Thank you.So far the G.p despite having little / no knowledge of B12 apparently dealt with another issue without a second appointment with this ridiculous rule of one thing only .
Probably glad she knew what to do on that one !
She had no idea why my daughter there.
Thus current trend of not reading anything on the screen before you enter the room dismays me .
Often not asking name and date of birth either .
Certainly doesn't give confidence.
Not asking anything just quoting blood test result . Again not seeing the person.
Clinical skills are being lost .
This was a face to face .
My daughter is calm . Also articulate.
So see what Thus random gastros option is.
Again g.p wanting back covered .
Why
No idea as 10 weekly should be easy to prescribe
Hoping this G.p will look up the NICE guidelines and get a bit educated on B12.
Her injections are only 10 weekly.
Going by an old blood test result done 18m ago when pregnant.( so levels different for everything)
So wrong on many levels .
Done with the normal bloods .
Not questioned at the time ??
A nurse again meddling???
to find something to stop them .
When she was challenged by my daughter on the phone she simply said G.p agreed with her.
An appointment with G.p needed if not happy with decision.
You do wonder how many just accept this 🤔
Such a waste of time.
Nurses shouid act on prescriptions.
Only challenge if patients symtoms bad or changed.
Nurses have also given me many problems.
Nothing said face to face but seemingly finding the time to try and stop B12 because they don't think needed??
It's disconcerting and very worrying .
Interestingly the hospital Nurses brought in to help at times never question.
A nurse's initial decision? What is her knowledge base? I know this is all wrong but it's your daughter's health at stake, can she SI whilst fighting back?
GPs stopped almost everyones B12 injections in our area and put them on to tablets during covid and then never replaced them. So as dsrtict nurses we have elderly people getting sick enough to go into hospital and being sent home with a letter to restart their B12 injections please. Bt if they dont get sick enough to go in, they just stay sicker t home. I am often writing to request they recheck B12 levels. I have learnt more aabout B12 from the articles on here than we were ever taught. Such a helpful resource. GP pharmacists do the same thing. They take meds off your list with no discussion or explanation for the patient
I am an almost retired district nurse and have really seen a change in our service over the years, sadly not for the better so will be glad to retire soon. Very sad to hear ypur nurses arent more infotmed and supportive. They tried to stop my mums injections in covid but I asked if I coupd give them and they agreed and then I just carried on till she went in to a home and they do them there now.
Exhausting, infuriating and frustrating for you both, Nackapan. I'm assuming the 'for life' directive isn't written in your daughter's notes? I'd be inclined to ask your practice manager their exact procedure for altering a prescribed medicine, and agree with Sleepybunny about invoking informed consent. I hope you get your daughter's injections reinstated asap x
I'm sorry to hear this and know how you both must be feeling. I was speaking to someone recently diagnosed with b12 deficiency and they had been given tablets with a follow up blood test in three months. I mentioned injections but only tablets had been prescribed. It's obviously the way we are going and I think injections will be few and far between in the future. Funny thing, I had typed a reply to myoldcat's posting about hospital admissions due to vitamin deficiency then realised it was just a rant and your reply had said it all so deleted it.
I haven't been well since mine stopped so I understand. My latest home test showed folate had dropped dramatically so am supplementing. B12 was the same as last test but I felt just as awful. Injections were my answer but just not ready to self-inject.
Since lockdown - told they will not reinstate them. Monitoring thyroid and vitamins every 6 months, adjusting supplements accordingly. I've learnt a lot along the way and find I'm particularly unwell when thyroid antibodies are high. Family history of thyroid and diagnosed hypo many years, on thyroxine for a few years then treatment stopped but no explanation. Believe it's all due to b12 and how my body uses it. Fingers crossed they keep yours going.
I hope so too. There is only so much you can say without preaching. What worried me most was that they were very dismissive about it, presumably due to the doctor's response, so I was more forceful than I usual.
I'm so sorry. To have to fight again and again must be exhausting. Does anyone know if current medical undergraduates have a knowledge of nutritional deficiencies included in their training? Is it just that we have to wait for the dinosaur doctors to retire?
