Readers...
Please note: Low calcium and hyp0parathyroidism is rare, and almost always
happens after a person undergoes thyroid or parathyroid surgery and the
surgeon mistakenly removed all of their parathyroid glands. THE VAST
MAJORITY OF THIS WEB SITE IS DEDICATED TO HYPERPARATHYROIDISM... TOO MUCH
CALCIUM IN THE BLOOD WHICH IS DUE TO OVER ACTIVE PARATHYROID GLANDS... the
OPPOSITE of hyp0parathyroidism. If your calcium is high, then you
have hypERparathyroidism. This page is ok to read... because it shows how
important it is to pick the right surgeon with lots of experience. But if
your calcium is high, then this is NOT the first page you should read...
go the the Home Page and read about hypERparathyroidism.
This
is the SECOND page on hyp0parathyroidism on this web site... You may want to read the
FIRST
PAGE of hypoparathyroidism first, to get a background, and then come back
here. This page is about HYPOPARATHYROIDISM CAUSED BY A SURGEON.
Surgical Hypoparathyroidism
(Hypoparathyroidism following thyroid/parathyroid surgery)
Introduction:
Hypoparathyroidism
is a medical condition is caused by a surgeon removing all four of a
patient’s parathyroid glands. This is a terrible complication of surgery
performed on the thyroid or parathyroid glands, and its occurrence should
be near zero. It can cause very significant medical problems and can be so
severe as to make a person’s life quite miserable.
Surgery
of the thyroid and parathyroid glands can be quite tricky. The parathyroid
glands have the most variable anatomy in the body. Because of this, even
the most experienced thyroid surgeons in the world could, on occasion, make the
mistake of destroying or removing all of a patients parathyroid glands.
Unfortunately, as will be discussed throughout this paper, the chance of
this life-changing complication occurring can be over
1000 times higher when the operation is performed by an inexperienced
surgeon.
The
“acceptable” rate of a surgeon causing hypoparathyroidism during an
operation on the thyroid or parathyroid glands is about 1% or less, as
reported in the medical literature. The reality, however, is much
different—and very dependent upon the skill and experience of the
surgeon. To publish a scientific paper in the medical literature, a
physician must have enough experience in the field that allows him/her to
accumulate sufficient data that is worthy of publication. Accordingly,
only surgeons that have done a lot of thyroid or parathyroid surgery have
enough patients that they have something to write about. It follows that a
surgeon that performs a couple of thyroid or parathyroid operations per
year will never accumulate sufficient data to allow him/her to publish.
Thus, the “acceptable” rate of hypoparathyroidism following
thyroid/parathyroid surgery of 1% is the rate of very experienced
surgeons. Those surgeons who are inexperienced and have bad complications
clearly do not write journal articles telling the world about their poor
outcomes.
This
is the largest study of surgical hypoparathyroid patients in the world. We
worked with the Hypoparathyroidism Association (www.hpth.org)
to collect data on over 200 patients who were made hypopara because of
surgery on their thyroid or parathyroid glands. As
we will show here, almost every patient with this complication was
operated on by a surgeon that does NOT perform parathyroid or thyroid
surgery more
than once per month. These are very inexperienced surgeons and their
inexperienced is directly related to the occurrence of this problem.
Patient
Demographics.
In
this study of 215 patients with surgeon-induced hypoparathyroidism, the
average age was 42 years and 90% were female. 80% were operated on for
thyroid disease while 20% were operated on for parathyroid disease. This
makes sense, since thyroid surgery is much more common than parathyroid
surgery and both thyroid and parathyroid disease are 3 times more common
in females.
Surgeon
Experience.
We
contacted each surgeon or their office manager and established the number
of parathyroid or thyroid operations performed by that surgeon in the past
2 years. Every patient who
developed hypoparathyroidism had a surgeon that performed
thyroid/parathyroid surgery less than twice per week. Ninety Five percent
(95%) of the surgeons who caused this performed less than one
thyroid/parathyroid operation per week. 85% of the surgeons performed this
operation less than once every two weeks, 65% performed this operation
less than once per month. There were no patients with hypoparathyroidism
that had a surgeon who performed more than 150 of these operations per
year.
Surgeons
that performed between zero and five thyroid/parathyroid operations per
year had a 9 % chance of making their patient hypoparathyroid. The chance
of this happening decreased to 5% when the surgeon performed 25 of these
operations per year. It was not until the surgeon performed 150 or more
thyroid/parathyroid operations annually that the rate of
hypoparathyroidism decrease to the “acceptable” rate of 1% or less.
