on my knees if I only had B12 once every two months!
Hi, I’m thinking of self injecting, due to my surgery not increasing the frequency of the jabs. Could you advise me where you get your ampoules from and syringes please. Also where do you inject yourself?
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
I can appreciate your frustration with GP. Like you I have PA & Hypothyroidism diagnosed 16 years ago. Side issues which have developed over time include pins and needles, numbness, tinnitus and occasional migraines. I have 'trained' my surgery to give me injections every 6 weeks (or less) to effectively stave symptoms off. I often go away on trips/ holidays and have gradually narrowed the injection spacing with pleas that I need one before I go away rather than be confrontational with nursing staff. (one of whom has the condition).I try and avoid the GP!!
With the Corona Virus era I have just started self injecting. GP did relent and provided goods on prescription but that was after I bought my own from Versandapo in Germany via Amazon and medisave in UK. Self injecting is not nearly as difficult as you imagine and is quite liberating.
I don't think that it is the case that people just give up with their GPs and start self injecting.
It is more that they reach a tipping point.
I first went to my surgery in Jan 2015.
I was found to have B12 deficiency in Feb 2016.
My GP was very supportive and determined to help me. She realised that the loading injections had no effect on me (I couldn't even tell if they'd been done or not), but waiting 3 months for the next one made me very much worse. She got my MMA tested and it was raised, which led to a diagnosis of functional B12 deficiency, confirmed by the lab.
(She knew about testing for functional B12 deficiency because she'd had one other case, 10 years previously, where the B12 given to her patient wasn't having the desired effect.)
This meant a return to reloading in Oct 2016 : injections twice a week, ferritin and folate for 3 months. I was also found to have osteoporosis of the spine and put on vitamin D tablets.
I actually felt my injection for the first time, just before Christmas 2016 !
The reload lasted this time until no more improvement could be achieved- 6 months later, I started to get worse again. At this point, she said it had gone beyond primary care, reduced injections to 1 a month and sent me to haematology, dietetics, neurology, gastroenterology. metabolics, oral medicine ....
I think I saw the haematologists 4 times in total, each time my MMA was still raised - they told me that B12 was toxic, carcinogenic, highly addictive, all of which is clearly not true ... yet still advised my GP to continue to give me B12 - at 1 injection every 8 weeks. The final consultation was in mid-August 2017, and I was due back to work a few weeks later in September, after a whole year off sick.
This was my tipping point : how to be able to function sufficiently to keep my job.
Or any job. It was never going to happen on one injection every 2 months.
This was why I started self injecting, continuing with a loading frequency.
It wasn't by choice and it isn't a cure.
This is probably a very difficult time to ask for more frequent injections, but the guidelines advise an injection every 2-3 months - so there is no reason for your GP to deny you an injection every 2 months anyway. More often than this would seem to depend on your location, your practice, your GP and your luck - as much as it does your symptoms or supporting evidence.
As suggested above, the Pernicious Anaemia Society is the best place to start : have a look at the Pinned Posts (top of this page, right-hand column) or check their website.
They are also involved in support during the coronavirus crisis, meetings with health advisers, and very promising research on why some people need more B12 than others. Worth joining.
I live in America. I have PA. I have a diagnosis of PA. I have been provided loading shots and supplies for self injection and prescriptions for injectable B12 and then when a new formulary edict was imposed told I must take tablets. I have been told to eat a more nutritious diet with vitamin enriched vegetables to make B12 available to my body. I have had nurses screaming at me that my B12 levels "were off the chart".
The ignorance surrounding Pernicious Anemia and treatment of same is immense.
So I self inject B12. I would not recommend doing so with other vitamins but B12 is water soluble and the body will excrete what is excess. During some periods I need to inject weekly, other times every three weeks. My body's basic rhythm seems to be three weeks.
Please understand that I am only relating my experience to you so you may know what others have done to deal with this. I am not recommending anything.
and since I gave up eating extra sugar, processed foods in the main, or drinking diluted carbonated high fructose corn syrup sold as "soda" and gone back to eating as I did as when a boy and young man, meat, fat, fresh vegetables, some fruit, home cooked food with no sugar and coffee black, have gone back to normal BMI. But when I am low on B12 feel compelled to eat junk food.
My GP was quite good and started me on injections every 2 months (but no loading doses, no idea why not). I found this wasn’t enough to lead an active life and luckily went to discuss it with a GP in the practice who suggested a trial of monthly injections.
I was finding it a problem to book a nurses appointment to give the injection as they were short staffed so I suggested I self inject which the GP agreed to.
The B12 then went on my repeat prescription list so I’ve avoided ever talking about B12 again in case they decide to revoke the trial!
As it turned out, monthly still wasn’t enough to allow me to live my normal sporting life and I’ve eventually settled on twice weekly injections. I don’t feel I can mention this frequency to the GP, much as I’d prefer to, so I buy my own additional B12 from Germany.
So I’d say you can only ask. However, as guidelines say injections are to be given every 2 or 3 months you may not get anywhere and if you feel you need more frequent injections you may be forced to do as many of us do and source your own.
Incidentally, the fact that your GP tested your B12 levels whilst you’re receiving injections shows he has no understanding of either the condition nor of the guidelines which state that once injections have started there is no need for further testing.
I keep seeing comments about blood tests after you've started receiving injections being pointless, does anyone know where I can read more on why this is the case? I am working on building a solid case before approaching them again, which includes requesting full access to my medical records and I am not happy about being given the response of 'normal/no action' for blood test results...
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