I absolutely agree with you over Endocrine issues being involved, without a doubt you are so right!
For those of you who are just starting down the ‘research’ path I’ll try and explain how our condition affects the Endocrine System. Dr Diana has a theory that many of us are suffering from External Communicating Hydrocephalus, this is basically (excess of) fluid on the brain, CSF fluid to be precise. Due to there being this excess of fluid, in a confined space (the skull) it exerts pressure on adjacent tissue, this being mainly the brain itself but it also invades a bony chamber (the Sella) at the base of the skull, in which the Pituitary Gland lives. As the Pituitary Gland becomes mildly squashed it is referred to on an MRI, as a ‘Partially Empty Sella’
A healthy Pituitary Gland looks like a cherry. However, this persistent pressure from the excess CSF fluid, that many of us have, squashes the Pituitary Gland so much that it eventually lays flat at the bottom of the Sella. This is referred to as an ‘Empty Sella’ on an MRI scan. It’s not actually empty, you still have a Pituitary Gland but it is functioning (or, more precisely, malfunctioning) under pressure.
Be aware, that the Pituitary Gland is the ‘major control’ for the endocrine system, it directs other organs and endocrine glands. So this malfunctioning can affect a multitude of things from either one, some, or all branches of the endocrine system. (i.e. sex hormones, growth hormone, water balance, thyroid stimulating hormone, etc). Many of us seem to display symptoms of Hypothyroidism for instance (dry skin, loss of hair, low basal temperature,tiredness, weight gain etc).
The good news (according to Dr Bolognese’s videos at TCI) is that, if the intracranial pressure (from the excess CSF) is brought to a normal level, the Pituitary Gland can recover and start to function properly again, yey! So, all we need to get is a knowledgeable radiologist to look carefully at our MRI’s, recognise the problem (of an Empty Sella, or Partially Empty Sella) and for a Neurologist to find a solution to reduce the intracranial pressure (Dr Diana found Diamox successful) and we should be on the road to recovery.