Online Health Chat with Leila Khan, MD

August 28, 2015


Disorders related to abnormal levels of calcium, such as kidney stones, hypocalcemia, Vitamin D deficiency, hyperparathyroidism and osteoporosis, can have devastating effects on your health and well-being. Proper diagnosis and treatment are key to managing these conditions and will help to control symptoms and decrease the risk of other related complex problems. Join our experts today as they discuss the ins and outs of parathyroid and calcium disorders

About the Speakers

Leila Khan, MD, is a specialist in the Endocrine Calcium Clinic and a staff physician in the Endocrinology & Metabolism Institute. She is board certified in Internal Medicine and Endocrinology, Diabetes & Metabolism. She graduated from medical school in 2004 from the University of Maryland, completed an internal medicine residency and was chief resident at Hershey Medical Center. She went on to complete her fellowship in endocrinology at the University of Pittsburgh. Dr. Khan’s specialty interests include diabetes, hypercalcemia, osteopenia, parathyroid and calcium disorders, and Vitamin D deficiency.

Let’s begin with the questions.

Basic Beginnings

Nugee: I had a lobectomy of my thyroid in 2008. How do I know if my parathyroid glands are still working? Thank you.

Cleveland Clinic Physician: If your calcium is fine (and not low), you have working parathyroid glands.

robtoby: Thanks for the previous answer to my question. What is primary hyperparathyroidism?

Leila_Khan,_MD: Primary hyperparathyroidism is when you are making too much PTH hormone and calcium values increase.

Condition Concerns

gilucy: My son has hypercalcemia and has undergone standard scanning testing for parathyroid adenoma; none of the testing revealed any abnormalities. Consequently, it was recommended he undergo genetic testing for familial hypocalciuric hypercalcemia. He was found to have a mutation in the CASR gene that is associated with this condition. Although it is considered a benign condition, we are concerned about the long-term effects of hypercalcemia on kidney function and bone metabolism. He has osteopenia of the spine and wrist as well. Can you offer us any updates or recommendations on this condition?

Leila_Khan,_MD: Good afternoon. Thanks for joining the chat. The good news is that FHH, or the condition you describe, almost never has long-term effects since it is considered benign. Kidney function should remain stable, and bone metabolism should also be okay. Your son does not need any treatment for this, and, really, the most important issue about the condition is that he should never be scheduled for parathyroid surgery since surgery will not correct the high calcium and is unnecessary. I know it is difficult when a child gets a diagnosis, but this one does not have negative ramifications nor does it require intervention.

fjpor: I had a parathyroid adenoma removed in 1981. A search back into old records revealed that my calcium level in lab results has been high for more than 10 years with no notice. Also, my younger sister also had the same surgery and continues to have some abnormal tests. My questions are: Does hyperparathyroidism have predisposition to be a familial problem and how often should testing be done after removal of – in our cases – one of the four parathyroids. Is this something that should be listed on a "family illness" to be passed down to future generations for checks.

Cleveland Clinic Physician: Hyperparathyroidism can run in families. Is your condition cured? If your sister continues to have high calcium despite parathyroid surgery, then you should be screened for another condition called FHH (familial hypocalciuric hypercalcemia). I would suggest doing this under the care of an endocrinologist/bone specialist.

loveitaly: Does parathyroid disorder deal with hypothyroidism/neurologic hypothyroidism, which alters the hormonal cycle and consequently, makes the person more prone to have seizures? My daughter is a young lady with developmental disabilities, who has had a seizure disorder since she was born. She is now 33 years old.  Eleven years ago she developed hypothyroidism, just like my husband has (her father). But because of her neurological condition, the endocrinologist says her hypothyroidism is partly neurological and not totally hereditary. It alters her hormonal cycle, which makes her have more seizures at that time. It is almost impossible to get the specialists to communicate with one another. She takes thyroid medication, seizure medications and uses compound topical natural progesterone. Do you have any suggestions or input? I really would appreciate it. Her doctors are excellent, but she would be much better treated if there was communication among them.

Cleveland Clinic Physician: I am not sure if I understand your question correctly. Parathyroid disease and hypothyroidism are usually not related. I hope that helps.

