This parathyroid resource is made available for parathyroid patients who are looking for trusted parathyroid disease information. We are parathyroid patients ourselves and have been cured of our parathyroid disease (see more about us, and contribute if you want). We will give a brief overview of the different aspects of parathyroid disease and then provide links to other web sites for more information. All of the parathyroid links on this page have gone through review from several parathyroid experts (our parathyroid doctors) and are what we feel are the PARATHYROID DISEASE BEST OF THE WEB. (Updated 01/30/2005 ) |
If you are like us, you never heard of a parathyroid gland before your doctor said that you had parathyroid disease. You have four tiny parathyroid glands, all about the size of a pea. Each parathyroid gland is located on each of the four corners of the back side of another endocrine gland — the thyroid. Thus, both the thyroid gland and the four parathyroid glands are located at the base of your neck. Don't confuse the thyroid gland and the parathyroid glands--they have nothing to do with the each other except they are neighbors in the neck.
Web's best information on Parathyroid Anatomy:
http://www.parathyroid.com/parathyroid-anatomy.htm. Drawings that show the relationship between the thyroid and the parathyroid glands. Show were parathyroid glands can be found in the neck (they are not always where they are supposed to be).
The only function of the 4 parathyroid glands is to secrete a hormone (parathyroid hormone) that helps maintain the proper balance of calcium and phosphorus in your blood (and other places within your body like nerve and muscle tissues and bones). When the parathyroid glands sense that calcium levels in your blood are either too low or too high, they secrete just enough parathyroid hormone (abbreviated PTH) to restore the levels back to normal. Occasionally, one (or more) of the parathyroid glands produce too much PTH — a condition known as hyperparathyroidism. This leads to consistently high levels of calcium in your blood (known as hypercalcemia).
Calcium is the most abundant mineral in our bodies. Calcium is required for the development and health of your teeth, bones, muscles, and nerves. Calcium also helps your blood clot (you can't clot blood without it). Calcium provides the electrical impulse that allows for the transmission of signals through nerve cells and provides the signal for muscle contraction. Phosphorus (another mineral) works in tandem with calcium in many of these areas.
The parathyroid glands maintain proper levels of both calcium and phosphorus in your body by turning the secretion of parathyroid hormone (PTH) off or on, much as a thermostat controls a heating system to maintain a constant air temperature. If the calcium level gets too high, the parathyroids are supposed to turn themselves off and stop making PTH. Then, when the calcium gets a little low, the parathyroid glands are supposed to turn themselves on and make more PTH.
Normally, this balancing act works very well for our entire lives. When calcium levels in your blood fall too low, your parathyroid glands secrete the right amount of PTH to restore the balance. PTH raises calcium levels by releasing calcium from your bones and increasing the amount of calcium absorbed from your small intestine. Vitamin D is also involved in regulating the amount of calcium in your blood, but PTH helps activate Vitamin D also!
Web's best information on Parathyroid Function and Parathyroid Hormone:
Although this disease is fairly rare, approximately 50,000 Americans develop primary hyperparathyroidism each year. Hyperparathyroidism is the main disease of the parathyroid glands, and it occurs when one or more parathyroid glands become overactive and make too much parathyroid hormone PTH. Although this number sounds high (and it probably is!) we have learned that our doctors see a patient with parathyroid disease about every 7 - 10 years! Some of our doctors have never seen this disease until they diagnosed it in us. Once we were sent to an endocrinologist (not all of us were sent to an endocrinologist), we found that our endocrinologist sees about 3 - 5 new cases of parathyroid disease per year. Thus, it is not easy to find a doctor that has a LOT of experience with parathyroid disease.
Primary Hyperparathyroidism occurs in people of all ages, but the most common age is about 56. It can occur in children, but is typically found in adults. Women get parathyroid disease slightly more often than men...possibly because they go to the doctor a little more often and get their blood checked a little more often.
