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
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.
