What is Wrong With Me?

Have you ever known there was something wrong with you, but you had no idea what it was? Ever felt scared to find out what the problem was for fear it would be terrible news? This happened to me.

I recently had a parathyroidectomy. I have had a lot of questions about my illness, how they found it, what symptoms I had, how they did the surgery, what my scar looks like, what are parathyroids,  what do they do, etc. I thought it would be good to share my story and answer some of these questions in hopes that it will help someone else who might have the same illness but not know the symptoms.

 

Since summer, I  had a lot of strange symptoms that didn’t seem to be connected.

  • I had severe bone pain in my right leg. (Pain that at times hurt so bad I could not walk.)
  • I had severe joint pain on both sides of my body in my thumbs, wrists, elbows, ankles, and knees. (Pain that had me on my hands and knees to get around many times and I was unable to go up and down steps much….going down was the worst.)
  • Chronic fatigue. I felt tired and run down. More tired than normal…just no energy. (I’m normally pretty energetic.)
  • Just didn’t feel normal. Didn’t feel sick but didn’t feel good. Something was off.
  • I had trouble remembering things. Like someone would tell me something and five minutes later I wouldn’t remember. Words I used all the time I would forget. If it wasn’t written down it was gone. This isn’t like me. I have always had a good memory. I became totally dependent on lists and notes.
  • I thought I had adult ADHD. I didn’t seem to be able to focus, to concentrate on anything for long periods of time. I felt like my mind was on a treadmill, jumping from thing to thing.
  • I had trouble sleeping. Couldn’t sleep through the night. Was awake every couple hours. Had trouble getting to sleep.
  • Tired during the day, but even on weekends when I would take a nap I didn’t feel better.
  • My blood pressure was up, not dangerously high, but higher than normal for me.
  • I had heart palpitations.
  • I had a history of kidney stones.

None of these symptoms seemed in any way connected. Some of them are things you don’t want to broadcast for fear of hurting your professional image. Some were very scary. I kept these symptoms hidden as well as I possibly could and only shared with a few people that I was having some problems. Looking at these symptoms, I thought a number of things, 1) I was getting old and this came with it. 2) I had Rheumatoid Arthritis. 3) I had bone cancer 4) I had Alzheimer’s or something similar. I had no idea they were all related and thought each were coming from something different. It was sort of scary. Especially the brain part.

In the early fall, I visited my family physician who agreed that he thought I had Rheumatoid Arthritis. He ran a bunch of tests for other things too, and x-rays on my leg. But everything came back negative. He thought the test might have been a false negative so sent me to an Arthritis Specialist since my symptoms were so pronounced. They too thought it was Rheumatoid Arthritis and ran a million more tests. (In one week I think I counted 26 vials of blood!) All negative!

I was beginning to think that I was mental. I had pain like I had never had in my life and it was affecting my quality of life and they couldn’t find what was wrong. In a followup visit my Dr. suggested I stop taking calcium supplements since my calcium was high. I told him I hadn’t been taking them, I quit taking them a while back because I felt worse when I took them. He ran more tests to see if my calcium was still high and some other tests. When they returned he told me I needed to see an endocrinologist because I had high calcium and high parathyroid hormone. He thought I might need surgery. But I had not idea all my symptoms were related to this.

I had to wait a month to get in to see the Endocrinologist, she ordered some additional tests which confirmed I had hyperparathyroidism. Now what was that….I didn’t even know I had a parathyroid???

Check back tomorrow to learn the difference between the thyroid and the parathyroid. And how it connects to all these symptoms.

Leave me a comment if you have had a similar experience and didn’t know what was wrong?

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12 thoughts on “What is Wrong With Me?

  1. Juan G Garcia says:

    Is so sad to hear all those illness. I hope you get better as soon as possible. In my case I only have diabetes that in 2003 went bad and I got a problem with the nerves, basically on my legs. Now is controlled, mainly by my wife cares and my will.

  2. Lisa Meck says:

    Glad that you are sharing this experience. anxious to read the next part. Tell me that this isn’t hereditary.

    1. No, it is not hereditary. I just posted today’s post about the disease. Tomorrow you get to see pictures of the surgery.

  3. Is it normal to hear surgery will take 4 hrs.?

  4. After my diagnosis I truly thought how someone should write a blog to get the word out about hyperparathyroidism. Friends of mine hadn’t heard of it when I was diagnosed and basically I had to hound my doctor to continue testing after my calcium appeared high for 7 years in a row. When I saw my first endocrinologist he actually told me my numbers weren’t bad (although my bone scan showed osteopenia which had developed over the last 2 years) and I could “watch and see”. I immediately called Mayo Clinic and after tests etc had surgery in 2 weeks. How long did you suffer with this before it was confirmed? Why don’t primary docs react quicker? My surgery was 3 weeks ago and my joint/bone wrists and thumb pain is still very evident but the forgetfulness is already better. I bet I’ll just continue to feel better. Thank you for posting your info. Advise to others–Be aggressive with your own medical care and please educate yourself with regard to your disease. Feel free to comment back to me or respond thru my email if you are able.

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