Exactly what the title says.....I have one of those!!!!!
Following nearly two years of injections at three monthly intervals I have been noticing that for a few months now I really struggle for the third month. An increasing amount of sublingual drops were helping but fatigue and stomach problems were becoming worse. My last injection a month ago found me struggling to notice any improvement at all and so I bit the bullet and left a message at the Health Centre reception. As my GP was away a nurse rang me and said she'd taken advice from another Doctor within the practice who recommended a blood test!!!!!!
Alarm bells ringing in my head - alongside the tinnitus - I advised her that this wasn't a good idea and could I speak to my own GP on his return. Thankfully she agreed and I duly spoke to my Doctor the next day. He told me that a blood test was not a good idea as the readings would be high even if the B 12 was ineffective!!! He suggested another B 12 injection straight away and for subsequent injections to be two months apart !!!!! "Don't worry about having them closer together, I have patients who have them much closer together than that"!! he said.
How fortunate I am!!!!! I have read so often on here of the struggles many of you have. At least there are some well informed GPs but it shouldn't be luck of the draw as to whether you get decent treatment or not - even within one practice.
Best wishes to all of you and thank you from the bottom of my heart for the excellent advice here and from the PAS.
Written by
firee
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So happy for you!! It’s amazing how much encouragement and hope we can get from a good doctor. My neurologist is like this and I love hearing when others find doctors who are willing to listen to their patients and appropriately treat them. Congrats!
I have also had a supportive GP - one who quickly realised that I was unable to respond to B12 injections in the way others did. She recognised that I was becoming much worse on a 3 month wait, and so had my MMA checked to see if her suspicion of functional B12 deficiency was correct.
It was. She had drawn on knowledge gained, from treating a single patient 10 years previously, to ensure I had appropriate tests, ruled out renal problems as a possible cause of raised MMA - and sent me to many specialists. She also made sure I got two B12 injections a week for many months.
Although I now self inject, I am so glad that I was being well taken care of when deteriorating. My folate, ferritin, vitamin D and thyroid were also monitored - I was initially found to have low folate and ferritin and osteoporosis of the spine, so I get vitamin D and raloxifene on prescription. Folate and ferritin took a couple of years to stabilise, and can sometimes still waiver, osteoporosis has now reduced to osteopenia (no, I didn't know that was possible either) - and MMA finally dropped into range after three years and six tests. Plus a lot of B12 - which of course does not need monitoring.
GPs with awareness of B12 symptoms and treatment are out there. It is certainly worth patients trying other GPs within a practice, as doctors are not all going to have had the same previous experiences to draw on. Initial training on the subject of B12 deficiency will have been minimal for all of them - and might explain why luck is involved.
firee - I'm glad you have been one of the lucky ones too.
You were very fortunate to have a knowledgeable doctor.
My mother had P.A. and after years of having an injection (every 3 months) her GP told her that her bloods were fine so Mother needed no more injections.
Both my sister and myself were in unison and said to mother 'that's good Mum'. We had no internet connection then, nor would we have thought of GPs making a very wrong statement.
Due to stopping the quarterly injections, my mother developed stomach cancer. I need not make any other comments.
I also have P.A. but my GP told me I can have as many B12 injections that I feel I need. I have them monthly at present.
Glad that you have a GP who recognises the severe consequences of undertreatment of your condition. No-one would choose injections without necessity.Of course you trusted your mother's GP, and were relieved for her.
When I first was found to have B12 deficiency, I had never heard of B12 before - and was unaware that I would have to have anything more than the six loading injections.
I think the majority of people are actually unaware of what 'pernicious anaemia' means - in the long run if a person remained undiagnosed just doesn't bear thinking about.
If you are told in the initial stage that you have b12 deficiency but the cause does not matter, because the treatment is the same whatever the cause - then why would you question that ?
Especially if you are uncertain what B12 deficiency actually means (never mind pernicious anaemia) or what the correct treatment might be.
So your course of injections begin - meaning your serum B12 will, from this point, be high. If it then gets retested, this can be used to "prove" that you are cured: you no longer need B12 injections.
This only shows one thing in reality: that the injection has reached your bloodstream. Not your cells, not tissue - not your hair or nails or feet.
Your hands may shake. You may not remember your partner's birthday. You may have mood-swings that are not part of your usual personality. You may have foot-drop or be unable to feel your feet -and so start to suffer from falls.
But your serum B12 will be high - and so you could be at risk of getting your injections stopped or replaced by tablets. Without any diagnosis. Or monitoring.
Until your B12 becomes below range again, you cannot get treatment - so you can either deteriorate and hope they notice - or start self injecting.
Thank you all for your responses. I know what tough journeys some of you have had and I realise how lucky I have been. Fortunately I knew enough not to have the blood test the other GP recommended.......talk about opening a can of worms !!!!
The NICE report from a few years ago states that GPs should be led by patient's views on how much they need, not blood results or any other tests. My GP was not keen to increase my injections and i had to send a copy of the report to him and it hasnt been a problem since for me. We shdnt have to fight our own individual battles but if we do we need as much to fight with as we can gather beforehand
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