Surgical Notes

Za4ck13: If the parathyroid hormone (PTH) is high and blood calcium is high, is there anything that can be done beside surgery? Please explain Cleveland Clinic's normal surgical procedure for parathyroid surgery. Do you examine all four parathyroid glands to make sure there isn't a second one putting out too much PTH? What size incision is common? What is the length of most surgeries?

Cleveland Clinic Physician: Yes. It depends on the complications and other factors. At the Clinic, patients will meet the surgeons via an office visit. All four glands are examined. The size of the incision depends on the number of diseased glands suspected. Most folks are out of the hospital in 36 to 48 hours.

Debbie284: My calcium levels were in the upper range, hitting 10.5 at one time, but my PTH has never been out of range. I quit taking my calcium supplement and eating any foods that had high calcium content, and I quit taking my Vitamin D supplements, (prescribed for low levels). I had a sestamibi scan and it showed one parathyroid with an adenoma. They refused to do the surgery since my PTH has never been out of range and since I am able to get my calcium levels back in the middle of the range. Do I need to get another opinion?

Cleveland Clinic Physician: I think you do. It sounds like you have primary hyperparathyroidism. PTH levels are often normal and surgery is curative and, therefore, recommended as the first line treatment. It would be worthwhile to have another opinion.

Za4ck13: Where are surgeries done? Is there an overnight stay? How long does it take to get appointment to see a surgeon? How long after the surgeon's appointment is surgery scheduled?

Cleveland Clinic Physician: Surgeries are done at Main Campus or regional Cleveland Clinic centers. The surgeons can get you in soon, within a few weeks. In uncomplicated cases (if you have no major medical problems), you can have the surgery done in one to two weeks after the meeting. Most folks stay 24 to 48 hours after the surgery.

Diagnostic Details

Za4ck13: Do you use sestamibi scans? For what purpose do you use them? Do you use the sestamibi scans to determine if you need to operate or where to operate?

Cleveland Clinic Physician: Yes. We use them to identify the abnormal gland. The scans are often (but not always) helpful to determine where to operate. Sometimes, patients with known disease have negative scans. These individuals then usually undergo parathyroid gland exploration, which enables the surgeon to visually identify which gland is a problem.

nursey1: Do you recommend any medications or supplements while waiting years for surgery? What are your feelings about taking a medication like alendronate while waiting years for surgery? What tests do you do to find a missing gland? I have had a sestamibi scan, ultrasound and 3D CT scan.

Cleveland Clinic Physician: Medications are usually offered depending on complications. If bone loss occurs, bisphosphonates such as alendronate are good options and can protect the bone from further parathyroid-induced bone loss. Tests include sestamibi scan, ultrasounds and SPECT CT. We have had instances where scans deemed negative, when repeated here turn positive. If none identify the diseased gland, you are still a candidate for surgery. The surgeon then visually explores your glands to identify which one is a problem.

Marie89: When an "asymptomatic" patient is quite ill with the vague symptoms of primary hyperparathyroidism (pHPT) but over 50, under what criteria may a doctor wish to refer for surgery? Symptoms that I am thinking of include anxiety, depression (such that it requires psychiatric medication), poor focus, forgetfulness/memory loss (job performance affected), moodiness, poor sleep quality (sleep all night but wake up feeling exhausted, may start to nod off while driving), muscle aches (to the bone, patient may require pain management therapies), blurry vision, susceptibility to illness (e.g., a cold always turns into bronchitis requiring an inhaler), malaise, and so on.

Leila_Khan,_MD: The symptoms you describe can be from a variety of conditions. I would have bone labs checked (PTH, calcium/albumin, ionized calcium, Vitamin D level) and discuss further with an endocrinologist to see if there is biochemical evidence for underlying primary hyperparathyroidism. If there is biochemical evidence, these symptoms you describe can be from underlying primary hyperparathyroidism. If there is no evidence, these symptoms are most likely from another condition.

nursey1: If you have had parathyroid surgery and have a missing gland, what other tests other than sestamibi scan, ultrasounds and CT could be done to find the missing gland. I have had all of these a couple of times since failed surgery. Symptoms, especially the pain, are increasing greatly and I am looking for all possible alternatives.

