How many times have we heard this! I went t because I felt so I'll and he insisted on a blood test. Reluctantly I agreed arggh. I have neurological symptoms and he suggested increasing to monthly im injections could be possible,,, until the results came back with anaemia but b12 +2000. They now want to find out what is causing the anaemia!! Talk about frustrating I know why my b12 level was high. Because I have been self-injecting! Now I am back full cycle with them wanting to do more tests even though I have had them all and had anaemia due to low b12 and borderline folate which kicked off the injections in the first place. Co
I have printed off the PAS leaflets and am sending them to my doctor, is there anything else I can send to end this merry go round? Your support as always is my saviour x
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Newcastlelover
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Bearing in mind that if someone has two causes of anaemia - say, low B12 and low iron - then the summary table at the bottom of that link can be misleading.
For example, if someone has iron deficiency anaemia they may have low serum ferritin. If someone has low B12 they may show high levels of ferritin in testing. Put both conditions in the same body and ferritin may appear to be "normal".
Thanks so much Sleepybunny, I am a member of PA and I did send the leaflets you recommended. I am hoping to receive a reply from my doctor as I handed in an envelope containing the information along with my letter this morning... I am so determined about this, if I don't get my treatment resumed I certainly will go to CAB and write to my MP. I will let you know what happens, in the meantime I will read all of your information very carefully.
Perhaps GPs are now realising that many of their B12 deficient patients are self injecting because they cannot function on the 1 injection every 3 months generally considered adequate treatment by practices.
Quite why their stock response to this would be to check serum B12 levels, find they are high and stop giving treatment (regardless of symptoms) is beyond me. What is the panic ?
If a patient was so desperately ill as to inject themselves between NHS injections, wouldn't you expect their GP to question the effectiveness of the treatment being offered ? Before concluding that the treatment should be stopped ?
The wrongness of this approach to patient care continues to appal me.
Like you, my B12 serum level once injections started was measured as immeasurable: over 2000ng/L. But I was getting a lot worse once loading stopped. My GP tested my MMA, which was raised. She restarted my loading injections: I had 2 a week for 6 months. She checked my serum B12 only once after this: it was still over 2000ng/L.
Satisfied, she then concentrated on what was important: checking my folate, ferritin and thyroid levels. Folate and ferritin have taken dips and dives and sometimes need supplementing on top of supplements.
Eventually, I was deteriorating again even on this frequency and was sent to consultants for an answer that was beyond primary care, and when no answer emerged, I reluctantly began self injection to stop getting any worse, telling my GP of my intention. After over 2 years of self injecting every other day, and in the main, keeping the worst of my symptoms under control, I have decided to try 2 a week again, which so far seems okay (not great).
I think I have resigned myself to no answer at this stage, but it has taken 5 years of consultants to get no answer !
I made the error of seeing another GP while my own was on holiday- he stopped my NHS injections (by then at 1 every 2 months on haematologist's recommendation) before her return. At the time I was fuming. Now I don't really care, but have decided to only ever see the GP I know and trust.
She is still keeping an eye on my folate and ferritin levels. I have a Dexascan due in April for checking on osteoporosis of the spine, and an appointment with Oral Medicine consultant next week about my tongue, throat, mouth - which are just usual B12 deficiency symptoms to me, of perhaps 15 years' duration. And then that's it.
I'm now not expecting answers to why I need so much B12 to stop deterioration, not even expecting to improve, and certainly not the same. Decided answers are not there yet and it's time to lower expectations and stop the waiting. Having said that, I have high hopes for the current Pernicious Anaemia Society research, which has found that a noticeable difference exists between the test-group unable to cope on a 3-monthly injection regime, and the group who find this treatment meets their needs.
Let's hope that, whatever is found and whatever treatment developed, it is not restricted to those select few with a concrete (and unrevoked) PA diagnosis- or I may have to stop being quite so complacent !
I would suggest that you get your GP to watch the film of the PAS conference in December 2019, at least the part where the research team discuss initial findings. I have recently met a Metabolics consultant who knows about this research - and Martyn Hooper !
You are so right Cherylclaire, thank you, you would think people enjoyed spending their well-earned money having medicine sent over from abroad and sticking needles in themselves! I hope I get somewhere with my gp but if not, I will continue to keep myself as well as can be. Take care.
It's a detailed article which mentions at one point that successful treatment with B12 should not be stopped. Also mentions that many diagnostic tests for B12 deficiency are not always reliable.
Thank you, I am waiting to hear but if response is negative, all I can say is thank goodness that we can get our treatment elsewhere and SHAME ON BRITISH MEDICS AS FAR AS PA GOES. I have a theory that because we can get our treatment elsewhere they needn't be worried with it and so they aren't. BUT I am a determined person and I will call them out on this until I get a legitimate explanation.
Hi Sleepybunny, I am so pleased to tell you that I received a call from docs to say that after reading the guidelines she is happy to reinstate my jabs, eight weekly instead of 10 weekly. That's what I call a result!! I can hardly believe it.
Hiya, I am so pleased to say that thanks to all of the helpful information of this and the PA society sites, my doctor has apologised and, after reading the guidelines is happy to re-instate my injections at eight weekly instead of 10 weekly! This is a huge relief to me especially with having lots of other stress going on at the same time! Thank you so much to everyone for your support x
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