Confused About Vitamin D supplementation in relation to parathyroid disease? Expert parathyroid surgeon Dr. Boone explains…

Confused About Vitamin D supplementation in relation to parathyroid disease? Expert parathyroid surgeon Dr. Boone explains…

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Dr. Deva Boone MD, FACS,FACE

Vitamin D in Parathyroid Disease – The topic that generates the most confusion for parathyroid patients and their doctors is Vitamin D. Some of the interactions and concepts with Vitamin D are complex, but in this blog I hope to highlight a few principles that will help you understand this vitamin and its place in parathyroid disease.

Example –  Let’s review a pretty common scenario. Laura is a 54 year old woman recently told by her primary care physician, Dr. Smith, that she has low Vitamin D levels. Dr. Smith knows the importance of Vitamin D, so he prescribes the logical treatment for Vitamin D deficiency: Vitamin D supplementation. If Dr. Smith routinely checks a lot of different labs, he may even notice that Laura’s parathyroid hormone (PTH) level is a little high. Dr. Smith vaguely remembers something from his training about low Vitamin D levels leading to high PTH levels, and concludes that giving large doses of Vitamin D will fix Laura’s PTH levels in addition to her Vitamin D levels.

Common Error – Dr. Smith has just made the most common physician error that I see in treating patients with parathyroid disease. Dr. Smith means well, and a true Vitamin D deficiency can be treated with Vitamin D supplementation. Chronic Vitamin D deficiency can lead to a rise in PTH in certain circumstances. So what was the error?

To understand this, I need to back up a bit, and explain a few things about Vitamin D.

 Forms of Vitamin D – There are many different forms of Vitamin D. For our purposes, there are two forms that we need to focus on.

1.   25-hydroxyvitamin D (25-OH Vit D). This form is also called calcifediol or calcidiol – I will generally avoid using these names because they sound so much like “calcium” that it can be confusing. For the rest of the article, this will be called 25-OH Vitamin D or inactive Vitamin D. When your doctor checks your Vitamin D, this is the form that he or she is usually checking (usually not any of the other forms). It can be thought of as the inactive Vitamin D in your body. This is the form that cannot actually do much until it is converted into the active form, which brings us to…

2. 1,25-dihydroxyvitamin D (1,25-diOH Vit D). This form is the active form, and is also known as calcitriol. For the rest of the article, I will refer to this one as 1,25 Vitamin D or the active Vitamin D. This is the form that produces the effects of Vitamin D. When we talk about the role of Vitamin D in the body, we are talking about what this form does.

 Conversion from Inactive to Active Vitamin D – In your body, you have both inactive and active forms of Vitamin D. As you might guess, the inactive 25-OH needs to be converted into the active 1,25 form. This occurs in the kidneys, by a specific enzyme (it’s called 25-hydroxyvitamin D31-alpha-hydroxylase). The activity level of this enzyme determines how much inactive Vitamin D is converted to active Vitamin D. If the enzyme is sluggish, then not much Vitamin D will be activated. If the enzyme is fired up, then a lot of the inactive form will be converted to the active form. If more active form is created, then you will see more activity of Vitamin D. I will explain that further in a moment.

VitD Conversion.png

What determines the activity level of the converting enzyme?  – Here is a question with extreme importance, though many doctors do not know or have forgotten the answer: What determines the activity level of that enzyme? Or, put another way, what determines how much active Vitamin D is made? This isn’t just a question for biochemists, because the answer has consequences for every patient with parathyroid disease.

The answer is parathyroid hormone (PTH). PTH essentially “turns on” the enzyme, telling it to speed up and activate more Vitamin D. PTH is made by the parathyroid glands. If your parathyroid glands make more PTH, then more Vitamin D will be activated.

Role of active 1,25 Vitamin D  – Now we need to know what active Vitamin D (1,25 Vitamin D) actually does. There are two very important actions of 1,25 Vitamin D:

1. Increase intestinal absorption of calcium

2. Prevent loss of calcium into urine, by increasing the amount of calcium reabsorbed in the kidneys

Both of these actions serve the same purpose, to increase the amount of calcium in the blood.

Recap – Let’s recap the process we have so far: You have a bunch of inactive Vitamin D in your body, but it cannot do anything until it is activated. It has to be activated in the kidneys by a certain enzyme. That enzyme is always working, but will be sluggish until it gets a kick in the pants from PTH. Once PTH stimulates that enzyme, it churns through the inactive Vitamin D to make active Vitamin D. Active Vitamin D then helps your body increase the blood calcium levels.

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Function of Parathyroid Glands

Why is PTH in charge of this Vitamin D process? – PTH is in charge because the parathyroid glands are built to regulate calcium. In fact, that is all that the parathyroid glands do: control the calcium levels in the blood. Activating Vitamin D is one of the main ways in which PTH controls calcium levels. The parathyroid glands monitor the amount of calcium in the blood. When the blood calcium level is too low, the parathyroid glands make PTH in order to raise calcium levels. When the calcium level is too high, the parathyroid glands stop making PTH, so the calcium level will fall back down. This happens many times throughout the day, without you even realizing it, and it keeps your calcium in a very tight range – if your parathyroid glands are working normally.

