What a fabulous meet-up we had this past Wednesday

Meet the Peeps… First we met Barbara J., who travelled 3 +  hours from Nevada in order to attend our meet-up in the San Francisco Bay Area. What a trooper to drive that far!   It was really wonderful getting to know her and hearing how much better she is already feeling after having her surgery in September. We are so happy that she found our website, that it provided her with information that helped her move forward with confidence and greater ease, and that she reached out to us to let us know this, all after the fact.

Next we got an update from Janet. When Janet confided to a close friend that she received a diagnosis of primary hyperparathyroid disease, after being utterly confused by her symptoms for far too many years, this friend, who is familiar with our pHPT advocacy project, exclaimed, “I know exactly who you need to meet!” After hearing our stories and exploring all her options, Janet self-referred for surgery. Now five weeks post op, Janet couldn’t be happier with the results.

Everyone present was so very grateful for improved mental clarity and health following surgery. However, we also know that sometimes other health conditions,unrelated to primary hyperparthyroid disease, need to be unravelled following surgery. For some of us these conditions existed before the pHPT started, autoimmune diseases for example. Others may have developed concurrently as a result of the pHPT (osteoporosis, stones) or independently. In other cases the problem is not evident until after recovering from surgery, for example Hashimoto’s thyroiditis is later diagnosed. So conversations turned to these topics, along with discussions related to gluten sensitivity and diet. Two and a half hours simply flew by.

We could have talked for hours, BUT we didn’t want to leave all of you out! This is why we have plans to continue our conversation with PATIENT PODCASTS… 

We are so excited to announce that these bright, interesting and resilient women will be featured on the first of many patient podcasts we intend to produce. We can’t wait for you to hear their stories! Stay tuned…

Left to Right : Barbara C., Janet, Barbara J., Sophie and Joyce  Pizza Antica, Mill Valley, California

Today we were notified on Facebook that the three of us have been “friends” for one year.  We can’t believe how quickly the year has passed and are in great awe of all that has been accomplished. Wow!

Our Mission 

One year ago today we had our first meet-up. Stories were shared, symptoms were compared, problems we experienced in trying to get diagnosed were discussed and before we knew it, the three of us were enthusiastically hatching the idea to publicly share our stories to raise awareness of primary hyperparathyroid disease and advocate for improvement in diagnosis as well as standards for surgical treatment.

We Educate

We now have this website and blog as a forum to share patient stories that has had over 8175 visitors, with 20,900 views from 69 countries. Parathyroid Peeps are active on social media with both a Facebook page and Twitter Account. We have our cute mascot Perry designed by Amy Shimm Noveshen whose mother also suffered from parathyroid disease.  We have successfully produced six podcasts with the expert surgeons from the Norman Parathyroid Center and are exceedingly grateful for the time they have dedicated to producing these with us. We are excited that additional podcasts will be forthcoming in the new year!

We Partner

Given that primary hyperparathyroid disease causes bone deterioration over time, we partnered with the Osteoporosis Community for a couple of projects. We had a two-part interview/article published on-line working with Pam Flores from Health Central and were guests on a live webinar with Dr, Lani Simpson DC, CCD, a certified clinical bone densitometrist and renowned bone health expert and author of No-Nonsense Bone Health Guide.

 We Like Meeting YOU 

We’ve met and talked with others who have suffered from parathyroid disease at our 3 Peep meet-ups as well as through phone and Skype session. Of course we have answered many people’s questions via e-mail and messaging. Meeting and talking with so many wonderful souls, has been exceptionally rewarding. We are grateful for the positive relationship that has been established with Sallie Powell who heads up Hyperparathyroid UK Action for Change and look forward to collaborating further to advance our missions.

