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The normal range for blood calcium is different for children than it is for adults. Children and teens have higher amounts of calcium in their blood than adults because they have the highest level of bone metabolism and are actively forming new bone all the time. Adults over 25 years of age stop forming bone and therefore the upper limit of calcium begins to come down. Adults over 35 years of age have the lowest levels of blood calcium; this is normal because they are no longer forming new bone.  Most reports of blood calcium do not account for your age and therefore reports the upper limit for all people, including children. This is unfortunate because many older adults with hyperparathyroidism are not recognized early when their calcium begins to rise because the lab values are treating the adult like he/she is a teenager—the results will say that a calcium up to 10.7 mg/dl (2.67 mmol/L) is normal, but this is normal for children and teenagers, not for adults. This app requires your age because there is no way to interpret a person’s calcium levels without knowing their age. The normal values and many of the graphs in this app will change according to your age. In fact, if you change the year of your birth so you are 18 years old, the graphs will change quite a bit! Teach this to your doctors!

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Patients with “secondary” hyperparathyroidism because they have renal failure and are on dialysis are often given a drug called Sensipar (cinacalcet). This drug does not help patients with primary hyperparathyroidism (patients not on kidney dialysis). Occasionally doctors will prescribe Sensipar to help bring down a high calcium level. This drug can do this, but it does not bring down the PTH level. Decreasing the calcium level without making the PTH level go into the normal range is not helpful, and may actually make things worse. Several scientific studies have shown that patients with primary hyperparathyroidism who took Sensipar had a worsening of their osteoporosis. Sensipar is not an alternative to parathyroid surgery. At least a third of patients taking this drug become sick and must stop taking it. Virtually every patient (even those over 90 years of age) can have a mini parathyroid operation to cure their hyperparathyroidism very quickly and safely. Using Sensipar as an alternative to mini-surgery is typically not recommended.

For more information on this topic: http://www.parathyroid.com/Sensipar-high-calcium.htm

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How high the calcium has become is NOT a measure of how severe the hyperparathyroidism has become. This means that a patient with blood calcium of 12.5 mg/dl (3.19 mmol/L) does not necessarily have worse or more severe hyperparathyroidism than a patient with blood calcium of 10.7 mg/dl (2.67 mmole/L).  We see a common mistake made by doctors who don’t know much about this disease making the assumption that a patient with a calcium level of 10.7 mg/dl has “mild” hyperparathyroidism that can be watched until the calcium goes higher. This is a serious misunderstanding of this disease—the height of the calcium elevation is not a good measure of the severity of hyperparathyroidism and is not a good indicator of how much damage has been caused.

If an adult patient has a calcium level of 12.0 mg/dl (3.0 mmol/L), they have severe hyperparathyroidism and have probably had calcium levels above 10.1 mg/dl (2.52 mmol/L) for at least ten years, which is not normal in an adult. They are almost guaranteed to have developed many of the complications of untreated hyperparathyroidism. This should not be allowed to happen. However, not everybody who has a parathyroid tumor for 10 or even 15 years will get calcium levels this high. Most patients will develop heart disease, osteoporosis, A-Fib, GERD, anemia, kidney stones, and even kidney failure without ever having a single calcium level of 11.5 mg/dl (2.87 mmol/L). However, they will have had elevated calcium levels for at least 6-8 years.

Monitoring blood calcium levels because it is just a little bit elevated is unwise as evidenced by virtually every scientific study in the past 15 years. Even slightly high calcium levels can cause ALL of the health problems associated with this disease. Again, the complications and health problems of hyperparathyroidism occur at ANY elevated calcium level. Blood calcium that is only slightly high is just as dangerous as very high blood calcium.

For more information on this topic: http://www.parathyroid.com/parathyroid-symptoms.htm

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Sestamibi Scan

The sestamibi scan is the most common scan performed to try to “find” a parathyroid tumor. Virtually all patients will have a sestamibi scan prior to their operation.  The quality of this scan is very dependent upon the skill of the people performing it, and the doctor interpreting it. About 40% of sestamibi scans are correctly positive, with about 60% being equivocal or negative. A “negative” scan doesn’t mean you don’t have a parathyroid tumor, it simply means the scan didn’t find it. Most commonly this means the parathyroid tumor is right behind to the thyroid gland and it just can’t be seen.  Even when sestamibi scans are “positive”, they are wrong about 50% of the time because thyroid nodules can look like a parathyroid tumor, or the scan is interpreted as lower parathyroid gland and it is actually an upper gland. The take away message is that this scan is not as accurate as doctors think, and because it is often wrong (both positive and negative), the results of this scan should not be used to decide what to do. Like all scans, the sestamibi scan is not a diagnostic or management tool. Be careful of putting too much emphasis on this or any other scan.

The SPECT scan is a different type of Sestamibi scan. It is less accurate at finding parathyroid tumors, but if it does find one, it is better at telling the surgeon where it is located. The makers of this app strongly believe that this scan is over used and over emphasized. In reviewing over 40,000 sestamibi scans we can confidently say that a SPECT scan provides wrong information more often than it provides correct information.

