1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Do I really have M.E? Please help ...

Discussion in 'General Symptoms' started by misskittycat, Jan 14, 2013.

  1. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi Misskittycat, that’s great news about your boyfriend, it should help a lot.

    With regards to getting tested for B12, Folate and Iron, as your doctor seems to be very out of date, they are very likely to try and tell you that, because you do not have major problems with your full blood count, that are medically known as Macrosytosis, that this shows that you do not need these tests. This is not true, Macrosytosis is a very late sign of deficiencies, and people can be very sick before this happens, and the tests have to be run, to find these milder deficiencies.

    Dr Mirza, explains this, in this article http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    He says,
    The problem with these guidelines is that they either omit major causes of fatigue or make flagrant misguided mistakes such as the following “NICE” statement:


    “Vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis”. Vitamin B12 deficiency (or insufficiency) is extremely common even without macrocytosis. Macrocytosis is a very late sign of this vitamin deficiency. Furthermore, a concomitant iron deficiency, such as in celiac disease, would cancel out macrocytosis and the resultant mean corpuscular volume of the RBC would be normal.


    The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS.


    With regards to testing for Iron deficiency, do not let your Doctor just tests for Ferritin, Ferritin levels will rise with any inflammation, or even a very mild infection, which will make it look like you have higher Iron levels then you do, The test you need to get your Doctor to do, is called Full iron studies. This will give you all the information you need about your iron levels.

    I would imagine that your Doctor isn’t up to date on Vitamin D either. You should be tested for Vitamin D3, not D2, and your levels should be above 75nmol/L, preferably a lot higher. If your levels are low, your Doctor should if they haven’t already, check your calcium levels, before starting treatment. This is because; there are a small number of diseases, such Hyperparathyroidism, that if you have, you should not take vitamin D. All of these diseases cause high Calcium levels, and this test will rule them out, and you will know that it is safe to take Vitamin D.

    Treatment should be a course of 50,000iu D3 tablets, until correct levels have been achieved. Some people can experience some symptoms such as muscle cramps etc, when taking Vitamin D, this is caused by a lack of cofactors, such as Magnesium, which is explain here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/ Because you are a Vegetarian your diet is likely to be high in these cofactors, but if you do experience any problem, you can buy supplements, which will fix the problem.

    Hope your next appointment goes very well, and you get your thyroid medication increased, and the correct tests done. Hopefully you will be feeling a lot better very soon.

    All the best

See more popular forum discussions.

Share This Page