The
experience of the surgeon can also be seen when the duration of the
operation is examined. Surgeons that perform a particular operation
frequently will usually become much faster and efficient. Over 85%
patients who developed hypoparathyroidism following their operation had an
operation that lasted 3.5 hours or more, with 65% having an operation that
lasted 4.5 hours or more. As a comparison, it typically takes the author
of this study (Dr Norman) an average of 55 minutes to perform a total
thyroid removal and an average of 17.8 minutes to perform a parathyroid
operation (he has performed nearly 8,000). Clearly the most inexperienced
surgeons take much longer to perform the operation, and in doing so, have
a much higher incidence of killing (or inadvertently removing) all of the
parathyroid glands.
Associated
Complications
The
second major complication associated with surgery of the thyroid or
parathyroid glands is injury to the voice box nerve. This nerve is called
the “recurrent laryngeal nerve” and there is one nerve on each side of
the neck, just behind the thyroid and immediately adjacent to the upper
parathyroid glands. If this nerve is damaged, the patient cannot talk
except in a very slight whisper. If BOTH of the nerves are injured, the
patient must have a tracheostomy in order to breathe. The “acceptable”
rate of injuring this nerve is 1%, however, as stated above, the rate of
this complication is directly related to the experience of the surgeon. In
this study, 54% of patients who were made hypoparathyroid ALSO had an
injury to the voice box nerve. In 11% the injury was permanent (they
can’t talk well for the rest of their lives), and in 4% the injury was
on both sides so the patient had to get a tracheostomy. As a comparison,
the author of this study (Dr Norman) performs approximately 1800 of these
operations annually, and has never had a permanent injury. Surgeons who don’t do an operation very often have a
MUCH higher rate of complications, and often have SEVERAL complications.
These complications are often life-changing.
Patient
/ Surgeon Interaction.
Over
½ of patients who were made permanently hypoparathyroid by their surgeon
never asked their surgeon about their experience in performing this
operation. Just over 55% said it never occurred to them to ask the surgeon
“do you do this type of surgery very often?”…. and thus had no idea
that their surgeon did NOT do this operation often… or ever! Within two
weeks of the operation, 61% of patients found out that their surgeon was
not experienced in this type of surgery and that their surgeon did very
few of these operations. Another 26% found out a few months later when
they went to a new doctor to get treated that their doctor was not the
best choice… even in their home town!
Another
interesting finding was that when we asked surgeons about their experience
performing thyroid/parathyroid operations, nearly every surgeon
overestimated the number of these operations that they performed on an
annual basis. When the surgeon’s estimate of his experience in the past
two years was compared to the actual number as reported by his office to
the insurance companies for payment (the real number of these operations
they actually performed), we found that the surgeon OVER ESTIMATED the
number of thyroid/parathyroid operations by two fold or more in nearly 55%
of all cases. In other words, most surgeons would tell us how many
operations they performed, only to find out that his office records showed
he/she performed less than half that many.
Sixty
percent of patients said that the possibility of getting hypoparathyroid
was never discussed prior to their operation… their surgeon never
mentioned it. The bottom line: patients never asked their surgeon if
he/she was experienced in performing the operation and they paid a very
dear price. If a patient did ask the surgeon, in over half of the cases
the surgeon exaggerated the number of these operations they perform by two-fold or more.
Patients
in this study were asked to tell us how their surgeon explained to them
that they had zero parathyroid glands left, and that they have a
complication called hypoparathyroidism. 61% said that their surgeon NEVER
told them what was going on and never told them that the problem was due
to the mistaken removal of all of the parathyroid glands—some other
doctor had to explain what was going on and why they were so sick. 27%
said that the surgeon did some explaining, but not much, and the final 11%
said their surgeon was very good at explaining what happened and why.
When these patients asked if they were pleased with how their
surgeon communicated with them, 65% said “not at all”, while only 8%
said “yes, he/she has been a great communicator”. Finally, when asked
about their feelings toward the surgeon that caused their
hypoparathyroidism, 58% said they were very angry with the surgeon, 30%
said they were indifferent, and less than 10% said they still liked their
surgeon a lot.
How Hypoparathyroidism Affects Patient's Lives
Calcium
and Vitamin D Requirements.
Patients
who have had all of their parathyroid glands removed or destroyed will
require high doses of calcium and Vitamin D every day for the rest of
their lives. Almost all patients in our study are required to take 4 or
more calcium pills per day. Two-thirds (67%) have to take 5 or more
calcium pills per day, and 25% have to take 8 or more calcium pills per
day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3
taking 3 or more per day. Thus, most patients who have
hypoparathyroidism must take 8 or more pills per day in order to carry on
the daily functions of life.
