Monday, August 11, 2008

Bridging the gap: Dr Rob presents the other side

Dr. Rob continues with his "Getting Along" series: Getting along part 2: Patient rules | Musings of a Distractible Mind.

I have responded below quoting his rules as headings.

Rule 1: Your doctor can’t do it alone

Dr. Rob, I wish all doctors were like you. I recently wrote a post - A never-ending story.... - about a trip to my PCP's urgent care (same office, same doctors, but weekend hours) with a worsening sinus infection.

I was honest with that doctor. I was honest a) because it benefited me health-wise and b) because he hadn't read the information in my (electronic) file and I was trying to enlighten him. I was respectful, but firm. Instead of working together, he made uninformed accusations, tried to prescribe something that even went against his own diagnosis plus was very detrimental to my health due to my battle with Cushing's. I won't go into details here since it's already linked above.

You said "If you disagree with what is recommended, don’t pretend you agree and then ignore your doctor’s advice. I would much rather have a patient tell me “I am not going to take that medication” than have them accept the prescription and not get it filled. Your doctor prescribes them for you, not for him/herself."

I followed that advice and ended up suffering even more until I could see my PCP on Monday. My only other option was going to the ER which would have resulted in a huge co-pay plus other charges only partly covered by insurance. I had just wasted a co-pay at that visit. My insurance was billed, too, for that visit plus the one I had with my PCP on Monday. No wonder insurance rates are high.

I did write a letter to the head of that medical group and it was addressed. The letter is in the post linked above.

Rule 2: Be Honest

I had to admit, I howled on this one. Why? Because I don't have a problem with "honest". However, Dr. Rob, many doctors have had a problem with my honesty. Case-in-point (and you'll see why I'm laughing):

When I was first seeking an answer to all my multitude of symptoms which lead to Cushing's, I didn't know what it was that was wrong, but I knew SOMETHING was wrong. My (then new) PCP had recommended I see a local endocrinologist. I had a choice of 2 in my area at the time. There are now three in this practice. I let my PCP choose because I had no clue (and eventually realized it really didn't matter...neither did they).

One of my symptoms was galactorrhea and since I was in my 40's with two grown children, obviously not normal. After talking to me and questioning me, "Dr. Endo" asked me to put on a gown and wait in the examining room for him. He was very proper with a nurse in tow. (He was also elderly, and since I'm now 50, that means much older than me.) He proceeded to check my left breast and when I expressed milk, he jumped back in utter horror, disgust all over his face, and said something to the effect of "Oh, my....". He walked out. He just walked out. I was torn between being mortified and howling in laughter. He really was comical but yet, he really made me feel embarrassed. The nurse looked at me and said, "He is an elderly gentleman."

No comment is necessary here. I'm pretty sure you and I are on the same wavelength.

Afterwards he asked me in his office what I thought he could do for me. [Insert explicative], that's why I was there! I didn't know! My honest retort, "Obviously nothing!" Needless to say, I didn't go back. Nor, thankfully, did my PCP think I should. (And Dr. Endo was probably glad, too!)

The problem is, how honest do you want me? And how do I know what to tell? Do you want my life story? How do I know that striae and supraclavicular fat pads are indicative of an endocrine disorder? How do I know the pains I have and the feminine problems, and those awfully embarrassing "boils" in embarrassing spots are really due to high cortisol? Heck, how do I even know that there is such a thing as high cortisol? I didn't know that was pertinent. How am I supposed to know? (Yep, Dr. Google and Ms. Cyberchondriac saved the day eventually.)

I say again, how honest do you want me?

Rule 3: I don’t play favorites

Fine by me! I don't either. I'm glad you don't because it means I'm not pushed out of my turn by the favorite. And honestly, I haven't seen that happening with my doctors, and if it did, I was blissfully ignorant of it.