How Parathyroid Tumor Affects The Process – If you have a parathyroid tumor, things are a little different. In this scenario, your overactive parathyroid gland with a tumor is no longer doing its job properly. It’s not carefully calibrating the amount of PTH production based on the current blood calcium level. Instead, it is just making PTH without any consideration to the calcium level. Even as the calcium level gets too high, it keeps making PTH. That PTH is going to continually activate the enzyme that produces active Vitamin D. Active Vitamin D is produced from inactive Vitamin D, so the more that enzyme works, the more active Vitamin D you have – and the less inactive Vitamin D you have.

You can now see why patients with parathyroid tumors have low levels of inactive Vitamin D. All of that form of Vitamin D is being converted to active Vitamin D! If you measure the levels of active Vitamin D in patients with parathyroid disease, you will find that they are usually high.

It’s worth repeating: For patients with parathyroid tumors, the level of active Vitamin D (1,25 Vitamin D) is often HIGH, because the inactive form is being converted into the active form. But this is not the form of Vitamin D that physicians generally measure. Instead, we check the inactive form.

Why is inactive Vitamin D routinely checked rather than the active form? There is a reason why we routinely check the inactive 25-OH form rather than the active 1,25 form.

Levels of the inactive form are more stable over a longer period of time. The active form tends to break down within a few hours, so you are getting a very brief snapshot of Vitamin D status. The inactive form gives a better sense of long-term Vitamin D status in most patients. For those who have normal parathyroid function, the inactive form is really all you need to measure to get a good sense of overall Vitamin D status. But for patients who have a parathyroid tumor, the inactive form is misleading.

Most patients with parathyroid disease have low levels of the inactive form, and are diagnosed with Vitamin D deficiency. If you measured the active form, you would find that most of these patients actually have high Vitamin D (but it is in the active form). It is possible to check the active form in a blood test; your doctor just needs to request the 1,25 dihydroxy Vitamin D specifically. When most doctors order Vitamin D, they will automatically get the 25-OH inactive Vitamin D.

 Back to Laura and Dr. Smith – When Dr. Smith found that Laura had a low Vitamin D, what he meant was that she had a low 25-OH Vitamin D, because that is generally what doctors are referring to when they do not specify the form. If Laura has normal parathyroid function, then her active form will also likely be low. If she has a parathyroid tumor, then it is not surprising that she has a low inactive form, because it has been converted to the active form.

Here is the mistake Dr. Smith made: he didn’t check a calcium level before prescribing Vitamin D. If he had, he would have seen that Laura’s calcium level was 10.5 mg/dl, which is high for her age. Combined with an elevated PTH level, we can be certain that Laura has primary hyperparathyroidism, usually caused by a parathyroid tumor. Her parathyroid tumor is acting inappropriately, putting out more PTH than it should be. This is causing the inactive Vitamin D to be converted to the active form. Her active form of Vitamin D is likely high, but no one has checked it.

Should Laura take Vitamin D supplements? Does she need more Vitamin D? No. Recall one of the main roles of Vitamin D: helping to raise the blood calcium levels. Her calcium is already high; she doesn’t need to make it higher. Taking Vitamin D (either D2 or D3, which are both inactive forms) will lead to even higher levels of active Vitamin D (which is already high!) and higher levels of calcium. Meanwhile, the inactive Vitamin D levels will likely remain on the low end – because as soon as it gets in, it is being converted to the active form. Laura needs her parathyroid tumor removed; she does not need Vitamin D.

In Laura’s case, her inactive Vitamin D is low because her PTH is high. The PTH is causing the Vitamin D to be low. But I mentioned earlier that a low Vitamin D could cause the PTH to be high. How do we know that Laura’s low Vitamin D is not causing her PTH elevation?

The answer is the calcium level. If someone has a true Vitamin D deficiency over a long period of time, they will have problems with absorbing calcium in the intestines, since Vitamin D is essential for that. Calcium levels will then run in the low range (usually mid 8s to low 9s in mg/dl). Because the parathyroid glands are sensitive to calcium levels, they will start making more hormone (PTH) when they sense the low calcium. In this scenario, low Vitamin D leads to low calcium, which leads to high PTH levels. If the calcium is high, then low Vitamin D cannot lead to high PTH, and we can assume that the high PTH is the cause of the low Vitamin D, not the other way around.

