Hyperparathyroidism Awareness

Grammy Writes, ,

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I have been doing this blog for five years now and rarely, if ever, have I shared any personal information about me or my health. I am making an exception this one time to advocate for Hyperparathyroidism Awareness.

Hyperparathyroidism is a little known and sometimes complicated disease of the parathyroid glands. There are four of these pea-sized glands usually located at the base of the neck near the thyroid gland, but they have absolutely nothing to do with thyroid function. Their sole purpose is to make parathyroid hormone (PTH) which controls the level of calcium in our bodies. If a parathyroid gland is overactive, it makes too much PTH, causing a high level of calcium in the blood. When calcium remains in the blood, it deprives our bones, teeth, muscles, nerves and organs of the calcium they need to work properly. This malfunction is called hyperparathyroidism, a condition which can lead to serious health problems.

Early symptoms are often mild and are similar to those of many other disorders, like muscle weakness, fatigue, aches and pains in bones and joints, a general feeling of un-wellness, and a lack of interest in activities you previously enjoyed. As the disease progresses you may have loss of appetite, nausea, constipation, increased thirst and urination, acid reflux, nerve pain, anxiety, depression, thinning hair, frequent headaches and difficulty concentrating. The longer you have hyperparathyroidism, the more likely you are to experience harmful effects on your bones, kidneys, brain and heart, such as osteoporosis, kidney stones, chronic kidney disease, memory loss and confusion, high blood pressure, heart disease, and an increased risk for certain cancers.

In the United States, about 100,000 people develop hyperparathyroidism each year. More than 80% of the time it is caused by an adenoma (a benign tumor) that has formed on one or more of the parathyroid glands, in which case the disease is easily cured by surgically removing the tumor and/or the gland. Other causes include hyperplasia (where all four glands are enlarged), and a rare inherited form of hypercalcemia (FHH). In extremely rare cases, it is caused by cancer.

OK, so those are the basics! Now here is a personal look at hyperparathyroidism: For over 8 years my endocrinologist watched as my calcium and PTH levels climbed. In 2019, when a bone density scan confirmed osteoporosis, surgery was finally recommended. Prior to a parathyroidectomy, a scan called a sestamibi is usually done to help the surgeon know where the glands and possible adenomas are located. If the scan fails to identify the glands, which is what happened in my case, an exploratory surgery is performed where all four glands are examined to determine which of them is bad. During my four-hour exploratory procedure, the surgeon was only able to locate one gland, which he removed. Turns out, it was a perfectly healthy gland! The surgery and painful recovery was all for nothing! A bone density scan done a few months ago indicates rapidly worsening osteoporosis, so the endocrinologist is once again recommending surgery.

Have you been wondering why these seemly unrelated photos are included in my post about Hyperparathyroidism? Well, there is an explanation… and I’m getting there, I promise.  

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After my first surgery failed, I began to do my homework – a little too late, unfortunately. I learned that a surgeon with a great deal of experience in parathyroid surgery is essential. The surgeons in my area just don’t do enough of them to be considered “expert”, so when a second surgery was recommended I knew I needed to go elsewhere. My research led me to the Parathyroid Center in Tampa, Florida where parathyroid surgery is ALL they do. They had an impressive reputation and a high success rate. Great! I filled out the on-line application, sent them my lab results and requested my records be released to them from my doctors. It took a few weeks, but I finally received a phone consultation with one of their surgeons. Yes I had Hyperparathyroidism, yes I needed surgery, yes additional tests would be needed but their diagnostic imaging is the best, yes it would be a difficult surgery because it is a re-operation, but YES – they could do it – and a surgery date was set! I needed to be in Tampa on Monday, May 17 for the nuclear tests they required, surgery would be on Wednesday, and I could travel home on Friday. So my husband and I bought our plane tickets, booked our hotel, reserved a rental car, and headed off to Florida… which is where these photos were taken. (See, I DID explain!)

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Fast forward to May 19! I enter the hospital alone – my husband was instructed to remain at the hotel because of Covid. I complete the registration, I change into my lovely gown, I’m sent to radiology for yet another scan, an IV is started, the anesthesiologist comes in for a chat and gets my signature on a consent form, and then the surgeon walks in. He starts with “Let’s discuss your options” … hmm, I thought, this doesn’t sound good! Apparently, the plethora of tests (4D-CT, Sestamibi, Fusion Scans, Ultrasound, Laryngoscopy) have all failed to locate the three remaining glands. They could be in an ectopic location, meaning somewhere they are not supposed to be, like in the jaw, the chest or inside the thyroid gland… not common, but it happens. Rather than perform another “exploratory” surgery, his recommendation is to wait another YEAR because the scar tissue from my first surgery would be easier to navigate by then. “Wait…what???? You’re supposed to be an EXPERT, for goodness sake!” I’ll spare you the remaining details of my shock and disappointment.

We somewhat enjoyed Tampa – it’s a lovely city – but I returned from there determined to figure out the best step forward. I joined a Hyperparathyroidism support group and am comforted by other members, their stories and their comments about my experience. They are a very knowledgeable bunch who convinced me that waiting another year was merely an excuse by this “expert” not to do a surgery he thought would fail. Scar tissue usually dissolves within 6 to 12 months! Waiting another year might allow an adenoma to become larger, making it easier to pick up on a scan, but it would also allow the symptoms and progression of this disease to get worse. The support group also put me in touch with a well-respected doctor in California who does monthly question and answer sessions on-line. I was able to get his opinion on my case and he suggested a Choline PET scan – a new method of discovering gland and tumor locations. Unfortunately, these scans are not widely available, so my current mission is to find out where I can go and how to get a referral. So, the search for a cure continues and hopefully it won’t take another year!