This section is about "Primary Hyperparathyroidism" (as opposed to "Secondary Hyperparathyroidism" which ONLY occurs in patients with kidney failure who are on dialysis... see below for more about this). Making the diagnosis of hyperparathyroidism is easy... All you need to do is look at your blood tests. The majority of people have this disease discovered in them by accident when a routine blood test found an elevated calcium level. Some had kidney stones first, or were found to have bad osteoporosis which prompted their doctor to run some blood tests.
Most people never heard of parathyroid glands until their doctor noticed a high calcium level. If you are like most of us, your doctor was probably alerted to parathyroid disease (hyperparathyroidism) when high levels of calcium showed up on routine blood tests. But because a few (even more rare) diseases and certain medications also can increase the amount of calcium in your blood, you'll receive a diagnosis of hyperparathyroidism only if blood tests show high levels of both calcium and parathyroid hormone.
By far the most common way that hyperparathyroidism is found is that a person gets some routine blood tests done by their doctor and it is noticed that their serum (blood) calcium is high. Typically, the doctor will note this, and have the patient come back in to check it again. The astute physician will also order a parathyroid hormone (PTH) level to determine if a bad parathyroid gland is the cause of the high calcium. There are two kinds of calcium in the blood that your doctor can measure...the 'regular' serum calcium (which is typically supposed to be between 8.5 and 10.2), and 'ionized calcium' which has a lower number. Many parathyroid experts believe that it is this second type of calcium (the ionized calcium) that most closely matches the severity of symptoms.
The diagnosis of primary hyperparathyroidism is quite easy. High calcium with a high PTH level... That's it, and 95% of cases can be diagnosed this easily. Sometimes it can be a little more difficult, with people having calcium levels that are in the high-normal range, while having elevated PTH levels. Or, people with high calcium levels while their PTH levels are in the high-normal range. A good endocrinologist can typically see through this.
Occasionally, a doctor will check the calcium in your urine. This is done by collecting all of your urine for 24 hours, and then the lab measures the amount of calcium you pee in 24 hours. Excreting over a certain amount tells the doctor that your body is taking calcium out of the bones, putting it into the blood, and then your kidneys are clearing it out of the blood and putting it into the urine. This tells the doctor that your calcium in the blood would actually be somewhat higher than it is--if your kidneys weren't doing such a good job of getting rid of the calcium. HOWEVER, this test is a little out-dated, and most doctors do not do this any more. The measurement of the calcium in the blood and the PTH levels in the blood are almost always all that is needed to make the diagnosis of hyperparathyroidism (overactive parathyroid disease).
Hyperparathyroidism can be asymptomatic (without symptoms), but most of the time there are symptoms. In fact, several of us thought we had no symptoms at all until we had surgery to remove one bad gland (called an adenoma--a benign tumor that makes too much hormone). Afterwards, we were able to sleep better and have considerably more energy. The symptoms can be from the elevated calcium in our blood (affecting our brains, nervous system, and muscles), the elevated calcium in our urine (causing calcification of the kidneys and forming kidney stones), with our other hormones (the calcium causing excess secretion of other hormones), our stomach / intestines / pancreas (the calcium causing GERD, reflux and other problems such as acute pancreatitis), or our bones (the parathyroid hormone takes calcium OUT of our bones). Left untreated, hyperparathyroidism will often cause additional health problems, such as high blood pressure (as many as 75% of people with hyperparathyroidism have high blood pressure due to this disease!!). Remember--this disease will not get better on its own, and if you have parathyroid symptoms, they will not go away until you have surgery. What you will learn further down on this page is that mini-surgery is now available that can cure you like it cured those of us who are putting this web site together. Parathyroid surgery does not have to be a big deal like it used to be!
It is extremely important to know that what we found out for ourselves... (and what many doctors out there don't understand)...that the severity of a patient's symptoms are NOT related to how high the calcium is. To explain this differently, it is NOT true that people with calcium levels above 11.5 have more symptoms or more severe symptoms than parathyroid patients with calcium levels of between 10.8 and 11.5. The severity of symptoms due to parathyroid disease does not correlate with the calcium level.
One other piece of information that we have learned (that many doctors don't understand) is that the calcium levels in our blood change from day to day. So a calcium level that is a little lower than it was last time you checked does NOT mean that the disease is getting better or staying the same. Calcium levels (and PTH levels) fluctuate from day to day and week to week.