Cleveland Clinic Physician: SPECT CT may be a helpful additional test, if it's not already been done. Other individuals usually undergo parathyroid gland exploration with a very experienced surgeon. Our surgeons have many times been able to identify the diseased gland visually.

nursey: If you have had a failed parathyroid surgery due to a missing adenoma, can you suggest anything other than a repeat sestamibi scan and ultrasound to try and find the missing gland? I have also had a 3D CT scan. Also, I would like to hear your thoughts on taking or not taking Vitamin D supplements when you have hyperparathyroidism.

Leila_Khan,_MD: The key to finding the adenoma is an excellent surgeon. I would absolutely encourage you to see an endocrine surgeon who does several parathyroid cases per week who often knows where to look. Imaging can also be helpful, too. I wholeheartedly recommend our endocrine surgery colleagues here at Cleveland Clinic. Regarding Vitamin D supplements, low doses are usually fine. There have been some nice published cases regarding the safety of this. I usually prescribe 1000 IU D3 daily even in the setting of hyperparathyroidism. However, that being said, close monitoring is essential. This monitoring would be of both blood levels of calcium and 24-hour levels of urine calcium.

Rlubischer: I am a 69-year-old female. I have been diagnosed as having secondary. hyperparathyroidism. My recent PTH is 138. My blood calcium level has been slowly climbing to 10.2. I have had two major fractures in the past three years and have osteopenia. My legs and arms are very painful, and now some of my joints are extremely painful. My doctor does not see a need to do a scan to check the parathyroid glands. Instead, they do a routine blood work that shows nothing abnormal. I continue to feel poorly with no improvement. Could I have primary hyperparathyroidism?

Cleveland Clinic Physician: It would be hard to say with the information you provided. Low Vitamin D levels can raise your parathyroid levels. Routine blood work is more sensitive than scans for detecting primary and other forms of hyperparathyroidism. In other words, scans can be negative even when you have disease (but blood work is positive most often). Therefore, scans are not used to diagnosed /identify the disease.

KMO: Individuals with normocalcemic hyperparathyroidism or normohormonal hyperparathyroidism seem to have great difficulty in getting a proper diagnosis and surgery. At Cleveland Clinic, what tests are used to arrive at a diagnosis?

Cleveland Clinic Physician: Your observation is correct. The difficulty occurs because the normocalcemic hyperparathyroidism (NCPT) may still be a very early part of the disease process, and one may not need surgery immediately. There are other conditions that may mimic NCPT, which might need to be ruled out. It may be best to work with an endocrinologist having a specific interest in this field.

Medicinal Purposes

Valpat: I had parathyroid surgery in early 2014 after my serum calcium shot to 11.5. One adenoma was removed, and Dr. Jim Norman examined the other three, which were fine. My calcium and PTH have consistently tested normal since then. In fact, my PTH has never been high. This year, my bone density has worsened from -3.5 to -3.8, and my endocrinologist is encouraging the teriparatide Forteo due to my having severe reflux with laryngospasms and a mild autoimmune issue, which make bisphosphonates and denosumab less than desirable options. First, any comment about why my density would continue to nosedive after parathyroid surgery (thyroid labs are normal)? Second, what is the risk of developing additional parathyroid adenomas if I take Forteo? Thank you.

Cleveland Clinic Physician: Great questions! It is possible that your bone density is declining due to osteoporosis or another non-parathyroid cause of bone loss. This is not uncommon. Forteo is a great option and it does not cause an increased risk of parathyroid adenomas.

Valpat: Some research has been conducted regarding an intermittent dosage of Forteo, like Monday-Wednesday-Friday injections, to minimize hypercalcemia and hypercalciuria, should they develop while on this medication. What is your thought about this option to deal with this potential side effect?

Cleveland Clinic Physician: This is a long discussion beyond the scope of this chat, but in one line, yes, I think that this is a viable option.

tkellman: What are your thoughts on using Natpara to treat hypoparathyroidism? Are there any concerns that you have about younger patients (i.e., late 20s and older) using it?

Leila_Khan,_MD: It appears to be a good treatment option for many. I have started to prescribe it for those with high pill volume for underlying hypoparathyroidism and for those with uncontrolled hypoparathyroidism. There have been no concerns to date regarding adult individuals and age starting it to my knowledge. It is not indicated at this time for pediatric patients.

