I'm off for my homocysteine test tomorrow since being messed around by the Drs. I had a negative IFAB test. I am a bit nervous about it, I'm worried that if homocysteine isn't high they will stop giving me treatment, and im worried that if it is high, and they test for parietal cell anti bodies and i'm negative we're just going to be stumped as we will rule out PA in that case. PA is in my family and i have felt awful for months. Currently feeling so exhausted the action of lifting fork to mouth is tiresome. I have to work 4 days a week and its wiping me out. I haven't had an injection for 8 weeks so it won't sway the results i hope. Having injection on monday i hope it boosts me.
I'm just venting here. Anyone have any experience with the homocysteine test and results?
Written by
ozwald28
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If 2 monthly injections are'nt stabilising your symptoms it sounds as if your in need of them more frequently. I felt the same as you and were unable to get through my day and had no choice but to take matters into my own hands and self inject. It will be interesting to see what the results show mine were negative.
This diagnostic flowchart suggests that if B12 treatment helps symptoms then doctors should think about continuing treatment even if tests such as MMA/Homocysteine and Active B12 are normal range. See bottom right part of flowchart.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
I have read that about 50% of people with PA test negative on IFA test.
About 10 - 20% of people with PA test negative on PCA test.
I'm assuming there must be a few people with PA who test negative on both tests.
Parietal cells produce intrinsic factor. The gastritis that is found in PA leads to loss of parietal cells. If there are no parietal cells left then I'm assuming there will be no intrinsic factor antibodies and no parietal cell antibodies.
Maybe if both IFA and PCA test are negative, you could ask your doctors if it's possible that most or all your parietal cells have gone.
Have you ever had an endoscopy that looked for gastritis?
flattened mucosal pattern at D1 & D2 (duodenum): no cause given
patchy gastric metaplasia: no cause given
ventricular ectopics: no cause known
...... and raised MMA !
This last result gave my GP a reason for poor response to B12 treatment - and a confirmed diagnosis of functional B12 deficiency.
After five MMA tests (all raised despite continued frequent B12 injections), a final sixth test three years later gave me an in-range result ! So the frequent B12 injections are working.
Please don't give up if homocysteine test does not help you with answers. You are ill and there is a reason.
You don't have to be rich to get answers, but it helps to have a really good GP.
All of these tests were NHS - the B12 I now pay for myself and self inject in order to get a maintenance frequency that controls my symptoms as much as is possible.
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Accuracy of at home homocysteine tests
Homocysteine levels after injecting
