Thursday, February 25, 2016

My Life On Natpara

From the pages of The HypoPara-post 

This issue is devoted to Patient experiences with Natpara.
The images are from the pages and the story is below. 

a definition from healthline to help understand what this condition is.
Hypoparathyroidism is a rare condition that occurs when the parathyroid glands in the neck do not produce enough parathyroid hormone (PTH).

Everyone has four parathyroid glands located near or behind the thyroid gland.  Each gland is the size of a grain of rice.  The major function of PTH is to regulate the level of calcium in your body.  It also controls the level of phosphorus and has a role in the production of the active form of vitamin D.  All of these activities are required to maintain calcium balance.

Having too little PTH causes low levels of calcium and high levels of phosphorus in the body.  This condition may not cause any serious medical problems when it’s caught early, but it does require lifelong monitoring and treatment.  

For more information you can just ask me or visit Healthline

My Life On Natpara
                                                                          By Jenny Lunde

Hi, my name is Jenny Lunde.  I have been living with Autoimmune Hypoparathyriodism for a long time.  It has been a hard route over the years, but I have mostly controlled my issues.   So much of my life I try not to remember, or my mind keeps me from remembering, the past.   I wasn’t diagnosed until I was 29 years old after my second cataract surgery.  My health records show my calcium level was low (8.1) when I was 18 years old, but it was missed.  Trust me, I went to a number of doctors over those years for all kinds of symptoms.  Finally my doctor ran a routine calcium test and was shocked at the test results (5.5).  He retested me three times to make sure all the labs were correct.  I wish I could say that was the only time I got that low, but under another doctor’s care years later I averaged 6.0. My hardest journey was during this period of time, which once you go through it you never want to revisit it.

I met my husband and moved to Minnesota where I joined his lifestyle.  My husband is very active, skating marathons and long distance biking.  The first couple of long bike rides were very hard, more because I could see myself doing something more productive if I was in front of a computer.  But once we started looking at tandem bikes, a bike built for two, bike riding became fun.  I can talk about anything and most of the time he can hear me.  He never looses me on the trail now.  If I am not feeling good he helps me by pedaling slowly because my muscles feel like they are about to cramp up.  Tandem biking is all about teamwork, which we have in our marriage.  Tandem biking has helped me become stronger and healthier.   Over the years we have done a number of RAGBRAIs.  This bike ride takes you from the Missouri River on the western border of Iowa to the Mississippi River along the Eastern border.  We also like doing local bike rides around us; averaging about 2-3 bike rides a week on non-snowy days.  Our motto is “four legs, two heads, one direction”. 

At the end of 2014 I started to notice more heart issues than normal.  I found a new endocrinologist, but she moved.  So in March of 2015 I found another endo.  He told me about this new drug called Natpara and asked if I wanted to try it.  I told him about my heart concerns with no response.   It took me a day or two to decide on trying it because of my heart.  After many long weeks trying to get hold of him, he told me to talk with the Mayo Clinic regarding this drug.  I made the call and met with another endo.  I asked about my heart again and really didn’t get a reaction.  During my last phone call with my endo I asked him again about my heart, it was really hurting and scaring me.  The day before I had my biggest and longest heart issue lasting 12 minutes and scaring me to death.  I knew something was very wrong.  He said to call my PCP.  My local endo told me he no longer wanted to be involved with my treatment of Natpara, leaving me with Mayo.  I called my PCP and he sent me to a cardiologist where they ran a stress test and echocardiogram a week before starting the drug.  They both looked about average.  I was also given a heart monitor for a whole month.  I was hoping for some type of relief for my heart so I jumped into starting Natpara at the beginning of June, only to wait about 2 months before I was finally approved.  I had to jump over hoops; CT scan, kidney scan and a 24hr urine test, and all the phone calls you all know about. 

Once on Natpara I noticed some improvements, such as not needing as much sleep.  I had never felt so good.  In June at the Hypoparathyroidism Conference I shook terribly.  People asked me about it as if they were concerned they may also develop this side effect.  My shaking started back around 1994.  Sometimes my shakes come out more when I am around people I don’t know, I hate when people point it out.  Before being diagnosed my hand would shake so badly I had to hold my glass with both hands.  You learn how to hide it and adjust your body.  During those couple of weeks after starting Natpara the shakes came on almost that badly.  My calcium levels increased to 10.4, 12.3, 10.7, 10.6, and 11.2, so the Mayo endo decreased my Natpara to 25mg and decreased my Rocaltrol too.   After the one-month heart monitor period, I had another doctor appointment, but this time it was with the Electrophysiology doctor (EP).  His diagnosis was that my upper and lower chambers are sometimes out of sync.  This is called SVT; he thought this might have caused that 12-minute episode back in May.   He said this condition is not calcium related.

Life on 25mg of Natpara was hard and that was when the bottom fell out for me in late July.  My husband never saw that part of my life.  The mood swings, sharp cramps, hopelessness, lost and confused, suicidal, and the scariest part was choking on food.  I even choked on water and rice.  The doctor increased me to two Rocaltrol and my choking mostly stopped.  Who wants to die while eating?  Slowly each week I could feel some improvement in my mood.  My body muscles would move, not just after the shot, but all through the day. Small jerks where the muscle met the bone.  These movements repeated themselves sometimes for 10 minutes or more.  During the day from 11am – 3pm I would have crash-like issues.  I know I wasn’t imagining how deep I was falling each time these happened because one episode ended with my feet and toes curling into weird positions.   During these episodes I would feel sad, with a strong wave of deep sadness coming over me, sweaty, weak, over heating, shaking, nervousness, feeling out of my body at times, excessive burping, and the shakes become stronger.  These episodes happened on small nature walks, shopping, vacuuming, etc, causing me to second-guess what I could do.  They were happening more often. I didn’t look to the next day; I just lived for that day.  I was tired, worn-out, unhappy, unable to do the normal things I used to do.  The lack of quality of life wasn’t something I could give up for me or for my husband.  At times I felt waves of emotions, sadness then a feeling of slowly coming out of it, and then normalness.  Then after some time a crash of sadness again, only to follow the same journey back. 

I am not sure what happened while I was on Natpara.  I stayed on it for 6 months because of bone health.  But my overall health outweighed staying on the drug.  Most of what happened seems to be a blur.  Like the part of my past that my mind forgets until I have side effects like from the past.  All I knew was I needed a second opinion from my PCP to know if increasing back to 50mg was safe due to the urine calcium, high PTH and high vitamin D levels.  In the end I knew I needed to stop Natpara.  Once getting off Natpara my body had to adjust to the lower levels.  I was unable to get to a standing position from a sitting position without help.  It hurt to walk.  But I felt so good over all.  I felt relief.  I felt the air around me and the day in front of me.  I felt I would live another day for many to come. I felt my hopes and dreams coming back into my life once again.  I still have my issues.  I am not totally out of the woods, yet.  I am taking more Rocaltrol than before Natpara.  I am not able to get to an 8.5 calcium level yet and I have issues with some weak muscles, but in time that too shall pass. 

It is a new year, a new page in my book.  Not sure what this next year will bring.  A number of trips are scheduled, so we will see if I can get back to exercising again so I can rejoin my husband on our journey of Four Legs, Two Heads, One Direction.   

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