13 thoughts on “Podcasts – Discussions with the Experts”

1. A great way to learn more is to listen to additional podcasts that we have posted on our website and to visit the resources listed on our website under “Connect”.

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2. Ladies, Thank you for your podcasts! Dr. Politz touched on hyperplasia of all glands but did not state what they do for this condition. Do you have any information on treatment they usually do for hyperplasia? My husband has stage four kidney disease (never on dialysis) since 2004 subsequent to complications from a left endarterectomy. Hypercalcemia in the 10’s and elevated pth since that date diagnosed with secondary at first and now tertiary hyperthyroidism treated the past 18 months with sensipar that sometimes lowers the CA into the 9’s but the pth remains elevated. Do you have any information on hyperthyroidism and relationship to CKD and whether surgery may help to alleviate this condition. Thanks

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   • We see that you asked this same/similar question on the Norman Parathyroid Center Facebook site, so hopefully their response gave you some insight. So nice you received a prompt reply.

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3. Very interesting and informative. Sadly, little is known about the parathyroid glands in the U.K. by GP’s, endocrinologists and worse surgeons. One of our so called tip top surgeons actually removed lymph nodes by mistake. This person had to fly to Florida to have it done properly but with so much scar tissue, Dr Norman was unable to remove the second bad gland. That said, what I really would like to know is, is there any other possible reason for having a raised PTH other than a growth on the gland?

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   • Thanks for your feedback – we are so happy the you found this informative! Regarding scar tissue that results from exploratory surgery – it is the worst! When we learned that the scar tissue can prevent NPC surgeons from being able to locate the adenomas during a second surgery, because the adenoma is locked into it and/or their “road map” they use to find the glands/adenomas are ruined, we cringed. That is why it is imperative to pick a surgeon wisely. We also wanted you to know that we will ask your questions about PTH during an upcoming podcast.

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4. is there any way to tell how old a parathyroid tumor is I am trying to see if this could be tied to my time in the military

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   • It is our understanding that the size of the adenoma is an indication of its age. Likewise if a person is presenting classically (high calcium, high parathyroid hormone levels and low Vitamin D) it is also an indication that the person has had the adenoma for many years. It is not uncommon for those suffering to have had their adenoma(s) go undiagnosed for an average of 8 years. You might consider requesting copies of labs results from your physician done prior to your diagnosis. Blood calcium is included in the comprehensive panel which is generally ordered as part of a physical. High blood calcium levels and/or fluctuating levels over time would likely be an indication that you were suffering from hPTH.

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5. Thanks for your post. I always have to be different from anyone else. Have you heard of someone with over normal and high end calcium with over normal and high end pth, so fluctuating, plenty of unpleasant symptoms, like nausea, gerd, tight bra feeling with no bra on, advanced osteoporosis in spine and femoral neck BUT normal Vitamin D?

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   • Yes – the most telling signs of primary hyperparathyroid disease are high calcium and high parathyroid hormone levels. Fluctuation of these values are a hallmark of the disease. Knowledgeable Drs. look at the relationship between the values and do not rule out the possibility of adenoma just because the patient does not present classically (high calcium, high pth and low Viatmin D) There is also normocalcium (normal calcium and high pth) and normohormonal (high calcium and normal pth) to consider. For more information on patient lab values may we suggest that you visit http://www.parathyroid.com. You might also consider downloading their Calcium Pro app and inserting your lab values to potentially help with a self-diagnosis and see what you learn. If you haven’t already you might like to read Sophie’s story on our website as she used the app to self-diagnose.

