Biology assignment provides hope

Biology assignment provides hope

Earlier this month my 6th Grader came home with her biology homework. As she was reading out loud her assignment called ‘Feedback Loops’, I realized that it was about the functions of the parathyroid glands! And there is was, an explanation of how your 4 parathyroid glands function and how they monitor your calcium levels and produce parathyroid hormones (PTH). I have to admit that I was blown away (and elated I might add)  that a teacher would bring the parathyroid gland topic to a class full of 6th graders.

My daughter’s reaction upon reading the article was to ask me why the article didn’t mention anything about parathyroid tumors. This made me smile…that’s my girl! I explained to her that her assignment was about the roles of the 4 glands, not to diagnose someone whose parathyroid glands are over producing PTH. Can you imagine if kids in the US learned about possible dysfunction of the glands and parathyroid tumors in 6th grade?

OK, back to reality now from wishful thinking – but I did tell my daughter to please specify on her assignment that the normal calcium levels are age dependent and that a mature adult should always be in the 9s (see chart on the left).  That’s how a mature adult would know they have perfectly nice performing parathyroid glands! Everyone needs to know the highest level of normal calcium value for their age.

This school assignment is making me hopeful that the role of parathyroid glands is not some obscure topic and that biology teachers in our country are indeed paying attention to our calcium levels. I am also hopeful that in the near future all our doctors will be educated on the ‘feedback loops’ and will recognize early on, the signs and symptoms of parathyroid disease, so no one is left untreated for years!

Sophie

Rochelle’s Story – From Patient to Advocate in Greece

Rochelle’s Story – From Patient to Advocate in Greece

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By Guest Blogger – Rochelle Lambiris

In 1971 I’d booked a holiday to Tunisia. But fate intervened and I finally came to Greece with some friends. Four days before we were due to return to England, I met someone….10 months later we were married! So now I’ve been living in Greece for 45 years. The culture shock in the beginning was huge, and not knowing a word of the language didn’t help matters. But over time one adapts and embraces a different way of life. It’s a beautiful country, with the sea never too far away, islands that often seem to belong to the past, magnificent mountainous scenery reminding one of the Alps, and of course treasured ancient monuments.

As far as health care is concerned, despite the problematic economic condition the country is in, Greece has many excellent doctors of all specialisations who strive to do their best. But as we all know, some are more knowledgeable and experienced than others….

My parathyroid story is pretty typical: after years of having high calcium, osteopenia, crystals in the bladder- all measurable symptoms – and other more subtle ones such as muscular weakness, intense exhaustion, red eye, severe vomiting, weight loss, etc, – I went to an orthopaedic specialist for a referral for my annual Dexa scans. And I asked him this life-changing question: “Are there any other useful tests that I could have?” He thought about it and then sent me for a PTH test…the first time I’d ever heard of the parathyroid glands. The result was 143 pg/ml, with the upper limit  being 65 pg/ml. He told me to see an endocrinologist.

So for nearly 5 years I went to a professor of endocrinology, and every 3 months he sent me for a huge range of tests…blood, scans, Xrays, urine….Although he diagnosed me with hyperparathyroidism, since nothing ever showed up on the imaging tests he was hesitant to recommend surgery since he feared I’d develop hypoparathyroidism which would be extremely serious. All this time my symptoms were getting worse and there were days when I could hardly get out of bed. Of course I wanted a second opinion, but where to go? I knew of nobody who had the disease, and was reluctant to start doing the rounds without useful results.

In November 2015, fate intervened again: someone I knew and respected had gone to a new endocrinologist and highly recommended him, so I went to see him. He immediately appreciated the gravity of the situation, sent me for a few more tests and then recommended an incredible surgeon. When we met him, he explained that he couldn’t give us a 100% guarantee that he would be able to locate the bad gland or glands, but felt pretty confident that he would. And he did: one adenoma was deeply embedded down the back of the neck, and the other was ectopic, clinging like a leaf to the oesophagus. My good fortune continued: I was one of the estimated 20-30% of sufferers who have an extremely rapid recovery post op. My photo shows me and my scar….my little smile on the neck! I have been so lucky….

However, it was only about 2 weeks post op that I ventured into the world of Facebook to investigate hyperparathyroidism:  up till then I had only dabbled…I joined a couple of groups and my eyes were opened. Such pain, suffering and despair, isolation, insufficiently knowledgeable endocrinologists, insufficiently experienced surgeons…and the list continues. It’s one thing reading information from Dr Google, but quite another to hear directly from the sufferers.

