So I've just come back from my GP appointment and I utterly and completely hate the fact that I ended up in tears of frustration. Every single point I made was more or less dismissed. I took along the BCSH guidelines for treatment of cobalamin and folate disorders *with the relevant points highlighted*, made the point that I wake up in pain in my legs most nights and can't feel the skin on most of my left thigh until I move, in which case it feels like the muscles are tearing and yet, and all he could say is my levels were "normal". FFS. After a heated discussion (!) he has agreed to test my B12 levels himself (doesn't trust Blue Horizon results) and if they come back normal (which they will) he's talking about referring me to a neurologist. But still won't prescribe the injections. Says he "can't". He wasn't apparently willing to look it up in the BNF. So I said that realistically then, if the results come back normal and he refers me, I'm looking at least 3 months before getting any treatment. He agreed and said that he felt I was "barking up the wrong tree".
And another mark in the "don't trust what you read on the internet" camp. I did put him straight on that but, as usual, he wasn't listening.
Time to trawl the forum to source the injections for myself.
I'm tired, disappointed, frustrated and very very angry. Not necessarily in that order.
Rant over. Thanks for listening
Written by
hunny59
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Bless you Hunny59 that's horrible. It sounds like you went well armed and prepared, you were probably anxious about it beforehand too, and now you're at home left feeling unwell, awful and having received zero support from your medical professional.
My GP keeps dismissing me with depression/anxiety causing my symptoms and has suggested a diagnosis of CFS/ME - which I will not accept. On my last visit I explained that I had many B12d/PA symptoms, explained that my Hashi's and positive gastric parietal cell antibodies are likely to mean that although my B12 blood test is "normal" it is not reaching the cells, and I politely requested a trial of B12 injections. I mentioned that there were guidelines and articles that I could bring in to support it. I just got an outright and firm "No" and was sent on my way like a naughty school child.
So I have finally plucked up the courage and ordered the injections off the internet. I am scared witless having read some peoples reactions but I have to try something. I am also likely to order NDT soon instead of levo. It's a shambles that we have to do this isn't it?
It's taken me a long time and a lot of knockbacks for me to turn away from my GP and start this journey to research, read and learn to heal myself. Fingers crossed for us both! Please try to keep your chin up, you can do this.
Thank you. Yes. I already gave up on getting any help for my autoimmune thyroid condition and have been self medicating with NDT for about six weeks now - just about to get my second set of blood tests done to see how I'm doing. I was 75% sure he was going to be a knob. It would just be nice to be proved wrong occasionally!
I sympathise with CFS/ME - I said today that I wouldn't accept him or the endo trying to hang my health issues on a relapse of that.
How long do I keep banging my head against this wall and putting up with the ensuing headaches? I'm thinking once this round of compliance with the B12 test that he wants to do and no more. Not seeing the neurologist unless he gives me a damned good reason to do so which I doubt he can do.
GP's are often Jack of All Trades and Master of None - yours does sound a particularly unpleasant one - have you considered you may be suffering from an underactive thyroid?? If I were you I would change to another GP within your medical practice or move to another surgery until you get a helpful GP. Don't put up with being talked down to or patronised, if he or she is not going to help you then ditch them!
According to him and the endocrinologist, my thyroid is fine as my results are all "normal" despite the fact that my TgAb came out at 420 (<115), my TSH 2.48 and my FT3 and FT4 on the low side. I had to get my own tests done because of his apparent inability to be able to order even an FT4 with TSH because "the lab won't do it". If all the members on this forum had £1 for every time they'd heard something stupid from their doctors, we'd all be able to retire.
To be honest Baggiebod, it's my own fault. I sort of knew he was going to be a twat before I even went in there, I just misjudged his level of twattishness so I think my frustration was partly borne out of the fact that I was disappointed in myself for still having a shred of hope that he may help
That is disgusting for you to be treated that way! Have you tried contacting the Pernicious Anaemia Society for some support in getting your doctor to help you?