What’s Next?  Bone Girls Club Meet-up & Escape with MORE magazine 

In just three short weeks, from November 5-8, we will be in Tucson Arizona for a “girls getaway” to  attend Escape with MORE magazine, at Miraval Resort and Spa. During this trip we will have two unique opportunities to share information about primary hyperparathyroid disease. We are pleased to be meeting up with the Bone Girls Club shortly after landing,  as it is a priority for us to connect with those who suffer from osteoporosis and those supporting them. It is important for patients to be aware that parathyroid disease can sometimes be the root cause of osteoporosis and we want to make sure those suffering have accurate information to rule out this possibility. We will have a second opportunity to present information at Miraval, and will be doing that with Dr. Deva Boone, one of the surgeons from the Norman Pararthyroid Center. We are super excited for this next great adventure and opportunity to educate, and will post updates, photos and short videos throughout our stay on Parathyroid Peeps Facebook page!

And to those of you still suffering and waiting for a diagnosis or surgery, please know that each day we think of you and send good thoughts your way.

The Parathyroid Peeps

(Authored by Barbara)

Sallie Powell resides in the UK

ABOUT SALLIE POWELL Despite a childhood blighted with 3 marriages, numerous house moves, schools, and abuse; Sallie has always remained positive; believing life’s challenges made her stronger. At 18, Sallie backpacked around Australia, New Zealand and Hawaii – she was in complete control of her life and nothing could beat her. Even at age 26 a diagnosis of hypothyroidism didn’t slow her down. However, at age 32 after a mysterious illness, she woke up deaf one morning. She has been told this was a result of the nerve ends dying.  This was the start of a long uphill battle to regain her health, with a parathyroidectomy at age 44 being the last in a series of 5 major surgeries. Primary Hyperparathyroidism DID beat her, but in the end, she fought back and won.

Now Sallie’s mission is to increase awareness of hyperparathyroidism and let people know they are not alone with their fight for a diagnosis. Support and guidance are available in an on-line FB support group she started – Hyperparathyroid UK Action4Change.  Sallie has been campaigning for the UK Guidelines for diagnosis and treatment of primary hyperparathyroid disease to be updated.  Furthermore, Sallie is working on book of poems, anecdotes and short stories she has written, as well as collected from others, who have also suffered needlessly. It is our privilege to collaborate with Sallie. 

SALLIE’S STORY – 23 August 2015

After suffering the loss of 70 % of my hearing suddenly at the age of 33 and consequently having to leave my job as a technical administrator, sell my home and move to the City of Derby with my young son in 2000; when I was diagnosed with depression I logically assumed it was because of the traumatic transition in my life the previous 18 months. My relationship had broken down and I felt pretty low. I was prescribed Seroxat (paroxetine hydrochloride). I was also prescribed Ranitidine; a histamine 2 blocker to reduce stomach acid as I had also began to experience chronic heartburn. I had studied bookkeeping for a year and began to study Art, Design & Photography over 4 years. I took a year out from my studies in 2002 due to worsening depression and anxiety. I had also developed asthma due to black mould in my home and was rehoused.

When my course finished in July 2004, I attended a short business course, then set up a small photography studio in November 2004.  I specialized in wedding photography and maintained an extremely busy schedule; in 14 months I photographed 49 weddings. 2005 passed in a blur. In 2006, I began to experience pains in my right knee. I thought it was an occupational hazard. It became so bad I couldn’t walk downstairs or get out of my car and I struggled to stand from a kneeling position; so I approached my doctors. While no root cause could be found, the pain became nearly constant and I developed a limp.

Around the same time, I experienced a medical emergency. I had to call 999 one evening due to crushing chest pains and paramedics rushed me to hospital suspecting a heart attack. I was released hours later after the pain subsided. I wasn’t informed that my blood calcium was 2.91. Note that normal range in the UK is designated as 2.25-2.5.  I began to suffer extreme fatigue during the day; I was 38 and told, “Well you are nearly 40”. I kept asking myself, whatever happened to “life begins at 40?” Maybe it was sarcasm.

Following an arthroscopy in April 2007, I began to lose enthusiasm for my business. By October my fatigue was accompanied by a loss of confidence after I had accidently deleted a memory card of unsaved wedding photographs. I was distraught and took a part time job at an electrical store believing running my business had just become too much of a burden and the cause of work related anxiety.

