Had my result back this morning from private blood test taken last week. As they said it does look like I have very good proportion of active B12 in my system, a good thing but also confusing the hell out of me 🥴
Also had the rheumatology appointment (which I have waited four months for) today, went through all my symptoms and what has gone on with Drs. He looked at me confused and said why has your dr referred you to here 🤷🏻♀️
He has said he isn’t too sure were to refer me too and will write to my gp but thinks I may need to see a gastric consultant. Would this seem right? I tried to make appointment with dr after seeing him to discuss but when receptionist asked what the problem was I got a phone call back about an hour later saying the dr will await their report and call me if needed and cancelled the appointment she made 😡 I don’t want to keep being passed pillar to post but wonder if it’s a process of elimination and dr just can’t do anymore 🤔 So looks like another waiting game 😢
I am also confused about my B12 total as you can see from my Drs November results this has halved, would this be normal? Also my MMA and homo all seem to be within range so I am now questioning is this B12 🤷🏻♀️ I have been taking oral B12 supplements since my last injection which was was in September 2018 so could this have effected this and maybe oral is enough? Just don’t know 🥺.
All my bloods prior including November I had shown higher end mcv, low B12 of 102 but only this November full blood do I have the mch reading which shows higher, my mchc was a little higher on my prior blood count before November. I had positive parietal cells but negative IF which is why dr has withdrew injections.
Sorry for the rant 😫
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joleen19832
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"positive parietal cells but negative IF which is why dr has withdrew injections"
UK B12 guidelines above indicate that if a person responds to B12 treatment eg symptoms improve then treatment should be continued. Link also mentions Antibody Negative PA...it is possible to have PA even if IFA result is negative.
NICE guidelines Coeliac disease (UK document) recommends anyone with unexplained b12, folate or iron deficiencies should be tested. Two tests are recommended.
I note on an older thread you had a tTG IgA test in past which showed a negative result but I could not see a Total IgA test. I don't see how doctor can be confident you do not have Coeliac disease if you haven't had both tests.
tTG IgA test looks for a particular antibody to gluten.
Total IgA test checks which patients have IgA deficiency. Patients with IgA deficiency are unable to make the antibodies that tTG IgA test checks for even if they have Coeliac disease so their tTG IgA results will be negative. Patients with IgA deficiency need different tests for Coeliac disease.
Result of tTG IgA test can be negative if
1) Patient does not have Coeliac disease
2) Patient does have Coeliac disease but was not eating enough gluten prior to test to produce a high level of antibodies in blood.
Were you warned by doctor that you would need to eat plenty of gluten each day for several weeks prior to testing?
3) Patient does have Coeliac disease but has IgA deficiency so tTG IgA results are negative.
Thank you so much for you useful info 😊. I am a member of PAS, I spoke with them some months ago and the man I spoke to me said well first off you haven’t got a diagnosis, he advised on a link which I printed re anti negative treatment or something along those lines and gave to the dr in November, she shrugged it off insisting it wasn’t PA but felt it was CFS. Although I argued how can I have felt so much better but symptoms reside after around 8-9 weeks. That’s when she said she would refer me and “didn’t need to see me again”. Maybe it is worth me speaking with PAS again and going over everything.
Your link Macrocytosis - in 2013 I had blood test with full blood count then, mcv was 114.4, mch 33, rbc 2.85 and was told to take iron for three months which I did and was never tested again after. It included a blood transfusion test which says normal.
Re the coeliac test, dr never mentioned anything about this but I had told her that since Feb last year I had changed my diet considerably. I have made sure the quick and easy processed foods went out the window, all meals are made from scratch now and where possible I do buy gluten free, organic fruit and vegetables along with organic eggs, free range meat such as bacon and chicken. Changed my bread to whole grain also. I am now buying organic meat too (beef, mince, gammon ect) although it costs a fortune 🙄 anything to try and be more healthy really. So with this maybe this didn’t help this test too 🤷🏻♀️ I do know now when I do have to have a meal on the go for eg a sandwich with white bread my tummy gets bloated, but generally never have pain. All again mentioned to dr. One of my biggest problems is I just don’t have a lot of bowel movements (probably once every 4-5 days) although after an injection everything works bloody wonderfully and I feel so much better for it! Bloated ness gone ect
I am hoping gastro can help too 🤞
Injections stopped 🤷🏻♀️
My dr spoke to the pharmacist after I asked to have injections every ten weeks as started to feel a slightly off and the constipation would come back and dr said I don’t have pa as my IF was negative.
I have some B12 which I imported but reluctant to use it in fear its going to skew my results when I do get to see gastro, although this could be months away yet. But as my recent bloods indicate B12 and folate is in a good state although toilet issue is here along with some tiredness I actually don’t feel too bad (certainly no where like like January anyway) then I should just wait it out.
Serum B12 results - and active B12 results - aren't particularly useful if you are on injections. They will be off the scale after an injection and then fall over time - how quickly just varies from person to person.
A gastro would be the normal referral for a gastric issue and PA/B12 absorption problems are related to the gut.
MMA and homocysteine being in range would suggest that you are no longer B12 deficient and your cells now have enough B12 - certainly the two key processes that use B12 are running OK.
The GP should not have withdrawn injections because IF came back negative. Its not a very sensitive test and gives false negatives about 50% of the time. The standards produced by the British Council for Standards in Haematology refer to 'IFAB-negative PA' as recognition that the test cannot be used to rule out PA as the cause of a B12 deficiency.
Suggest you contact the PAS again, as in your response to Sleepybunny
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