Learning not to blame all my symptoms on hypoparathyroidism
I need to be upfront with providers when my health changes or worsens
Since my diagnosis with hypoparathyroidism, also known as hypopara, it’s been easy to blame a lot of things on my disease.
That pain in my arm? Probably a muscle spasm.
That headache? Might have something to do with my calcium level.
Fatigue? Well, that’s just something I fight every day.
Brain fog? When don’t I have brain fog?
And to be fair, hypopara symptoms can include all of those issues. But I need to remember that my symptoms aren’t always my disease’s fault. It’s important to talk to a doctor about any new issues or changes in their severity.
I was reminded of this lesson when I visited my endocrinologist for my quarterly checkup. He asked how I’ve been feeling, and I mentioned that I’ve been dealing with a lot of pain, especially in my left arm, and was now experiencing vertigo.
He looked at me, bewildered, and asked why I hadn’t done any imaging tests yet. “It sounds like a pinched nerve, and could be as serious as a bulging disk,” he added.
As soon as he said that, I felt incredibly silly. I knew that my symptoms weren’t typical, but I’d been downplaying their effects when talking to my other care providers because I was so used to the pain. I also think, if I’m honest with myself, that I didn’t want to deal with something else being wrong. That would mean more testing, more appointments, more fights with insurance, and another thing on the list to deal with.
But just because I don’t want something to be true doesn’t change reality.
An important reminder
At my endocrinologist’s insistence, I had an imaging test done. I started with X-rays because they were the most affordable and quickly available. While an X-ray can’t see a pinched nerve or a bulging disk, my doctor was able to see whether there were any structural changes to my vertebrae, which would indicate a more serious problem.
After reviewing my symptoms and comparing multiple years of X-rays, my provider determined I likely had a pinched nerve around my scapula because of inflammation, likely worsened by hypopara.
With a more precise diagnosis than “my arm hurts,” I was able to get more direct treatment. Two days after my imaging, and after a massage, physical therapy appointment, and a visit to my chiropractor, my vertigo went away. I’m still dealing with lingering effects of nerve pain and weakness, but I’m definitely improving. I’m thankful that I’ve been practicing dictation over the past few weeks, allowing me to write again even while healing.
I feel a little silly that I didn’t think to have any tests done sooner, and I’m glad the situation was nothing more serious than a pinched nerve. But it’s a solid reminder that I need to be more open and upfront with my care providers when something changes in frequency or severity. With age-related changes like perimenopause right around the corner, whose symptoms also can mirror those of hypopara, I know this lesson is important to learn, so I don’t miss something dire or preventable.
Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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Michele Rayes
Loved this article and such an important reminder.
Love the line But just because I don’t want something to be true doesn’t change reality.
Glad to see you writing again
Heather Novak
Thanks Michele, I appreciate your support!
I hate how true that line is, but it's one I keep on a post-it note by my desk
Nancy Watson
Hi Heather - I just wanted to let you know how much I have enjoyed your columns. Today's article really hit home with me. I've had hypopara since 2008 and during the past 17 years I've added so many other conditions that it is really difficult to read my body like they suggest, especially when you have symptoms that are shared between multiple conditions. Getting help from doctors has also been very difficult because of the shared symptoms.
One of my doctors teasingly called me a “hot mess” because of all the conditions I have. But I didn’t have these conditions before my surgery. Besides hypopara I also have developed the following conditions: degenerative disk disease; osteopenia; a neurogenic bladder; severe neuropathy in my feet, legs and hands; gastroparesis; cataracts within the first 2 years of hypopara; tendon problems, including hammer toes, calcium deposits in the tendon sheath of my left arm and ruptured tendons in my fingers; Stage 3b kidney disease; type 2 diabetes; A-fib; gallbladder removed; sleep apnea and now I have Parkinson's, all since my surgery. So many of those conditions also have anxiety and depression among their symptoms, just like hypopara.
I was in bed for a year following surgery, including about half that time without any calcitriol or calcium, and very low calcium levels in the 6’s. I listed some of the conditions I have only to show how most of them are nerve related. I was 63 when I had my surgery and most of the conditions I have started in my late 60’s or early 70’s. I am 80 now and I can’t tell you how many times my symptoms were blamed on “old age”, and therefore a connection to hypopara isn’t even investigated. I think more research needs to be done on the effect of hypopara as we get older.
I started Yorvipath about 4 months ago and I have noted improvement in several of my conditions: my eGFR is up to 38 from 30, my A1c went from 7.1 to 6.4, and my brain fog and anxiety have decreased. The rest of the kidney indicator labs are now within normal range except creatinine and it is lower, but not in normal range yet. If any of you aren’t on Yorvipath because of age, I would encourage you to try and see if it will help with your symptoms.
Heather Novak
Hi Nancy,
Thank you for sharing your journey with me. I'm sorry it's been such a struggle!! I'm happy to read that your experience with Yorvipath has been good and that you're more stable now. I was on the clinical trial for Yorvipath and just passed my two year mark with the medication, and it's been life changing for me. I hope you continue to see improvements!