Another common mistake – Laura’s friend Peter sees Dr. Jones. Peter was also recently told that he had a low Vitamin D level. His physician, Dr. Jones, knew to check a calcium level, and found that it was high. She also found a high PTH. So far she is on the right track. She vaguely remembered a connection between calcium, Vitamin D, and PTH. But she incorrectly concludes that a low Vitamin D level can lead to a rise in PTH, which then raises the calcium level. This is another very common mistake I see. Dr. Jones is now under the impression that she can “treat” the high calcium with Vitamin D supplements. This logic is incorrect, because low Vitamin D causes low calcium, which then causes high PTH levels. If the calcium is high, it will suppress the parathyroid glands and cause them to stop making more PTH, regardless of what the Vitamin D level is. If the calcium is high, and the PTH is also high, then there is a problem with the parathyroid glands. Treating this with Vitamin D is not going to help, and may actually harm the patient, since Vitamin D can raise blood calcium levels that are already high.

A note on Vitamin D supplements – I will not go into whether there is a health benefit to taking Vitamin D supplements, or how much benefit there is. This issue is complicated. Many people do not need these supplements, though many also do. If you are taking Vitamin D supplements, you need to know about the risk of taking high doses. Recall that Vitamin D helps the intestines absorb calcium. High-dose Vitamin D can thus lead to elevated calcium levels. Sometimes I will review the records of a patient with high calcium levels and I will notice that the person is taking 5000 units or more of Vitamin D daily. Some can take this dose safely and have no side effects! But others will get high calcium levels. This confuses the picture and makes it hard to tell whether the high calcium is due to a parathyroid tumor or Vitamin D oversupplementation. If the PTH level is high, then the answer is clear: it is a parathyroid tumor. Patients with Vitamin D oversupplementation and high calcium will have PTH levels that are low or low normal (usually in the 10 to 35 pg/ml range). If you have high calcium and are on high-dose Vitamin D, you should stop now, for two reasons:

1. Vitamin D can raise your calcium further, which can make you feel worse.

2. Vitamin D may be the cause of the high calcium, and stopping it will correct your calcium levels. Note that it may take a few months for your Vitamin D levels to drop sufficiently to see a drop in the calcium. Also remember that if the PTH is high or high-normal, then the problem is not Vitamin D. You should stop taking Vitamin D – and then see a surgeon about getting your parathyroid tumor removed.

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Take-home message – Vitamin D exists in multiple forms, and the one that we commonly measure is the inactive 25-OH form. This is frequently low in patients with parathyroid disease, because PTH drives the conversion of the inactive form into the active form. If you are diagnosed with a Vitamin D deficiency, the first thing to do is check your calcium. If your calcium is HIGH, with a low Vitamin D, then you likely have a parathyroid tumor. You do not need to take Vitamin D – you need to check a PTH level and may need a parathyroid operation. If your calcium is LOW, with a low Vitamin D, then you should take Vitamin D supplements. When taking supplements, be wary of taking high doses without a clear indication, and if your calcium is high, stop taking the supplement.

Learn more about Dr. Deva Boone….

Dr. Deva Boone is the Medical Director of the Norman Parathyroid Center at Tampa General in Tampa, Fl.  and is one of seven expert parathyroid surgeons at the high volume center that performs 4000+ parathyroidectomies per year.  

After growing up in New Jersey, she attended Cornell University for both her undergraduate degree and medical degree. She then trained in general surgery at St. Luke’s Roosevelt Hospital Center in New York City. While there, she received several awards for research and academic performance, including the highest award for outstanding contributions to surgical education and research. Dr. Boone received additional fellowship training in endocrine surgery at NorthShore University in Chicago. Dr. Boone joined the Norman Parathyroid Center in 2014. Dr. Boone oversees clinical research efforts at NPC and published their largest series of parathyroidectomy patients (over 20,000 from our database). She enjoys surgical missions and has provided surgical care to patients in Nigeria, Myanmar, and the Dominican Republic. 

 

Parathyroid Peeps Become a Community Partner on Inspire

Parathyroid Peeps Become a Community Partner on Inspire

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We have some very exciting news about an advocacy project that we want to share with you….

Parathyroid Peeps has been invited to become a community partner on Inspire!  

We want to invite you to join us at ..

ParathyroidPeeps.inspire.com

We are joining other foundations and communities on Inspire including the National Osteoporosis Foundation, American Lung Association & Lupus Foundation of America, among many others.

Who is Inspire?  Inspire, with more than 100 national patient organization partnerships and over 1.5 million members, has created one of the largest platforms for patient engagement. Inspire is a community where patients are able to receive and provide support, share experiences and information. At the same time, Inspire provides the life science industry access to the true, authentic patient voice with the goal of accelerating medical progress.

As the mission of Parathyroid Peeps is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment, we believe Inspire provides a unique opportunity for our authentic patient voices to be heard!   Learn more here.