I was offered full time work in January 2008, however my health continued to decline within 2 months, beginning with horrifying headaches and blurred vision. I was sent to the hospital with a suspected bleed to the brain in March 2008. Years later I found out I had a blood calcium of 2.91 (US conversion 11.66). Yet again, it wasn’t mentioned, nor followed up on. Instead, I was prescribed Amlopodine, a calcium channel blocker, and Bendroflumethiazide, a thiazide diuretic, for high blood pressure. Over the coming months I began to experience mood changes; becoming quick to anger, getting involved in arguments with colleagues, my patience was very short and my memory was a little fuzzy. I sometimes became confused at the till but made light of it.

In 2009 two colleagues and I lost our jobs but appealed and were reinstated. The atmosphere was stressful but I gritted my teeth and I tried to smile through it. I became emotional, my fatigue got a lot worse and I was constantly thirsty and needing to pee. I asked my doctor if I could be diabetic. He said “no” and blamed the stresses of work. My stomach started to swell and I suffered horrendous pain before menstruation and menorrhagia. I began to get severe pain in the base of my thumbs and cramps in my fingers. More trips to my doctors and I started to get the feeling they considered me to be a hypochondriac – they suggested I join a gym, and kept asking me to complete forms for depression which included questions like, “how often did I have suicidal thoughts?” The answer was “never” – I just had pain in my hands, blurred vision, headaches, chronic thirst, a swollen abdomen and very painful periods!

By September 2009 I had joined a gym and lost weight, but still suffered from all the above symptoms. My stomach resembled a full term pregnancy and I was convinced something horrible was growing inside me and slowly killing me. I begged for a scan. It revealed fibroids and ‘at my age’, the only solution was a hysterectomy.

I had to wait until 11 March, 2010 for the surgery and it couldn’t come quick enough because I felt desperately ill by this time. I had put on the weight I had lost and was so tired I could barely stand. My back ached, my ribs hurt, and I had terrible confusion and insomnia. I fully expected the hysterectomy would be the cure.

My five day stay in the hospital was a horror story from start to finish. No one realized I had undiagnosed Hyperparathyroidism and Type 2 Diabetes and due to an intolerance of food was given IV dextrose. (Later in 2010 the Diabetes was finally diagnosed and is controlled through diet, though I suspect taking bendroflumethiazide was making me sugar intolerant.) The 2nd day after discharge I developed a hematoma on my incision site. I felt worse than ever and could barely walk. My fatigue increased as did the pain in my joints. I didn’t feel able to return to work and took 16 weeks off losing 4 weeks wages. My abdomen was still massively swollen. My memory was terrible and I still had blurred vision and headaches. I wrote to my gynaecologist asking if he may have missed a fibroid. I was informed 5 months post op that I had actually had adenomyosis. My doctor told me I had fatty liver, high cholesterol and calcification in my kidneys, but shook his head and said ‘I don’t think so’ when I asked if all my ongoing symptoms could be linked.

I changed doctors and told my new doctor all of my symptoms, expressing my distress at the pain in my hands and my right knee that had returned. I developed red spots in my fingernails and experienced painful purple swelling in my finger tips following by white numbness. I couldn’t breathe through one nostril and I felt hopeless. My new doctor told me, “Sallie, I think you are depressed. You need to get over your hysterectomy and move on”. I consulted other doctors about the pain in my hands and my fatigue. My thyroid meds were increased, then decreased and I was given Amitriptyline for insomnia (a tricyclic antidepressant used for mental disorders including major depression, bipolar, anxiety, less commonly for fibromyalgia, and insomnia)  and glucosamine sulphate for my joints.

In June 2011 I saw yet another doctor who tested me for rheumatoid arthritis. Finally a result from the hospital revealed hypercalcemia at 2.77 (U.S. conversation 11.10) and a retest with pth was requested which I only recently found out came back at 48. My pth was never discussed by my doctors. I was told to go back to my usual doctor who had been dismissing my symptoms for the last year and had told me just to “get over my hysterectomy”. Out of desperation and feeling she would dismiss me again, I decided to consult ‘Dr Google’ about elevated calcium and was directed to parathyroid.com which I read from start to finish. I knew I had Primary Hyperparathyroidism.

