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Section 4.
Parathyroid
Disease: Finding the Bad Gland |
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All Patients Ask Me: "How Many Parathyroid Tumors Do I Have?"
Over 90% of all patients with parathyroid disease will have just ONE bad
parathyroid gland.
Only 3% will have 4 bad parathyroid glands...
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 Parathyroid
disease (Hyperparathyroidism) is quite simple in the vast majority of
patients. In fact, only about 1 out of 15 patients with parathyroid disease will
have more than one bad parathyroid gland. The rest--about 90% have one
parathyroid gland that grew into a tumor--usually about the size of an
olive or a grape. This is a benign (non-cancer) tumor which we call an
"adenoma". About 6% will have two bad parathyroid glands. If this is the first page you are reading... go back
to the front page and start over. This page assumes you know some basic
information about parathyroid disease.
 You
should already know that all humans (dogs, cats, horses, cows, deer,
antelope, pigs, elephants, giraffes, etc, etc, etc) have 4 parathyroid
glands. All mammals have 4
parathyroid glands.
You
should already know that hyperparathyroidism is a disease caused by the
over-production of parathyroid hormone (PTH). It is this hormone that
circulates in the blood removing calcium from the bones and puts the
calcium into the blood. It is the high calcium in the blood that causes
all of the symptoms and problems.
You
should already know that the vast majority of cases of parathyroid
disease are caused by a single bad parathyroid gland... a benign tumor
called a "parathyroid adenoma" This tumor will continue to
grow and make your disease worse and worse until it is removed.
Parathyroid adenomas will NEVER go away on their own. They will NEVER
decrease in size on their own. They are TUMORS that must be removed.
They are NOT cancer, they are benign tumors that make uncontrolled
amounts of hormone. Click on this
page to see LOTS of pictures of parathyroid adenomas.
This
disease is very simple and very easy to fix in almost all patients. Be
careful if your doctors tell you this is hard and dangerous to fix. Things have changed
over the past 5-10 years! If you get an expert surgeon, it almost always
extremely easy to fix.
Almost Everybody has
Just ONE Bad Parathyroid
IN REVIEW: Almost everybody with
parathyroid disease has one parathyroid gland that has grown into a tumor.
This means that the other three
parathyroid glands are normal. The single bad parathyroid gland is
called a "parathyroid adenoma". This is a benign tumor
-- remove it and you are cured. |
THE PROBLEM: A recent telephone survey completed in
June 2004 of 400 patients with primary
hyperparathyroidism who were scheduled to have surgery at the Norman Endocrine Surgery Clinic
showed that 82% believed that they have more than one bad
parathyroid gland. Yes, 82% think that they are one of the 9%. How
can it be that so many people think they have a more complex disease than
they do? How is it that they are anticipating the need for a large
old-fashioned big operation? If 91% of all people with hyperparathyroidism
have just one bad gland, how can 82% of all of them be so miss-informed? How are they getting their information? How
are they being informed that parathyroid surgery is dangerous and that
they will have to have a big 3-5 hour operation to fix it... and possibly
not even fix it? Who tells everybody the wrong information? Who tells them
that they have 4 bad glands when they clearly do NOT? Who is confusing these patients?
Side Note so we don't confuse you too:
Even patients with 4-gland disease can have mini parathyroid surgery at
the hands of some expert surgeons. Mini parathyroid surgery is
NOT only for those with a positive scan if you have an expert
parathyroid surgeon who does many parathyroid operations. The biggest
mistake we see (besides not diagnosing parathyroid disease correctly) is
that patients will get a poor quality sestamibi scan which doesn't show
a tumor and their doctors will tell them that they likely have four bad
parathyroid glands (hyperplasia), and therefore the operation is more
difficult and can't be done as a mini operation. It depends on the
surgeon. This is not necessarily true! We do mini-surgery on 100% of
patients regardless of the scan results.