Xomue: I have osteoporosis and thyroid problems. I was given several 24-hour urine tests to determine how much calcium is being "leaked" into my kidney. It was very high (600 on one test). I was told I had hypercalcuria and that I should consider taking a diuretic so that I wouldn't get kidney stones. I did not take the drug because other, more monumental health issues developed. That was several years ago. I am a 75-year-old woman. I have no history of kidney stones. Do you recommend diuretics for your patients in similar circumstances?

Leila_Khan,_MD: Diuretics can be useful when a 24-hour urine test reveals high urine calcium values.

tkellman: Do you have a preferred diuretic that you use to treat hypercalcuria in hypoparathyroidism patients? Thank you.

Cleveland Clinic Physician: Chlorthalidone or HCTZ both work well.

Hormone Highlights

robtoby: I have had a history over the past several years of a few kidney stones (although NO new ones have been produced over that period). I passed one in 2007 and had two blasted via lithotripsy in 2008 and 2009. My nephrologist put me on 2000 IU of Vitamin D because that level was low and my PTH level was high. A year after that, the Vitamin D level was OK and so was the PTH level. However, over the past year now, the Vitamin D level is still OK (39), but my PTH is still high (85). My urologist wants me to see an endocrinologist to determine why the PTH is still elevated. Do you have any other suggestions or should I just see what the endocrinologist has to say (my appointment is this coming Wednesday)? Thank you.

Cleveland Clinic Physician: I agree that seeing an endocrinologist is a good idea. You may have primary hyperparathyroidism and the endocrinologist can help you evaluate that.

eatveggies: Two  years ago, I had a parathyroidectomy (one enlarged gland) with intraoperative PTH monitoring, along with half my thyroid gland removed because it contained a large (indeterminate on biopsy) nodule. The nodule and the enlarged parathyroid gland were on the same side, and both were non-cancerous. Prior to the surgery, my calcium levels had been in the high normal range (10.2, 10.3) for many years, and just before surgery, it was 11.1. After surgery, my calcium level, checked every six months, was 9.5, but the most recent lab result was 9.8. The endocrine surgeon (out of state) told me to have a PTH level done IF my calcium level ever went above 9.8 (due to my history of "high normal" results). My local endocrinologist says the PTH levels aren't that reliable and even if I did have a diseased parathyroid gland, they take many years to develop, so she would wait. What to do? Also, should I be taking supplemental calcium now (no osteoporosis, mild, stable osteopenia for >20 years)?

Leila_Khan,_MD: I agree with your endocrine surgeon. You should get your calcium checked yearly. If it's high normal, it should be checked with 24 Vitamin D and PTH.
Regarding calcium, recommendations are for 1200 calcium per day in divided doses (600 mg tablets twice daily) or via food in three to four servings/day.

PTHhelp: I'm a white male in my late 40s who was diagnosed with low bone density four years ago (I'm 5'10", 145 lbs.). I've seen two endocrinologists at two major teaching hospitals in Boston. My PTH has been as high as 130 and was 75 two weeks ago. My serum and urine calcium have never been abnormal (calcium 9.3 two weeks ago). Neither of the endocrinologists has been able to biochemically diagnose a parathyroid adenoma, and two ultrasounds and a sestamibi scan were all negative. The bone density in my spine decreased at my last DXA scan in December. One of the endocrinologists wants me to have a 4D CT, but I'd rather not expose myself to even more radiation. They suggest 4D MRI as an alternative. The other endocrinologist wants me to consider calcitriol to see if my PTH decreases while maintaining normal calcium. I've been taking between 5,000 and 7,000 iu of Vitamin D3/day for at least the past four years. Two weeks ago my 25 OH Vitamin D level was 33. Can you offer me any advice? Thank you.

Leila_Khan,_MD: Yours is an interesting case. I would make sure that the PTH is not high from low intake of calcium or Vitamin D. This can be easily diagnosed with a low urine calcium value in a 24-hour urine collection. If this is the underlying issue, you can increase calcium/Vitamin D supplementation, and your PTH should decrease. Your D level is on the lower side so I would discuss increasing it with your doctor. The urine calcium value may also be low causing the PTH to be high. If your bone density is overall stable and you have never fractured, I would not be too overly concerned. Lastly, there is a condition with high PTH and normal serum calcium called normocalcemic hyperparathyroidism. This can be what is going on. Yearly monitoring is key, and I would get monitored quite a bit before jumping into any surgical intervention.

teerak: I am 60 and appear to have normocalcemic primary hyperparathyroidism – normal calcium and Vitamin D, PTH 172. My symptoms include fatigue, poor sleep, osteoporosis, irritability, depression, easily stressed, poor memory and concentration, blurred vision (before and after cataract surgery), etc. I am currently taking 40,000 i.u. per week to see if it affects the other levels – also more labs. Any suggestions you have are welcome.

