Written by Cort
I put this together after getting an email from someone I know about a kind of unusual treatment that worked very well for her.
June’s adrenal glands weren’t just low – they were shot. In fact her cortisol levels were low enough to get her diagnosed with Addison’s disease; a disease characterized by low cortisol levels (hypocortisolism) and adrenal insufficiency. That got her searching Addison’s groups to see what they were trying.
Interestingly, given the craving for salt many CFS patients exhibit Addison’s disease patients also display marked cravings for salt or salty foods (due to the urinary losses of sodium.”
Of course low CFS patients often exhibit mildly low cortisol levels. Dr. Holtorf, – a CFS/FM specialist focusing on endocrine issues, however, thinks most cortisol tests understate the degree of hypocortisolism present. By any marker , however, June had very low cortisol levels – her adrenal glands were hardly functioning.
Searching the Message Boards – Addison’s message groups got her to try things like Ashwagandha and Licorice root. Ashwaganda helped June but it wasn’t enough for a severely depleted adrenal gland. Focus on Ashwaganda – Ashwaganda is an ‘adaptogen’ that is believed to help normalize endocrine functioning, increased energy and mental functioning and assist in sleep at night. Adaptogens are believed to have ‘normalizing’ rather than curative effects; ie they appear to help rebalance the complex systems of the body rather than boost one or the other up.
Pregnenolone is synthesized from cholesterol (any low cholesterol levels out there?). Interestingly, it’s also produced in small quantities in the brain where it has neuro- protective effects and enhances synaptic transmission. It’s currently being studied for its effects on cognitive functioning. Dr. Ray Sahelian calls pregnenolone the ‘feel good hormone”.
Alternative to Cortisol? – June needed something curative not ‘restorative’. She didn’t want to take cortisol but as she investigated alternative treatments for Addison’s she learned of pregnenolone, a steroid ‘prohormone ‘ found ‘upstream’ of cortisol in the HPA axis. Pregnenolone provides the building blocks for many of the hormones in the body including cortisol , estrogen, progesterone and other hormones and other steroid hormones. First it is converted into DHEA and/or progesterone and then its converted into testosterone and the estrogens or to the estrogens, cortisol and aldosterone.
Early studies suggested pregnenolone had energizing and anti-stress capabilities. Later studies suggested it may be able to help with mood elevation, relaxation and sleep.
Caution – Pregnenolone can be obtained over-the-counter but June cautions that she had numerous endocrine and other tests done before she took it. Hormones can have strong and sometimes very negative, longlasting effects when taken inappropriately. Hormonal supplementation in ME/CFS is controversial; many doctors will not prescribe them unless they have clear and strong evidence of significant adrenal gland dysfunction. Even with June’s test results, her endocrinologist would not monitor her on pregnenolone because information on proper dosing levels for the hormone is so scanty. June had to go to her gynecologist before she found someone willing to monitor her on it.
Pregnenolone, however, worked and her energy levels increased significantly in the year she’s been on it. She still has to be careful about crashing from too much activity and she just got a horrendous infection that it took several months to get over; ie she’s not well but she is much better. She also knows of other women with ME/CFS who have benefited.