Then, my hair started falling out, my periods went from every 28 days to every 24 days and became twice as heavy, I got an ovarian cyst, I gained weight. And yes, my TSH was in the normal range. She suggested I visit another doctor to get a second opinion. So my husband called his internist and asked, "who is the best person you know to deal with thyroid disease."
"Me, of course," said the internist. Doctors are so modest!
"But up front, I want you to know that my wife is very informed about things, she reads a great deal about thyroid disease, and does not want to be told that this is in her head, Doctor," my husband said.
"Aha," he said. "She's a petits papiers woman," said the Doctor.
My husband inquired as to what the doctor meant by this. The doctor explained that women who come in with papers, notes, etc. to show to the doctor are often referred in a derogatory way as "petits papiers" (little papers, in French) women. He said most doctors did not like "petits papiers" women, as we're too "high maintenance," but he would agree to see me anyway.
A "Petits Papiers" woman is someone who comes to a doctor's appointment, armed with notes and "little papers" (petits papiers in French). Apparently, many doctors don't like us much! So armed with a folder of notes and petite papiers about my problems, my thyroid test results and high hopes for some solutions, I went to see this doctor. I said I was most concerned with my hair loss, and felt it might have to do with the Synthroid. The doctor said he'd never heard of Synthroid ever causing hair loss. "Just not possible," he said.
He asked if there was "stress" in my life, and suggested that this was the likely reason that I was going through bottles of Drano unclogging tubs and sinks from my constant hair loss. He also said that all my symptoms weren't related to the thyroid, as I was "in range."
"In fact," he announced. "Someone with a TSH of between 5.5 and 10 wouldn't even KNOW they were hypothyroid except by having a blood test. You'd never have symptoms with that minor a problem."
Okay, thank you doctor for your sympathetic response. So I sat in the car for twenty minutes, crying my eyes out before I could drive home. Then I did a bit more surfing, and, hmmm, isn't it interesting. I happened up the DrugInfonet web site, which features pharmaceutical product literature. Here, direct from the Synthroid drug insert:
"Partial hair loss may occur during the initial months of therapy, but is generally transient. The incidence of continued hair loss is unknown."
Generally transient. That means that for some, perhaps it's not transient? And incidence of continued hair loss is unknown. Doesn't mean it's non-existent. Just "unknown?" And Doctor #2 swore up and down that it could never cause my hair to fall out. Despite a strong desire to Petits Papiers him with a copy of this information, I didn't. I figured that as a "thyroid expert," he'd just not had a chance to read it yet as he was so busy telling people that stress makes their hair fall out.
I did send this information on to Doctor #1 and she decided that going back to Thyrolar was better for me. In weeks, the symptoms subsided, and my hairloss slowed dramatically. Situation resolved...for now.
But the bigger situation is how we all can deal with our doctors better. My regular doctor NEVER has a problem with me and my notes, research and information gathering. She says I keep her on her toes!
If your doctor doesn't appreciate your empowerment, then my suggestion? Save the papers for a new thyroid doctor who welcomes an informed patient!
