Support for GP appointment

[Nicoleflower81]

Ages since I posted but wondered if anyone had any tried and tested methods for getting their GP on side?

Almost 2 years ago full blood count showed B12 deficiency, after loading dose I went back approx 1 month later as didn't feel much better. The doctor I saw brushed me off and basically said 'You've had injections so B12 isn't an issue, have you considered that it may be a mental health problem?' I was so incensed by his lack of empathy, and also dismissiveness of mental health problems which is as serious as physical health in my mind, I complained to the practice manager

Since then I have been stonewalled by each GP I have seen. They wrote me a letter to refer myself privately which I tried but both private haematologists in Sheffield are oncology.

My last full blood count showed that my B12 count had dropped from 1700 to 700 in 2 months but because I was in the 'normal' range there is no problem

I am struggling to function, I feel so ill that every day is almost impossible to get through but I have to carry on. I am sleeping 11-12 hours a night but never feel refreshed or have even a shred of energy

My mum is coming with me tomorrow to the doctors - I am going with all printed guidelines from PA society and will not leave until I have some help from them.

If I don't get anywhere I intend to self inject as I can't see an alternative. I am using sublingual spray at 2-3 times the recommended daily dose but symptoms are worsening by the day

How can I make the GP take this seriously? Any advice greatly appreciated

[clivealive Forum Support]

Hi Nicoleflower81 I always take my wife with me. In her younger days she was a "Dinner Lady" at a local school and when "Oliver" asked for more she had a "face" that could sink a thousand ships.

I have a doctor's appointment but as my wife is on holiday with her daughter and grandchildren I'm taking my own daughter for protection (the doctor's I hasten to add)

Seriously though I always advocate taking someone with you to an appointment as a doctor is less likely to pooh pooh you in front of a witness.

I am not a medically trained person.

I wish you well and bid you goodnight,

[johoho]

Hi Nicole, I wonder could you move to a new practice? What you really need is to find a supportive GP, rather than resorting to dangerous self medicating. If your B12 levels are now ok and you start overloading with more B12 this could be dangerous. (this is a mistake i made that put me in hospital). Good luck

[Nicoleflower81 in reply to johoho]

Hi Johoho, interesting response. I didn't think you could have too much B12 as excess was wasted via urine? The problem with moving practice is that I live rurally so don't have options other than huge journeys. Thanks for your reply

[Clare184]

Hi Nicole, I really feel for what you are going through it is awful that so many of us have to battle so hard for treatment - I gave up with drs for almost a year after he tried to pit me on antidepressants even though I had never once said I felt even mildly sad!

Anyway I would recommend having an idea of what you want the outcome of the appointment to be before you go and then write a list of reasons why you feel this is the appropriate course of action.

Are you having 3 monthly injections since your loading doses?

I also found quoting guidelines face to face just annoyed my gp but a very politely worded letter after my appointment got the result I was.after and I now have 8 weekly jabs which still isn't quite enough but much better than I was.

Really hope you get somewhere with the gp, if they are blocking you at every turn I would be inclined to switch practice.

[Nicoleflower81 in reply to Clare184]

Hi Clare, no I am not on any injections now. The doctor tested me after loading dose and declared me cured despite not feeling any better! Unfortunately switching practice is not an option as I live rurally and the one practice covers a huge area

[Clare184 in reply to Nicoleflower81]

Did they determine that you can't absorb b12 orally first? If you were taking a b12 supplement before you first tested low then that would suggest you have an absorption problem, trouble is that once you've had injections further blood testing is pointless as your levels should be showing as high even if you aren't able to make use of the b12. It would be very worth you looking through some old.posts on here where people have asked similar questions as there are a lot of very knowledgeable people on here who have given very useful and lengthy responses in the past. Another option if you are not receiving any injections now would be to stop any other supplements for a.few weeks and then.pay for the private blood tests, go for the full range which does your active b12, intrinsic factor etc - again very good posts about the best tests and where to get them done. Unfortunately you can still have b12 deficiency without bloods to confirm it but at least there is a chance you could get a diagnosis from the bloods.

I really do wish you luck, this whole process is so stressful and the stress only depletes your b12 more so stay strong and good luck!

[Nicoleflower81 in reply to Clare184]

Thank you, great advice. I was put on oral B12 after my loading dose but my levels dropped from 1700 to 700 in two months. My GP doesn't think this is significant and has explained that you get rid of 'excess' B12 through urine which explained loss (it seems a lot to me!)

I'm really worried about stopping all supplementation but think it's what I'll have to do and then have blood tests to see what's going on.

[Clare184]

Also did you have any neurological symptoms? If so the guidelines state that loading doses should continue until no further improvement

[Nicoleflower81 in reply to Clare184]

Yes I've had pins and needles for over a year, referred for nerve conduction tests which were inconclusive. Brain fog is awful, can hardly string a sentence together and stutter frequently. Walk into door frames all the time. Feel in a dream like/trance like state most of the time.....

But still this is put down to chronic fatigue despite being treated with loading dose