 In March 2017,  with the aim of informing and supporting people with the disease, I started the closed group on Facebook in Greek and English called

HYPERPARATHYROIDISM GREECE – ΥΠΕΡΠΑΡΑΘΥΡΕΟΕΙΔΙΣΜΟΣ ΕΛΛΑΔΟΣ

I felt I had been extremely fortunate that, after a number of difficult years, I had been able to have a successful parathyroidectomy in Greece and wanted to try to promote general awareness. This is not an easy task at all, and I sincerely hope that you will spread the word about our little group far and wide! It is in English and Greek and we welcome people from other countries.

At the moment we have about 57 members, more than half of whom are not from Greece: information and support should be international. It is incredibly hard to find Greek sufferers and at times I wonder if we ever will! So please spread the word…we need all the help we can get.

For Greek speakers, I have very recently created an open Facebook page for basic information (note that there is a translation button on the page):

Υπερπαραθυρεοειδισμός Ελλάδος Ανοιχτή ΣελίδαFB page

Reflecting about how much sooner many of us could have been diagnosed if any of the numerous doctors we usually see during our parathyroid journey had picked up on our symptoms I wrote the following article.  It is up to each of us to ask “WHY??” and at every opportunity inform others about the disease.

THE BIG “WHY ??”

Since you are reading this, you already know something about Hyperparathyroidism even if you are not yet certain that you have the disease. Or you may be here to help a friend or relation. But even if you have been tested for PTH and calcium, you may not yet have a definite diagnosis. Think about the symptoms that this illness can often cause: for example,  kidney stones; gravel/crystals in the bladder; osteopenia/osteoporosis; red eye; gallbladder and pancreas issues; depression; brain fog; weight gain/loss; intense exhaustion; muscular weakness; bone pain; dental problems; and many more….

So start asking the doctor WHY?

WHY do I have this problem? Could it be because I have hyperparathyroidism? Could you give me tests to check my PTH and calcium levels – just in case?

Since many doctors OFTEN ignore or don’t pay much attention to symptoms, sometimes for many years, saying it’s nothing, it’s menopause, it’s only just above the limit, you’re getting older, drink more water, you’re working too hard, etc.. you must stand up for yourself and do everything you can to get the basic tests. Remember, the sooner you get a diagnosis and an operation, the sooner the harm being done to your body will stop and you can start to recover. If you do not start asking WHY, the damage to your body will get worse…

When you chat to friends and relatives, and you hear them complaining about health issues that might be related to Hyperparathyroidism, tell them about the disease and advise them to get tested so that if they do have the illness, they won’t waste years of their life suffering unnecessarily.

And to those of us who have been diagnosed and had the operation: ask yourselves this: if you had known about hyperparathyroidism before, and had started to ask the doctors WHY you had such symptoms, how much sooner do you think you might have been cured?

In conclusion, a final chilling word:

My very dear endocrinologist told me the following during a six-monthly visit in July: “As soon as I saw you, I could see how serious your case was because of the extreme muscular weakness. If you hadn’t had a successful operation, within 5 years you would have been in a wheelchair….”

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Q&A with Dr Norman

To date we have produced a total of six podcasts to help educate and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease. Our listeners have been invited to submit questions that relate to these podcasts, so they can be answered by our guests –  expert surgeons from the Norman Parathyroid Center.  

Dr. Jim Norman

Below are a few questions submitted that relate to interviews conducted with NPC’s founder Dr. Jim Norman, MD, FACS, FACE. He is recognized as one of world’s foremost experts on parathyroid disease. Dr Norman is a Fellow of the American College of Surgeons (FACS) and also a Fellow of the American College of Endocrinology (FACE). He is recognized as the inventor of minimally invasive radioguided parathyroid surgery in the mid 1990s, and is credited with dramatically changing the way parathyroid surgery is performed. Dr Norman and his team have performed over 25,000 parathyroid operations.

Question: “I understand from listening to your podcast that normal serum calcium levels should be adjusted based on age. Should normal ionized calcium levels be adjusted for age as well?”

Dr. Norman: “Ionized calcium does change with age, but not nearly as much as serum calcium.”

Question: “This is a clarification question on the urinary calcium: in one of your podcast you said it doesn’t matter whether it is high or low, that it isn’t a good test. I thought that indeed it was used to help with the people who were harder to diagnose because of “normal” values, but still presenting with symptoms. The kidney will filter the extra calcium load and keep the serum from getting “too high” and the pth will stay in normal range, but the urine will have a good amount of calcium. Can you please clarify?”

