Functional B12 deficiency in Chronic Fatigue Syndrome, 2022, Russell-Jones

That's a pretty big range though, and often the accepted minimum for men is thought to be not a bad gauge for women - there being a theory that low iron is just 'accepted' in women because it is more common thereby impacting the norms/averages?

 

Male 24–336 µg/L

 

But that is true for lots of test results - reference ranges are often enormously wide, and the top of the range can sometimes be anywhere from 5 - 10 times higher than the bottom of the range. I've seen reference ranges for ferritin for men of roughly 30 - 400 mcg/L. For women it is usually 13 - 150 mcg/L, but that assumes that the woman being tested is still having periods. Once past menopause women's ferritin is sometimes "allowed" to be as high as a man's.

The ridiculous thing is that NICE has defined iron deficiency as a ferritin result of < 30 mcg/L, yet the reference range goes down as low as 13 mcg/L. The other issue with iron is that doctors will often test a Full Blood Count, check out the haemoglobin, and if it is in range, or sometimes just slightly below range, they take this as evidence there is no anaemia, and therefore no iron deficiency.

You might find this link helpful :

https://cks.nice.org.uk/topics/anaemia-iron-deficiency/diagnosis/investigations/

 

Is there a difference in sensitivity for MMA testing.
Serum v urine ?
Both daughter and aunt have high levels of B12 ( excess of 1200 and at times 2000) with only limited supplementation of it ( half dose of multivitamin powder)
Urine test suggested an issue , serum test later did not. .

 

@Amw66

https://www.labcorp.com/help/patient-test-info/methylmalonic-acid

Can either blood or urine be used for the MMA test?
In most cases, it is okay to use blood or urine for this test. Sometimes, a healthcare provider may want to test both blood and urine in order to compare the MMA results. Since homocysteine is a blood test, it may be more efficient and convenient to draw blood for both the MMA and homocysteine tests when they are ordered together.

FMMA test: higher/normal range indicates a deficiency.

 

Indeed - I'm slightly aware there is some issue from experience, having had a ferritin result of less than 10 a number of years ago from a consultant who did a ferritin test. I'd spent the prior 2yrs going to GP with all sorts of symptoms, and maybe they did iron as part of FBC but I don't remember any reporting back on it. When GP got the result they were more concerned about getting me off iron tablets at the lowest possible point (saying what consultant suggested it should be was far higher than it needed) and using haemoglobin as the measure for claiming they were dangerous. I never got told what that was either. I was having to work full time in heavy duty jobs and noone was batting an eyelid of acknowledgement at me saying how awful I felt and what a struggle that was.

New GP surgery a number of years later, without said notes, did a round of tests which led to more tests (3 rounds eventually, the first lot was not specifically looking for iron as it was other issues immune stuff etc but as 11 boxes were ticked maybe FBC was on there) and sent some iron tablets with a note of issue - which made me think that whatever it is that I have does show on tests without them having to have started in the right place.

What I've been unaware of is the regs and advice that underlay all of this being able to happen

 

I know little about this, but that still sounds low as a minimum to me. At least it is 12 higher than the women I guess.

How does that reference range 'operate' in reality? Is it 'as long as person feels fine and it is within this, we are OK' or is it 'even if the person feels awful if it is within this then no issue'?

 

I had low WBC counts for over 20 years, felt 'viral' all the time, one time it was down at 2.8 and my GP was concerned, so she retested in 6 weeks to see if it went back up. It did eventually.

I used to ask to test for things like ferritin, vitamin D, B12, but now they don't unless you're a senior or diabetic.

 

Thanks @Mij

We have had testing done at different times over past 6 years and I keep a spreadsheet to track changes.
As we never seem to be able to get fuller than FBC done at the same time this makes relationships a bit patchy .

B12 has been consistently high ( when supplementing sublingually previously it was simply noted as >2000 and now minimal supplement it's in the 1250s ).

A urine MMA as part of an organic acid panel in 2019 suggested B12 deficiency ( when serum B12 was ,
>2000 and supplementing so perhaps a functional deficiency getting into cells ) , but in 2021 a serum MMA was bang on mid range when B12 was somewhere between 1497 and 1251. So this could reflect a personal " normal" perhaps.
If anything gut is worse now than previously so I would have expected it to be other way around .

Perhaps I am making the mistake of assuming that the ranges distribution is parametric ....

Homocysteine was tested ( but not at same time as B12) and lowish at 6 - weird range of 0-20. I would have thought 0 Homocysteine might be an issue.

Folate and Ferritin are on lowish side of range and have been dropping as B12 drops .

My daughter has MTHFR SNPs ( and MTR / MTRR SNPs ) which would suggest a higher requirement for folate and B12 . Does high B12 serum simply reflect the need for higher levels generally ?

We do have gut issues which will affect absorption of many compounds . GPs don't seem to get this though.

My aunt has very high B12 and very high ferritin ( no heamachromatosis) She can't cope with B12 supplements at all.
There was an argument that you need to load up B12 to get it into the cells ( Bansal amongst others suggests this) . It didn't work for my aunt.

 

Certainly in thyroid disease doctors treat blood test results, not patients. So if someone feels well and can lead a comfortable and worthwhile life, if the patient's TSH is below range doctors will often reduce their dose of Levothyroxine and will ruin every facet of the patient's life in the process, telling the patient that if they don't reduce their dose they will get osteoporosis and heart disease in the future and this must be avoided now so they can live longer later with zero quality of life. So doctors effectively tell patients they must live an intolerable life now just so they can live an intolerable life for a few months or years longer at some indeterminate time, possibly decades in the future. It is longevity that many doctors aim for. The patient's symptoms and quality of life are irrelevant.

And if the patient's TSH is really, really low some patients can have their dose of Levothyroxine reduced by 90% or can be told they must stop taking thyroid hormones altogether. As a result, some people (usually women) have ended up in hospital suffering from myxoedema coma (MC) due to having no thyroid hormones in their bodies. MC has a fatality rate of about 50%. I'm not saying it is common - but it is deadly. And life with too low a level of thyroid hormones can lead to suicide.

I am not too sure if people need an account to read that last link.

 

Freudian hysteria was described as a functional disease because it served a useful function in the patient's life. Functional disorders like FND use the word in this sense but gain respectability by implying that they mean the same as biological functional disorders which mean that something is not functioning properly. Deniability is all in the BPS world.

 

I took high does of IM hydroxocobalamin years ago as recommended by Dr. Paul Cheney's protocol and I felt absolutely horrible. His CFS patients said it helped them a lot but I discontinued after 10 days.

I take oral supplements from time to time, I have no idea where my status is at this point. My GP told me to stop taking them b/c my blood levels were 'high' a few years ago.

 

I'm a diabetic. I must take B-12. I've found allowing my B-12 to get low makes me feel much worse. Keeping my score in the normal range solves the problem.

I was a Cheney patient who took B-12 shots. The shots raised my test level sky high. I did not go into remission. I did not receive an improvement. My primary care doctor told me to stop wasting my money. It took a while for my B-12 level to decline back to the normal range, then I went back on oral supplements.