Our body's store calcium in our bones... yet we need calcium to control the movement of muscles and the transmission of electrical impulses through our nerves (and brain). Parathyroid Hormone (PTH) is designed to keep the blood calcium in the normal range, and it does this by taking calcium out of the bones. So, if one of the parathyroid glands has developed a tumor (almost always benign) which keeps on making too much PTH, then this PTH is always causing the release of calcium out of the bones. Thus, the PTH directly causes osteoporosis.
Osteoporosis is a disease that causes bones to become thinner. Thin bones can break easily. Most people think of their bones as being solid like a rock. Actually, bone is living tissue, just like other parts of the body-your heart, brain, or skin, for example. Bone just happens to be a harder type of tissue. Bone is always changing. Your body keeps your bones strong and healthy by replacing old bone with new bone.
Osteoporosis causes the body to remove more bone than it replaces. This means that bones get weaker. Weak bones are more likely to break. Osteoporosis is a bone disease that is quite common, especially in older women. However, young people and men can develop osteoporosis, too.
IMPORTANT!!!!!! Many doctors will put patients on Fosamax or Actonel for their osteoporosis. It will almost always be the wrong decision, because the PTH is too powerful and the Fosamax and/or Actonel will not be able to overcome the PTH. In other words, it WONT HELP!! Several of us writing this web page were kept on Fosamax for several years while our doctor kept checking DEXA scans and our blood calcium... The calcium continued to stay high, and our bones kept the same degree of osteoporosis or got WORSE. Do NOT fall for the false hope that one of these drugs will reverse the osteoporosis and decrease your chances of surgery. The osteoporosis due to parathyroid disease will not get better until the parathyroid tumor is removed! Don't believe us??? Challenge your doctor to show you a single medical article that shows that the treatment of parathyroid patients with Fosamax or Actonel will help osteoporosis. And, have them show you the package insert which shows what the FDA has approved these drugs for... hyperparathyroidism is NOT on the list of approved uses!
http://www.parathyroid.com/osteoporosis.htmhttp://www.endocrineweb.com/osteo.html
http://www.mayoclinic.com/osteoporosis (includes a link to DEXA scanning and other bone density tests)
If you don't have symptoms and your kidneys and bones are healthy, you and your doctor may choose a wait-and-see approach. THIS IS THE OLD WAY OF THINKING!!!!!! Your doctor may say that this may be all that is needed, although your kidney function, bone health and calcium levels will need to be monitored on a regular basis. The reason they say this is because they are concerned about the risks of surgery... THE OLD TYPE OF SURGERY that includes a complete exploration and dissection of the entire neck! Now that mini-surgery is available, nearly all people are better served by getting this problem taken care of.
If your symptoms are moderate to severe or you have complications (like osteopenia, osteoporosis, kidney stones, etc), your doctor will likely recommend surgery to remove one or more parathyroid glands (parathyroidectomy). In cases where the problem is an adenoma, just the one gland will be removed. If all four glands are enlarged, your surgeon will likely remove three of them and sometimes part of the fourth.
Traditionally, parathyroid surgery has involved a long incision, exploration on both sides of the neck and general anesthesia. This is the big old-fashioned operation that requires the surgeon to make a 6 or 8 inch incision in your neck and dissect out all of the muscles, nerves, arteries, veins, as well as the thyroid and the trachea in order to locate the 4 parathyroid glands... he/she then looks at them, biopsies them, and determines which one is the big one that is making the excess hormone. But a newer technique, known as minimally invasive radioguided parathyroidectomy (MIRP), may offer a safer and less invasive approach for nearly all people with this disease. In this procedure, doctors use a radioisotope scan (sestamibi scan) to help locate a tumor or abnormal parathyroid gland prior to surgery. (note... several of us have had a MIRP procedure by Dr. James Norman at the Norman Parathyroid Clinic in Tampa, Florida. Even when the scan is negative, Dr. Norman performs a MIRP mini-operation. We strongly encourage you to read more about this procedure and this famous parathyroid surgeon by following the links below).
