I'm just back from yet another stressful GP appointment. In my last post I was thanking everyone especially Foggyme and Sleepybunny for helping me write to the GP about my previous diagnosis of PA. At the last GP appointment 3 weeks ago she agreed to give me B12 injections on alternate days for 3 weeks. She asked me to do a chart with symptoms graded. Because my neurological symptoms have not really improved yet most of them were 10 so I explained that these had not really improved yet but I was noticing improvement in my mental health and sleep. She then said to me your levels must be really high now and she doesn't think it is PA! I then had to explain that neurological symptoms might take longer to heal than 3 weeks. She then said as a practice they have decided to put me on to every 8 weeks now. I felt really upset in this appointment her attitude seemed to have totally changed from the last appointment.
One of my main worries now is could she reverse the diagnosis she has already agreed to put in my notes. I have a letter from the practice confirming the diagnosis I just need to know for peace of mind if she could change that again.
I am also still under a neurology consultant who also dosen't really have a clue about PA but I'm not seeing her until February.
Could someone please advice about the diagnosis part. Also I will be needing to self treat now as I'm not prepared to let the damage continue in between every 8 weeks. I have already bought B12 ampoules. Would someone please advice on good websites or videos with how to self inject.
I'm still wondering would there be any use in trying to find a better GP practice or will I be meeting the same attitude.
Any advice will be most appreciated. Thanks
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Cn13
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If it isn't PA, what does she think the diagnosis should be?
Does she accept that you are symptomatic for B12 deficiency?
"I was noticing improvement in my mental health and sleep"
The fact that you noticed improvement suggests B12 is having an effect.
"she agreed to give me B12 injections on alternate days for 3 weeks"
It might be difficult to persuade GP to consider more than 3 weeks of loading doses as the BSH Cobalamin and Folate Guidelines mention a review of loading doses after 3 weeks on the neurological treatment regime.
It took weeks before I showed any improvement in my neuro symptoms. I was self treating because I was unable to get NHS treatment.
"any use in trying to find a better GP practice or will I be meeting the same attitude"
My experience is that B12 deficiency is not always well understood. At least your GP practice is willing to continue B12 injections, although only at 8 week intervals.
Carmel, there are never any guarantees about the future. It is easy to stress about the future but if you are talking about certainty the reality is that you can't react to a particular outcome until it actually happens and the people who know if they are going to withdraw a diagnosis are the ones that made it in the first place.
If I read you correctly your GP is saying that she doesn't think that the problems you have are due to B12 deficiency rather than saying that you don't have PA.
Once you have started to self-inject and are back in control of your treatment you may find that the concerns over whether you have a diagnosis or not will ease.
I am not sure what needles you have ordered but personally I would recommend going for subcutaneous injections rather than intra-muscular - it's much more straightforward - enough for the NHS to frequently send people home after operations to do SQ injections of anti-coagulants. For this you would need insulin needles.
In general I'd say the most difficult bit is figuring out how to get the B12 out of an ampoule.
If you look on the thin section of the neck there will be a little dot on the top of the ampoule. Flick the top of the ampoule with your index finger until all the fluid is in the bottom of the ampoule. Hold the bottom of the ampoule in one hand, with the dot towards you and then gently push back away from you with your thumb on the top section. It should snap off gently. The ampoules are designed so you can invert them without the contents pouring out. I tend to find that it is easier to draw the fluid up if the phial isn't fully upside down.
If you find that you are drawing air rather than fluid up into the syringe then stop drawing up the fluid, flick the needle with your finger until all the air is at the bottom and then expel the air with the plunger. You may loose a little bit of B12 in a fine spray but the ampoule contains a bit more than 1 dose. Once the air is out, start again until you have drawn up the amount that you want (suspect that will be 1ml).
What is happening is that for whatever reason, practices are getting into trouble if they prescribe more than the recommended amount of B12. It is going to take several years for NICE to examine the evidence and possibly - possibly - make any changes.
With no definitive tests and mostly relying on the patient's reporting of symptoms doctors are on sticky ground when they try to justify treating symptomatically. They also don't have enough nurse appointments to cover all the injections people need. Especially, they are not going to risk being sanctioned or shut down.
