 | More on Top Docs, and How to Deal with Doctors Dateline: 4/19/98 |
| "Do not stay in treatment with doctors
who make you feel you cannot get better. That kind of negative suggestion can have disastrous
effects on
your health." Dr. Andrew Weil, Author of "Spontaneous Healing," and "Eight Weeks to Optimum Health"
"When I'm teaching medical students I encourage them to say, "I don't
know," when they don't know. I think that's definitely a sign of a good
doctor - and shows an openness to new ideas and a willingness to try out
new concepts." |
In last week's article, I shared my thoughts on
what characteristics make a doctor a Top Doc. A number of folks also shared their thoughts via
the bulletin board, and it seemed
appropriate to summarize their responses as well.
Roxanne wrote:
In my opinion, as Roxanne wrote, honesty is very important in a doctor. Even if the truth is that
the doctor doesn't know, this is much preferable to blanket pronouncements or plain ignorance.
A doctor's fear of saying "I don't know," gets us patients into trouble. I've written before about
my experience with an arrogant doctor (giving a
second opinion) who told me no way no how could my hair loss in any way have to do with
my having just started to take Synthroid after two years on Thyrolar. I was absolutely devastated,
after 3 months of losing my hair in what seemed like fistfuls. Two days later, I found the
Synthroid product insert on the net stating that hair loss WAS a side effect for some people. I
changed back to Thyrolar, hair stopped falling out -- end of story. Except that that same doctor is
still uninformed about easily known side effects of the third most commonly prescribed drug in
America.
Syl had the following to say about top docs:
Syl makes a good point. It IS a wish list. But I believe in setting goals, and if you don't aspire to
what you want, you'll never get it! I don't have a great endo, but she's not bad either. But I keep
looking for the best person for me!
Many of you who receive my thyroid
disease news report read about my latest trip to the endocrinologist, but I"ll go ahead and
repeat it here.
And that concludes my adventure with the endo for this year. And remember, folks, this is a
GOOD one. Not just a number reader. But she does keep my TSH between 1 and 2, and I did
have a healthy baby.
Please understand that, for the most part, endocrinology is NOT a specialty that appeals to the
touchy-feebly, empathetic, "I want to help people" types. If you want that kind of doctor, you're
probably going to need to go to an osteopathic physician (a D.O.) or a holistic MD or a
naturopathic MD. Most of us are not going to find an endo who really listens, sympathizes, and
really tries to help us figure out how to feel better, not just get into "normal" range. . I suspect
that there's one fundamental reason: in reality, they have NO IDEA what else to do for us
EXCEPT prescribe thyroid hormone replacement to medicate us into TSH normal range, tell us
to exercise more, eat less, take an anti-depressant, and stop bothering them.
So, everyone, for the most part, it's pretty clear that it's in our hands. We need to ask questions,
we need to figure out ways to see if someone will actually conduct the kind of research we need
in order to feel well, and we need to help others understand about thyroid disease. And we need
to keep fighting for information, decent treatment, respect. Basically, we all need to keep
STICKING OUT OUR NECKS!" (Excerpted from "Sticking Out Our Necks: The Thyroid
Disease News Report," copyright 1998 Mary Shomon)
These are excellent ideas by Sig226. What's being described here really is a holistic approach, a
doctor that treats the cause and not just the symptoms. Many of us are looking for this type of
doctor with our thyroid disease, and it's difficult, because it's almost impossible for western,
conventional medicine to "treat" autoimmune disease, the root cause of Hashimotos and Graves'
disease. There are no real "treatments" to address the root cause of autoimmunity. So we're often
stuck with doctors who are putting glorified bandaids (thyroid hormone) on our problem, because
they don't know what else to do. But more and more doctors are looking at the overall immune
system's role in treating thyroid diseases like autoimmune thyroid disease, and we can only look
forward to better treatment and ideas in the years to come. (But of course, we want them
now!)
Dealing with Doctors and Hospitals Comment on what you've read here, and share
questions, experiences and information with me and other readers and site visitors at the Thyroid Disease Bulletin
Board.
"In addition to what Mary has posted in her article, my top doc (and he truly is) is
honest about the benefits and risks of any treatment. He has never made a false promise that a
certain treatment will be the "cure-all" to my thyroid problems. He has been nothing but open
and honest with me. I consider myself very lucky."