For the scan, you're given a very small dose of a radioactive material that's absorbed only by the overactive parathyroid gland — not healthy ones. During the operation, the surgeon uses a probe that detects radioactivity, much as a Geiger counter does. We have learned that many surgeons will say they do a mini-parathyroid operation, but they are NOT. You need to understand if they are using a probe in the operating room and doing the operation while your tumor is radioactive. Also, if you are told that you will need to stay in the hospital overnight, then you can almost guarantee that you are NOT getting a mini-parathyroid operation by an expert! If your doctor says that they need to have you under general anesthesia and you need to spend the night, then we would recommend that you find a "REAL" expert.
The entire MIRP mini-operation can usually be performed through a 1-inch incision in you neck. It takes less than an hour and generally requires local rather than general anesthesia. All of us had what is called LMA anesthesia (Its what Dr. Norman uses). This is a very light form of anesthesia where the patient is put into a light sleep using medications. The patient sleeps through the operation and wakes up within 1-2 minutes when the operation is over. No tube is put into the windpipe (trachea) and you don't need a machine to breath for you (general anesthesia requires a tube to be put into your trachea and a machine breathes for you). LMA anesthesia is now the preferred way to do MIRP mini parathyroid surgery, because it is very easy on the surgeon and absolutely fantastic for the patient! Virtually ALL patients who have a mini parathyroid operation should go home within 1 - 2 hours of the operation
We cannot overemphasize the importance of selecting an expert surgeon. Do NOT feel embarrassed about telling your family doctor or endocrinologist that you want to go to an expert and don't want to go to the local general surgeon who they referred you to. To make our point even stronger, there was a recent study published in the journal SURGERY, that asked endocrinologists what type of parathyroid surgery they would have if they needed surgery. Ninety six percent (96%) said they would have a MIRP and not the old fashioned operation. When asked if they would travel to another state to have an expert operate on them, 97.5% said YES!!!!!!!!!. Why do they expect us to go to the general surgeon down the street when they would travel to another state and get an expert to operate on them?
Remember, all surgery poses some risks. However, the risks of parathyroid operations are EXTREMELY dependent upon the experience of the surgeon! We cannot stress this enough. About 1 percent of people undergoing parathyroid surgery the OLD FASHIONED way will experience damage to the nerves controlling their vocal cords. This means you will likely talk with a whisper for the rest of your life...it can be a very bad problem! Also, between 1 percent and 5 percent of patients undergoing the OLD FASHIONED parathyroid operation will develop chronically low calcium levels because the surgeon has WRONGLY removed or destroyed ALL FOUR parathyroid glands. This is called HypOparathyroidism, and it requires treatment with large doses of calcium and vitamin D every single day. Finally, although parathyroid surgery is usually very effective, it won't cure the problem in every case. Even experts like Dr Norman will not claim 100% cure rates for all patients... There is good data that shows that the old fashioned operation performed by a general surgeon has a cure rate between 85 and 93%, while experts like Dr Norman have published cure rates between 98 and 99%. The complication rate is also much higher when this operation is performed by general surgeons instead of parathyroid experts with general surgeons having complication rates of 5-6%... WOW! The complication rate for a parathyroid operation performed by a surgeon who does AT LEAST 100 of these operations per year should be less than 1%. Those that do more than 200 per year will typically have a complication rate far below 1%. BUT... this is a RARE disease, so there are VERY FEW surgeons who have operated on 50 parathyroids in their entire life. Don't make the mistake of going to the surgeon that your family doctor or endocrinologist sends you to just because they know this doctor. FIND THE BEST DOCTOR... one that does this all the time!