Dr. Norman:  “There a few times when a 24 hour urine test can be helpful, but they are few and far behind. It is MUCH more common for the 24 hour urine calcium to provide WRONG information to the doctor and potentially make a wrong diagnosis of FHH than it is for the 24 hour urine calcium to help. It almost never helps, it usually causes tremendous problems and confusion. As a general rule, therefore, it should not be done. It is more harmful than good by a 20 to 1 margin.”

Question:  “When they found my parathyroid adenoma, my GP tried to put me on high doses of vitamin D because I was low from the hyperparathyroidism. My Endocrinologist told me not to take it. My surgeon told me to take some before surgery to force my calcium level up so they could see it fall during adenoma removal. I was stuck in the middle wondering which doctor’s advice to take and finally sided with the surgeon pre surgery and the Endocrinologist post surgery. Do you have a word of advice for our listener?”

Dr. Norman: “Your GP is making a mistake because he doesn’t understand—he is treating a number and not understanding what caused that number to be low. Your endocrinologist is correct, taking vitamin D when your calcium is high will not help, can be very dangerous, and typically (50% of the time) makes people feel worse and their symptoms worse.  Your surgeon has no clue. He/she has no idea what they are talking about—nobody measures calcium during surgery. This one is completely inexcusable and suggests you may want to look for a surgeon who understands this disease better. A bad outcome is much more common in surgeons who use measures of PTH (or calcium?) in the operating room—they remove normal glands more than 10 times more frequently.”

Thank you Dr. Norman for answering our listeners’ questions. If you would like to submit your questions after you’ve listened to our podcasts, email us at parathyroidpeeps@gmail.com or leave a comment on our FB page.

The Parathyroid Peeps

Celebrating High PTH!

Parapeeps at lunch

L to R – Rose, Sophie,Diane, Joyce and Deborah

This last Friday we held our bi-monthly Parathyroid Peeps lunch in Berkeley, CA. We were very excited to get an update from Deborah who had her surgery on June 2nd at the Norman Parathyroid Center (NPC).  She proudly arrived with a picture of her adenoma.  She was all smiles and kept exclaiming how great she was now feeling! We are all so very happy for her and enjoyed celebrating with her!!

We then turned our attention to Rose who reports that she is scheduled for surgery at NPC next August.

Our third member was Diane, who had a failed surgery at a local medical center over 7 years ago.  After meeting us for the first time 2 months ago, she worked up the courage to do her own research and find a capable surgeon that would do her reop and hopefully cure her after so many years.

Diane on the phone with NPC during our meet-up!

As we were discussing our surgical experiences, lo and behold Diane noticed that she had missed a call from (drum roll please) …..Tampa! She was anxiously awaiting news about her latest lab values to confirm she was eligible and so we encouraged her to return the call right then. For goodness sakes – this was the call she had been waiting for!  Diane spoke to Caroline at NPC while we snapped a picture of her receiving news of her latest lab values in hopes of confirming a diagnosis. As she started writing her numbers down, it was clear that she had pHPT based on her elevated PTH. As soon as the call ended we were all cheering to high PTH!!! Diane is now awaiting her consultation call to schedule her surgery.

We wish both Rose and Diane the best of luck for successful surgeries and fast, easy recoveries. And if you are anxiously waiting to receive lab work results to confirm a diagnosis, you can certainly celebrate your elevated PTH with us too…. unless that is, you present as normohormonal (high calcium and normal pth). But I think we’ll save that for a future blog. LOL!

Wishing each and every one of you good health and happiness.

The Parathyroid Peeps

Reflecting Back and Looking Forward

This July 17th marks the one year anniversary of my parathyroid surgery.  (Coincidentally the month of July also marks Barbara’s anniversary of 4 years!) While this year has literally flown by, I can’t help but reflect on the major milestones I was able to accomplish thanks to my renewed health.

A year ago I still remember flying across the country to the Norman Parathyroid Center in Tampa, Florida and checking in at 5 am for my surgery. I was scared this disease was all in my head, as I had self-diagnosed and referred myself for surgery.  I was also scared that the surgeons might not find my tumor. Upon waking up from my 17 minutes surgery I was already feeling the changes in my body and the pain in my bones was already gone. I had won the battle with primary hyperparathyroid disease! Once I arrived back at home in San Francisco and realized how easy it should have been for my doctor to diagnose me I felt angry and let down. Primary Hyperparathyroidism is not a rare disease, so why is it not a condition that doctors learned much about in medical school? Why are endocrinologists so quick at prescribing medication instead of referring patients for surgery, when surgery is the only cure?

