Hi Crux, Hyperpigmentation, that makes things interesting and narrow down the options a lot, Addisons (adrenal Insufficiency) comes in three different kinds Primary, secondary and tertiary, you get hyperpigmentation with primary because the lack of cortisol produced by the adrenals causes increased ACTH production which causes the hyperpigmentation.
Your test results say low cortisol and low ACTH which under normal circumstances rules out primary Addisons which causes the Hyperpigmentation, however because you had been taking cortisol replacement, which can cause the Pituitary to stop making as much ACTH this may be the reason for that test result, so we cant be too sure. What the different tests for Adrenal insufficiency mean is explained in the chart on this page
http://en.wikipedia.org/wiki/Adrenal_insufficiency and there is more information about Addisons here
http://emedicine.medscape.com/article/1096911-clinical
All your symptoms hyperpigmentation, vomiting, diarrhea, fainting, low blood pressure, headaches, weight lose, fatigue etc are all symptoms of Addisons, it can progress very slowly and has a lot of symptoms, you have also probably had a B12 folate deficiency before then as well, tends to be a consequence of a Vegan life style. Could be caused by celiac have you been checked for it? But a high MCV can mean a lot of things see
http://en.diagnosispro.com/differen...scular-volume-lab-increased/10439-154-10.html
The casues of Hyperpigmentation and low cortisol are listed here
http://en.diagnosispro.com/differen...rtisol-lab-decreased/33941_11102-154_153.html
I have a strong feeling that the answer to your problem is that your endocrinologist has skipped a few steps in your diagnosis and has just assumed that your adrenal insufficiency is the auto immune variety; there are many different causes of it.
So going back to what causes a bad reaction to Vitamin D, and also causes Adrenal Insufficiency, answer Sarciodosis and tuberculosis.
The article above lists causes of Addisons as
Causes of acute adrenal insufficiency are mainly Waterhouse-Friderichsen syndrome, sudden withdrawal of long-term corticosteroid therapy and stress in patients with underlying chronic adrenal insufficiency.[10] The latter is termed critical illnessrelated corticosteroid insufficiency.
For chronic adrenal insufficiency, the major contributors are autoimmune adrenalitis, tuberculosis, AIDS and metastatic disease.[10] Minor causes of chronic adrenal insufficiency are systemic amyloidosis, fungal infections, hemochromatosis and sarcoidosis.[10]
Autoimmune adrenalitis may be part of Type 2 autoimmune polyglandular syndrome, which can include type 1 diabetes), hyperthyroidism, autoimmune thyroid disease (also known as autoimmune thyroiditis, Hashimoto's thyroiditis and Hashimoto's disease).[11] Hypogonadism and pernicious anemia may also present with this syndrome.
Adrenoleukodystrophy can also cause adrenal insufficiency.[12]
Adrenal Insufficiency can also be caused when a patient has a Craniopharyngioma which is a benign tumor that can damage the Pituitary gland causing the Adrenal Glands not to function. This would be an example of Secondary Adrenal Insufficiency Syndrome.
I think that you probably do have adrenal insuficiency but that it is not the usual auto immune type and that your various health professionals have leapt to the conclusion that this is what it is and started treating it (oops)
You need to find the cause of the adrenal insufficiency and get that treated as well as the adrenal insufficiency, if you are to get better. Sarcoidosis and tuberculosis are possibilities because they damage adrenal function and cause bad reactions to vitamin D and you have been exposed to TB so it is possible, but all possibilities for your failing adrenal glands need to be ruled out such as Hemochromatosis (iron overload) as this can destroy adrenals and cause hyperpigmentation.
I know what you mean about not liking doctors, but for all these conditions you need to have a doctor investigating them, you may want to get a second opinion from a different endocrinologist as the one you have seen doesnt seem to have ruled everything out so far. Have you been tested for aldostorone? Adrenal failure often causes a lack of this and it has to be replaced for people to feel better.
As I see it you have hyperpigmentation which rules out ME as it is not a symptom of it, although some studies of ME have shown reduced levels of cortisol, levels are not majorly low in ME, your s have been <1 which shows an almost total failure to produce cortisol which also makes me think this is not ME.
If you can find someone who will spend the time to go through all the possible causes of your failed adrenal results, strange reactions to vitamin D, hyperpigmentation and other symptoms then I think there is a very good chance of them being able to find the cause of all your problems and give you the right treatment.
It can be difficult to find a good doctor though and you may have to try several, it helps to always take a support person with you, to write out all your symptoms, and the history of your disease, your family history of illness especially the history of TB, what meds your on, and what tests you have failed, and to print out all information from the net that shows why you want testing for certain conditions, if its from reputable medical sources then doctors will read it and understand. It takes a bit of effort to prepare properly to see doctors, but can make a big difference to the results of the appointment. Be nice to them and understand that most of them have big egos and generally dont like alternative medicine so dont mention it and you should be OK.
Hope you get things sorted soon!!!
All the best