Here is one example of how patients’ voices accelerated research in another community:

Inspire and the Hereditary Neuropathy Foundation(HNF) collaborated to grow the Charcot-Marie Tooth (CMT) community and accelerate medical research. HNF member discussions helped researchers understand pain as a major CMT symptom as well as the type of pain and how to develop related questions and answers that would be most relevant to the CMT community. Today, pain is recognized as a very important endpoint in CMT treatment and outcome measures in clinical trials.

PARATHYROID PEEPS COMMUNITY MEMBERS ON INSPIRE WILL VALUE…

  • Patient-centric content on interesting topics related to primary hyperparathyroid disease.
  • 24/7 professional monitoring by Inspire’s Moderators to help ensure a safe and pleasant experience in the on-line community.
  • Content organized by categories so members can easily find threads that pertain to topics of interest.
  • Scheduled special event Q & A’s with medical professionals and researchers.
  • Opportunities to participate in surveys,interviews and small group engagements.
  • Ability to join other communities within Inspires 100 national patient organization partnerships and communities. This is beneficial to those who suffer from more than one condition.
  • Receiving and providing support to others going through similar experiences.
  • Anonymity, if desired, to help alleviate fears about publicly sharing details of ones health journey online.

Privacy:  Inspire encourages members to create user names that are unrelated to the patient’s actual name, and we do too. In any case, members maintain full control of how content is shared. We encourage you to carefully review Inspire’s privacy statement prior to joining to understand the differences in choosing how you will post:  Public (web), Member(Inspire platform) or Inspire friends.  Learn more here.

How is the public information that is shared in some Inspire communities potentially used?

1) Insights:Life science executives face mandates to include real world evidence and expand the role of patients in modernizing clinical trial design, determining new indications, creating outcomes measures that patients’ value and assessing treatment risks.  Learn more here.

2) Research / Clinical Trial Recruitment: Nationwide, some three-quarters of clinical trials do not meet their enrollment timelines. Inspire helps link them to patients who are looking for opportunities to participate.  Learn more here.

3) Engagement: Members may at times be invited to participate in surveys, interviews and small group engagements. Learn more here

4) Promotions: Companies and organizations may market directly to a target audience. You may opt out of receiving any condition-specific promotions that may be presented to you based on your profile information and/or the communities you join. Learn more here

Read more about  Inspire in the News  AND discover the Experts by Experience Series – a collaborative effort of the Mayo Clinic and Inspire.

We are looking forward to connecting with you in our community where patients will support one another on their journeys. At the same time, if we patients allow a candid view into our health journeys to those who are working to improve patient experiences and outcomes, free from primary research or institutional bias, we may be able to contribute to moving conversations forward that matter to us. The possibility is exciting…

Together we are better on Inspire…join us!   ParathyroidPeeps.inspire.com

 

 

 

 

 

 

Parathyroid Redux: A second surgery after 15 years

A PHPT diagnosis at 40

harvhobby2a.jpgI’m 56 years old — and it seems like another lifetime ago that I was forty, single, working a job I loved, and enjoying good health. While not especially athletic, I still participated in equestrian sports, cycling, and weights. I worked full time as a library reference department head in an academic library. Life was good!

My workplace covered twice-a-year bloodwork which proved valuable to early diagnosis. I got regular bloodwork to monitor mild anemia but otherwise nothing unusual. In the fall of 2002 though, my results came back with a new anomaly. My calcium level was slightly elevated — 10.4 (reference range 10.2). I figured it was a mistake, or a fluke, maybe I was dehydrated? I had no symptoms, so it was easy to rationalize. That spring it was just a tad higher, 10.6, so off to the doctor I went. My GP didn’t seem too concerned but sent me to both an ear/nose/throat (ENT) doctor and an endocrinologist. As you might guess, a battery of tests ensued.  While I don’t recall all of them, who could forget the 24-hour urine collection, and lugging a gallon of pee to the hospital? I’m sure more blood was taken to test parathyroid(PTH) and thyroid (TSH) hormone levels; I had a Dexascan to assess bone density; and an ultrasound of my neck was performed. The main findings were that my PTH was high, by about 30-40 points, and I had low bone density (osteopenia). Not. Good.

Bone density and PTH

You may know this already, but I’ll mention this because for me, it was a big deal. Wonky PTH levels can mess with your bone strength.  PTH does a lot of things, I suspect, but it tells the bones to release calcium, which then goes into the bloodstream. When PTH levels are normal bones maintain an optimal level of calcium. When the PTH level is too high, bones release calcium, which weakens the bones.  The released calcium goes into the bloodstream among other places, and that’s why high blood calcium is a symptom of PHPT. Another symptom which is “silent” is low bone density. There are lots of reasons you might lose bone density, but this is one of them.

So, my parathyroids are running amok

My diagnosis was PHPT and osteopenia (low bone density). Three doctors weighed in, and their advice was all over the map. My GP was skeptical that I had PHPT — it’s not a “young” person’s disease. My ENT said surgery wasn’t needed for levels this low. My endocrinologist, who in retrospect was the guy who knew his stuff, wrote polite but pointed letters to all of us explaining the professional guidelines for PHPT treatment — that at my relatively young age, with calcium likely to increase and side effects likely to worsen, surgery is indicated.