"I believe in Santa Claus, too. I'm really not making fun of you, Mary. I think your
wish list is great, and maybe I'm really undemanding, but I think we all think we're pretty lucky if
we
find a doctor who does half the things on your top doc list. Maybe if we are all more
demanding, we will force the doctors to do the things we not only want, but really need!"
Well, it's that time of year folks, when I made my annual visit to the endocrinologist. Hmmmm.
And believe me, compared to many I hear about, I actually have a pretty decent endo, who
believes that you should get TSH to a level where the patient feels as well as possible. First, I
wait a half hour after the appointed time. Then, I'm sitting in there, and she takes an emergency
call and spends at least ten minutes talking while I sit there. Talks to me for five minutes. But I
figured I have my big chance to pick her brain for a moment, so I asked her, specifically: Is there
any literature to back up your information that most women with thyroid disease don't feel well
and have a harder time getting pregnant or maintaining pregnancy unless TSH is between 1 and
2? She said that there haven't been any studies, and that this is anecdotal, based on 15 years of
treating women with thyroid disease. As far as she could tell, there won't be any studies like this,
because she said it's just not "sexy" enough for the research money because it's about women, and
thyroid disease, which -- because it doesn't usually kill you -- is pretty much ignored. When I told
her about my website and newsletter (she didn't know about it before), she seemed pretty
disinterested, except when I mentioned that passing on her information to me about pregnancy
had helped many people. I've had a number of emails from women who've become pregnant after
their endos raised their dosage slightly and TSH dropped to the 1-2 level. That seemed to please
her ego! She decided I was slightly hyper based on my pulse, then headed off to let the nurse take
my blood. Said I'd get the results in three days. I called for nearly two weeks without a callback,
before she finally called back, and I was out that day. Called her back, left a message, etc. etc.
She finally called back days later and said, "DIDN'T YOU GET MY CALLS?" "Yes, and I
RETURNED THEM!" I answered. Hamm. She said I was slightly hyper, .05 TSH, so I'm cutting
my dose slightly.
At the bulletin board, Sig226 had these important thoughts to add:"I think a Top Doc treats you as a whole person and not some isolated body part
(oh yeah,
the thyroid...). I'm not sure I can express this well, however, I want a Doc who sees me as an
integrated system - one who knows that if one part or system fails then it can affect how the
whole body functions. For example: If I have a thyroid disease that has 20 different
symptoms I don't want each symptom treated with a drug. I want the root cause of the
ailment treated. A top Doc is not only willing to answer questions, but encourages them as
well. A top Doc meets with you and discusses your problem first while you still have your
clothes on! Then a physical exam is conducted if needed. Then the top Doc discusses findings,
treatment, etc. after you have gotten dressed again.Conducting an entire patient interview while
the patient is unclothed is too intimidating and not conducive to patient
participation."
Looking for Your Own Top Doc?
If you're looking for a Top Doc, you can check back
issues of my news report for "Top Doc" listings. There may have been some Top Docs listed
for your area. You can also post your request at my Bulletin Boards. You can also look for your own Top Doc using
some of the referral options outlined in my article Finding the Best Doctor Who's Right for YOU! -- Referral Sources.
This article includes a comprehensive list of resources for referrals to conventional
endocrinologists, osteopaths, holistic doctors, naturopaths, and more! Also, when you're looking
for a good thyroid surgeon or thyroid cancer specialist, you might want to consider the advice
offered me by a reputable thyroid cancer doctor. He suggested going to an academic medical
center. As he said, "This is not to say
that there are no good physicians outside academic medical centers or that all physicians
in academic medical centers are great, but that the likelihood of getting specialized care
from someone who is competent is much better if you go to an academic medical center.
If you live a long distance away, consider making a trip anyway for at least an initial
consultation. Many physicians at academic medical centers that serve large rural areas are used
to dealing with patients who have to drive long distances and will work with local practitioners
to minimize the number of long trips."Some Sites to Visit
For a few good sites to visit on doctors and how to deal with them, see the following:
Some good tips on comparison shopping for doctors.
Dealing with Doctors When You Have Chronic Fatigue Syndrome
Even though thyroid is not chronic fatigue syndrome, the doctor's attitudes can be similar, and
the complaints are often the same. These are EXCELLENT tips by a nurse that can help in
getting the most out of your doctor.
"Chapter 5 / Your Illness and Your Doctor" of Be Sick Well - A
Healthy Approach to Chronic Illness by Jeff Kane, M.D.
This is a good online resource, and the chapter features the following:
If you want to drop me a line,
email me at thyroid.guide@about.com!
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