TYMLOS FEEDBACK

I’m always nervous about where to give myself the needle. I’ve already made myself bleed once. I’m getting better as another Mayo Clinic poster told me about the dot chart. I find it very helpful.

My comment isn't good, but if it's of comfort I think it may be unusual. To say it quickly, Tymlos has affected me badly from the beginning. First my heart, and headaches, and depression. Finally, I was able to overcome those by reducing the dose all the way down to 3 clicks, that's all I could manage. Over time sometimes I'd try 4 clicks, but it was always bad, so I stayed with 3. I gained 12 pounds on Tymlos. Nothing else changed. Nothing. I have been on the same diet and everything else for many years. Then the worst happened! I started having a headache daily. Sometimes it was really bad. Sometimes not. But I toughed it out. THEN I noticed that I was losing my memory. I mean REALLY losing it! Serious things were completely forgotten. I have had a high IQ with a stellar memory all my life, so when I didn't remember what day it was, or that I had seen a movie or anything at all about it the week before, or which cabinet our glasses are in, I became alarmed. I started researching - I was a researcher in my career so it came naturally. Radius Health has been very cunning about their clinical trials. For instance, they have steadfastly avoided trials that included people on drugs known to cause osteoporosis, even though those people would be likely to use Tymlos. This way, there is no information about using Tymlos with those drugs - though there are interactions, and even adverse effects. So I stopped looking at Tymlos directly and started looking into the mechanism of action (how it works) and its effects. Sure enough I discovered that there is a definitive link between the stimulation and/or elevation of parathyroid hormone (PTH) and cognitive decline, memory loss, and even dementia. I said "stimulation and/or elevation" because PTH levels can still be within normal limits but cause cognitive decline merely by stimulating it. PTH crosses the blood-brain barrier and its action in the brain is not fully known, with the exception of the link with cognitive decline and dementia. There is so much drug companies don't know, but they are so very willing to risk lives. It may help to know that prior to retirement I was a clinician who also taught doctoral neurobiology and psychopharmacology. This is not new to me, but continues to disturb me and now it has caused problems in my own life I'm not yet sure I will come back from. As I said, my case MAY be unusual. Or it may not be but we won't know for a while IF reports are made public. Stay safe and I wish you only success!