Nackapan, sadly I can relate to everything you have said above. Have we made any progress with GPS and nurses understanding of PA? I fear not. Infact I think it could be getting worse as more and more individuals with very limited training in appropriate areas are given more and more responsibility and power.Worrying times.
Good luck with you fight which you should not have to have.
I am so sorry you are having to fight again. We fight for ourselves but when it comes to our children then it is twice as hard , heart wrenching. . This is so wrong. Thank god she has you . Good luck.
It's seems so cruel that you and your daughter have this stressful situation repeated again and again.
I wondered if you or your daughter could write to GP surgery pointing out she has not given her informed consent (there was no discussion)for the change in treatment.
Patients Association article that mentions Informed Consent.
"Won't reinstate until the GP has been advised by gastro".....
and yet perfectly content to let a nurse stop a lifelong treatment for a serious condition made worse by having been missed originally ?
Your daughter luckily is no doubt more than able to present a case - but she should never have to, ever. There is nothing about a medically requested 10-week B12 injection that a GP (or a nurse ) should find unusual.
My B12 levels have been over 2000 since 2016. This is because I self inject twice a week. I knew when I started doing this that I would be able to mainly control my symptoms at this frequency because I had been given the same frequency previously by the NHS for six months. That, while very unusual, prevented me from deteriorating further than I had already.
Because most GPs do not recognise and treat what they see, then monitor symptom improvements, they are misinterpreting patients' fear as either addiction or hypochondria or both. We need GPs and nurses to understand the severity of this condition, the possible range and impact on lives that symptoms can and do have on patients and their families, the effect reduction or removal of treatment can have on them ....... then and only then will they be as afraid as we are of them taking this drastic action.
It starts, as with all things, with education.
Mysteriillness - I am really glad that you as a district nurse are aware of the consequences of treatment arrest but devastated that you are seeing so much of it.
Nackapan - Take good care of self as this must be stressful for you too. Sending best wishes to you both.
Maybe it's time for you to give her injections yourself? There is a lot of info about getting B12 on this forum. It could help ensure she can get enough to completely heal.
Very best wishes with your battles! I was lucky to get diagnosed before there was too much damage. I have injections once per week because it helps to keep the symptoms away. They recommend every other day until the symptoms are gone. How can you tell she is getting enough? I can tell when I am not: my toes get tingly.
The push-back against a water soluble vitamin with no "upper safety limit" is amazing! I'm in the US, and my wife and I both have B12 deficiencies. She has 2 MTHFR gene mutations but, I haven't been checked just yet. The only thing that I can say is that we MUST be our own advocates for our health! It's a shame! Stress is one of the contributing factors for PA and neuropathy and the medical community makes you fight THEIR ignorance about B vitamin deficiency to get any relief, which only makes things worse.
My wife got to where she couldn't walk without help because of numbness in her legs and feet. We're 52, BTW. We went through 4 different doctors before we found 1, a 5th, who would listen!
During this fight, with test after test, with "specialists" of all kinds, she was offered prescription drug after prescription drug, but only the "side-eye" and rejections when we mentioned B vitamins.
We are both now on daily injections and she can now feel the floor under her feet and walk without help! 😀
She must take methylcobalamin, (MTHFR), but I can use the cheaper cyanocobalamin, if necessary.
During our fight, I found places online where I can get what we need, legally, with a telehealth phone "visit." Needless to say, we will NEVER be without again!
At the beginning of our fight, I had to be open to some "unconventional" means for me to get what we needed. (No; I never did anything illegal, and I never would advise anyone to do anything illegal or to go beyond what they were comfortable with!) All I am saying is that there are some "gray" areas in which to operate in, if you think "outside the box" and are willing to take "the road less traveled."
It's been a long road, with constant roadblocks, but it has gotten easier, thankfully. I can now see a light at the end of the tunnel, at least.
Just be vigilant and don't take no for an answer! If your GP won't listen or help, find another way to get what you need.
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