Despite
taking these pills, 45% of patients say they still get symptoms of low
calcium at least once per day. The most common symptoms reported by these
patients are: fatigue (77%), hand cramps (68%), mental confusion (43%),
and anxiety/fear (36%). One third of patients state that they get these
symptoms once or twice per week, while only 5% say they rarely or never
get these symptoms.
Work
and Employment
Having
hypoparathyroidism often makes people feel bad frequently enough that
nearly 25% say they cannot work and have become unemployed. Of those still
working, 72% said they had to change jobs because of concentration
abilities or other issues related to symptoms (can’t teach school,
can’t drive a truck, etc). 65% of patients say they miss 2 weeks or more
of work per year more than they ever did before. One third stated that
their employer doesn’t understand their issues and why they are sick on
a frequent basis.
Personal
Interactions
A
minority of patients say their family “understands” how they feel and
their family has been great. However, 78% say their family and/or friends
“simply don’t get it”. Just
over 40% have been put on antidepressants. Two thirds say that
hypoparathyroidism and the symptoms it causes have put significant stress
on their relationship, with 8% saying this ailment is directly responsible
for the breakup of their marriage. Clearly, patients with
hypoparathyroidism feel poorly and this puts significant stress on their
interactions with others.
Seeing
Doctors for Ongoing Care
Less
than 10% of all patients with hypoparathyroidism say their disease is
managed well enough that they never have to go to the emergency room to
receive IV calcium. Almost half of patients make one ER visit per year,
while 25% make 3 or more ER visits per year.
Having
hypoparathyroidism is associated with a dramatic increase in the number of
doctor visits per year. Only 20% said they were not referred to a new
doctor to help manage the problem, while 30% said they have 3 or more NEW
doctors that they have seen to help manage this problem. Importantly, 61%
said that even their endocrinologist doesn’t understand their symptoms
fully, and state that their doctor is often more interested in their lab
(calcium) values instead of how they actually feel.
One third of patients with hypoparathyroidism are now required to
see an endocrinologist every 1-2 months, one third see their doctor every
3-5 months, and one third see their doctor every 6-12 months. Two thirds
of patients have to get their blood calcium checked every 4 months or
less; one third gets their blood tested every month.
Summary
of
Surgeon-Induced Hypoparathyroidism
Surgeon-induced
hypoparathyroidism is a serious medical condition that is life-long.
Patients with hypoparathyroidism are required to take lots medications,
yet most of them continue to get symptoms of low calcium daily or weekly.
Hypoparathyroidism takes a serious toll on the interpersonal lives of
these patients at home and at work, and has significant costs associated
with multiple doctor visits and lab tests.
Surgeons
who perform more than 150 thyroid/parathyroid operations per year are
extremely unlikely to cause hypoparathyroidism, while those that perform
fewer than 20 of these operations annually have a 10% chance of
causing this or another serious complications. Surgeons who perform less
than one thyroid/parathyroid operation per month have a risk of causing
permanent hypoparathyroidism nearly 1000 times higher than the few elite
surgeons who perform over 500 of these operations per year. Patients
usually do not ask their surgeon about his/her experience, and when asked,
surgeons almost always exaggerate their expertise, with half of the
surgeons exaggerating the number of these operations they perform by more than two fold.
Reducing
the incidence of hypoparathyroidism lies in the hands of the patients. Few
surgeons will refuse to perform an operation that is referred to them
because they feel that they lack the experience to to a good job. Patients
must be educated about hypoparathyroidism as a life-changing complication PRIOR to
undergoing surgery on their thyroid or parathyroid glands. Going to the
“local surgeon” that your doctor sent you to is often not the best
choice. Patients must check on the qualifications and experience of their surgeons if
they expect the lowest possible complication rates. Having a nice diploma
on the wall isn't enough! Patients must be
informed and must take charge. Patients must ask hard questions of their
surgeons or the
consequences could be life-changing.
If
you want to know more about hypoparathyroidism, then make sure you read
our FIRST page on hypoparathyroidism.
Click Here to read the first page.
You
can visit the Hypoparathyroid
Association Website by clicking here.
IMPORTANT: If you are reading
these pages because you or someone you know is contemplating parathyroid
surgery, then please read the page on Cure
Rates and Complication Rates for different types of parathyroid
surgery. This page shows how the experience of the surgeon has a great
bearing on how often a patient develops a problem such as
hypOparathyroidism. It also shows how mini-parathyroid
surgery has a near zero chance of causing hypoparathyroidism. Pick
your surgeon well! A bad result after parathyroid surgery can be really
bad!
