Hey everyone, glad to see your back in here.
Shye, your transferrin saturation is a worry to me.
That was definitely my trigger. I feel so good now that it is down to low 40's, no fatigue now, but still awake in the middle of the night for my nightly "session of insomnia", I'm getting used to it now, and go with the flow, a good research time
So long as i get my 7 hours I'm sweet. You definitely have an iron thing going on there IMHO.
Iron is very toxic for anyone with Porphyria, all metals are.
My theory is that the stiff joints (knees and hip in my case), and heavy fatigue is the iron effect. The neurological symptoms are the porphyrins or a combination. Once the iron gets highly saturated, the porphyrins start to increase causing the neurological effect. The cup runneth over, so to speak. Add in a dose of unsafe drugs, ie: my dental injection and you are history. That has happened twice to me, with the accompanying brain lesion, and also in both cases Epilepsy.
What about the latest studies from Maria De Sousa, really interesting, her studies have found that ferritin levels/iron metabolism is controlled by the Killer-T's (lymphocytes). And people who get high ferritin because of hemochromatosis always have low levels of lymphocytes. But what happens to the iron in people with high lymphocytes? Do people with MS generally have low or high lymphocyte levels. Any study results available?
I have extremely high levels of lymphocytes (due to splenectomy after a car accident 35 yrs ago). So I differ from the normal hemochromatosis person. This may be why I respond to the blood draws in miraculous ways, I just don't know the answer to that, or why I don't load ferritin like classic HH does, but still get the bad effects.
My iron levels are halved and I'm great, energetic and frisky again
But with a lot of heart antics going on, probably a neurological effect as I feel better with exercise, lying down brings it on and it feels electric.
Solution - Keep moving