I printed relevant pages and took them to my doctor. I convinced her to refer me to an endocrinologist and in September 2011 my diagnosis was confirmed; I was referred for scans and to a general surgeon. When his consultant started to draw me a diagram of the parathyroid glands, I told him I had studied parathyroid.com and knew as much as I needed to and simply wanted to know how soon could I have surgery? When he wrote to me saying my calcium wasn’t high enough at 2.82 (US conversion 11.30) I consulted another doctor within the practice who knew of several patients that had failed parathyroid surgeries. He promised to find me a good parathyroid surgeon and referred me to Mr Barney Harrison a parathyroid surgeon and the president of BAETS in another city; Sheffield. I saw Mr Harrison in December 2011. My doctor had told me in September 2011 to remove calcium from my diet completely saying I had too much already. Mr Harrison told me that I should in fact keep calcium in my diet. I had a 795 mg adenoma removed 1 June 2012. I got my life back that day. I woke from surgery feeling happy for the first time in 7 years. I felt like I had woken up on a beautiful sunny day feeling refreshed and clear headed. My hands didn’t hurt. My feet didn’t hurt. I experienced pins and needles in my fingers and hands and was given a glass of milk. Within hours of my surgery I was up, dressed and going for a brisk walk around the hospital. I felt brilliant. I was cured. I went out to celebrate the same night and out for dinner the next day. I couldn’t wipe the smile off my face or stop talking.

At that point I had only spoken to one other lady with hyperparathyroidism. I began to search online for others. Gradually over the next two years I found thousands. I set up a support group called Hyperparathyroid UK Action4Change. I know what it is like to feel totally alone with this disease year after year and I am campaigning to get UK guidelines updated  so that others do not have to continue to suffer the degradation of their doctors and hospitals treating them like hypochondriacs, when the reality is that they have a parathyroid adenoma sucking the life out of them…literally. On Saturday 22 August 2015 I travelled to London to meet 8 other people at various stages of hyperparathyroidism. Friends for life… we have a special bond that only other people with this disease can understand. I will continue to support my members and to fight for changes in the way this disease is diagnosed and treated. I am grateful every day for parathyroid.com. It saved my life.

For more information visit Sallie’s blogspot. 

Perry, the Parathyroid Peep’s mascot, sure has had a rough go of it for the last 8 years or so….

Perry reported aches and pains that would come and go to a General Practitioner. The doctor thought it was arthritis perhaps and discussed having Perry take an anti-inflammatory medication. Perry decided to wait to see if it would resolve on its own with time, because the pain was manageable and Perry isn’t a big fan of taking lots of medications. Routine lab work showed Perry’s serum calcium was a bit high, but the GP said that it had gone down from 10.5 to 10.3 so not to worry about it…. the numbers were moving in the right direction.

This was the first time Perry had heard that serum calcium was high, and realized it was a mistake not to request and KEEP copies of all lab work ordered, so Perry started to do that. Perry was relieved however, that there was nothing to worry about. The serum calcium was only slightly elevated, so certainly the doctor was right – no follow-up was required.

What is the General Practitioner missing? What other labs should have been ordered?

Fast forward a couple of years and Perry starts to struggle with bouts of confusion –  it is difficult for Perry to think clearly at times. Anxiety has also become an issue as a result. Also, Perry’s heart would occasionally start to race for no apparent reason, so Perry was given an electrocardiogram, but passed.

Perry had also been under a lot of stress due to a recent death in the family, so Perry decided to talk to a mental health care professional. This astute mental healthcare professional was aware that often times hypo or hyper thyroid conditions can cause depression, anxiety and/or brain fog,  so she suggested that an Endocrinologist check Perry’s thyroid. Perry was appreciative of this suggestion, as no one had considered, or at least mentioned to Perry, that a thyroid condition could be the root cause of these symptoms. However, in the meantime, the two agreed they would continue to meet weekly to help Perry get through this particularly stressful period.

What other disease could this mental healthcare professional have suggested to have the Endocrinologist check for at the same time? 

