Wednesday, May 27, 2009

Calcium and the Parathyroid

I had no idea that we all have a thing called a Parathyroid until last Fall, when I was told that my blood work came back with high calcium, low vitamin D, and too high of Parathyroid Hormone as well.

It seems that both my pituitary tumor and parathyroid tumor were found as a result of something else being checked. I think of it as bad luck, but perhaps in the end it is good luck that something led to something else and things can be monitored and cared for like they should be.

I wrote at one point about having issues last Fall and being monitored for one week at UNMC's 24 hour EEG/Video monitoring unit. I had been having unusual or out of the ordinary seizures for me. Things were different this time with these breakthrough partial seizures. The monitoring took place and although I had an abnormal EEG I did not have any seizures while I was being monitored.

I continued to have "odd" feelings and things that I felt were like my simple partial seizures or auras like I had had before. Follow up blood work after my hospitalization indicated that my calcium level was continuing to climb. The endocrinologist scheduled my Sestamibi scan, which revealed the tumor on one of my parathyroid glands. I had a follow up ultrasound on my neck as well. This was to check another item that was showing up on the scan. It was an unidentifiable thing.

Surgery was scheduled to remove the Parathyroid and the unidentifiable item for February. Unfortunately, my new little boy from Ethiopia came down with Hepatitis A and was admitted into the hospital for 4 days! Because of my exposure to his active Hepatitis, my surgery had to be postponed for 3 months.

I had surgery 3 weeks ago and am finally feeling pretty "normal". I can only say that if you know of someone or if you yourself have a parathyroid tumor and/or high calcium, that once that is removed and things are regulated, you will feel like a different person. My bones had been aching, literally aching, since at least April of 2008. I remember noticing it, because I had just turned 40 and I thought maybe I was getting arthritis or something. I was so achy. I told my husband that every morning when I woke up it felt like I had been hit by a truck. It was six months later that the calcium blood work revealed the high levels. The tumor was diagnosed in January I believe, and then surgery was in May.

The neck surgeon removed the parathyroid gland/tumor and a lymph node. The surgery itself was not too bad. I noticed in the recovery room as I was waking up that I did not feel achy anymore. I could not believe how quickly I felt the difference. And now 3 weeks later I feel 10 pounds lighter (even though I literally have lost no weight!). My bones felt that heavy and it felt like such an effort to do anything.

I have read on the internet that some people call the parathyroid tumors and high calcium "moans, groans, and psychiatric overtones". I think this is so fitting. And I also believe that some of the things I was feeling emotionally and psychologically and neurologically were all due to high calcium.

The surgery has certainly not taken my Epilepsy away, but it has had those "odd" feelings that I was having back in the Fall go away. I have had no auras or any type of seizure activity since the surgery.

When you have simple partial seizures, it is very difficult at times to differentiate between a seizure and other times when you're just feeling "off" or "odd". I think I had a little of both going on last Fall when I was monitored. I was also suffering from side effects of my Epilepsy drug, Lamictal. I thought I was having myoclonic jerks at night, but once I was taken off all medication in the hospital, the jerking that I did at night went away. It has not come back since I've had the lowered dose.

1 comment:

naanaa said...

hi michelle. i am commenting on the parathyroid. This is a problem bc I have no insurance. Tonight my parathyroid is aching. I hurt all over from fibromyalgia, a form of arthritis. One of the side effects of low thyroid left untreated is arthritis and heart disease. I am very sick as I write this. Reading your blog makes me want to cry to know there is hope that one day I can get insurance and get rid of all of this. I am 52 and have lived with this a long time. I distrust doctors bc many times they find nothing though I have a fair sized enlarged goiter. I was told once about 3 years ago that my calcium was high. Thank you for writing this.