from the Experts at the Norman Parathyroid Center.
Interesting stories of hyperparathyroidism we see every day.
If you have hyperparathyroidism, the best thing you can do for your health is find a good parathyroid surgeon. Not every surgeon can do a parathyroid operation, and experience with this operation varies even among those who specialize in neck or endocrine operations. If you are seeing a surgeon, ask these questions before you let him or her operate on you – and consider finding another surgeon if you don’t like the answers. Remember, you have been growing a parathyroid tumor (or tumors) for years. You can take a few weeks to make this decision. Do not hurry this important decision, and don't accept a surgeon simply because he has time on his schedule to fit you in. A surgeon with time on his schedule has time on his schedule for a reason!
What you want to hear from your parathyroid surgeon: Five or more parathyroid operations every week.
What you are willing to hear: 3 parathyroid operations per week.
This is absolutely the most important question to ask. All of the other questions on this list are secondary in importance to this question. Parathyroid surgery is not easy. Many surgeons have trouble even finding the parathyroid glands-the normal glands are about the size of a grain of rice, and even the tumors are often no bigger than an almond. Parathyroid surgery becomes easier only with experience – lots of experience. The more you do something, the better you get. This is true for everyone. You wouldn’t want to listen to an orchestra that only practiced once a month, or watch a football team that reviewed plays just once a month, so why would you go to a surgeon who only performed the operation once a month?
Note: When you ask your surgeon how many parathyroid operations he or she does, make sure to specify that you only want to know the number of parathyroid operations, not thyroid operations. The thyroid is near the parathyroids, but thyroid surgery is very different. You want someone who does the operation that you need, not the operation for a nearby organ. Wishy-washy answers are common-get a real number.
What you want to hear from your parathyroid surgeon: Yes!
Some surgeons try to remove one bad parathyroid (the tumor) and leave the rest alone. In theory, this sounds great, since many patients (about 70%) will have just one tumor. But there is a 30% chance that you have more than one tumor, and there is no way for your surgeon to know this before the operation. During the operation, the only way to know is to assess all four. If you happen to have more than one bad gland, but your surgeon only removes one, you will need another operation in the future. And, you likely will not feel better, thus the operation was a waste in more ways than one.
An inexperienced surgeon may be reluctant to look for all four glands. He may tell you that this does not need to be done because you have a “positive scan” and he knows which gland needs to be removed. This is not necessarily true, and is over-simplifying the problem. The second bad gland is unlikely to be seen on the scan – you almost always see only one. He cannot guarantee that the other three glands are normal without looking at them. Remember also, positive scans are wrong at least half of the time, (example, a scan read as positive for left lower parathyroid is actually showing a left thyroid nodule and the parathyroid tumor is on the other side). Over half of the patients that come to our center with a positive sestamibi scan have a tumor located somewhere else-the scan was wrong. Bottom line, the only way to know for sure if somebody is cured is to examine all four parathyroid glands. There is a great video of Dr Norman performing a mini-four gland operation on a patient with a positive scan. Watch that video (the entire operation takes him only 12 minutes from the time he starts until the band-aid is put on the neck) and you will see that a second parathyroid tumor is found and removed from the opposite side of the neck. This tumor would never have been found and the patient would need a second operation some time down the road if the second tumor was not found. For this reason, we do not do one-sided operations.
What you want to hear from your parathyroid surgeon: No, we don't do that. Or, we use it but it is just a tool, my experience doing this operation is more important than this one test.
Most parathyroid surgeons now use something called “intraoperative parathyroid hormone (ioPTH) monitoring.” Some experienced surgeons use this, and all inexperienced surgeons and surgeons who do not routinely look at all four glands will use this test. For ioPTH, the surgeon measures the PTH in the blood before and after he removes a bad gland to see if the PTH level decreases. When an overactive gland is removed, the hormone level drops quickly. This is nice to see, and confirms that the surgeon has removed an abnormal gland (a parathyroid adenoma or tumor). The surgeon will conclude the operation when the PTH drops by 50%.
Ok, then why shouldn’t we use ioPTH? First, it doesn’t tell you anything about the other three glands. It is good at telling the surgeon that a parathyroid adenoma was removed… of course your surgeon should already know just by looking at it that he removed a bad gland. And when you remove a bad gland, the PTH level will drop – even if there is another tumor present! Checking ioPTH does not guarantee that the other glands are normal. There can be a second tumor, and the ioPTH will still drop. We operate on several people every week who had this done and they have a second tumor.
Second, using ioPTH means that you will be getting a lot more time under anesthesia. Each hormone result can take half an hour (longer than the average operation should take). The surgeon operates, finds a gland, and then measures the hormone. Then he removes the gland, waits 10 or 20 minutes for the PTH level to decrease, and then draws the blood again. Then, the tube of blood is carried to the lab where it is processed for 20 minutes to measure the amount of hormone. So, a 20 minute assay must take a minimum of 30 minutes (he had to wait at least 10 minutes before drawing more blood from your arm). You are under anesthesia during the time that your surgeon stands around waiting for a result. And sometimes the level takes longer to drop than expected, so another blood sample is sent, which means another half hour under anesthesia for each blood test. Some surgeons will even put extra intravenous or arterial lines in you so they can use these to draw your blood in the OR. Our advice: ask your surgeon if he is going to put an IV line in so he can measure the PTH levels easily. If he says yes, get up and go somewhere else. This is a big red flag because they are doing this anticipating drawing blood from you lots of times.