Here
are the facts about parathyroid surgery and the differences between
patients with one bad gland (the 91%) vs. the 6% with two bad glands, and
the 2-3% with 4 bad glands.
 | Operations for single bad glands (adenomas) are usually quicker
 | In our hands, operations in patients with a single adenoma takes
between 9 and 17 minutes (average is 16.4 minutes for our last
5,500 operations) while operations for 4-gland hyperplasia takes
between 17 and 27 minutes (average is 20.5 minutes). |
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| Patients with a single adenoma usually start getting
relief of their symptoms in 1-5 days where as those with 4-gland
hyperplasia usually take a week or two before they start feeling
better. (Note: All patients can take as long as 3 months before they
feel the full benefit of parathyroid surgery. However, MOST patients
feel dramatically better by 1 month post-op). |
| The bottom line -- it doesn't really matter if you have one bad
gland, two bad glands, or 4 bad glands if you have an experienced surgeon. The operation to fix 4 bad glands is
straightforward and
very successful if you have an experienced surgeon. The operation to
fix a single adenoma is just a little easier and a little quicker
(especially if your surgeon is not an expert). The
end result should be almost exactly the same. The incision should be
the same. Many expert parathyroid surgeons are now sending almost all
of their patients home within an hour or two of
the operation. Also... be careful... and in general, avoid the surgeon
that says "you have a negative scan so that means you have 4 bad
glands--I need to remove all 4 and transplant one in the arm". If
your surgeon says this, then you may want to seek another opinion (go
somewhere else!). This is NOT correct.
Transplanting parathyroid glands into the arm of a patient should be
used only for patients who have kidney failure and are on dialysis.
This should almost never be done for patients with primary
hyperparathyroidism (the disease that is discussed throughout this
entire website). |
Why Does Every Parathyroid Patient Think They Have 4 Bad Parathyroid
Glands? Where Do Patients Get the Bad Information? Who is
Misleading Patients into Thinking they Have 4 bad Glands and Then Tells
Them They
Can't Have Mini Surgery?
Well,
the answer to this question is simple, but may not be politically correct.
We will let the facts speak for themselves.
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Parathyroid disease is uncommon. Therefore, there are few
experts. Most patients are treated by doctors who see this disease
rarely! Said differently, there can't be a lot of experts treating a
disease that is uncommon! |
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Doctors who rarely see parathyroid disease will
occasionally tell
patients that surgery is dangerous and risky. It may be in their
neighborhood because they see it rarely, but it is not dangerous and
risky everywhere! If your doctor says parathyroid surgery is dangerous
and risky, go find a doctor who does this routinely and tells you that
it is easy. |
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Most endocrinologists spend the vast majority of their
day taking care of diabetes. Secondly they will see patients with
thyroid problems. Most endocrinologists see less than 1 parathyroid
patient per month (about 5-15 per year in a recent survey).
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Many endocrinologists will take an interest in
your parathyroid disease and can be very helpful to you. If your
endocrinologist is interested and knowledgeable, they can be a
very wonderful asset. However, if they are not up on all the
latest medical literature, and they don't know how good their
x-ray department is, then they can mislead you. If they tell you
you can't have mini surgery because your scan is negative--then
its up to you to educate them! This is not true for all surgeons.
Its up to the surgeon, not up to the x-ray! |
| It is very important for you to understand that
your endocrinologist (as wonderful as many are) is not a surgeon
and therefore very few have ever seen a parathyroid gland in his/her life.
Chances are that he/she has never actually seen a parathyroid
operation. Never. So the lesson here is this... be careful
of advice given to you about an operation by a doctor who has
never actually seen the operation they are talking about. Clearly
this make sense to you... and it should. All endocrinologist will
tell you that you must find an experienced surgeon, and they will
all tell you that the more experience a surgeon has performing
parathyroid surgery the better. This is great advice. But if they
tell you that you have to have all four removed because your scan
is negative... that is simply not true. At least 85% of patients
with NEGATIVE scans will have ONE bad parathyroid tumor!!! They
just had a bad scan! |
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| Patients are sent for ultrasound scans, CT scans, and
MRI scans in an attempt to locate the one bad gland--the adenoma. CT
scans and MRI's are almost always negative (don't get one--you will be
wasting your time--only 5% are positive and thus 95% of the time they
are a waste of time and money). They will almost never show
the adenoma. Ultrasound scans are usually negative if they are
done by a technician at a radiology department (they find the
parathyroid tumor only about 17% of the time... recent data in
publication by Dr Norman who reviews over 1000 parathyroid ultrasound
scans per year). The only ultrasound
scans that are usually worth a hoot are those that are actually done by your
endocrinologist in his/her office or by your surgeon in his/her office
(even still, many of these are not positive--it is very skill
dependent). If you are sent for an ultrasound
scan at some radiology place... you may want to tell your doctor "no, it is not
necessary", and ask to discuss the merits of this test further.