DIY Research

I was confused, if not a little freaked out, by these varied opinions. As a librarian I had research tools at my disposal — time for some DIY medicine! I obtained a book from the UPenn Libraries, entitled something like The Big Book of Parathyroid Disorders. I read it cover to cover. I also did a citation analysis to find out what universities contributed the most to the field of thyroid/parathyroid research. Fortuitously, that institution had a Thyroid Center with a patient hotline. The advice from the surgical nurse who worked the line: “Go to the best. You don’t want a surgeon that does three of these surgeries a year, you want someone who does at least fifty.” And she was quick to point out that one of the best surgeons in the country was in my backyard. At the time, Dr. Douglas Fraker at University of Pennsylvania (UPenn) had a near-100% success rate with first surgeries. He was the go-to guy for second surgeries (when the first surgery fails), and people came to him from all over the country when their first surgeries were botched.

I remember the consultation, Dr. Fraker’s confident and genial manner, and more tests. He ordered some sort of scan (nuclear?)  that localized the “problem gland” among my parathyroid glands. I made the one-hour drive down to UPenn and had the surgery. I remember post-op Dr. Fraker telling me that he had some trouble localizing the problem parathyroid gland tissue, but that the surgery was successful.  I went home the next day with a teensy scar and normal calcium levels. Within a week I was back at the gym, and for fourteen years my calcium and PTH levels remained normal. It was a textbook good outcome.

Fast forward to 2017

I continued to get regular bloodwork. In about 2015, I sort of knew something was percolating with my parathyroids. My blood calcium started to rise, and with each test I saw a slight increase in serum calcium. Finally, in 2017, it hit 10.4.  I went back to my endocrinologist in October of 2017.

It was all too familiar. We did repeats of most of the tests I had in 2002. This time my PTH level was high normal, but the Dexascan was alarming — my T-scores showed a dramatic decrease in bone density — I had osteoporosis, even in the forearm, which usually doesn’t lose density. Apparently bone-thinning in the forearm is a sign of parathyroid issues, so if they suspect you of having PHPT, they may order a Dexascan that includes the forearm in addition to hip, spine, etc.   Based on the overall picture the tests revealed, a recurrence of PHPT was suspected.

But this time it was a bit more complicated. A nuclear scan and an ultrasound failed to reveal an area of concern or localized tumor. Second surgeries are tough, in part because there is scar tissue from the first surgery that obscures the structures of the neck.  Surgeons don’t like to just “go in and explore” the neck, in part because the vocal cords,thyroid, and the jugular vein are delicate and easily damaged.  In these cases, nuclear, ultrasound, and other scans are critical to finding the overproducing tumor’s location to aid the surgery. I was in a bind. Surgery in the absence of a known tumor could be risky, but at the same time with my osteoporosis a “wait and see” stance was risky too.

Back to UPenn

I needed to find a surgeon and as before, I contacted UPenn.  Dr. Fraker had left UPenn just a few months earlier to assume a position at Rutgers U. I immediately started my own research to find a surgeon and ultimately decided to stay locally when I learned that Dr. Rachel Kelz at UPenn was Dr. Fraker’s protege. I scheduled an appointment with her.

The consult
When I met with Dr. Kelz, I was worried — osteoporosis at 55! I had a list of questions. Over the years I’ve learned that you have to do your own homework in making health care decisions — health professionals tend to be good folks, and they want to help, but they’re busy and sometimes they have their own agenda. In my first meeting with Dr. Kelz, I tried to be tactful but asked tough questions. What is your success rate? How are your procedures/techniques different from other hospitals? Why are these procedures better? Dr. Kelz did not bat an eye to any of these questions, and she was actually very jovial. It became clear I wanted her to be my surgeon. After my “tough interview,” it was ironic that she was hesitant to recommend surgery — with repeat surgeries, it is especially important to know where to look, and my scans had turned up nothing. As a last-ditch effort to find a tumor she ordered a 4D CT scan — in a 4D scan, the 4th dimension is time. The scan allows time for the hormone to accumulate and light up the image, I think. While she didn’t refuse to consider surgery, she said “if the 4D scan shows nothing, come back and we’ll talk about the advisability of exploring the neck.”

4D CT Scan

Not many places do the 4D scan, and even with a list of hospitals that do it, calling to schedule the appointment was a challenge. No one in the scheduling pool knew what it was, and even when I arrived for the appointment, the technician seemed to be confused when I tried to get confirmation that she’d be doing a 4D scan. She was on the phone for a half-hour getting directions from someone; it took so long that while sitting on the scan table, I started to make calls to UPenn to make sure the paperwork was right. When they finally did do the scan, it was over so fast I wondered if they had captured that time dimension. I was not expecting a good result.