For women who have gone through menopause and have signs of osteoporosis but no other symptoms, some endocrinologists used to believe that hormone replacement therapy (HRT) may be an alternative to surgery. That's because HRT was once felt to be the best way to prevent osteoporosis. However, some studies published in the Spring and Summer of 2003 have shown that HRT taken as a combination therapy — estrogen with medroxyprogesterone acetate (such as Prempro) for several years or more can increase the risk of breast cancer as well as heart attacks in these woman. HRT also increases your risk of blood clots and gallbladder and heart diseases. All combination HRT regimens can cause irregular vaginal bleeding, particularly during the first year of use. Further study is needed to determine to what extent estrogen-only therapy increases your risk of breast cancer. The long-term benefits of HRT are therefore under intense scrutiny. So, it looks like a mini-parathyroid operation that takes 30 minutes or so will be a better choice than years of hormone pills that may cause other problems.
Hyperparathyroidism poses a long-term threat to your bones — and your general health. The more PTH the parathyroids produce, the more calcium your bones lose. This is a function of how LONG the problem has been going on, and how long you leave it without getting it fixed. The result may be osteoporosis. This condition can make bones so brittle and weak that even small stresses such as bending over or coughing can cause a fracture.
Because your body tries to compensate for excess calcium by excreting more of the mineral in your urine, you are also at risk of kidney damage or kidney stones.
These stones can occur when calcium and other substances in your urine form crystals on the inner surfaces of your kidneys. Over time the crystals may combine to create a stone. Sometimes the stone breaks off and passes into the ureter and travels to your bladder...this is VERY painful. Stones also increase the risk of kidney damage, bleeding and infection.High blood levels of calcium stimulate your stomach to produce more acid, which makes it more likely you'll develop peptic ulcers. In fact, one of the most common symptoms is GERD (gastric acid reflux). Having hyperparathyroidism also increases your risk of pancreatitis — an inflammation of your pancreas which carries a death rate of about 25 percent depending on its severity.
The majority of people with hyperparathyroidism will have high blood pressure. Those that do not, have a high chance of developing high blood pressure. HOWEVER, it is important to know, that once the parathyroid problem is fixed, the high blood pressure will usually get better, or go away all together!
THE BIGGEST PROBLEM with doing nothing and just watching the hyperparathyroidism is that you may be missing out on a lot of life's enjoyment! The high calcium levels cause MANY symptoms like being tired, loss of energy, irritability, etc, etc. Getting the parathyroid problem fixed gives most people a new outlook on life... they don't realize that they have a hormone and mineral imbalance that is keeping them from enjoying life. THIS IS THE REASON WE HAVE SPENT TIME MAKING THIS WEB SITE... SO OTHERS KNOW THAT THEY STAND A VERY GOOD CHANCE OF HAVING A BETTER AND MORE FULFILLING LIFE WHEN THIS PARATHYROID PROBLEM IS FIXED! Having a MIRP by an expert such as Dr Norman can be a very simple, straightforward 25 minute procedure that can change your life!
Parathyroid cancer is so rare that we are not going to address it. Less than 1 in 1000 patients with a parathyroid problem has parathyroid cancer... so don't worry about it. Follow this link if you want to read more.
Secondary hyperparathyroidism ONLY occurs in patients with kidney failure. This entire web page is about PRIMARY hyperparathyroidism). Secondary parathyroid disease happens when patients have kidney failure have to go on dialysis, then the kidneys can't control the calcium and phosphorus in the blood. When these two elements are not controlled, the NORMAL parathyroid glands try to fix it and they make a lot of PTH. Thus, ALL FOUR parathyroid glands can become really large in patients with renal failure. Secondary hyperparathyroidism is much less common than primary hyperparathyroidism (primary parathyroidism is what we all have...and what the rest of this web page is all about).
In cases of secondary hyperparathyroidism, the first goal is to treat the underlying problem--hopefully with a kidney transplant. Sometimes, an operation is required for secondary hyperparathyroidism, but NOT all patients with this need an operation... in contrast to primary hyperparathyroidism where almost everybody should have an operation. This is all we will say about secondary hyperparathyroidism... we do not want to confuse people. If you are not on dialysis 3 times a week for a year or more, then this is not your problem... read the rest of this web page and forget this section!
Our experience is this:
We are in the process of putting a page online that will allow other
parathyroid patients to tell their story. We will have one primary rule... no
names. No patient names, and no doctor's names.