This is my story. It is slightly long and will appear off-topic - it is not.
Had trouble concentrating, dealing with anger, insomnia, anxiety, panic attacks, nausea, stated putting on weight 20 lbs all together. Previously, I had been healthy, average to less than average weight. Never had surgery beyond wisdom tooth and D & C years ago. Had suffered from PTSD 5 years ago. Currently working in a very high stress job 10 -15 hours a day. I begged my doctors to test my thyroid. Blood test was done and I was told the numbers were fine. He says it’s middle age and menopause (hello, I am on the pill but whatever)
It’s February and I am sitting in stylist’s chair getting hair done. I look into the mirror and have a sudden sense of dread that I am not okay. I even ask my stylist if I look okay to him. Poor thing is only 23 and he starts worrying about a heart attack because he read that women have different symptoms. I am most certainly not having a heart attack but I don’t look or feel right.
At work one week later when hit with a sudden horrific pain in lower left flank. I head off to meet my husband for dinner and never make it beyond 5 miles because the pain is too severe.
Swoop into urgent care clinic - nurse and doctor are sure it is a kidney stone. They send me at 8:00 p.m. to get a CT scan to check for size. Technician looks at me funny and says that my doctor will call....okay. I head over to the pharmacy to fill the script for the pain killers when the phone rings while standing in line. Doc calls and says they didn't find a stone. I start arguing that the pain is real and still terrible despite the shot they gave me. He then tells me that they found 15 lesions on my spine and pelvis and is indicative of metastasized bone cancer.
I drive home and call my OB/GYN - doc on call is one of the original partners - he calls me back and says they will immediately want to check for lung, colon, ovarian and breast.
On the next day ( a Friday, of course!), one of the staff ob/gyns walks in and says, 'Why are you here? You need an oncologist. We can't help you!" My DH gets very, very upset and I end up at our state's finest hospital. Admitted through emergency with potentially a broken spine. They do an MRI and send me home.
Next week, my GP comes back from vacation - he laughs all of it off - says it's going to be nothing but orders chest x-ray and ultrasound of thyroid.
In the meantime - MY ob/gyn that is still on vacation calls after his nurse alerts him to what happened and says he wants the lesions biopsied NOW. GP is very angry and suggest OB can fly home and stick the needle in my back himself.
So, I am getting the ultrasound of the thyroid and I ask to speak to the radiologist. There are nodules but that is supposedly common for my age (46). He asked if there are any other findings. I tell him about the lesions on my spine and pelvis from the CT scan and he says I will need to get a biopsy. GP is pissed that I spoke to the radiologist myself. He thinks it is a waste of time. Four days later I have the biopsy of the thyroid and the results are benign.
My OB/GYN returns from vacation and calls me in for an exam and then asks me to come to his business office. (Haven’t been in that office since miscarriage in the 90’s). He starts to give me the speech about thyroid tests and science not up to date and is basically prepping me that my numbers aren’t going to be quite where they should be for treatment but that he is going to treat anyway with my consent because women get jerked around with this stuff all of the time. LOVE HIM. Except, the lab faxes over .52 POINT 52 not the 6-8 he expected – NOT EVEN CLOSE. So he sends me to an MD that specializes in diagnostic work.
She does a two hour intake and then wheels her chair to face me nose to nose and says that I really need to leave my job if I want to survive. She suggests a month long retreat – not quite to a psych hospital but sort of a meditative spa….just where are these places and who can afford them, I do not know...but I digress.
Anywho, during this time, I am getting more and more frantic, docs, counselors want me to go on SSRI (NFW!). I see a neuromuscular oncologist who says the lesions are just hemangiomas and boney islands. OKAY…and the diagnostician is concerned about one of my thyroid test results – it should be no higher than 55 but mine is 928….she never gets back to me. I am having some very dark thoughts and panic attacks and nausea, etc….
I see GP in August . Beg and cry that something is wrong. He says I should probably see an endocrinologist and gives me a name. Endo isn’t taking new patients. Oh and my numbers are going the right way – it’s now in the 700’s down from the 900s.
Get appointment in September thanks to our department’s very persistent secretary. Endocrinologist walks in and says, “Do you know how big that thing is? It’s huge!” I do not have any clue. He explains that one of the nodules – there are 6 – is the size of a baseball and that he thinks it needs to come out particularly because the biopsy might not have been complete on something that big. Please believe me that nobody on the street could see this thing- I am blessed with a very thin neck. It did look a little puffy – but I chalked it up to middle age and other nonsense being pushed my way. I agree that it should come out and begin search for surgeon. Endocrinologist calls hospital lab because some pages are missing in the pathology report. They think he wants them to retest the sample and OOPS – they made a mistake – IT IS MALIGNANT. Just like that. GP calls me in and says how sorry he is.
I was scheduled for surgery on October 10th at Brigham and Women’s – see you later Rhode Island!
Just for fun after reading some of the other posts – I had a root canal, endoscopy (1st), colonoscopy (1st) , and total thyroidectomy in 8 days.
Four of the six nodules were malignant. Papillary follicular variant.
I had my Thyrogen shots on Monday and Tuesday. Swallowed the RAI tracer dose yesterday and going for blood work today with a scan set for tomorrow. AND because when it rains…in 2 weeks, I will be back at Brigham to have my gall bladder removed. Giant stone. Nausea was NOT in my head.
It is expected that I will have the full RAI in January.
That’s my story. Thank you to whoever reads it. It’s been a long fight. BUT I WAS AND AM NOT CRAZY!
Hang in there Tanzanite. Unfortunately sometimes the levels do not come up.
do you feel better though or always feel horrid were you feeling bad when you came home from hospital medicine making me breathless said this happens .