At last we’ve found you!

The 4D scan did it! The upper right portion of my neck showed a tiny piece of gland/tumor that appeared to be tucked behind the thyroid, presumably overproducing PTH. Dr. Kelz was able to review Dr. Fraker’s notes from over a decade before. He had removed tissue from that area, and in the scan you could even see the sharp edge where the scalpel had been, right next to the tumor. Dr. Kelz posited that there may be a second lobe of the gland that was hidden in the folds of the thyroid and missed in the first surgery. We scheduled the surgery.

A second surgery

On the day of the surgery, I was waiting in pre-op when a familiar face peered into my room. Dr. Fraker! He had returned to UPenn (returned to his former position!) and would observe at my surgery while Dr. Kelz operated. After the surgery, Dr. Kelz told me that they had found a tiny tumor/node very close to the previous surgical site. They were even able to compare the tissue removed in 2018 to the lab slide from 2002 — same tissue — so this was not a new tumor/node, it was a tiny (leftover? microscopic?) piece of the original tumor that was removed in 2002. I guess it grew oh-so-slowly and over time bumped my calcium back up. When I left the hospital, my calcium level was 8.4 and it has hovered around there ever since. My surgical scar is about the same as it was in 2002 — barely noticeable. While I was sore the first day, I recovered quickly. Two weeks after my surgery I ran in a half-marathon!

Long term

I’m taking Fosamax for osteoporosis, a tough decision since new research shows some adverse effects of Fosamax for some folks that take it. In the end, though, my endocrinologist convinced me that the low risks of these problems (which occur mostly in folks taking Fosamax more than three years) is more than offset by the risks of a broken bone. Fosamax reduces the incidence of bone breakage — so I’m on it. With any luck my bones may rebuild what was lost in the years I had a hormone imbalance.

My advice:

  • Get informed. Don’t rely solely on your doctor’s knowledge/experience. You can search the Web, but stick to the research. Be wary of anything but clinical research reports, or journals summarizing them.
  • Go to the best. This is tough, because some insurance limits where you can go. Consider asking your doctor to write a letter advocating that you go out of network, if necessary. It will be cheaper than a second surgery, and better for your quality of life.
  • Speak up! Ask questions, and don’t worry so much about offending your health professional. They’re tough, they can take it.

Thanks for reading my story, and I wish you all the very best.

raceMeet Stacey Kimmel….

Stacey worked as an academic reference librarian for many years before entering higher education administration. An avid equestrian, runner, cyclist, and writer, she occasionally posts to her blog behindthebitblog.com. She enjoys beadwork, all kinds of music, spoiling her cats, and travelling with her husband Bob.

Meet Dr. Courtney Balentine – Learn about research being done to improve diagnosis of primary hyperparathyroid disease.

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Courtney Balentine, MD, MPH
Dallas VA Hospital, Division of General Surgery
Assistant Professor, University of Texas Southwestern

 

 

 

Today we had the pleasure of chatting with Dr. Courtney Balentine about research he is leading entitled, “Failure to Diagnose Hyperparathyroidism in 10,432 Patients With Hypercalcemia: Opportunities for System-level Intervention to Increase Surgical Referrals and Cure” , Balentine CJ, Xie R, Kirklin JK, Chen H.  The research has promise for improving diagnosis of primary hyperparathyroid disease. You can read a summary of the paper here. 

We are excited for you to hear directly from Dr. Balentine about the findings and next steps.

 

 

 

An Open Letter to the Hellenic Endocrinology Society (Greece)

In October guest blogger Rochelle Lambiris, a parathyroid patient turned advocate in Greece, shared her parathyroid journey with us.  Read her full story through this link.

Rochelle is now reaching out to the Hellenic Endocrinology Society through the Open Letter below in hopes of creating change for those who suffer from primary hyperparathyroid disease.  There continues to be a lack of awareness of the symptoms and biochemical presentation of primary hyperparathyroid disease in both the patient and medical communities around the world.  Rochelle hopes that by educating and raising awareness, needless suffering can be avoided in the future.

Read and share her Open Letter,  and if so inclined, reach out to Rochelle through the contact information she has provided below to see how you too can help raise awareness of primary hyperparathyroid disease in Greece.

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OPEN LETTER TO ΕΛΛΗΝΙΚΗ ΕΝΔΟΚΡΙΝΟΛΟΓΙΚΗ ΕΤΑΙΡIA -THE HELLENIC ENDOCRINOLOGY SOCIETY

For several years you have organized the very successful “ENDOCRINE VILLAGE” in Athens where information on endocrine disorders is freely available for the public as well as tests for certain illnesses. However, up till now there has been no information regarding hyperparathyroidism and no tests either.

Hyperparathyroidism is NOT a rare disease, in fact, it is quite common.* Its incidence is difficult to ascertain because many sufferers continue their lives – often with serious symptoms – without having been tested or diagnosed.