Perry followed through and scheduled an appointment with an Endocrinologist. The doctor ran tests on Perry’s thyroid – TSH, T3, Reverse T3 and T4, but all were normal. Perry’s serum calcium again was reported as being 10.3. The Endocrinologist indicated that, based on previous reports, Perry’s serum calcium had been high in the past, but was stable, even though outside the tight range that is normal. Once again Perry was told there is nothing to be concerned about. Perry was relieved that the specialist was in agreement with the GP about the serum calcium and was grateful for the second opinion.

Why do many Endocrinologist not recognize tell-tale signs of primary hyperparathyroid disease and understand all the biochemical presentations? 

Perry’s aches, pains, and inability to focus got worse, rather than better, over the next couple of years. During this time Perry also passed three kidney stones. Each time it was so painful that Perry needed to be hospitalized, but fortunately each stone eventually passed without further intervention. Perry was advised to make dietary changes to eliminate high oxalate foods in the diet to avoid future problems.

What disease should the urologist rule out when patients present with kidney stones?  

Then one day, about a year ago, Perry was walking the dog and tripped on a curb. While Perry was able to recover and not fall to the ground, Perry still broke a bone!

What IS wrong with Perry?

Perry went to the emergency room to have an x-ray taken of the broken bone. Perry provided a health history when admitted to the hospital and remembered to mention the recent bouts of kidney stones. Perry also reported struggles with anxiety, hair loss, brain fog and aching bones/joints, heart palpitations and difficulty sleeping through the night – all the symptoms that had started to add up over the years. The doctor at the emergency room ordered lab work and noted that Perry’s serum calcium was quite high at 11.1. As a mature adult, Perry’s calcium should have been in the 9’s or at the very highest 10.1. The physician indicated she wanted to check Perry’s parathyroid hormone (PTH), ionized calcium (the “gold standard” for testing calcium in the blood) and Vit.D-25 levels as well. PTH came back as 122, ionized calcium 6.3 and vitamin Vit.D-25 at 14.

The doctor informed Perry that the numbers were a classic presentation of Primary Hyperparathyroid Disease – high calcium, high parathyroid hormone (PTH) and low Vit. D-25 levels.

Perry had never heard of a parathyroid gland before and didn’t know that we have four, typically located right behind the thyroid, that regulate calcium in our bodies in a very tight range that is normal. Perry was informed that surgery is the only cure and that a referral would be made to either a local surgeon or nearby medical center. However, as Perry was not given much information about the disease, Perry decided to do some research online and came across a patient advocacy website www.parathyroidpeeps.com, and  through their resource page, and discovered an informative website www.parathyroid.com.

Perry discovered that when a gland becomes an adenoma, too much parathyroid hormone is produced causing calcium to leach from the bones. This was the root cause of all of these symptoms! Perry was shocked to learn that patients typically go undiagnosed, as in this case, for 8+ years because many medical professionals believe it is rare and/or they are not familiar with all the biochemical presentations and symptoms. If a patient IS fortunate enough get an early diagnosis, some medical professionals still believe in the “wait and see” model of care.  Perry also learned that surgical options vary greatly depending on the predilections and experience of the surgeon.

As a result, Perry researched his surgical options and realized that it is imperative to select a skilled surgeon. This meant Perry needed to self-refer rather than agree to have the local surgeon. who does only a few parathyroidectomies a year, perform the operation. Perry selected an expert surgical team who was able to check (biopsy) all four parathyroid glands in under 30 minutes. In Perry’s case there was one non-cancerous adenoma that needed to be removed.

Perry is now a “para-trooper” helping the Parathyroid Peeps educate and advocate for improvement in diagnosis and standards for surgical treatment by telling this story.

Perry now feels wonderful! The brain fog has lifted and Perry is sleeping well again through the night. Perry no longer gets anxiety attacks or heart palpitations, and is able to walk and exercise once again without pain. Perry is working to rebuild bone mass lost as a result of calcium being pulled from the bones due to excess parathyroid hormone production because a healthy gland had become an adenoma.

Perry is grateful for renewed health and has a new lease on life -that’s why Perry is helping the Parathryoid Peep raise awareness!

Learn more how to become a guest blogger like Perry on our page,  Want to Share Your Story?