What I don't know is why B12 treatment is particularly being targeted. For example, I take an opioid painkiller for migraine and that has never been questioned or sanctioned. In a far worse example, I have a relative who has been on what should have been short term anti depressant treatment, sleeping pills, and tranquillisers for over 30 years - perhaps you can imagine the consequences and utterly catastrophic damage that has transpired.
Although the practice knew there was alcohol abuse as well, which contraindicated those meds, they did nothing. At no time was the continued prescribing of these drugs questioned by the doctors or the prescribing inspectors, or alternative diagnoses sought, despite a history of auto immune disorder. They were prescribed, obviously, on the basis of patient's description of symptoms - there isn't a blood test for depression and sleeplessness as far as I'm aware.
Everyone knows about Dr X (we aren't allowed to mention doctors by name here) who had enormous success treating patients with B12 and was threatened and shut down.
Sorry for what has turned into a bit of a rant, but basically, the GP is no longer allowed to give the treatment that is appropriate in the case of B12 deficiency/PA.
And at the moment, there is no other way to get the treatment other than by buying it in from abroad and self injecting.
Thank you Frodo for your reply. What you have said makes a lot of sense. I did notice a definite change in attitude in the GP's manner this time from the first appointment. I did suspect like you said that she had been told not to prescribe more frequent injections.
So sorry to hear about your relative. I hope they have got some sort of help now. People shouldn't be left to suffer like that. It's a disgrace.
Yes I know the doctor you are referring to. I don't understand it either when he was obviously helping people.
It is terrible we are forced to self treat and also a lot of people wouldn't even know about this option and are just being kept ill. Hopefully things will change in the future.
My GP originally told me it was up to them what they prescribed, but now they have been reined in by the prescribing inspectors. Assuming that's true, it's completely outrageous.
And no, my relative got into the most awful state imaginable and is in care.
Thank you all for your replies. Thank you clivealive . I have joined the PAS. I did phone them a while ago when I was struggling to get any treatment from the GP's and they advised me to buy the B12 boost spray but couldn't seem to help with the doctors. My folate is usually low too. I was actually going to buy a good B complex with folate in there so maybe you could recommend one or I'll have a look at that.
Thank you Sleepybunny for your reply. It is also thanks to you giving me the courage to write to the doctors that I managed to get the recent treatment. I gave them a copy of the guidelines with that flowchart in there so they have included Antibody Negative Pernicious Anaemia on my notes now and I have a letter stating that from them. One of the main reasons she started to say it wasn't B12 deficiency was because I had no improvement in what I call my main neurological symptoms like the tingling in my feet and tripping and stumbling and being unsteady when I'm walking. I suppose I did think by saying that she might agree to injections more frequently that 8 weeks but it seemed she had already made up her mind before I even explained. I then had to say that there was more improvement in April this year after they gave me loading doses than this time. I then said maybe it takes longer than 3 weeks treatment to improve. Honestly I don't think she even knows what the symptoms of B12 deficiency are. And there have been some small improvements that I mentioned before.
Your right that it is good I left there with at least them agreeing to the 8 weekly. I'm just also a bit worried as I'm still under a neurologist and she thought I had fibromyalgia and knew very little about B12 deficiency. I have an appointment with her in February so I was hoping she would not reverse the diagnosis. Maybe if I just say I've had improvements that will be ok then.
Thank you Sleepybunny I might contact the B12d and see what help they can give.
Thank you too Gambit62 . That is great advice about the future. I really need to calm down and stop stressing and worrying! And at the moment she is keeping the diagnosis in place so that's good. Yes I definitely need to take control like you said and self inject and that should help with the worry factor. There is no way I'm waiting 8 weeks with all these symptoms.
It does sound like the subcutaneous injections are the best way forward and I have the correct ones o.5 inch. I do need to find somewhere that explains how to do it though. I'll look through posts on here. Should I do it alternate days would you advise.
Thank you so much for that easy to understand way of opening the ampoules. I would struggle there as I'm very clumsy. I will follow your advice.
I'm very grateful to you all for your advice and support. Thanks.
I have PA it was diagnosed using the only sound way to diagnose pa ie via the two day test with Radio Active B12, this test is no longer available because Radio Active B12 is not available any more. This test was the only true test to diagnose PA, I was found to have no intrinsic factor whatever.Therfore I had PA.
I had the usual loading doses and have my B12 injections every 8 weeks and I have been fine for the past 12 years.
You would think in the 2!st century some laboratory would be able to produce Radio Active for this test.
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