We are NOT doctors: you are. And of course you are much more knowledgeable than the people who have….or suspect they may have….the disease. But messages similar to the following are voiced by members of patients’ groups all around the world:

“My calcium was high for years. Why wasn’t this investigated further?”

“I kept producing kidney stones and going to hospital to have them removed. Why didn’t they check me for the possibility of hyperparathyroidism?”

“Worsening osteopenia and high calcium year after year….why did nobody think to check for hyperparathyroidism?”

We are well aware that there are a multitude of potential symptoms, and that many can be attributed to the menopause, aging, or other conditions.

However, all we would like to suggest is that you take a big step forward and include a few basic tests for the possibility of hyperparathyroidism…perhaps serum calcium, PTH, and vitamin D: if all these are not feasible, maybe at least serum calcium could be tested. This would not constitute a definite diagnosis but would indicate the possibility of having the disease so further investigation could follow.  And years of potential suffering might be avoided, as well as costs to the State of multiple tests etc. over time.

Perhaps your example would be followed by other countries in the future?

Thank you for your time,

Rochelle Lambiris

Patient Advocate – HYPERPARATHYROIDISM GREECE

Facebook Link        E-mail: hyperpara.gr@gmail.com

* References

www.ncbi.nlm.nih.gov/pmc/articles/PMC4771429/  It is the third most common clinical endocrine disorder after diabetes and thyroid disease

http://www.yourhormones.info/endocrine-conditions/primary-hyperparathyroidism/ It is the third most common endocrine disorder in men and women.

Mourning lost time…

Mourning lost time…

Recently a follower posed a very interesting question that many patients cured of primary hyperparathyroid disease may not necessarily articulate but perhaps struggle with after being cured.
Screen Shot 2017-09-18 at 9.08.54 PM                                                                                                              “How can I move on and be happy that the problem is fixed and not focus on the past? I just can’t let the past go. “
No doubt there are a  broad range of emotions – anger, disbelief and/or fear, to name a few,  that we may experience as we recover if we have gone undiagnosed for many years and/or have experienced a previous failed surgery.
                                                                                                                  First, it is important to understand that it is normal to experience a full range of emotions. It can be very unsettling to come to the realization that the health care system we rely upon and in which we may have had complete faith, failed us on many levels.
                                                                                                                                                                     It can also be difficult to wrap ones head around the fact that far too many healthcare professionals do not know enough about this disease to make a swift diagnosis. In many cases, they do not properly rule out primary hyperparathyroid when their patients present with high calcium and/or blatant symptoms and often do not think to check parathyroid hormone levels early on.
                                                                                                                                                              Here are some thoughts we’ve had that have been helpful to us and have enabled us to let go of the past…
                                                                                                                                                                    1) Focus on the important lessons learned that may one day serve us or a family member. What are these important lessons?  That we cannot blindly trust our Doctors!  They are only human and are doing the best they can but at times their knowledge (and time they have to spend with us) is limited.  It is important to always do our own research and be our own health advocate. With the information that is available on the internet and a bit of discernment it is possible to make informed decisions.
                                                                                                                                                                      For example, when my husband needed a hip replacement this past year, from experience we knew we needed to research the various surgical options available. Then we knew we needed to research the surgeons who perform the specific technique and found statistics on the number of surgeries performed and outcomes. By educating ourselves we felt confident that the surgeon we selected was the right one for the type of surgery my husband elected to have.
                                                                                                                                                                   2) Realize that you are in good company if you went undiagnosed for many years. It is estimated by experts who have performed thousands of surgeries that the average patient goes undiagnosed for 8+ years. So, sadly,  our circumstances are not unique. We have yet to meet anyone who hasn’t had this disease for many years prior to a diagnosis and surgery!
                                                                                                                                                                   3) Think about the fact that if the diagnosis were made earlier (in many instances for patients this is perhaps 8 -10 years) the surgery might have been more barbaric and/or the outcome might have been worse. Surgeons continue to gain critical experience with each surgery performed. Progress is being made and techniques continue to improve over time. In my case, if I had gotten diagnosed at onset, I believe I would have had a very different surgical experience.  The internet had not yet exploded and the information I needed to make an informed decision was not readily available. Given my adenoma was attached to my vocal cord I could have easily had a very traumatic surgical experience and might have even lost my voice. Yet in 2011 it was removed by highly experienced surgeons without incident.
                                                                                                                                                                    4) If you are one who has had a failed surgery and are then subsequently cured by a second surgery, celebrate the fact that you are one of the fortunate ones who has been cured! Sometimes the scar tissue is so extensive from a previous surgery due to hours of surgical “exploration” trying to find the four glands, that the tissue becomes like cement and it becomes impossible to remove the embedded adenoma (s).
                                                                                                                                                                   5) Reflect on the sage advice that “time heals all wounds”. Early in recovery patients in Facebook support groups often report experiencing mood swings as the body adjusts to its new normal. Patients who have gone undiagnosed for many years frequently share that, more often than not,  it does take awhile for their bodies to fully heal while others experience more immediate improvement. Each patient is unique. Be kind to yourself and try to be patient, as difficult as that can be. It is OK to feel angry. I remember crying when I woke up from surgery.  I felt betrayed by the system and was mourning lost time.
                                                                                                                                                                    6) Take action to educate and advocate. While you cannot go back in time to change your own set of circumstances, each of us is in a unique position to help raise awareness and advocate for improvement in diagnosis and standards for surgical treatment so that hopefully someone else will not have to suffer.
                                                                                                                                                                    7) Look at the process as a journey rather than a means to an end. There is no question that living with high blood calcium is bad. We felt blessed that we avoided the deadly consequence of living with high calcium. This does not however, mean that high calcium hasn’t wreaked havoc on our body! Anecdotally it seems that it isn’t all that unusual for there to be an unraveling process with further work to do to reap the full benefits of surgery. Perhaps there are thyroid issues that are discovered which need to be sorted out, work required to improve bone deterioration, a few more kidney stones still to pass and/or dietary changes to be made that can significantly improve health. Read about my own discoveries here. In other words, find delight in the opportunity to become the healthiest version of yourself.
                                                                                                                                                                 We hope these tips are useful in some way. What has helped you overcome feelings of anger, fear, frustration and/or disbelief and has allowed you to let go of the past and disappointment of lost time? We would love to hear from you.

