Thyroid Patients: What is the MOST Infuriating Thing a Doctor Has Said to You?
Thursday December 4, 2008
A while back, I asked you to share your stories about the most infuriating thing a doctor has said to you. I started out by sharing my own saga, which involves Synthroid, hair falling out so much that I wanted to buy stock in Drano, and a doctor who thought that people who research health issues are pains in the neck, and referred to us as "Petit Papier" women (the women with the little papers!) Big sigh!! Needless to say, I'm not alone, and my post launched a very active discussion on my forums. You can view all the responses -- or share your own story -- online at my thyroid forum now.
But here are a few memorable highlights!! See if you recognize things YOUR doctor may have said to YOU along the way!
Jeanne02 had an interesting exchange with her doctor, who started it off by announcing:
"THIS DISEASE HAS NOTHING TO DO WITH THE METABOLISM!" "Nothing," I replied? He replied..."NO NOTHING!" Mary, he treats diabetes, so he probably thinks that has nothing to do with the pancreas either! (Read Jeanne02's entire post.)
' nette has this to share...
Five years before I was diagnosed (but very symptomatic), a holistic doc lightly pinched the skin on the back of my hand and commented it was awfully thin for my age, so I must be malnourished. A few years later, my dog's vet did the same skin pinching on my dog who was rapidly gaining weight and losing fur. The vet said "hmmm, thin skin is pretty common with hypo, let's test her". The dog was diagnosed hypo. The human was diagnosed six months later. Therefore, the doc's comment didn't infuriate me at the time, but in retrospect I think he needs to go to vet school!
Sandygirl2 went through something many of us have experienced.
"When I first went to an endo that my OBGYN referred me to, I told him my symptoms which included weight problems. He asks if I exercise. When I told him I walked everyday, he asked "to and from the refrigerator?" Great bedside manner, don't you think?Here's Leslie, whose horrible menstrual cramps were so bad that she describes them as "some strange monthly endurance tests." Says Leslie:
This doctor looked at me, told me she would not prescribe any pain medicine for cramps. She went on to tell me that lots of women have cramps, so it's normal. The pain you feel is ALL IN YOUR HEAD and if you wanted to, you could control the pain with a positive attitude. Right then and there... a future patient advocate was born. I asked, if my cramps are all in my head, why do I have pain right here (pointing to my uterus) and bleed so heavily? She repeated, lots of women have endured pain worse than yours for millions of years. Gee, that's reassuring...So when someone tells me that I've brought something on myself, psychologically, I look at all points of view: am I really crazy or are these childbirth-like cramps as bad as I think they are? (Read All of Leslie's story)
dorothy13 has a list of comments she's heard from doctors.
"T3 is the equivalent to cocaine and I'm not giving you that.""You'll have the thyroid lobectomy on Friday and be able to go to work on Monday."
"Armour thyroid is made from cows."
The guidelines about the TSH being below 3 from the AACE are "propoganda".
(Read more of the comments from dorothy13's endocrinologist)
Here's alviarin's story:
"At my very first appointment with an endocrinoligist, I told her about my strong family history of thyroid disease, and listed my current symptoms, and my concern that I might have a thyroid problem. Her response: "You don't have a thyroid problem. You are just depressed because you moved recently. " What? Since when does a move equal depression? Depression wasn't even on my list of complaints! She never bothered to physically manipulate my thyroid gland, and didn't want to order any thyroid bloodwork. What a quack."
After Dottye made an appointment and agreed to pay $400 up front for an out of network "Hashimoto's expert," she had this experience:
"When I explained why I had come to see him, to optimize my treatment and reduce symptoms, he said: 'I don't believe in Hashimoto's.' I asked him why there would be an antibody test for a condition that doesn't exist. He had no answer...A very few minutes into the conversation he said: "You know, I'm spending way too much time with you for an HMO patient." I reminded him that I was paying $400 cash, out of pocket/out of network but his attitude did not improve..." (Read Dottye's full post.)
Amie has a unique perspective.
