Successful haematology appointment!

[CarpaBob]

Following on from my battle with the gps over my b12 levels and symptoms I have just got back from my first appointment with a haematologist and she has agreed to a trial of b12 injections for the next few weeks at least! She did say she wasn't necessarily completely happy to treat me but had read my letter and the guidelines etc that I had sent to the gp and has agreed to follow them for the time being. So that's injections every other day until I see her again in five weeks time. She has also ordered a load of tests including mma and homosystiene (which I assume may be skewed by the one injection the gp gave me), intrinsic factor,coeliac and copper too.

[Hillwoman]

CarpaBob, this is very good news - and I think probably a bit better than you hoped for? I'm very pleased for you.

I wonder why the haemo wasn't completely happy about injections? Do you think it might have been a case of the relevant info coming from the patient, rather than professional channels?

[CarpaBob in reply to Hillwoman]

Hi Hillwoman, how are you?

Yes to be honest I was fully expecting to be sent away with nothing. She mentioned the "high" doses, the fact my blood cells weren't enlarged, that she wasn't a neurologist and that she had never treated anyone like me 😁. She was pleasant enough and did listen when I mentioned my findings regarding large blood cells etc. Also did state that despite her nervousness of giving high doses that she was aware there was no evidence to suggest high doses were a problem. She also made a comment about could she get in trouble for prescribing the b12 given the lack of macrocytosis but did refer to the "in black and white" guidelines. She did again bring up my letter etc and i get the impression she would use that as back up for her decision. Just have to wait for the gp to receive their letter and then I can sort out the prescription!

[Hillwoman in reply to CarpaBob]

I'm much as I was - knackered! Trying all the usual things though, and hoping for the best.

Isn't it strange that a consultant should be so nervous of prescribing a high-dose vitamin with no reported toxicity? And the lack of knowledge in haematologists generally about the nature and consequences of B12 deficiency is very troubling indeed. It's odd that she seemed so troubled by her own professional society's guidelines.

[LtAngua52]

Same thing for me tok. My GP wasn't interested but after providing lots of information gleaned from here he referred me to a haematologist who prescribed a trial of injections. Although like yours wasn't completely convinced, hence the trial. You are lucky to get them every other day for 5 weeks, if I've read that right. Despite the guidelines saying it should be every other day until symptoms stop improving I only got them for 2 weeks, then had a fight to get them every two months instead of three. He did say they are guidelines and as such he can make a different decision. A good get out clause!

Well done for being assertive and finally getting injections. I hope you will soon feel better.

[CarpaBob in reply to LtAngua52]

Yes you have read that right, she mentioned some guideline stating a check after three weeks but with it being a bank holiday she offered the forth or fifth week so I took the fifth weeks I figure it gives me more time to note any changes in symptoms.

My gp threw the "guidelines" argument at me too which was one of the reasons for my sending him a letter and symptom list as they maybe guidelines but there are also guidelines regarding neglecting to treat a symptomatic patient and i was fully prepared to take it further if they continued to ignore me.

[Hillwoman in reply to CarpaBob]

May I ask, which guidelines did you quote about failure to treat a symptomatic patient? I think I need to send my practice an updated letter for the file. They don't even acknowledge letters of complaint, so they really need to be brought to heel.

[CarpaBob in reply to Hillwoman]

Most guidelines can be used in this way, particularly where they note discrepancies between test results and the clinical picture.

I wrote in respect of the b12 guidelines, both the bcsh and the NICE guidelines. As both state that a symptomatic patient with low or high b12 level should be treated without delay then ignoring this is neglect. Doctors mistakenly think of guidelines as something they can choose not to follow however this is not the case and if they are not going to follow then they need to be able to prove why they are not following the guidelines. My letter and symptom list being on record now means that if they can't provide proof of why not to follow the guidelines or treat me or are not exploring other reasons and solutions for my symptoms then they are being negligent and i could take the matter further. I know this as it was a big part of my midwifery training due to the way the NHS works and the fact midwives are ultimately accountable even if told to do something by a consultant!

I was careful not to be threatening or demanding quoting the relevant parts of the guide referring to symptoms and stating that I desperately wanted my life back and hoped to return to work one day. I had also been offered a variety of drugs for fibromyalgia and stated that I wanted to exhaust all other avenues before going down that road. I also asked that it be placed on my file so other health care professionals involved in my care would have access to it, this was not the real reason but it is a non confrontational way of ensuring the letter and symptom list are officially recorded. I have not had written acknowledgement of my letter but I ended my letter asking the gp to look at the information I had provided and to reconsider his decision not to treat and he contacted me as soon as he got it. Had he not I would have made an appointment just to ensure it had been put on file.

[Hillwoman in reply to CarpaBob]

Ah, I see what you mean. Thank you for taking the time to respond, and for the very useful tips. It can be difficult for someone who hasn't been on the 'inside' to know how to approach such a difficult situation.

xx

[CarpaBob in reply to Hillwoman]

Your very welcome, it has taken a mix of my own insider knowledge and help from those on this forum that has helped me get to the point I am now and i may still have a long way to go but at least I am getting somewhere. I am so very grateful for everybody's help and advice, knowing I am not alone in this struggle is such a help 😀.

x x

[fbirder in reply to Hillwoman]

Hillwoman,

My summary document - frankhollis.com/temp/Summar... - contains links to some of the most important expert documents along with pointers as to where to find the key subjects in them.

[Hillwoman in reply to fbirder]

Thank you.

[CarpaBob]

My gp had already agreed to oversee if the haematologist agreed. I don't think the gps necessarily lie many are simply uneducated on the issue and for some reason choose/refuse not to educate themselves on it. They often seem to take offence at patients having such knowledge and I wish they would take it as a prompt to research further. I know they are stretched and if they don't have time to treat patients and update their knowledge then they need to do something about it.

[Lisahelen]

From your comments it seems as though you have got someone you can work with, long may it continue.😄

[Foggyme Administrator]

Hi CarpaBob. Really good news about your B12 jabs and throughly impressed with your determination!

Hope that you get some improvement and start the feel much better very soon..

As others have said, really worrying that the haematologist was reluctant to treat you, despite acknowledging that B12 is safe! And lack of knowledge about the guidelines is a bit worrying (to,put it mildly).

However....it you've converted one, then that's a start and will surely benefit others along the way.

Congratulations and well done. Let us know how it goes....sure we'll follow with great in intrest 😀😀