IoPTH just doesn’t work as well as surgeons want to believe. I know this firsthand, because in my endocrine surgery training I was taught to do ioPTH. I would never use it now. It doesn't work, and it encourages surgeons to make poor decisions in the operating room. Ask your surgeon if the ioPTH has ever caused her to stop an operation before she should have, or to take out a normal gland because the ioPTH wasn't responding like she thought it would. Our practice is full of people who were not well served by ioPTH - either the surgeon falsely believed that the patient was cured because the ioPTH dropped by 50%, or (and this is even worse) the surgeon started taking out perfectly normal parathyroid glands in an unsuccessful attempt to get the ioPTH to drop. Note that this is not a fault of ioPTH, but of inexperienced surgeons who are too reliant on it. Find a surgeon who recognizes that the test is just a tool, and it is not a perfect tool. The surgeon who recognizes the weaknesses in this test and is willing to discuss the problems with this test is an honest surgeon. That is what you are looking for.
What you want to hear from your parathyroid surgeon: Less than 30 minutes, on average.
OK, this may be the ideal answer, but it probably isn't what you will hear. We do about 3200 parathyroid operations per year (11-16 per day) and only after doing several thousand and knowing all of our tricks can we do parathyroid operations in less than 20 minutes on average. But not everybody can come to Tampa and we are not the only surgeons in the world who can cure you. However, if a surgeon tells you it will take her longer than two hours to assess all four parathyroids, think strongly about going to someone else. This indicates that she does not really know where to look, and will be "exploring" in your neck. There are a lot of important structures in your neck (like the nerve that controls your voice!) and you do not want someone digging around or “exploring” in there. In fact, if the surgeon says "I'm not going to look at all the other parathyroid glands because I don't want to injure any nerves or other structures in your neck" then you know that this surgeon has not done hundreds, and surely not thousands. Surgeons who tell you that they are not willing to do the right operation because they are scared of damaging something are really telling you that they are not comfortable locating all four parathyroid glands quickly and safely. Listen to what they are telling you. You do not have to come to Tampa to get a good operation! But please go to somebody that does this operation all the time, not the guy who took out Uncle Steve's gallbladder or put the tubes in your kid's ears.
The only thing you are willing to hear from your parathyroid surgeon: No. I know you have a tumor based on your blood tests.
This is a slam dunk, easy question. If your surgeon wants to see the tumor on a scan before she operates, then she is not an expert. Parathyroid tumors are diagnosed by blood tests (calcium and parathyroid hormone levels), not by scans! We know from your blood test results whether you have a parathyroid tumor or not. This might seem strange, since most tumors elsewhere in the body are diagnosed when you feel a lump or see an abnormal growth on a scan. Parathyroid disease is different. We do not need a scan to know that there is a tumor, and a scan may not show a tumor even if there is one there.
Surgeons get scans before the operation in order to see where the bad parathyroid gland is located (or isn’t located). The best test is a sestamibi scan, but even this often will not show the bad gland. At least half of sestamibi scans are negative, and even when positive, most are wrong. Many surgeons use ultrasound, which is great for evaluating your thyroid and may show the bad parathyroid, though it may not. Here is the important part: A good surgeon does not need any other scans, even if no tumor has been seen. Again, we know there is a tumor there based on blood tests, not a scan. If your surgeon wants to get an MRI in order to find your parathyroid tumor, you should find another surgeon. MRI should never be used to find parathyroid tumors.
Most importantly, if your physician says that you do not have a parathyroid tumor because the scans do not show one, then she does not understand this disease and you need a new doctor. If you are told that you cannot have an operation because the tumor has not been found, you need to find a better surgeon. A good surgeon does not need a positive scan to cure you. Remember, you do not need a referral to a surgeon for a parathyroid operation. If you don't like the advice your endocrinologist is giving, then find an expert parathyroid surgeon and go see him or her.
Your parathyroid surgeon should be happy to answer these questions. If he seems uncomfortable with these issues, or you don’t get the answers you like, find someone else. It’s your body, and you deserve to have an experienced surgeon operating on you. And remember, an experienced thyroid surgeon is not an experienced parathyroid surgeon. At our center, we only do parathyroid surgery, so we have a lot of experience, but we understand that not everyone can come to Tampa for an operation. We also know that many unqualified surgeons are attempting to do parathyroid surgery. Take charge of your health, ask these questions, and get the best parathyroid surgeon you can find.
Other Blogs on this topic:
Re-Operative surgery article on parathyroid.com: http://parathyroid.com/Re-Operation.htm