Ultrasound:

The ultrasound scan is the second most used scan for hyperparathyroidism. Again, the quality of this scan is dependent upon the person performing the scan, with the highest quality scans being ones performed by an endocrinologist or surgeon (not a technician). The problem with ultrasound scanning is that the sound waves cannot travel very deep into the tissues, and so about 30% of parathyroid tumors cannot be found simply because they are deeper than the sound waves travel. Another problem with ultrasound scans is that small parathyroid tumors are often confused with lymph glands that occur normally in the neck. Although many doctors rely heavily on ultrasound scans, just like sestamibi scans they are wrong just as often as they are right. Often the ultrasound scan will not show a very large parathyroid tumor because of its location (called a false-negative scan because the patient has a tumor but the scan doesn’t show it). Other times a lymph node or thyroid nodule will be called a parathyroid gland by mistake (called a false-positive scan because this isn’t a parathyroid tumor). Ultrasound scans are way over used, and their results are not nearly reliable as some doctors would like you to believe.

CT Scan and 4-D CT Scan

The CT scan (or CAT Scan) is much less dependent upon the person performing the test than the sestamibi or ultrasound scans. However, this test is less accurate at finding small parathyroid tumors than the ultrasound scan and typically can only find tumors that are medium or large in size. Thus, CT scans, and the more advanced 4-D CT Scan is still wrong at least 50% of the time. Importantly, this test requires IV dye that some people cannot tolerate, and this test is 5 times more expensive than ultrasound and 4 times more expensive than sestamibi. This test is over used and is often wrong.

MRI Scans

MRI scans are very poor at finding parathyroid tumors. There is no role for MRI scans in patients with hyperparathyroidism. This test should never be done to try to find parathyroid tumors. NEVER.

For more information on this topic: http://www.parathyroid.com/sestamibi.htm

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Patients who have primary hyperparathyroidism for a number of years tend to have a higher incidence of developing cancer within other organs. Several studies have shown that patients who have high blood calcium have nearly a two-fold increase in the development of breast, colon, kidney, and prostate cancer. These studies suggest that it is the duration of elevated calcium (how long the calcium has been high) which correlates to higher rates of cancer in these other organs. The development of these other cancers has nothing to do with how high the blood calcium has become, instead it is how long it has been high that is important. Even very small elevations of blood calcium for more than 5 years appears to increase the rate of developing cancer in these other parts of the body. This is why “observing” and “watching” the high calcium waiting for it to possibly get higher is not be the best management option. The complications of hyperparathyroidism (stones, osteoporosis, heart attack, stroke, A-Fib, and even the development of other cancers) are related to how many years the calcium has been high. Importantly, several of these same studies have found that removing the parathyroid tumor and curing the high calcium reverses the increased cancer risk.

It is not completely known why people with hyperparathyroidism have a higher chance of getting these other cancers, but there are several theories. One theory revolves around the calcium molecule itself which may turn on promoter genes for certain cancers, and turn off genes that inhibit the formation of cancer. Other theories center on vitamin D and the fact that the vast majority of patients with hyperparathyroidism have low vitamin D.  The low vitamin D is protecting the patient from developing very high blood calcium levels, but it may be causing other problems. Clearly the answer is to remove the parathyroid tumor so these patients can be put on vitamin D.  Remember, if your calcium is high, vitamin D should usually not be taken as it can make your blood calcium go very high. The ideal situation is to have the parathyroid tumor removed and then after the tumor is removed, the patient should be supplemented with vitamin D and calcium together to restore bone health and vitamin D levels.

For more information on this topic: http://www.parathyroid.com/parathyroid-symptoms.htm

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Choosing a surgeon is an important decision. You should ask him/her of their training in parathyroid surgery. You should ask them how many parathyroid operations they perform every week. They should be able to show you their operation schedule and hopefully you will not be the only parathyroid operation on the schedule. Hundreds of scientific studies over the years, in every country, show that the cure rate and the complication rate for parathyroid surgery is dependent upon the experience of the surgeon. Surgeons who perform less than 50 parathyroid operations per year typically have worse results, and those performing less than 25 have even worse results. Be careful of surgeons who discuss thyroid surgery rather than parathyroid surgery—they are not the same and a surgeon who performs thyroid surgery weekly is not necessarily experienced and expert in parathyroid surgery (the decision making process in the operating room is very different).

You should ask about the possibility of vocal cord injury, and this should be much less than 1%. Some surgeons will monitor your vocal cord nerve during an operation, however this technique does not decrease the incidence of vocal cord injury and may actually increase your risk. Some experts perform this operation without endotracheal anesthesia (a tube is not put into the trachea for breathing purposes), but again, this is surgeon preference and often a choice due to the experience of the surgeon and anesthesia team. These are important items to discuss. Surgeons with lots of experience will rarely keep a patient in the hospital overnight for monitoring, thus discussing how long you will be in the hospital will give you an idea of your surgeon’s level of expertise and confidence. A quick and successful operation should allow most patients to go home within 2.5 hours of the operation.

