Our 8 year old has had an uptick in symptoms

[BeautifulDay]

Here is a link to one source on the high B12.

https://academic.oup.com/qjmed/article/106/6/505/1538806

 

[Valentijn]

Actually thinking out loud, maybe the B12 deficiency does fit. She is high B12 without supplementing. Yet, she eats little meat. The Mito doctors said she has seen this happen (high B12 without supplements) in many MitoD patients. There are people who have trouble absorbing B12 into the cells and are deficient, yet it can be high in their blood. I don't remember where I read that. I'll go back and search. Therefore they look like they are high and not deficient of B12 on blood tests, but are actually starving for B12.

Yes, that certainly can happen. There are more tests that can be done for markers of how well B12 is being used - MMA, I think? It's important to find the source of the problem so it can be treated properly, and not just supplement (if that would even help) to cover it up.

 

[Ryan31337]

@BeautifulDay,

I forgot to report back that I mentioned the elevated B12 status to my neurologist. She didn't comment on possible links to MitoD but she did take it seriously and wanted Methylmalonic Acid (MMA) and Homocysteine results for a clearer picture.

Ryan

 

[Arnie Pye]

For the blood test, she was not fasting and it was in the morning (but not first thing in the morning). I read a lot of articles that mention using fasting for the various iron serum tests, but I couldn't find any of them backed up studies. However, I did find studies that stated it did not matter if with fasting or the time of day. If you came across a study for fasting or early morning testing, I'll put it in front of our doc.
Study stating fasting vs non-fasting not matter,

I don't have studies. But the NHS suggests fasting overnight (for 12 hours) before iron testing :

https://www.nhs.uk/chq/Pages/1018.aspx?CategoryID=69

The link I gave you earlier : http://www.americanhs.org/faq.htm : mentions fasting and giving up iron supplements for a week before the tests. (My underline in the quote)

Q: How can I know if I have iron overload/hemochromatosis? What tests should be performed? I hear that there is a DNA genetic test kit for hemochromatosis, is that true?

A: A simple series of blood tests which can be performed by any doctor or lab can indicate iron levels. They must be proper iron measures: Total Iron Binding Capacity (TIBC) together with Serum Iron. Divide TIBC into Serum Iron to get the percentage of transferrin saturation also known as % of saturation.. It is important that the serum ferritin is also performed at the same time and it should be done, if possible, while fasting. Refrain from iron pills for a week prior to the tests.

I fast for every single blood test I ever have, and always get them done first thing in the morning on the basis that some of them insist on it e.g. cholesterol. If I have a (fasting, first thing in the morning) cholesterol test and iron testing done on the same day at the same time, then 6 months later have just iron testing done after eating in the middle of the afternoon, how can I compare the two sets of results in a meaningful way? So, I don't have any links to back up what I do, but it just seems logical to me. I realise this is no help to you though.

There are people who have trouble absorbing B12 into the cells and are deficient, yet it can be high in their blood.

You may have read it in the link I gave in post #5.

I feel better supplementing B12, despite having no reason for this to be the case according to doctors, and despite having high levels of B12. They are convinced the effect is placebo. I carry on regardless.

You may find this site of use, although you have probably already found it :

UK : https://labtestsonline.org.uk/
USA : https://labtestsonline.org/

Also she hasn't eaten red beef in years. It tastes metalic and gross to her.

There are lots of reasons for metallic taste in the mouth, among them high zinc and/or high copper. It would be worth investigating. There may be some useful avenue(s) to explore.

http://www.badmouths.org/

https://symptomchecker.webmd.com/mu...ste-in-mouth&symptomids=98|459&locations=66|7



I've exhausted all my sources of info that may be relevant to your daughter's results, so I don't think I can usefully suggest anything else. But if I think of anything, I'll post again.