Perry’s Story by Barbara – Edits by Sophie and Joyce 

We thank our graphic designer Amy Shimm for these depictions of Perry’s journey! Keep an eye out for Perry popping up on our website! 

About Amy Shimm Noveshen – Amy received her BA from Brown University in American Studies and went on to get her Masters in Architecture from UC Berkeley. She is a freelance designer and an Adjunct at City College of San Francisco. She lives in San Francisco with her husband, two kids and one very chubby but adorable cat.

KATHY’S STORY…..

We are honoring Kathy’s request to publish only her first name, without a bio, as a guest blogger. 

Diagnosis

I was a healthy and vibrant 30-something woman who had a routine annual exam and blood work. I received a follow-up voice message from my doctor’s office saying that I had high calcium, and that I needed to schedule another appointment to retest to verify that my calcium was indeed high. I panicked wondering what high calcium could mean and consulted “Dr. Google”, which only added to my anxiety.

The first search results told me that I must have cancer! I was scared. Further research however led me to www.parathyroid.com, the website for the Norman Parathyroid Center. I had stumbled upon a very informative and comprehensive website explaining hyperparathyroidism and my treatment options. I was relieved to read “you don’t have cancer .. you have a disease that can be cured with a simple outpatient surgery.” What I had was a benign adenoma on one of my 4 parathyroid glands and as I read further, I learned that surgical removal was the only cure. When I showed my husband the website, he was apprehensive at first that I had found the answer to my medical crisis online and wondered whether it really was in my best interest to travel out-of-state for surgery.

As Fate Would Have It

I then talked to my mom and she mentioned that her boss had suffered from this disease a few years ago and coincidentally she had actually been to Tampa to have surgery with Dr. Norman, the surgeon I had been reading about! My mom offered to put me in touch with her boss.The woman assured me that I would be in good hands. I felt that this was a sign from the universe/God that I also needed to get surgery at The Norman Parathyroid Center. Though my search started online, I had now talked to an actual patient of Dr. Norman’s who had been cured and this gave me the confidence I needed to proceed with a self-referral.

Reasons I self-referred to Norman Parathyroid Center

I was referred to an endocrinologist after my calcium and PTH were retested and both were high again. After waiting a few months to see the endocrinologist, he recommended retesting and additional tests (blood tests, 24 hour urine test, and bone DEXA scans). My endocrinologist seemed surprised when the bone DEXA scans showed that I had osteopenia at such a young age and said surgery “may” be an option.

At first, it was recommended that I merely drink more water and take large doses of Vitamin D. Dr. Norman’s website stated that high doses of Vitamin D would not help and may even be harmful so I didn’t follow the doctor’s orders. I had a real tumor growing in my neck and yet my endocrinologist wanted me to simply wait until my symptoms worsened.

I self-referred because despite my doctor’s quick diagnosis, he did not seem familiar with the most advanced surgical techniques for this disease nor did he seem to approve of my choice to travel to Tampa for surgery. I am very lucky that we now have the medical advances where this tumor was caught in its early stages and I could get MIRP surgery. Many other patients with this condition are misdiagnosed for years. Their doctors ignore their high calcium and their condition just worsens.

Proudly showing the incision site the day after surgery.

Norman Parathyroid Center is leading the way in performing MIRP surgeries. This surgery is complex as the tumor that needs removal is in the neck – a very delicate area to operate. The other healthy parathyroid glands are only the size of a rice grain so I didn’t want an inexperienced surgeon harming the healthy ones. I chose Dr. Norman because he is one of the best surgeons in the world, in my opinion, for this type of procedure. The center exclusively performs parathyroidectomies – 64 per week, 3,100 per year (http://parathyroid.com/about-parathyroid.htm).

Sightseeing the day after surgery at the Tampa aquarium.

