But here's the game-changer: I had surgery back in 2005 to remove a pituitary tumor that was pressing on my optic nerve. The specialist is concerned that either the tumor or the necessary surgery may have left me with diminished pituitary function and that an endocrine (hormonal) disturbance could possibly explain my current condition.
In Depth: The appointment went really well. I was impressed that he questioned almost everything I brought up, because it showed that unlike some docs I've seen in the past, he truly wanted to get to the bottom of this puzzle, rather than just handing out any treatment or protocol his patients insist on.
He was skeptical at first about the vitamin C / scurvy / possible arsenic connection, but after examining those corkscrew hairs on my legs and noting how I’ve been taking ‘C’ for years now with absolutely no improvement, he agreed it’s worth investigating.
He also thinks that it’s worth trialing a systemic antifungal for 2-3 weeks — or possibly longer — due to my symptoms flaring whenever I have even the slightest bit of sugar.
And then his jaw dropped open...
As the appointment was wrapping up, I asked him if he thought it might be worth running new thyroid tests, as like most ME/CFS patients, my body temp is always on the low side. Really low.
One of the organs that regulates thyroid function is the hypothalamus. When it senses low levels of thyroid hormone, it responds by secreting TSH Releasing Hormone (TRH), which alerts the pituitary to produce thyroid stimulating hormone (TSH).
Because studies have shown the HPA axis to be dysregulated in ME/CFS, I mentioned the surgery I had back in 2005 to remove a tumor from my pituitary gland, wondering aloud if perhaps the tumor formed because my hypothalamus was overproducing TRH to help my thyroid function.
The doc's jaw dropped open. "You had a pituitary adenoma?"
Indeed I had, after an eye exam showed my peripheral vision was really bad (the tumor was pressing against my optic nerve). I had surgery to remove it, and then three MRI's over the next 5 years to make sure it was gone.
Why is this a potential game changer?
Quoting the doctor: "I am concerned that the adenoma, or the surgery, may have left you with diminished pituitary function. I am not questioning the need for surgery, but simply recognizing that as an important time point in your health history and that an endocrine disturbance is a possible explanation for your current state of health."
He asked if they'd done any other hormone testing before or after the surgery. They hadn't.
So then it was my turn to pick my jaw up off the floor. Could it be possible that something may have been missed fifteen years ago that may have improved my health, but was missed? Well, if that is indeed the case, I can't turn the clock back -- all I can do is go forward and be grateful that it was found now.
Plus, as has been discussed many times on this blog, it's possible that even if there are some hormonal issues that can be addressed, it's probably more likely that there isn't one single cause for my ME/CFS, in other words, different pieces of the puzzle.
Anyway, I have a follow-up scheduled on March 20th and am very eager to move forward on addressing what may be two huge factors: the possible arsenic toxicity inhibiting energy, immune and digestive functions -- and depleting my vitamin C levels -- and any hormonal imbalance(s) related to my pituitary gland.
I couldn't have done any of this without your help, and for that I'm eternally grateful.
p.s. Although it can be overwhelming at times, I trust you're taking every possible precaution to keep yourself and your loved ones safe from the coronavirus. As stress can affect the immune system, please try and stay as calm as possible in the coming weeks and months...