"I am a triathlete and marathoner and went to a doctor because I had trouble losing and maintaining my weight. I was also a personal trainer and a lifestyle consultant, and kept detailed logs about what I ate on a computer. I had several doctors tell me to eat less/or I wasn't watching what I ate. Yeah, right. One of the dumbest was the doctor who said maybe I should exercise more. I told him I was cycling around 100 miles a week, swimming several thousand meters a week, and running 30-40 miles a week, sometimes weight training and teaching aerobics. I said, 'Why don't YOU try to exercise more than I do.'"
Emory's doctor told her that he had a greater chance of having thyroid cancer then she did and, her family Dr wasted his time sending her to him.
"I had a multinodular goiter with very prominant nodule that my GP was concerned with so he sent me to this idiot Endo who order no labs nothing and laughed .I never returned to any Dr for my thyroid for a few years, then after 6 years I found a enlarged lymph node in my neck which was watched and grew for over 2 years, finally I was forced to get a new doctor due to insurance change. I eventually ended up with surgery to remove the lymph node, which showed that I had metastatic Thyroid cancer which involved my jugular. I had 3 more surgeries and 3 large doses of RAI...The Endo still does not have thyroid cancer that I know. Nor does he have many patients these days."
Shaylyn's doctor refuses to listen to her symptoms.
"...according to him my only problem is that I must be depressed. Yeah by the fact I count everything I eat in a journal, about pass out from exahustion by noon, and still need to wear a hair piece! (most the time I am in a ball cap now) He won't even take anything else into consideration but depression. Such as the fact my mother and Aunt both have Lupus; I asked him if this might also be something that needed to be looked into. That perhaps it was another autoimmune disorder causing me to feel so bad, or perhaps in conjunction with my thyroid. Nope...I am depressed.....glad he knows that. I think the manufacturers of Synthroid put these doctors through brainwashing seminars or something. As I left with my new found diagnosis of depression, he handed me some samples of Synthroid the rep just left for them. Hmmmmm...I thought I smelled food when I walked in....maybe the reps put something in it that turns doctors into mindless idiots." (Read Shaylyn's full message)
And finally, Maccy's heard perhaps one of the most standard, yet inexplicable, lines.
"Well it goes like, the normal range for TSH is roughly between 3 and 4. We don't usually treat it until it is at 10. Wow, comatose."SHARE YOUR STORY NOW!!
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Comments
In 1979 I sought treatment for classic hyperthyroid symptoms (severe weight loss, 120 heartrate, constant tremors, heat intolerance, obvious ’staring’ eye)and was told I was ‘high-strung’ and given a prescription for Valium (which I did not fill). I insisted on a TSH test, the results from which indicated I was seriously at risk for ‘thyroid storm’. I opted for RAI and was told by the endocrinologist who administered the treatment (a different physician from incompetent doctor #1) that I would begin to experience sypmtoms of hypothroidism within a couple of months. When that occurred, I made an appointment with a different doctor in my health network and explained my thyroid history. I reported classic hypothyroid symptoms at that time (fatigue, loss of appetite, weight gain) and this new doctor told me I was depressed!! Again, I had to insist on a TSH test which did indicate I was due for replacement hormone. For the next 25 years I was on a dose of .15 Synthroid or equivlent generics without any problems. When I began taking replacement hormones at the onset of menopause (which are known to affect the body’s ability to metabolize thyroid hormone), suddenly my TSH tests were showing that I was hyper, even though I felt fine. Since it had been 25 years since I took the RAI, I essentially did not have a thyroid gland at all, so how could I suddenly be producing any? Despite my protestations and complaints of hypothyroid symptoms, all of my subsequent doctors kept reducing my dosage until I was thrown into an almost totally debilitating state of hypothyroidism a little over a year ago (weight gain, total exhaustion, weak and sore muscles, terrible constipation). In addition to these symptoms, I also developed ‘trigger finger’, a painful and annoying tendon problem affecting four of my fingers that has been correlated with hypothyroidism. That condition got so bad I was referred to a hand surgeon from whom I received several cortosteroid injections, but within days of scheduled surgery, I decided to keep trying to resolve my thyroid issues before going under the knife. Meanwhile, my physician at the time told me to eat less and exercise more (even though I told her I did not have enough energy to stay awake, let alone exercise) as well as cut down on salt and drink more water for the pain and stiffness in my hands. Even a referral to an endocrinologist did not result in any change to my medication and all the symptoms persisted. I finally found a physician who was willing to try something different and within about a month after starting on Armour thyroid along with some changes to my menopausal HRT, my hand problem has resolved, eliminating the need for costly hand surgery and recovery. The weight gain that has occurred over the course of several years is more difficult to get rid of, but at least I have stopped gaining. No more fatigue or constipation. I actually feel GREAT most of the time now. Six months ago I felt as if I was at death’s door. Why are some doctors SO resistant to listening to patients’ concerns?
