Pernicious Anaemia Society
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Metabolics appointment yesterday- think I've been undiagnosed again ! Blood tests done: ??

Well, it did look as if SIBO and/or coeliac disease was going to be the answer to 3 years of continuing symptoms and deficiencies in B12, iron, folate, and osteoporosis of the spine..... and now perhaps not !

Had appointment with metabolics consultant and dietitian yesterday:

Dietitian happy with my answers and did not put all my problems down to 40 years of very healthy vegetarian diet. For which I am relieved.

Consultant NOT happy, because I am self-injecting B12 every other day. Does not believe that my problem is solely B12, but said I would have to stop taking it for 3 months in order to test that. When I told him that I could not do that, he talked about the feeling of EUPHORIA....... I told him that that was perhaps a possible side -effect for a healthy person, but that I had never experienced euphoria and was only injecting reluctantly, ineptly, and in order not to get so ill that I feel like I'm dying. That for 3 years I have been trying to get a diagnosis and help, and was on the point of losing my job when Haematology halved my injection frequency, leaving me with no other choice but to self-inject. I also said that I was sure he was aware that my body would get rid of what I don't need. He said that he was on my side, but it felt as if we had a totally different set of priorities.

He seemed far more concerned with my frequency of self-injection than with my symptoms. Tried to get him interested in my list of symptoms and photos. I asked him about any feedback from the biopsies from the gastroscopy 2 weeks ago, and he said he had them in front of him. I asked him if the coeliac disease diagnosis and/or SIBO were confirmed - he said that I would need to talk to the gastroenterologist about that (by which I'm thinking there might be another dead end looming there).

I did have bloods taken (Vitamin A, zinc, amino acids) and urine sample (organic acids). Also the following : Lysosomal enzyme screen: neurodegenerative disorder (14 enzymes incl. chitotriosidase) - anyone know anything about this ?

He said that my MMA levels were not B12 deficiency type levels, which are commonly very high. This contradicts research that I have read where either MMA levels are slightly raised, usually indicating B12 deficiency, and tend to drop to normal levels once injections start. Stichting B12 Tekort is just one example of this line of thought. Mine seem to be mainly in the upper 300s, and he generally sees people with far higher levels. I did show him my initial diagnosis, confirmed by the same hospital, of functional B12 deficiency based on raised MMA levels, but this now seems unimportant. Anyone know anything about MMA levels ?

Any help will be much appreciated. As you can imagine, feeling flat as a biscuit today (despite "euphoric" injection this morning !)

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I'm mad on your behalf. Euphoria indeed huh. Stupid idiot was the most polite words I came up with.

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There are a few mentions of MMA ranges in relation to B12 deficiency in this recent article

ncbi.nlm.nih.gov/pmc/articl...

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Best description of MMA results I came across was at B12vitamin.org with an article titled "Vitamin B12 Deficiency Test". It describes all the B12 testing, but also in the MMA section it lists all the normal ranges as it seems to be listed in different units frequently. Hope that helps!

I just got my MMA result back yesterday after showing up deficient with B12 serum in December. I've been supplementing with 1000 mcg methylB12 since Dec. and I came up with 1.07 mmol/mol Cr with std. range <3.6 mmol/mol Cr. So I guess I'm normal, but still don't have energy up to where I was and still experiencing hair loss. Maybe my body is still repairing? I talk to my dr. next week.

Good luck with finding the answers you need!

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Despite improvements and supplements, I also sometimes get a lot of hair loss, or "scribbly" hair that feels cobwebby. The metabolics consultant is testing blood for zinc among other things - probably because of this. Often get deficient in folate and ferritin, so I supplement these because hair loss can also be caused by either of these. Do your gums bleed and corners of your mouth get very sore and split too?

It takes a while to even start to improve and improvements may be slow and subtle.... keep a record. I only recently realised that I no longer wake up with stiff painful feet. I used to hobble downstairs to run a bath before I could start my day. Now I don't.

Still start my day with a bath because it's become a habit that I quite like. Especially in this weather !

Good luck, kngswim

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