Leila_Khan,_MD: Please have your doctor check your 24-hour urine calcium to ensure that high PTH values are not related to low calcium intake.

Symptoms and Treatments

Skylark: I had a successful parathyroidectomy in 2009 at Cleveland Clinic. What follow-up care should I have and what type of doctor should I see? Do I continued taking the calcium as prescribed after the surgery? I am age 60 and also have borderline osteoporosis and a GFR of 51. I live out of state so would probably seek routine care locally.

Leila_Khan,_MD: Good afternoon. Thanks for joining the chat. You should have your calcium values checked yearly by your primary care physician. If your calcium values start trending upward, you should return to endocrinology. The borderline osteoporosis is likely improving since you had parathyroid surgery, but if it is not, you should again see endocrinology to discuss bone health in case you need an osteoporosis medication. With a GFR of 51, there are several safe treatment options for you if needed.

vinodaraosharath: I have been suffering with hair loss, weight loss, memory loss and decreased hair growth for the past five years, and my question is: are the above mentioned things symptoms for a thyroid disorder?

Cleveland Clinic Physician: Yes. These symptoms could be related to your thyroid. Tests can easily confirm the problem.

archana0912: I found I have a low body temperature but I've been feeling feverish for the past two days. I also have a thyroid problem. I had a blood test and my thyroid was 8.45, and it should not be more than approximately 4.3. I have been taking medicines for the last 10 days. Is there any relationship between my low body temperature and my thyroid problem? How can I cure it? Currently, I am taking calci-alpha and thyroxin tablets Eltroxin 25mg. Should I increase the mgs of my tablets? Please advise me.

Leila_Khan,_MD: I would need labs and more information before being able to administer a treatment plan for you. Please discuss this further with your endocrinologist. Low body temperature and thyroid disease may or may not be related.

Relating to Osteoporosis

Lstrand: Are there any new treatments for osteoporosis?

Leila_Khan,_MD: There are several new treatments coming in the next few months. Stay tuned!

KMO: When monitoring osteoporosis progression, which chemical bone marker do you use first? How often should that be repeated?

Leila_Khan,_MD: I usually check serum NTX yearly, but this varies from institution to institution and provider to provider.

cynarns3: A doctor told me high levels of Synthroid could contribute to osteoporosis. Is this true?

Leila_Khan,_MD: Yes, it is true.

mimsy111: If I have a lumbar compression fracture, am I automatically considered to have osteoporosis even though my bone scans show osteopenia?

Leila_Khan,_MD: Yes. If a fragility fracture is found, you have osteoporosis no matter what the DXA reveals.

Nugee: Is osteoporosis a disease, glandular disorder or nutritional deficiency?
Two DXA scans show osteopenia/osteoporosis and I am 68 years old and am compared to women who are 99 and 104 years old. However, I have a small bone structure. How can I accurately be compared to women this age? Prolia shots are recommended, but I prefer natural treatment. Most of my thyroid has been removed, and I take low-dose levothyroxine. I heard about a treatment made of real thyroid gland. Please explain what this is, the cost, the side effects and where to buy it. What other options for treatment of osteoporosis are available? Thank you for your time.

Leila_Khan,_MD: DXA scans are only one indication of bone quality, and there are several parameters that need to be considered, such as history of fragility fractures, height loss, family history, concomitant high risk medications that can cause bone loss, etc.
If treatment has been encouraged and you are uncomfortable with this, I would recommend a second opinion to discuss options further. The options for treatment of osteoporosis and thyroid disease are many, and we cannot adequately address the different options in this web chat forum. Please discuss this further with your endocrinologist.