If they are worried about THYROID problems also, then the ultrasound
can be extremely useful. Discuss this with your doctor and see what
the purpose of the ultrasound is going to be. If your
doctor orders a CT scan or MRI before you ever see a surgeon, then you
should just shrug your shoulders and print this page and take it to
them. We cannot think of any reason that any
patient should have a CT scan or MRI on a patient with hyperparathyroidism prior to an
operation. This should NOT be done!
| Therefore, non-expert doctors will send their patients
to get an ultrasound, CT scan, or
MRI trying to find the bad parathyroid gland -- and the test comes
back negative and their doctor tells them that he/she "thinks
they have 4-gland hyperplasia because the scan didn't show
it". This is simply not true! The scan didn't show the
adenoma because these scans were not designed to show the adenoma. They
may as well be taking x-rays of your big toe! A negative scan does
NOT mean you have 4-gland hyperplasia, it usually means you had an unnecessary x-ray. Many of you reading this page know
this to be true! If we could teach all the doctors out there this
one fact we'd consider ourselves very successful! |
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All patients should get a sestamibi scan
(however, it probably should be ordered by the surgeon and not the
endocrinologist---but we can't fight this fight... most
endocrinologists send their patients for a sestamibi scan... I wish
they did not-- since it should probably be done by the surgeon;
possibly done only once on the morning of the operation (which is what
we do).
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About 60% of sestamibi scans performed in the US
are done in such a poor manner that they will be interpreted as
"Negative" even though they would be positive if they
were done better. Read this last sentence again and let it sink
in! OUCH! |
| When a scan is done poorly, it will not show the
adenoma. At our clinic, over 90% of scans that are
"negative" at some other hospital become
"positive" and show the adenoma when we do the scan
correctly. Read more about Sestamibi
scanning here. About 81% of all patients that travel to
Tampa for surgery have had a NEGATIVE sestamibi scan somewhere
else. Please, don't waste your time and money on a scan that will
be worthless if you plan to come here! |
|  When
a patient has a negative sestamibi scan, the doctor will tell the
patient "the scan was negative,
therefore I think you have 4 bad glands (hyperplasia). Because you
have 4 bad glands you can't have mini parathyroid surgery".
Again, this is not necessarily true. It is up to the surgeon to
make this decision, so discuss this with your surgeon. Some
experts can do a mini parathyroid operation on anybody (we do mini
parathyroid operations on all people regardless of the scan
results). A poorly performed scan only means that you had a poorly
performed scan. It does NOT mean that you don't
have a single bad gland--the overwhelming odds are that you do!!!
Also, it is important for your doctor to actually look at the
x-ray and not just read the report. THUS (IMPORTANT), if you get a
sestamibi scan then ask the technician who is performing the scan
to print an extra copy of the x-ray and give it to you. Then you
take this scan to your doctors (especially the surgeon... he/she
needs to see the scan so they know if the scan is good quality and
if his/her opinion agrees with the radiologist). GET THE X-RAY and
take it with you!. One final note: Our data on over 8,500 scans from 2003, 2004, 2005, 2006,
and 2007 shows that about 80%
of sestamibi scans performed from around the country are read as negative when they are
really positive when the scan is done correctly! If your scan
looks like a couple of out-of-focus blobs... then its probably not
a very good quality scan.