Watch your surgeon’s reaction to your scans. Surgeons with less experience almost always rely on scans more than surgeons with extensive experience. Surgeons who order multiple scans are typically less experienced. If your scan is negative and the surgeon decides to “monitor” you for a while rather than operating, he/she is telling you that they are not confident that you will have a good outcome. This does not mean that you should not have the operation; it simply means that particular surgeon is not comfortable operating without a positive scan. These are typically less experienced surgeons. This is a time to find a more experienced surgeon, this is not a time to “do nothing” for a while and get another scan in 6 months.

You should talk to your surgeon about how he/she will determine if all of the parathyroid tumors have been removed prior to concluding your operation. The highest cure rates are seen when an expert parathyroid surgery examines and evaluates all four parathyroid glands during the operation. The lowest cure rates are typically seen with surgeons who remove one parathyroid gland, do not check the other parathyroid glands, and rely on a PTH test to determine if you are cured.

Spending the night in the hospital “to monitor” your calcium levels is not routinely necessary. This is another item you need to talk about, understanding that less experienced surgeons tend to keep their patients in the hospital longer, and even over night. However, remember that safety is always the most important factor so if your surgeon feels more comfortable doing this, then let him/her. Ask about what kind of sutures will be used to close your skin. Experts rarely use any type of suture that requires you to return to the office to have the stitches removed. Avoid a surgeon who uses staples on your skin.

In summary, be confident in your surgeon. Don’t be afraid of asking to see a different surgeon—this is your decision to make. Make sure you are comfortable with how he/she answers your questions.  Be smart and take your time making this important decision. Do not feel rushed. Hyperparathyroidism is a disease that damages our bodies over years, so taking a few weeks or even a month or two to make this important decision is fine. Be happy with your surgeon and then relax and look forward to feeling better and a healthier body!

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Mini-parathyroid surgery can be performed on virtually every patient with primary hyperparathyroidism, but this is very dependent upon the skill and experience of your surgeon. Some surgeons require a positive scan of some form (like a sestamibi scan or ultrasound scan) before they will agree to perform a mini-parathyroid surgery. Other surgeons with considerably more experience will perform mini-parathyroid surgery on every patient, even those with negative scans. Scan results are not nearly as important as surgeon experience. In fact, large studies have shown that surgeons who rely heavily on scan results have a lower cure rate.

A mini-parathyroid operation should be able to be performed through a one inch (2.5 cm) incision in most people, but this will be a slightly larger incision for people who are considerably over weight. Often, mini-parathyroid surgery does not require general, endotracheal anesthesia, but again, the experience of the surgeon is important even for the type of anesthesia used. Mini-parathyroid surgery should be able to be completed in less than 1 hour. The most experienced surgeons can routinely perform this operation in less than 20 minutes. Almost all patients undergoing a mini-parathyroid surgery should expect to be sent home from the hospital within 2.5 hours of the operation.

It is important for your surgeon to make every attempt to determine you are cured before concluding your operation. As a reminder, about 30% of people with primary hyperparathyroidism will have more than one parathyroid tumor, so the surgeon must make an effort to determine that you do not have more than one tumor. By far the best way to do this is for the surgeon to examine all four glands, but this can be very hard for inexperienced surgeons. Therefore, the more inexperienced surgeons who cannot safely and quickly find all four parathyroid glands will instead measure the amount of PTH hormone in your blood and use this measurement to estimate if you have a second tumor. This test (called intraoperative PTH assay) has a known error rate of 10 to 18%. Therefore, an operation that uses intraoperative PTH measurement to determine if you are cured (and don’t have a second parathyroid tumor) instead of actually checking the other glands will be unsuccessful operation at least 10% of the time. A number of scientific publications show that patients who have only one parathyroid gland examined and intraoperative PTH levels measured will have about 8% chance of needing another operation within 1 year, and a 15% chance of needing a second operation within 10 years. The surgeon experts behind this app find this high failure rate unacceptable and believe that the measurement of PTH levels during an operation causes as many problems as it solves and is over emphasized by surgeons with little or modest experience. As an alternative, the most experienced surgeons will typically choose to examine all four parathyroid glands at the time of the initial operation even though this is done through a very small incision (see the operation video in the Video Library). Advanced techniques (the MIRP mini-parathyroid operation) allows these surgeons to measure the amount of hormone produced by each parathyroid gland during an operation. This is very different from intra-operative PTH assay. The method of looking at all four parathyroid glands typically has a failure rate of less than 1% when performed by an expert.

Mini-parathyroid surgery is appropriate for virtually every patient with hyperparathyroidism, but the size of the operation, the duration of the operation, and the rate of complications is primarily dependent upon the skill and experience of the surgeon. The most successful surgeons will assess all four parathyroid glands so the patient has the highest chance of cure and the lowest chance of needing a second operation. This can be done in a very quick, minimally invasive fashion.

For more information on this topic: http://www.parathyroid.com/mini-surgery.htm

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