Disorders and Complications

redrose_eagle: Hello. I have been diagnosed with sarcoidosis. My general practice doctor did blood work and saw that my Vitamin D level was low. She wrote a prescription for 50,000 units of Vitamin D and said to take one a week. She stated that because I have osteoporosis in my hip and spine (from years of off and on prednisone) that I had to take it along with a calcium supplement and Fosamax to prevent further bone loss and breakage. I also have been told from other sarcoidosis patients that the Vitamin D can be harmful to those with this disease. Could you explain to me in layman's terms why sarcoidosis patients shouldn't take Vitamin D supplements and also what other recourse I may take?

Leila_Khan,_MD: Excellent question. The sarcoidosis can result in high levels of calcium. This calcium level can be further increased with Vitamin D supplementation. It sounds like your GP is treating you effectively; however, I would make sure that your GP monitors the blood calcium values with the Vitamin D supplementation and also checks your 24-hour urine to be sure that you are not urinating large amounts of calcium. High levels of calcium in the urine places you at risk for kidney stones. I would monitor both at least every three months.

asanag: Last year, I was tentatively diagnosed with sarcoidosis on the basis of a chest MRI that showed bilateral hilar adenopathy. A sarcoidosis specialist looked at my case and doubts that I have sarcoidosis at all. He thinks that the enlarged lymph nodes are the residue of a histoplasmosis infection that I must have had as a child (there is some evidence in my lungs). The only other symptom I have is a high reading for calcitriol. My question is whether I should be supplementing Vitamin D or not, given high calcitriol with normal serum calcium? Calcitriol (1.25 di-OH Vit D) 177.2 pg/mL Vitamin D, 25-Hydroxy 32.8 ng/mL L ( 30.0-100.0) 01.
Leila_Khan,_MD: Your Vitamin D looks replete. I would discuss your case with a sarcoidosis specialist (usually pulmonary or rheumatology) and figure out if you have sarcoidosis or not. I am an endocrinologist and do not make this diagnosis routinely. Once the issue of sarcoidosis is sorted through, I would then figure out how much Vitamin D you need. The Vitamin D supplementation needs to be given cautiously at this point since it can result in higher levels of calcium.

ab: I have chronic kidney disease-mineral and bone disorder (CKD-MBD) with secondary hyperparathyroidism and have had problems with pain in many of my joints and muscles for the past two to three years. The pain is especially bad in my ankle and heel. My podiatrist did an MRI of my foot and found degenerative bone marrow edema and mild arthritis in two spots, one in the heel and one in my ankle. The pain is so bad that I have to wear an unloading boot just about every time I have to walk. I also have bad, burning pain in my hips that burns down into the groin area. I had one doctor diagnose me with fibromyalgia, but I feel like there is more to it. My question for you is could this pain be related to my CKD-MBD and the secondary hyperparathyroidism?

Leila_Khan,_MD: It's hard to know the answer just by your question and without examining you. Secondary hyperparathyroidism usually does not result in joint/muscle pain, and if you were found to have degenerative joint disease in your foot, that is more likely the cause. The burning pain in your hips does not sound to me like fibromyalgia. I would definitely recommend a second opinion. I doubt that the burning is from secondary hyperparathyroidism, and I would be sure that other causes are explored. One easy way to know whether secondary hyperparathyroidism is the cause is by resolution of symptoms with treatment of the hyperparathyroidism. You should be on treatment for this, and if symptoms do not improve, other causes need to be explored. Good luck.

Nugee: In 2008, I had a lobectomy of my thyroid due to a benign neoplasm. I began 50 mcg of levothyroxine. Two DXA scans show osteopenia and osteoporosis, and I have lost 1" in height. Injections of Prolia are recommended, however, I prefer nutrition and exercise therapy. A 5/14/2015 blood test revealed hemoglobin A1c was 5.6, and LDL cholesterol is 135, HDL 57, Trig. 43. Could the rise in these numbers be connected with endocrine function? What tests are available to locate the cause of these symptoms?
Thank you.