The case of Charles Martell – How far have we come?

Captain Charles Martell was the first recorded patient in North America to be diagnosed with what was considered the rare condition of hyperparathyroidism. The year was 1926.

In 1918, at 22 years of age and over six feet tall,  Charles Martell joined the Merchant Marines. In 1926, several years later, standing before Dr. Eugene DuBois, at Bellevue Hospital, New York City, he measured seven inches shorter. His legs appeared deformed and Charles reported a history of multiple fractures and disseminating pain.  Dr. DuBois referred Charles to Ward 4, Massachusetts General Hospital, Boston, a center founded by James Howard Means to research obscure medical conditions, where an honorary plaque celebrating the ethos of the new ward declared:

Patients are the primary knowledge keepers of their conditions and that they should be seen as indispensable, equal collaborators in pursuing the cause of medical research  ” for their own benefit and that of others”.

Learn more about Charles Martell in this interesting,  peer reviewed article written by Stephen Casper PhD BSc Department of Humanities and Social Sciences, Clarkson University, Potsdam, NY, through the link below. 

The Case of  Charles Martell and Ward 4 – 

So just how far have we come? Sadly, much of the language used to describe Charles’ early experiences sounds eerily similar to what patients’ experience today…. 

“He was investigated for years”.

“He underwent exploratory surgeries”.

” … it was a rare medical condition”. 

“The onset of illness was 1919. By 1923 (4 years) it had progressed to such a degree that he was forced to abandon his career”

“Nonetheless it was not until 1926 ( 7 years) that he would meet a physician who named his suffering.”

While much has been learned about hyperparathyroid disease over the last nine decades there is still much work to be done!

There are still strikingly different levels of understanding among medical professionals about this disease that isn’t so “rare”. As many physicians still seem to believe that it is, they often do not consider primary hyperparathyroidism as the root cause of patients’ symptoms (ie. brain fog, osteoporosis or kidney stones, to name a few).  Experts, on the other hand,  estimate that 1 in 50 women over the age of 50 have primary hyperparathyroid disease. (i.e., 2 % of this large population.)

Exploratory surgeries are still commonly performed, even though we know that there are better ways to go about surgically caring for patients.

Patients still lose their jobs or abandon their careers.

It is estimated that patients go undiagnosed on average, 8 years – no better track record than poor Charles.

Why?

1) Most people have never heard of their parathyroid glands nor are they aware of their critical function of regulating calcium in our bodies.

2) Although patients are treated for many of the debilitating symptoms of hyperparathyroidism for years, the root cause goes undiagnosed.

3) Patients, and too often medical professionals, are not familiar with ALL of the debilitating symptoms of the disease which can delay diagnosis.

4) Within the medical community, there is a lack of understanding as to the various biochemical presentations of hyperparathyroidism. Medical professional also may confuse whether hyperparathyroidism is Primary – resulting from one or more noncancerous adenomas, Secondary to another medical condition or Familial (FHH) /hyperplasia. Note: The majority of patients whose calcium is high have Primary hyperparathyroidism, which can be surgically cured.

5) There is no consistent standard for what the normal, age-dependent range of serum calcium should be. Experts concur that mature adults generally have calcium values in the mid 9’s and hyperparathyroid disease should be suspected if values are 10.1 or above.

Read more about our Action Plan. 

Become educated! Ask smart questions and help create change!

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