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6. Hi Ladies, so I am a 43 year old Male. I have all the symptoms and a Dexa scan has confirmed I have osteopenia. After 2.5 years of intense suffering ( mine is so bad that I cant work) and being dismissed by so many doctors and even family, my Kidney doctor ordered a PTH in addition to many other labs. PTH was 80 ( Normal 16-72). My calcium has been in the low 10s never exceeding 10.3
   I was then referred to an endocrinologist who did a 2nd PTH which came out 40 with calcium 10.2
   I was told I do not have hyperparathyroidism.
   My question is : would my case qualify for NORMOHORMONAL or NORMOCALCEMIC PRESENTATION?Or neither?
   In the podcast Dr. Norman says that high calcium and inappropriately normal ‘PTH would qualify. Are my calcium levels in the 10s high or are they normal.
   Thank you.
   I am suffering! If you could get the doctor or nurse or yourselves to answer, I would really appreciate it. Please help.

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   • Dear Jay – We are not associated with any particular medical center. We are simply advocates who speak from our own personal experiences of going undiagnosed and/or having difficulty getting diagnosed and then researching, selecting and self-rererring to a surgical center that does nothing but see patients with parathyroid disease. It is our understanding from the podcasts that we have hosted with expert surgeons from the Norman Parathyroid Center that serum blood calcium value over 10.0 (pushing it 10.1) are considered high for a mature adult age 30+. Most healthy mature adults have calcium values in the mid-9’s. As you have heard, it is imperative to evaluate calcium values in relation to parathyroid hormone levels to get an accurate diagnosis which you clearly understand based on how you asked your question. We have also learned through the podcasts that when calcium is elevated, one would anticipate parathyroid hormone levels to be suppressed if they were functioning normally thus pth levels would be at or near 0. The fact that you have osteopenia serves as another clue that an experienced surgeon would factor in when evaluating your case. As mentioned previously, the 3 of us all self-referred to the Norman Parathyroid Center (http://www.parathyroid.com) in order to move forward to find answers and ultimately be cured. Many patients do not realize that they can actually self-refer to a surgeon to see if they are a candidate.You might also consider joining the Hyperarathyroid UK Action 4 Change Facebook support group if you use social media. They have an upcoming Q and A with Dr. Boone from NPC on Monday, May 30th being hosted on the page as an “Live Event” where members can ask their questions. While the group’s name implies they are for folks living in the UK, it is actually more of an International support group. Another option would be to download the Calcium Pro App developed by NPC and enter your lab values. Based on how your values compared to NPC’s data the app tells you the likelihood of whether you have the disease. Prior to selecting a surgeon it is wise to become educated about the different surgical techniques as parathyroidectomies are surgeon specific. The level of experience of the surgeon effects outcomes. We offer a list of questions on our website to help people get started in developing their own list of questions to ask. Hope this information is helpful to you as you move forward in finding answers from a qualified medical professional. All our best, Barbara, Joyce and Sophie

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7. Do they know why the glands become ‘plump’ in cases of hyperplasia? Is this genetic, diet, environmental? Does it occur in more in men than women? Since it is only 2% I have a great interest as I have had 3 of 4 removed due to hyperplasia (primary hyperparathyroidism). I will be monitored by the surgical group (Bangor,Maine) for the next 2 years with blood tests every 6 months. I thoroughly enjoyed Dr. Politz podcast but would love more on hyperplasia (or a link). I was told that my use of hydrochlorothiazide actually masked my problem. This came a year after my Vit D was being monitored by my GP. I was given huge prescription doses of D. D went up and down. Finally, I was sent to an endocrinologist who noted various high calcium through the years that the GP did not reflect on because it varied in the 10’s, occasionally to the 11’s. The endocrinologist followed me for yet another year… then finally a referral, and removal of 3 glands. Thank you for the free education. It is a true gift.

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   • Thanks for listening to Dr. Politz’s podcast. Glad you found it informative. Perhaps we will be able to host another podcast or do a blog on this topic and include your questions to learn more about hyperplasia.
     In the meantime here are a couple of links:
     NIH = https://www.nlm.nih.gov/medlineplus/ency/article/001189.htm
     NPC =http://www.parathyroid.com/causes.htm
     You can learn more about Vitamin D Deficiency and its relationship to Hyperparathyroid Disease here = http://www.parathyroid.com/hyperparathyroidism-diagnosis.htm

     All our best, Barbara, Joyce and Sophie

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