It seems terrible to me that PA is ignored so much by the medical profession when it can do so much harm. Yet they hand out antidepressant pills with little pause for thought. MariLiz
Have you considered contacting your MP? As far as I know the NHS should be following the recommendations of the BCSH Cobalamin Guidelines and I'm not sure your GP is. Page 29 in the BCSH Cobalamin guidelines is a diagnosis flowchart and I think mentions what process doctors should follow with symptomatic patients when B12 results are in range and when it is below range.
Did you have anyone with you? Sometimes medics are kinder when there is a witness....
Has your GP seen the UK NEQAS statement? Or the BMJ article?
I've spent most of the afternoon composing a letter that I can read out when I attend for my next appointment. In hindsight, I may have been a little too assertive when I went in there. That's not to say he wasn't a twat (!)but I guess it's not inconceivable that my attitude may have put his back up. Anyhoo, I'll polish it so I know that everything I need to say is in there and I'm putting in references to the BCSH guidelines, the NHS website (as far as clinical symptoms are concerned) and various studies about the dangers of not giving injections in the light of strong clinical indications and have also put in the reference to the NEQAS statement/warning. If he doesn't listen this time, then at least I know that I've done everything that I can.
I've also added in a section to quote the BMJ article - thank you very much for that
Here's something to think about regarding whether you were too assertive: If you were a man would the GP have treated you in this way? And, were you a man, would you even worry that you had been too assertive?
Could you also make detailed notes about your symptoms? This had a good reaction from my (perfectly wonderful) GP. It is kind of more scientific than just speaking about what is happening to you. Yes, I know it is crazy, but that was what the doc said in a round about way. I added a time frame for the appearance of symptoms which would give your case more gravitas.
BTW, I also took a bunch of flowers from the garden....just a thought. Don't apologise but ask to have the discussion of your condition start again from the beginning. Could you take someone with you who can back up your case? Partner, adult child? Someone who knows you really well?
I guess you could also say you will have to do a trial if he will not. And you have a list of symptoms to use as a benchmark. My GP has asked me to do an excel sheet to score my symptoms against diet etc. Go prepared to be more scientific than he is!
Thanks for that - I was thinking along the same lines and the notes I've written to take along document briefly the symptoms and when they occurred to take the emotion out of the situation. As I'm usually much more articulate in writing (at the moment) I thought it would be easier if I could document everything that I need to say and show him before I go in there. I aim to be as prepared as possible next time
I did mention that I was prepared to source the injections myself if he was unwilling. Unfortunately, the only response was "you can't do that, it's dangerous" which really does tell me he's a bit of an idiot. Or worse - he thinks that I am.
I told my GP , actually my husband mentioned to the GP that we had found a way to supplement her (3 monthly) treatment to help alleviate the symptoms. Her only comment was that overdoses of B12 should not be harmful - and that I was being a guinea pig. I told her it was water soluble and would be passed out. She was not at all fazed - but she did know I could tolerate the product as I had had 5 injections under her supervision.
We purchased a pen that does not have a needle and it works well except it is leaving a tiny bruise on my tummy. Dr asked me to bring the bottle of methylcobalabin so she could run a check for its efficacy. She did not mention danger at any stage. A good result would be for your GP to supervise at least one injection by his nurse so he could be sure you are not going to have an adverse reaction.
It might be worth sending your letter to your doc in advance of your next appointment. He may feel less defensive if he is given the chance to look up the guidelines. You can always present him with the ultimate challenge- that you will hold the practice responsible for any permanent damage to your health. Good luck!
I had thought about that, but as he obviously hadn't read the copy of the letter I sent to my endocrinologist, I have huge doubts whether he'll even look at anything that's sent in advance - there were links to the UKNEQAS alert in that letter, together with a transcript of the text. I've downloaded a copy of the original NEQAS alert from the PAS website and will print that off to take with me but yes, I'll make it very clear that I'll hold him responsible for any damage that I suffer if he refuses again, which I'm pretty sure he will.
There are recorded instances where someone was in the normal B12 range but was deficient and continued to get neurological damage. Here's an abstract for one case, perhaps your physician can access the full article:
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