After losing almost half my hair my GP told me that there were no bald patches, probable damage from hair products and to have my hair cut shorter and it would look thicker! That’s professional!
I gained 130 pounds in 3 weeks. My doctor thought I ate myself up to whale size! Then, she told me I did not have Thyroid disease as I was on Levoxyl!!! And that everyone loses hair, etc. I have to continue with her, insurance reasons, but try to stretch it out to 2 years in between. I guess I just suffer from “I want to choke her syndrome” and my thyroid is AOK!
I went to the Dr because I had a bad chest cold, which turned out to be bronchitis. During the consultaion, He asked me if i was able to bend over and touch my toes without bending my knees. i said, “yes” and proceeded to show him that i could. He then said to me, ‘I cant do that, (he is thin), My wife who is chubby like you can do it too but I cannot.” I thought Geez, thanks for the compliment…….Im chubby???????
Over a 5 year period I was tested, as a result of blood tests, semi-annually for thyroid disease, using FNA and was advised everything was normal. After all these tests when I was directed to have another FNA and the results came back, “suspicious for follicular neoplasm” my PCP said and I quote, “You have cancer and you’re healthy!” I had surgery to removed the left lobe of my thyroid-they did a tissue test while on the operating table and came back with normal but went ahead and removed the left lobe. My follow-up visit to the surgeon also resulted in “no cancer”. When I said ‘So I didn’t need the operation’, he walked out of the room.
I went into the hospital weighing 142 pounds on the Atkins diet; came out still on Atkins and after 3 weeks weighed 158 pounds. Today I top the scale at 192 and the DRs don’t have a clue to weight reduction. Certainly explains why the WHO ranked medicine in the USA at 37 just ahead of Slovenia.
I went in to have my thyroid checked( I have Hashimoto’s) and told my doctor about my concern about having gained 80 pounds in 6 months. His response was “you are just fat, get used to it.” Needless to say, I have not been back to him since.
Hm, let’s see. The neurologist who said that she sees people with real illnesses every day and that I just needed to get a grip?
The psychiatrist who was still convinced I was bipolar when an internist found that the real answer is that I have Hashi’s with hyperthyroid flareups? And he wanted to put me on lithium of all things, which kills the thyroid even more…because the psych meds weren’t working, because THAT WASN’T THE PROBLEM…(Read the DSM-IV sometime, you quack)
The endo who said I have Graves when I really have Hashi’s? The same endo who did my FNA biopsy on crutches, ON CRUTCHES, yes, STABBING A NEEDLE INTO MY NECK ON CRUTCHES, and said after poking me 5 times, “hey, grab me the spinal needle!” …At least I had a local anesthetic.
I’m doing pretty well under care of a holistic doc now but I know I need to see a GP and at least get an ultrasound…and I just don’t want to deal with the hassle. I’d almost rather just let undiagnosed problems kill me than deal with the medical system. Whee.
A supposedly enlightened doctor when it comes to hypothyroidism once told me (when I wanted higher dose than where TSH was just zero, due to lots of remaining classical hypo-symptoms) that “thyroid hormone isnt the solution to all problems”. Well, it turned out that for me T3 and Armour was the solution to all my problems, but maybe not for his problems…