Rule 4: Don’t mess with the staff

I think you covered this well, too. If I have problems with "the staff", I tell my PCP. I don't think they have any problems with me. Well, I.... don't.... think

Rule 5: If you don’t trust, leave

"Trust is the commodity we sell. People go to the doctor because doctors have unique knowledge and experience. The stakes are as high as they can get, so why would you go to someone you don’t trust? "

Ok...I had to sit back and think this one through. There are very few people I totally trust. And that has to be earned. And still....100% trust? It's just not that black-and-white. Take my auto mechanic again. I still go to him. It's not so much that I trust or distrust, but I know him and know what to expect. Thus, I can work with what I know.

How long should a patient work with a doctor before determining trust? I can think of scenarios where one visit would do the trick for the distrust part. But trust? That takes time. And is that what you are really selling? It may be "a" commodity, but "the" commodity? I'm not sure I buy that.

My problem with it? I see a doctor to get well or to prevent getting ill. That's what I'm paying for. I suppose I only return if I trust that doctor unless my alternatives are not very good. But that's not really the reason I keep returning to my PCP. I return to her because she trusts me. Frankly, when she suggested Florinef to treat my Cushing's, I probably should have left her then. Instead I gave her material to read on Cushing's, and she was honest enough to be embarrassed.

So, in a sense I guess it is trust. I trust her enough to do the right thing even if she unintentionally goofs up. Do I trust her implicitly? No way. Do you trust your doctor implicitly? It's my life and I'm gonna stay a bit apprehensive when anyone else is in charge of it. I have no other choice, though. I'm not allowed to treat myself. And I don't trust myself enough to do that, either. I know my limitations.

Rule 6: No news might be bad news

Ever since my PCP mistakenly told me my lab results were normal for late-night serum cortisol levels, I have asked for a copy of all my labs. Sure, the lab used daytime ranges because THEY didn't know what late-night ranges were. (Zero...or close to it.) Mine was 9.6 ug/dL the first time. I went months without knowing I already had high test results. When I got a copy of my records to take to my present endocrinologist, I found found my lab results. And with the help of a friend, we soon figured out what had happened. Needless to say, my PCP was not aware. I realize now since they were "normal", she probably never saw them.

Moral of this story: Don't trust the lab results/ranges, either.
Dr. Rob, I really, really appreciate your response with these posts. You have been very gracious and caring through all this, and it has helped me tremendously to see your take (which I hope is the same as many physicians' takes) on the doctor/patient relationship. Honestly, this is cathartic for me, and I hope you don't mind. I hope my responses are not seen as antagonistic because they truly are not meant that way.

It all boils down to communication. And that, sadly, takes more time than most of us have.

BTW, I never forget to thank all those who help me, even the @#$% doctor who walked out on me. I didn't get "most courteous" in high school for nuttin'!!



  1. I don't disagree with most of what you have said. Here are my thoughts on your thoughts:
    - Compliance is always a two-way street. Doctors are responsible for only giving medications that will do good and educating the patient as to why they do good. If I give a prescription that the patient does not tolerate or decides to stop, I simply ask that they tell me that they did (see the honesty section for more on this).
    - As far as honesty goes, certainly honesty about symptoms is the main point. Honesty on opinions are not as necessary (as is the case in any relationship). People cover-up symptoms or downplay them. That is my point. Your interpretation of those symptoms is a whole other matter. Yes, doctors fail at this, but those who do might not be trustworthy (see section on trust).
    - Trusting your doctor: how much? Good question. You should NEVER trust them without question. If you find you doubt their motives or integrity, leave immediately. If you are on the fence, then ask questions until you can get off of the fence. I know there is gray here, but I also think many patients stay far too long with doctors because they feel bad about changing. That's crazy. You are paying, so you should be able to change.

  2. Being honest with you is probably much easier than being honest with some other doctors. I had to develop cajones (figuratively, of course) in order to be able to be honest with some doctors. I didn't want to be berated or worse.

    I'm sure some folks do cover up symptoms. However, sometimes they may not realize it is a symptom. That was my point above. I had no clue I was "covering up symptoms" until I met my present endocrinologist. I certainly didn't do it intentionally.