 MIRP Advantages from a Patient Perspective

My surgeon invented the Minimally Invasive Radio guided Parathryoid Surgery technique (MIRP) in the early 1990’s, and I can attest that, in my case, this was a very easy surgery. It was outpatient surgery performed in less than 20 minutes under light anesthesia; I had minimal discomfort, and a quick recovery. The next day I enjoyed lunch and a visit to the aquarium with family. After two years, the tiny scar on my neck is barely noticeable but a proud reminder of my experience combating this disease. I also felt lucky that there were medical advances so that I could have an outpatient surgery and not have to endure the traditional surgery invented in 1925 where the whole neck is cut open. The traditional surgery requires a longer hospital stay, costs more, leaves a longer scar, and requires longer recovery time. Another benefit of MIRP surgery is that all four parathyroid glands are checked.(http://parathyroid.com/MIRP-Surgery.htm).

 “Asymptomatic”

It is important to note that I was “asymptomatic”, in the sense that, I had no idea I had this disease until I had routine blood work done. I was not feeling ill or depressed, had never been really sick in my life, never had surgery or even been hospitalized. I am fortunate in that my primary care physician was a very smart doctor to tell me right away that high calcium was not normal.

However in retrospect, I was actually experiencing signs of primary hyperparathyroid disease, I just didn’t make the connection. While I looked healthy on the outside, on the inside, it was a different story. I had mood swings, frequent urination, anxiety, some aches and pains. These were classic symptoms of the “moans, stones, groans, and bones” as they are traditionally categorized. Fortunately, I had not yet developed kidney stones, but my bones were getting weaker as they were robbed of needed calcium. I had developed osteopenia.

Had I not been diagnosed and received surgical treatment early on, I could have been like the countless women who are misdiagnosed for many years and end up with a wide range of physical and mental illnesses advancing to next stages,  like my osteopenia progressing to osteoporosis, increased anxiety and depression, and fibromyalgia.

Because I was considered “asymptomatic” and I was younger than most patients with this disease (it’s more common in women age 50 and up), I feel that the doctors were even more reluctant to recommend surgery.

Seek Answers if Your Blood Calcium is High! The “Wait and See” Model is Outdated.

I chose to get surgery sooner rather than later because I wasn’t going to allow this disease to ravish my body – to destroy it as the years went by, as doctors just monitored my worsening condition. The “wait and see” approach doesn’t work! I wasn’t going to sit there and wait to suffer from kidney stones, increased osteopenia, and increased risk of various cancers.

For every great doctor familiar with hyperparathyroidism, there are countless others who are unaware about the dangers of high calcium. Many doctors may have only read a paragraph or two on hyperparathyroidism in medical school and they may only encounter a handful of patients during their practice with this condition.

If your doctor ignores the cause of your high calcium, won’t listen to you, ignores your symptoms, tells you to wait and see, or tells you it is just menopause, I urge you to get a second opinion or even change doctors. I suggest following your gut and finding a doctor willing to listen and work with you as an equal participant in your journey to recovery and healing. With medical advances such as MIRP surgery, there is no need to suffer with this condition.

In closing, I urge you to empower yourself by researching your treatment options and finding the right surgeon for you who is specifically trained in this type of surgery/disease.

—————–

Want to share your story? Visit this page to learn more!

Today we were honored to meet-up with some exceptional people. We were incredibly moved and inspired by each of their journeys for different reasons. However, what struck us was the common thread…. each of these peeps tenaciously seek answers, are incredibly smart and courageous. They have undoubtedly earned the title of “Para(thyroid) troopers” and we are in awe of their ability to persevere.

Our Northern California group is definitely a growing contingent, as you can see in the above photo taken at  the event. Several others had hoped  to attend but unfortunately couldn’t make it – however we look forward to meeting each and every one of you really soon! We are excited for one of our peeps who will be having surgery later this month and we wish this dear friend all the best. Perhaps we will hear this story in a future blog post.

 Other news….

Osteoporosis Awareness Month We have been making a concerted effort to reach out to the Osteoporosis community, as we imagine many are suffering from primary hyperparathyroid disease being the root cause of their condition and they simply do not know it. Earlier this month we participated in a webinar with Dr. Lani Simpson. She specializes in osteoporosis and hormone health and is the author of No-Nonsense Bone Health Guide. If you missed the webinar you may LISTEN AND WATCH now.

We are also excited to announce that we have been interviewed for an online article coming out in Health Central later this month and we will let you know once it is published. The timing is also coordinated with Osteoporosis Awareness month.

