Hi I have posted some of this elsewhere but could really do with any advice. I am not diagnosed with pa if came back negative but definitely cannot absorb b12- tested at 184 then 178 6 weeks later after supplementing had a fight to get injections been on them for a year and a half, a year ago moved to 8 weekly as symptoms were coming back after about 7 weeks. Fast forward to yesterday when I had an appointment with gp who wanted to talk about my injections.
She says she never agreed to 8 weekly jabs and she won't approve them because my b12 tested at 2000 before Christmas. I explained that my symptoms return after 7 weeks and I don't want to spend 5 weeks out of every 12 feeling like an 80 year old but she won't veer from the guidelines because she says I don't need it. I said surely it shows that I do need it if I feel well for 7 weeks after and then get worse and she started saying maybe its not b12 at all then and we need to look at other things. I asked how then I felt better straight away for 7 weeks it is obviously helping and explained that I don't enjoy having jabs but b12 is non-toxic, water soluble and you cannot over dose so why can I not be given a frequency of treatment that makes me feel well she just said shes not wrong and I can go to a private dr if I want but I'd have to pay and she couldn't help me find anyone who knows this area. After a bit more toing.and froing she has agreed to refer it back to a haemotologist but last time they didn't speak to me at all just email between them.and dr. I feel so frustrated, I really don't want to self inject.
My husband thinks I should move to.his gp but not sure whether to leave it until I hear back from the haemotologist. Tried to explain to.her that my bloods would have shown high b12 because it was 4 weeks after a jab and testing is useless once treatment starts but she just wasn't listening and said I'm not running out then! I also tried to explain that they have only.tested b12 in my blood not the active b12 that my body can use and she was completely disinterested.
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Clare184
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It costs but £20 for a year's membership and they may intervene with your doctor on your behalf, plus there are lost of interesting and helpful articles.
I "waged war" on my "one size fits all" doctor who laughed in my face when I said I had a return of neurological symptoms in the run up to my next scheduled injection, joined the PASoc, learned that I was not alone and from what I learned persuaded the doctor to increase the frequency. Battle won!
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
(I took my Rottweiler wife)
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
active B12 isn't going to be a useful test at this point, Its also likely to be high as the problem is unlikely to be the amount in your blood but that it now isn't managing to get through efficeintly to your cells unless your serum levels are high.
The tests that may show up if you don't have enough B12 in your cells are tests looking at waste products that will build up if your cells don't have enough B12 to recycle them - namely homocysteine and MMA - but they can also be raised by other things so need to be done in context.
Do you have neurological symptoms? - if so the BCSH and NICE guidelines are for maintenance to be at 8 weekly intervals. Your GP can access the BCSH guidelines through the BNF but they can also be accessed here
Personally it sounds as if it is going to be really difficult to get through to your current GP and movingto your husbands - particularly if your husband feels that his is more approachable - may be a good way to go.
Have you considered putting what you want to say into a brief, polite letter to GP? My understanding is that in UK, letters to GP are filed with medical notes so are a record of issues raised whereas things said in conversation can sometimes be forgotten/ignored.
Link about writing letters to GPs about b12 deficiency
Above document makes it clear that in UK people with B12 deficiency with neuro symptoms should be on following pattern of treatment,
A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then jabs every 2 months.
My understanding of the BSH Cobalamin guidelines is that above treatment pattern should be followed whatever has caused B12 deficiency eg diet, H Pylori infection, PA , Coeliac disease or other causes....if patient has neuro symptoms.
When your injections first started, did you have neuro symptoms?
If yes, did you have a loading B12 jab every other day for several weeks?
If you did not have above pattern of loading doses, did GP explain why not?
I also wondered if GP might consider repeating loading doses.
I was at one where I had some unpleasant experiences in my quest to find out what was wrong. I stayed far too long there...it really isn't worth staying with a GP if they seem uncaring. The attitudes I experienced there had a very long lasting effect on me.
Maybe it is worth moving. You can look up UK GP surgeries on NHS Choices website and see reviews.
"why can I not be given a frequency of treatment that makes me feel well "
There are some on the forum who self treat with B12.
I am having exactly the same issue at the moment Clare184
I have written a letter to my practice and have a meeting with senior GP next weds for a "review" I am hoping to get my injections re instated - if not I will be following clivealive advice about getting PAS to intervene if possible.
I started to SI but I'm finding it difficult - mainly because I am a wuss who doesn't like injections. Guess I must love them how I keep asking the gp for b12 jabs- I really don't.
I can't offer much actual advice but maybe a small glimmer of hope. I had a very similar experience to you. I was made to have a b12 test to 'see if I even needed injections'. I deliberately made my follow up with a different doctor, one of the few at the practice I hadn't yet seen. I took the Clinical Knowledge summary from the NICE website and started by saying I was at my wits end and fed up of feeling way below par. I said I didn't want to go down the route of a formal complaint but just wanted to be treated in line with the guidelines. She actually read the parts I had highlighted (Not what I had experienced with other doctors) and said she needed more specialist advice. She has referred me to haemotologist. BUT she actually asked if I felt better after my b12, agreed that I may benefit from every 8 weeks at least and said she would increase frequency until at least all investigations are complete.
It has taken me nearly 18 months to just get this far but I finally feel progress is being made.
I gave up on my new GP, I flatly refused the serum B12 test he asked me to have. I did ask, "what is the point of doing that? I am obviously swimming in the stuff". As a result of my refusal, I now only get my injection (still) every 12 weeks. I left him a copy of Martin Hooper's book and I do go in to see the nurse and receive that injection. I manage the top-ups my self as I am not willing to fight this highly patronizing ( also most likely, overburdened) man ever again.
As a matter of fact, more than 2 years ago I tried almost 5 months without an injection but started to feel really bad again. My hubby will endorse this, many times he encourages me to top up even before I think I need one. I have realised I DO need them regularly.
So glad to find the support and advise on HealthUnlocked and the PAS site. THANK YOU to all who contribute.
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