101 (6) 2009 (1) ACTH (3) addison's (2) adenoma (10) adrenal (6) adrenal adenomas (2) adrenal insufficiency (8) adrenalectomy (1) androgens (2) anger (1) animals (1) antibiotic (1) apathy (1) apnea (1) arginine (1) attitude (2) awareness (19) bacteria (1) bariatric (4) bilateral adrenalectomy; zebra (2) BLA (6) blog carnival (1) blogging (1) blogtalkradio (1) blood work (1) buffalo hump (1) cancer (1) carcinoma (1) cardiovascular (2) change (1) chronic (1) chronic illness (8) circadian (2) classical (1) cold (2) conn's (1) cortef (1) corticosteriod (2) cortisol (7) CSF (1) CT scan (1) cure (1) cushing (1) cushing's (77) cyberchondriac (2) cyclic (2) data (1) database (1) death (4) depression (1) dexamethasone (1) diabetes (3) diabetes insipidus (1) diagnose (1) diagnosis (10) disease (1) diurnal (2) doctor (3) doctor blogs (21) doctor friedman (1) doctors (2) doctors google (1) drugs (2) dynamic MRI (2) ectopic (2) education (1) EHR (1) EMR (1) endocrine (5) endocrinology (1) epatients (5) epigenetics (4) epinephrine (1) episodic (2) estrogen (1) familial (2) fat (1) fatigue (1) ferritin (2) florid (1) flu (1) fluid control (1) food (1) gadolinium (2) galactorrhea (1) gamma knife (3) genetics (3) genotropin (1) gland (1) google (1) google health (1) googling (2) grand rounds (4) growth hormone (13) guest post (1) headache (2) health care system (14) health records (4) healthcare (1) HIPAA (1) hirsutism (1) holiday (4) home (1) hoofbeats (1) hormone (1) hormones (5) hormones bioidentical (1) HRT (1) hurt (1) hypercortisolism (1) hyperplasia (1) hypertension (1) hyperthyroidism (2) hypoparathyroidism (1) hypopitiutarism (4) hypothalamus (2) hypothyroidism (7) iatrogenic (1) ice crunching (1) illness (3) imaging (4) immune (1) immunocompromised (1) infection (2) information (2) insurance (2) internet (1) invisible illness (1) iron (1) journey (2) ketoconazole (3) kidney (1) labs (2) lapband (1) laproscopic (1) levaquin (2) libido (1) macroadenoma (2) medical records (2) medical school (1) men (1) metabolic syndrome (3) metamorphosis (1) microadenoma (1) microscopy (1) mild (1) morbidity (2) mortality (1) MRI (2) MRSA (1) mucinex (1) neuroblastoma (1) news (10) night owl (1) nodules (1) norepinephrine (1) obesity (13) obesity hunger willpower (2) Occam's Blade (1) OFM (1) osteoporosis (2) pain (4) parathyroid (3) participatory medicine (2) pasireotide (1) patient rights (2) patients (7) patientsfirst (1) PCOS (6) PCP (1) pediatric (2) peer reviewed (1) percocet (1) personal (1) PET (1) phenotype (1) pheochromoctyoma (1) pheochromocytoma (1) PHR (3) pictures (1) pituitary (24) pituitary surgery (7) pituitary tumor adenoma research acromegaly (1) poll (1) polycystic (2) prolactinoma (1) protein (1) psychological (1) radiation (1) radio; cushing's (2) rant (1) recurrence (1) reform (2) relationships (1) remission (2) research (26) respect (1) retrospective (4) rocephin (1) safari (1) salivary (2) sarcoidosis (1) science (1) serum cortisol (1) shame (1) sick (1) sinus (1) sinus infection (2) sinusitis (1) sleep (2) soda (1) spoon theory (1) steriod (1) steroids (1) subclinical (2) surgery (11) surgeXperiences (2) survival (1) symptom (1) technology (1) temozolomide (1) testing (6) testosterone (2) thyroid (6) to google (1) top10 (1) transsphenoidal endoscopic (1) travel (2) treatment (3) trust (1) tumor (12) twitter (5) urinary free cortisol (2) urinary infection (2) UTI (1) veteran (1) video (3) Vitamin D (6) weakness (1) zebra (5) zippy (1)

Email me....

survivethejourney at gmail dot com

Subscribe via email

Enter your email address:

Delivered by FeedBurner