Podcast Update….Our WordPress stats for our podcast page have exceeded our expectations to date….750 views in just a month!  A new podcast “In The Operating Room with Dr. Deva Boone” will be coming out soon. This is one you won’t want to miss!

CLICK TITLE TO LINK TO PODCAST PAGE:

Function of Parathyroid Glands and Classic Biochemcial Diagnosis

Guest: Dr. Norman from  Norman Parathyroid Center

Host: Barbara from PARAthyroid PEEPS

Posted 4-29-15 (18:22 minutes)

————————————– We are so excited to share the first in a series of podcasts we are producing and hosting. Our mission is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment. Our guests are surgeons from the Norman Parathyroid Center. Here’s the line-up for some of our future podcast topics designed to help educate patients as well as medical and mental healthcare professionals!

• Normocalcemic and Normohormonal Diagnosis –  Calcium Values (Serum, Ionized & Urine) and Purpose of Scans.
• In the Operating Room – Typical surgery to remove a parathyroid adenoma
• Surgical Risks and Complications – Hypocalcemia, Tetany, Hoarseness, Vocal Cord, Incision Site and other considerations
• Symptoms – Neurological problems, Kidney Stones, Osteoporosis, GERD and more
• Re-ops – Challenges the experts face and why   
• Difficult surgeries –  Ectopic gland, 5th glands, Embedded in thyroid, Cysts, 4 gland hyperplasia, Vocal Cord/Jugular Vein
• Hyperplasia – What is hyperplasia and what is the best approach
• Rare conditions that people with hypercalcemia might have – Secondary, Tertiary, MEN-1, FHH, Carcinoma, Familial
• Parathyroid tumors located in the chest – How did the adenoma get in there and even more importantly, how are you going to get it out?
• Approaches in the Operating Room – Ultrasounds, Sestamibi Scans, Use of Probe, and checking all 4 glands
• Epidemiology of Primary hyperparathyroidism – Why did I get this disease? What percentage of the population will get primary hyperparathyroidism?
• PARAthyroid PEEPS Action Plan –  Conversations with a surgeon about the need to educate and advocate
• YOUR QUESTIONS !  – All you peeps will have an opportunity to submit your questions and the surgeons will answer as many of them as possible, in the time allotted for this podcast

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Guess what is being celebrated this week? Easter you say? Well that is a good guess BUT that’s not the answer we were looking for.  Something else is being celebrated,  TODAY as a matter of fact. March 30th is National Doctor’s Day!  What? You haven’t heard of it? Well neither had we until an article written by Pamela Wible M.D ran through our FB newsfeed this morning. Dr. Wible says…

Veterans know about Veterans Day. Mothers know about Mother’s Day. Lovers know about Valentine’s Day. Why don’t doctors know about Doctors’ Day? Maybe because nobody celebrates it.

Dr. Wible then leads the reader to a site she found through a quick search – the official gift-gliving site of The National Doctor’s Day organization.  According to the site:

National Doctors’ Day is held every year on March 30th in the United States. It is a day to celebrate the contribution of physicians who serve our country by caring for its citizens. The first Doctors’ Day observance was March 30, 1933 in Winder, Georgia. Eudora Brown Almond, wife of Dr. Charles B. Almond, decided to set aside a day to honor physicians. This first observance included mailing of greeting cards and placing of flowers on graves of deceased doctors. On March 30, 1958, a resolution commemorating Doctors’ Day was adopted by the United States House of Representatives. In 1990, legislation was introduced in the House and Senate to establish a National Doctors’ Day. Following overwhelming approval by the United States Senate and the House of Representatives, on October 30, 1990, President George Bush signed S.J. RES. #366 (which became Public Law 101-473) designating March 30th as National Doctors’ Day.

So today PARAthyroid PEEPS want to celebrate National Doctor’s day!  Specifically we want to recognize all of the surgeons at the Norman Parathyroid Center where we had our adenomas removed. NPC’s commitment to their patients is unwavering. Without them our lives would be very different – we would still be suffering from the devastating symptoms of hyperparathyroid disease. Instead, our quality of life has drastically improved and our futures are bright. For this we are eternally grateful.