been a while since my first posts, so really just an update and maybe your thoughts.
I had initially self diagnosed, and started self injecting after speaking to Dr Chandy, as for the past 2 - 3 years I was banging my head against a brick wall, and being told that 'look in the mirror there was nothing wrong with you, you are not 18 anymore'
Having lots of symptoms, including staggering, loss of balance, pins & needles & numbness in hands and feet, extreme tiredness etc....
I did 3 weeks of loading doses, then decided to stop, Main Reason Being, firstly I wanted to see if I could get New Horizon Blood Tests done for Active B12, and also for IF Antibodies (was told needed to stop SI for 7 weeks), and secondly I would like everything to be on my Medical Records as if something happens in the future who will know what is wrong with me if there is no one around.
So it has been 3 weeks so far and think I worked out I could get the blood tests done from 7th November, then start SI again.
In the meantime I have finally managed to get to take registration form in to register with new doctors, that was a job and half in itself, as they kept turning me away as they had flu clinics, so I should be on their system from Wednesday, which is when I was going to phone up and request an appointment to see a doctor.
On my Registration form, I listed all the main symptoms that I am currently having,
with the hope that I could request an Active B12 test, an IF Antibody test, and possibly ask for uMMA Test? what are your thoughts, would the fact that I had 3 weeks of giving myself loading doses (I am guessing 4 weeks being clear since last injection if I manage to get an appointment next week) will that have skewed my chances of getting any positive results with any tests?
Also, If I am suffering severe neurological problems, can I ask to be referred to a neurologist.
Thoughts would be useful, thank you
Angela x
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AngelaJG
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Three weeks of loading doses will need a few months to clear from your system and not influence the serum B12 or MMA tests. The IFAB test should be OK.
I'd be surprised if the doc gave an active B12 test without first doing an ordinary serum B12. And I'm fairly sure that a urinary MMA test isn't available at all on the NHS - so that would have to be a serum test.
I had serum b12 which showed as think it was 246 which is way above the minimum so guess that is out of the question anyway
shall see if we can get the ifa test through gp if not I shall go through blue horizons.
just so frustrating to know what is the best thing to do, I really want everything to be on my medical records and have a proper diagnosis, but it just seems hurdle after hurdle and if I don't manage my health self inject then I can feel myself getting more ill each week.
fingers crossed new doctors will be better if I can get an appointment
"I did 3 weeks of loading doses, then decided to stop, Main Reason Being, firstly I wanted to see if I could get New Horizon Blood Tests done for Active B12"
I've asked for referrals in past usually by letter as then there is a record of my request. I usually briefly list reasons why I feel referral is appropriate eg I listed my neuro symptoms in one letter.
Page 29 in "BCSH Cobalamin and Folate Guidelines" shows process doctors should follow with someone who is symptomatic for B12 deficiency.
Thanks Sleepybunny, I have printed off a load of stuff from the pinned posts and PAS library, and the symptom checker and ticked all that apply to me, so fingers crossed.
Yes, you can certainly ask for a referral to a neurologist. When my GP told me I was not B12 deficient (he didn't show me the actual result and I didn't know I could ask to see them at that time) I replied "well why can't I feel my feet?!" He referred me and the neurologist did tests, then actually listened when I told him (as I had also told the GP) that my father had PA, and older sister, twin sister and younger brother all have B12 deficiency. He was certain I did too, arranged IF Antibody test which came back positive, so I got my injections (unfortunately only 3 monthly as again at that time - 2012 - I was not told I should have them 2 monthly and it's too late to argue for them now).
However, to get back to you, if your GP won't sort out an IFA test definitely ask to see a neurologist and ask him/her to do one.
So I have been to see the new doctors, she doesn't know much about b12 or pernicious anaemia, but at least listened to me talk (10 min appointment I was in there for nearly 40 mins). She is a newly registered doctor so not sure if that is good or bad we shall have to wait and see.
She has made a list of my symptoms, and is going to speak to the doctor that is overseeing her, and is calling me tomorrow, but wants to arrange for a MRI scan, as she wants to rule out MS.
so lets hope that I can start getting somewhere....
So I have my new doctor phone me today, to say that she has spoken to her supervising colleague and they are not going to refer me for a MRI just yet, they want to re do all my blood tests to see if anything has changed since the last ones
(i havent said that I have been SI, but did say I had been taking High doses of Vit b12, so that will skew the results of serum b12 test) I also asked if as they are doing a load of blood tests, could they also add the IF antibody test to the list, she doesnt know what that is, so I gave up trying to explain over the phone, guess everything is still going to be an uphill battle........
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