I know this is a lengthy post, but if you’ve stuck with me this far, I just want to say if you have any of the numerous symptoms of Hyperparathyroidism and your doctor hasn’t already considered it, please ask for a simple blood test to measure your PTH and calcium levels. This disease is relatively easy to diagnose and in most cases, easy to cure – except in weird, complicated cases like mine!

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38 Comments

  1. Very well written Linda – I’m glad you are sharing your experience.  Maybe someone out there has even more information they can add that would benefit you.  It is hard to believe in this day and age there are easier answers – I pray you can find your pet scan soon and hopefully gives you some guidance. Love you my sweet friend – ckh

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      1. Finally found someone with the same problem with Hyperparathyroidism. I had a failed surgery 6 years ago. The surgeon took out a perfectly healthy gland and basically said “ I’m sorry but I couldn’t find the diseased gland. The endocrinologist suggested repeat scans ( why were the first ones not accurate?) and more surgery. I researched and found repeat surgeries are somewhat tricky and can be dangerous . After a kidney stone and kidney issue, I went to a different endocrinologist. She too told me that it is likely located in a place other than my neck. I’m 60 and I have decided to take sensipar ( a drug that has lowered my numbers to normal). Of course that clinic in Florida says that this drug will make things worse. He just wants me to pay lots of money to look at additional surgery. Going for a dexa scan soon to see if my osteopenia has worsened. Since I’m menopausal, I do take low dose hormones to hopefully protect my bones. Prayers to you

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      2. Sounds like we have a lot in common! I have a new endocrinologist who is re-doing some testing and I am waiting to see what she recommends. My current thinking is that I will not do another surgery unless a diseased gland is located first. I am taking the Prolia injections for osteoporosis. Good luck to you and prayers for good health!

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  2. Well, dang Linda. I wish you had a happier reason to travel to Florida and take such amazing pictures. (The building and clouds picture is WONDERFUL!) All the same, here’s wishing you the best of all outcomes here. ❤️

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  4. First, my heart reaches out to yours – such a disappointment in Tampa! Bravo for your proactive probing.

    And also – THANK YOU. I have an appointment this month to start figuring out what is wrong with me … I will ask for the PTH (which I’d never heard of before) as I have most of those “early symptoms” steadily progressing over the past couple of years.

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    1. I wasn’t really sure I wanted to post this, but then I decided that if just one person could either discover it or ruled it out as a cause of their symptoms, it would be worth it. Good luck to you, Jazz, and thank you!

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  5. Sharing your personal journey takes strength. It requires bravery to open up about something that is not only deeply personal, but also could potentially change the way that others perceive you. I believe that personal stories have the power to move people, reduce society stigma and help you connect with others. Thanks for sharing yours, Linda 🙂

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  7. Thank you so much for sharing and my heart goes out to you and I pray you can get that PET scan soon! You are very brave, stay strong and really good photos. I wish they could have done that surgery in Florida, how disappointing. ❤️ ~ Diana

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  9. Linda, thank you for raising awareness of this little known condition. It must have been so difficult to get a diagnosis since the symptoms could be mistaken for any number of things. I hope the experts are able to track down your adenoma soon and that you get your surgery as soon as possible so that you can live a pain-freeish life. It must be tremendously frustrating to know the cause but not be able to get it treated.
    As it happens, I do have many of those symptoms, but my calcium levels are in the normal range so I’m unlikely to be ordered a PCH test. I guess that means I will continue to feel like a hypochondriac for some time yet.

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    1. Thanks Tracy! Sharing just seemed like the right thing to do – you just never know who might need the information. And, yes, it is indeed frustrating! I feel like a hypochondriac too! Hopefully we BOTH will feel better before too long! Take care.

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  10. What an interesting read and valuable PSA. My wife takes daily meds for hypothyroidism and still struggles to get her body behaving just right. I know “…para…” is something else entirely, but the mistaken connection between the two is the reason I read your story to the end. I will forward your post to my wife for awareness, Linda. Thank you.

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    1. I’m glad you found it interesting, Dave, and I hope your wife does too. I don’t understand why health issues have to be so complicated! Wishing your wife the best. Take care, now.

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  11. Your post was informative. “Wait…what????” was a reaction that I had while reading about your experience. I pray that you are able to receive healing!

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  13. That was very informative and useful. I always find personal experiences more relatable than expert opinions, because I can connect with it more. I too have my thyroid experiences to share, which I would be soon doing. Dear Linda I wholeheartedly wish your problems are figured out and treated and you would be well and fine soon🥰

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  14. I hope you get the care you need soon. And I think you were brave to share your story. There’s no telling how many you may help by posting this, either directly or indirectly. ❤️

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  16. I only just came across this post so I apoligise for the lateness of the comment. I had Hyperparathyroidism a few years ago which unfortunately wasn’t diagonosed right away. When they did finally figure out what was wrong, the surgeon removed one of those pea-sized glands and the problem was resolved but not before I had developed severe osteoporosis. The surgeon did a remarkable job and although I was terrified at the thought of getting this done, I’m really glad that I did.

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    1. I am so glad your surgeon was able to pin-point the bad gland and remove it, but sorry you developed osteoporosis. Has your bone density improved at all since the surgery, or are you taking medication? I am doing the Prolia injection twice a year. I’m still waiting for a scan to locate the gland that’s causing the problem. None of the surgeons I’ve seen are willing to go in a second time without knowing where they are going! This is a complicated and frustrating disease! I wish you continued good health!

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      1. Since surgery, bone density has stabilized but they still want me to have treatment for the osteoporosis and I was interested to hear that you are taking the Prolia injection. I hope you will soon be able to get the scan so they can take care of the problem. Thank you for your good wishes.

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