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You Need to Look at Your Own Sestamibi Scan!
YOU should look at your sestamibi scan. If it is not clean,
crisp, and in focus, then you are getting a scan that is not as
good as it can/should be. You as a
patient with no medical training should be able to look at your
sestamibi scan and clearly see your head, neck, shoulders,
salivary glands, thyroid gland, etc. Nobody should have to tell
you what you are looking at. It should be very clear and in focus
and clearly show your head and shoulders. If it is blurry and
looks like a bunch of black blobs and black blurs then you may
have wasted your time. You as a novice may not see the parathyroid tumor (that
takes a LOT of practice), but you should be able to see your upper
body in a clear and crisp picture. Again... blurry blobs =
terrible technique, can't rely on the results... be glad you aren't
the one paying for it!. |
Why is this so? Why are so many scans performed in such a
poor manner? Because parathyroid disease is uncommon/rare, and the vast majority of
places don't do these scans often. The scans are done by technicians who
mean well, but have done few. Watch them... if they are reading in a book
how to do it and asking questions, you will have your answer. Who is
overseeing the quality of these scans across the US? Nobody. And, nobody
is demanding better (heck, ask your doctor and he/she will often tell you that
they didn't actually see the scan, they just read the report... so they
don't know if its good or bad). Well, you, the informed patient can demand
better. It should be clean, crisp, and they should be able to show it
to you so it makes perfect sense. If its out of focus... Shake your head
and sigh...
Even many large university hospitals do not do sestamibi scans
well. In our recent study we found that university scans were NOT any
better than those done in community hospitals... that many of them were done
in a poor, or even worthless manner. Again, a NEGATIVE SESTAMIBI SCAN DOES
NOT MEAN YOU HAVE 4-GLAND HYPERPLASIA... IT MEANS THAT THE SCAN WAS NOT
DONE IN A GOOD ENOUGH MANNER TO SHOW THE ADENOMA. ALMOST 90% OF
PATIENTS WITH NEGATIVE SESTAMIBI SCANS WILL STILL HAVE A SINGLE ADENOMA
AND NOT 4 BAD GLANDS! The scan is JUST A TOOL. Don't get hung up on
this scan... it's just a tool that your SURGEON can use to help find the
gland when he/she operates.
If your doctor tells you
parathyroid surgery is complex and dangerous, you may want to find one
that doesn't say this! Would
you get on an airplane if the pilot told you it was complex and dangerous
to fly?? Would you fly on an airplane if the pilot only flew this type of
airplane a couple of times per year?? Parathyroid surgery is not
risk free, but it should be very straightforward, very predictable, and
extremely low risk (near zero risk). Again, parathyroid surgery should be VERY LOW RISK AND VERY EASY! If
your surgeon can't tell you with a high degree of certainty which parathyroid
gland is bad and what they intend to do about it BEFORE the operation...
you may want to find a surgeon with more experience.
If your surgeon is not performing parathyroid surgery at least every week,
you will not have the same results as one that is doing this many (the
more he/she does is usually much better for you). If your surgeon is going to put a drain in your neck to
drain out any blood after the operation... well, you may want ask why this
is being done. If your
surgeon tells you that you have 4 bad glands because your scan is
negative... well, this is NOT correct, so this is a problem and probably
not the surgeon you want. This is absolutely the most important thing that
will tell you if you want this person to operate on you. If your surgeon tells you that your
operation could possibly take more than 2 or 3 hours... well, you may want
to find somebody that does this operation more often. If your surgeon tells you that you have to spend the
night in the hospital, well, you may want to ask why, since this is almost
never necessary. There is no other operation in the world that is
influenced by surgeon experience as much as parathyroid surgery is. For an
expert... it is VERY SIMPLE AND STRAIGHTFORWARD OPERATION!!! DO NOT BE AFRAID OF THIS SIMPLE
OPERATION IF YOU HAVE AN EXPERT! Feel good about your surgeon, and then
relax, he/she will remove the tumor! Please
go to this page and see pictures of parathyroid tumors that we removed... |
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