Leila_Khan,_MD: I very much doubt that the thyroid disease, the bone disease and the A1c are interrelated. I suspect that when you started seeing an endocrinologist for your thyroid, he/she then looked for these other conditions to do a very thorough evaluation and noted the issues above. I would strongly consider treatment that your specialist prescribes to minimize a long-term complication. Seek a second opinion if you do not feel comfortable with your specialist's recommendation. Good diet/nutrition are excellent, but often cannot completely resolve all underlying medical problems.
The exact causes of osteoporosis, diabetes and thyroid disease are too numerous to list here, and many of the mechanisms are unknown.

dzilisch: I have sarcoidosis (diagnosed 2/2010) with Vitamin D dysregulation, hypercalciuria (198-240) and kidney disease (Stage 2/3 diagnosed 10/2014).
My labs show the following: normal serum calcium levels (9.4 with 400IU of Vitamin D3, otherwise 9.7 - 10.0) and mildly high ionized calcium (1.28 with 400IU of Vitamin D3; 1.26 without) and elevated PTH levels (93-111). A nuclear (sestamibi) scan was negative. Vitamin D/D1,25 dysregulation showed improvement (21.6/39) one month after a short trial of prednisone in 2014. PTH was 99 at that time. Currently, Vitamin D is 23.6 and D1,25 is 67 on 400IU D3 supplementation without prednisone. My PTH is 96.
I realize chronic kidney disease (CKD) can cause HPT, but wonder if Vitamin D dysregulation can also cause (secondary) hyperparathyroidism? And in the case of secondary hyperparathyroidism, can the hyperplastic glands return to normal if the underlying disease process improves? Finally, in hopes of correcting my calcium metabolism issues, what are the recommended treatment(s) for sarcoidosis Vitamin D dysregulation? Thanks.

Leila_Khan,_MD: There are several causes of hyperparathyroidism. One reason can be from CKD, another can be from low intake of calcium/D, but this list is long. Regarding the sarcoidosis, there are several treatments for this, however, I usually do not prescribe treatment since these cases go to rheumatology or pulmonary medicine specialists. I would discuss your condition further with your specialist.

Seasoned Supplementation

KimWar110: If I have a medical condition concerning my parathyroid. What is the amount of supplemental calcium necessary to help this issue?

Leila_Khan,_MD: It depends on what type of parathyroid condition you have. I need more specifics on the disease to answer your question.

Chesney: Why do they want you to take 2000 units of Vitamin D3 when the calcium in your blood test is already too high (over 11) ? Is there any way to avoid surgery?

Cleveland Clinic Physician: Gentle Vitamin D replacement may actually help the condition by lowering PTH levels. One must watch calcium carefully, of course, to make sure it doesn't elevate. Surgery offers the only potential for cure, unfortunately. There are medical options available, depending on the complications.


That is all the time we have for questions today. Thank you, Leila Khan, MD, for taking time to educate us about parathyroid and calcium disorders.

On behalf of Cleveland Clinic, we want to thank you for attending our online health chat. We hope you found it to be helpful and informative. If you would like to learn more about the benefits of choosing Cleveland Clinic for your health concerns, please visit us online at

Leila_Khan,_MD: Thank you for all your questions.

mimsy111: Thank you.

Gail Ann: Even though I had no question to submit, I found this web chat to be very informative and interesting. The doctors answered the questions with expertise and clarity. Thank you for the time you took out of your busy schedules to answer the participants' questions.

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Within Cleveland Clinic’s Department of Endocrinology, the Endocrine Calcium Clinic addresses problems associated with the regulation of the body's bone, mineral and hormone functions. Important minerals such as calcium, phosphorus and magnesium are critical for the body’s normal functioning.

Thorough evaluations at the Endocrine Calcium Clinic include DXA bone density scans performed and interpreted by certified specialists. An on-site laboratory is equipped to test markers of bone turnover, mineral and nutrient deficiencies, as well as hormonal abnormalities. An infusion center allows patients to receive injections or infusions of up-to-date therapies.

Cleveland Clinic’s endocrinology services are ranked No. 3 in the nation by U.S. News & World Report. The Endocrine Calcium Clinic consists of a team of experts that specialize in the treatment of a number of common and rare calcium disorders, as well as a unique focus on bone and mineral regulation problems associated with the surgical treatment of obesity. Ancillary facilities allow our experts to perform specialized testing not found in most medical centers, and patients are provided access to therapies using the latest forms of oral and injectable medications for many bone diseases.

Cleveland Clinic is a national leader in caring for patients with all types of calcium metabolism related disorders, from the routine to the complex. In our Endocrine Calcium Clinic, patients benefit from access to a multidisciplinary staff, the most advanced technology and streamlined evaluation and treatment of parathyroid, mineral and bone disorders.

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