Last September I joined a FB support group for people with this disease. At last I was able to communicate with former patients but still felt that what I really wanted was to meet face to face with others who had also suffered from this disease and with whom I could relate. This FB search led me to Barbara and Joyce who live in the San Francisco Bay Area. After exchanging a few IM’s, the three of us decided it was time to meet in person. And so, last October, we met in Marin and an instant connection started. We couldn’t stop discussing our struggles for a diagnosis and cure and decided that we needed to join forces to do our part to educate others about primary hyperparathyroidism. Within a few days we were calling ourselves the Parathyroid Peeps.  We continued to meet on a regular basis and within a few short months we created a website and Facebook page. We wondered….. Could we make a difference? Would people read our blog posts? Could we work with the surgeons at the Norman Parathyroid Center to support the medical piece of our message?

During this month of July I am bursting with joy and celebrating the raising of awareness.  We are being contacted by people across the country who thank us for sharing our stories. Others have commented how helpful the podcasts have been, as they provide those who are seeking a diagnosis or those who have been diagnosed with this disease the information they need to make informed decisions.  We cannot thank our readers enough for reaching out to us to let us know that we are making a difference! Nothing makes us happier than to hear that people were able to get a successful surgery and they are now on their way to renewed health. We are equally excited for what lies ahead as we are still full of ideas and enthusiasm for continuing this journey with all of you joining us.

Sophie

Meet Our Graphic Designer Amy

For as long as I can remember, my mother was self-conscious about her hair loss. By the time I was in college, she was wearing a wig.  She never went to the doctor to find out what was wrong; she was so embarrassed by it…she just accepted it and moved on. But that’s the way my mom is. She is a trooper, who never really feels sorry for herself.  She had a very difficult hip replacement (it never healed properly), heart disease, sleepless nights and tired days. We accepted these problems because she did. We agreed that these symptoms were the result of crash diets, a lack of exercise, and bad genes. And the sad thing is, her doctors must have agreed too. If only she had a medical professional who would have noticed that her calcium was high, and that this was NOT normal or insignificant.

Screen Shot 2015-01-30 at 5.03.12 PMA few years ago my mother told me she had hyperparathyroidism. She was going to have surgery to take out the tumor that had been there for decades. I was thrilled but a bit skeptical. How could a small surgery reverse years of damage? And why wasn’t this discovered before? Amazingly, within a week, she felt better. She had more energy, less brain fog.  And yes, hair began to grow back on her head.
When I was approached a few months ago by PARAthyroid Peeps to help design a logo, I immediately said “of course.” If only my mother had known the symptoms, so much pain could have been avoided. Hyperparathyroidism is something that needs to be known by the general population and I commend Barbara, Joyce and Sophie for taking the time and tremendous effort to set up this site. So here’s to Perry, our hyperparathyroidism mascot who will, by each “click, tweet, and like” help make hyperparathyroidism a household name!

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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.

What a Launch!

As we reach our very first milestone, having been live now for almost a full week, we are thrilled to share a few of our stats with you. Last Monday Dr. William Davis the author of Wheat Belly posted Barbara’s story on his Facebook page that has close to 232,000 likes, sending our site visits overnight to a record high.  As of press time our site PARAthyroidPEEPS.com has been viewed by 5,376 people in 57 countries and we have 30 followers!!  Our Facebook page has been viewed by 985 people and has received 225 Likes!!!

We wanted to take this time to thank you for reading and sharing our mission with your friends and family. We are very humbled to see that we can all make a difference in educating people about primary hyperparathyroidism and judging by the numbers of people following our blog and FB page it is very clear that you also want to learn more about this disease and/or help us raise awareness and advocate for change to improve timeliness of diagnosis and standards for surgical treatment.

In the upcoming weeks we will have guest bloggers share their stories as well as introduce our graphic artist, the designer of our “ambassador” Perry, who is featured in our logo. We now refer to her as “Perry’s mom”.  As it turns out, she also has a parathyroid story of her own to share which we were not aware of until after we asked her to create the design. What a coincidence. So much to be hopeful for….so much to share. Stay tuned!