Well said, Stella. I so admire the work you do for us here on the forum. It's hard to keep a generous heart sometimes and it's been amazing to see you pick up the reins here the way you have. Having been the successful plaintiff in several lawsuits ( car, mold ) I know how much legal action ***** the life out of your life. Even when you win a lawsuit, in a way, you don't really win.
I do wish that there was some united effort that could be made, not just me trying to persuade my individual doctors that nobody knows my body better than me, that I don't in fact have a mental disorder but rather that I'm intelligent enough to read current medical journals, including European ones, that they may have missed due to lack of time (to be tactful) , but most importantly, that there is such a huge body of anecdotal evidence against diagnosing by TSH alone that it would seem it can no longer be ignored.
Sometimes I imagine us marching on Washington, surrounding the FDA and the NIH, thousands strong, chanting....."Thyroid Patients Unite ! You Have Nothing To Lose But Your Chains !"
Until then, I'll just keep a postin' and a answerin' here on the forum. Winkin' at ya, Stella. And you better smile on this post...it's what gets us through it !
Thanks again.
I don't mean to smile on this post but you almost have to.
As a patient myself - the anger of how I lost so much with this certainly drove me insane when I got well. I was at death's door for years and then when I was blessed to basically pick the bulls horns up and found answers - SURE - I wanted to sue the heck out of the ones who nearly killed me if not make them pay and feel as I did and keep them sick. A demented thought goes through someone who has to struggle as so many of us do and then when we find something out that helps - anger is a mild term for how unfair we felt we were treated.
As an advocant for "us" - I turned that anger into a mission. Sometimes I feel we are making milestones and sometimes I feel we are hitting brick walls - but keep pushing for better care on the positive is where I go.
The energy I would waste alone sueing one doctor ( and probably losing) wouldn't change a thing except make me even more broke - but developing a mission to abolish horrible thyroid care is where I need to be - globally with others doing the same thing.
Oh, thanks for responding. I understand your reasoning, but in the US, sometimes a class action suit is the only thing that gets any results. I have been "educating" my doctors for 10 years now while I've become progressively more ill. Lots of tests, lots of insurance payments, lots of copays, lots of visits to psychiatrists for depression that ceased w/ T3...but physically no improvement, in fact getting worse. I can't imagine how many gallons of blood have been collected !! Doctors are getting paid lots of $$ to file pieces of paper in my medical file without critically considering them to make a diagnosis, and the insurance companies are reaping huge profits for a lot of paper shuffling themselves. I'm not thinking of suing my doctor personally, I like her but the endos are a nightmare. Just wondered what others know or thought.
Tirosint is not on any insurance formulary, especially not any Medicare formulary, which means that one pays full price or a top-tier co-pay. I am currently paying $85 per month for Cytomel on Medicare, when I paid $35 last month under my old health insurance. Go figure.
I sure hope you're riding out the weather extremes in Australia, we here in US worry about the Aussies and keep you in the Light. Cheers.
Here in Australia unless you drop dead or bits fall off you, we cannot sue for not being diagnosed with a thyroid issue, or other issues for that matter.
I think it would be better to form a group to educate rather than punish doctor's who may genuinely not had enough information to make an informed decision. The US health system is already expensive enough, and I know for a fact many doctors there have to pay quite high insurance for in-case of being sued.
The newest medication on the market is Tirosent, it has no fillers at all. It seems to be the best thing since sliced bread for thyroid patients. Perhaps the wheels of progress medically are turning slowly.