Earlier, I posted about taking bad advice from those who claim to be thyroid experts. Wow, do those people have issues! It was an online group I had joined for people who had undergone a thyroidectomy. Basically, I asked a question in hopes of comparing post-thyroidectomy symptoms with others experiences. I didn't get a response answering my question. Instead, I got admonished for having 'let' someone take out my thyroid, and was giving unsolicited medical advice. They were telling me specifically that I "should not even think about RAI", and telling me trade names of medications I should be taking instead. Keep in mind, they didn't even know my specific situation. I let it go at first, but when the information kept coming, I posted that they were offering up medical advice and they were being irresponsible in doing so and that in fact, what they were doing was criminal and dangerous. I added that they shouldn't worry about me trying to cause trouble because I was leaving the group/list and I just wanted them to be careful about how they offer up the advice. I suggested that they say in clearer terms what worked for them, but keep in mind that treatment isn't a one size fits all situation.
My leaving didn't satisfy them. They, one of them apparently being the owner of the group, the other a moderator, decided to look up my personal email address after I had already left and began to email me off the list continuing to feed me advice I didn't ask for. I asked both of them to please stop contacting me and that what they did was wrong and that I do not want any more of their advice. I then blocked them from my email. This didn't stop the owner of the group who then decided to use another email address to get to me. At this point, I responded that this was really unethical and that perhaps she needed to get a life and leave me alone. I also informed her that I was going to have to take further action against her to see that she did.
I filled out a TOS abuse complaint to the internet service. They responded to me and informed me that I needed to contact the group owner. I couldn't believe it. I had already explained to them that it was the group owner and a moderator who had harassed me. Finally, today I got another letter back from the service provider asking me to give specific post numbers, etc. so that they could investigate things further. I don't know if I can retrieve the information or not....but, I'm going to do my best to respond to their request so that maybe these people will be a little better regulated.
I'm all for freedom of speech and for talking about what works and what doesn't and what products you might think are better than the next. But, there is a fine line when it comes to advising others on what they should be doing about their health, when you aren't a practitioner. It pains me to think there are some poor victims out there who will actually buy into everything these self proclaimed experts say and not treat their thyroid cancer. A cancer that is unbelievably curable if treated early. It is beyond criminal.