RECENT TESTS AND MANAGEMENT
Posted July 30th, 2013 by Mark
Ghiassi
MANAGEMENT OF CUSHINGS
We got the results of my
labwork yesterday. We spoke with the endocrinologist about
"recovery" and what has happened over the last month.
The management of the pituitary gland
and all of the hormones it can affect is a complex process. This month, we
tested my thyroid gland, and it appears I have hypothyroidism now. So I am now
starting a daily medicine for that. This is fixable with medication that you
have to be on the rest of your life. As I mentioned I felt like a 90 year old
person trying to walk, my doctor said this is a common feeling when people have
hypothyroidism. It will take about a month for this medicine to start working.
We checked my cortisol and ACTH. They
are both as low as when I left the hospital. So a good sign as far as surgery
being successful as far as removal of tumor. This makes me feel good. This also
shows that my pituitary gland is has not "woken" up yet. So to speak.
The doctor explained to us that the
next year will be about changing my dose of cortisol depending on different
results. So since the thryoid is not working, we are actually raising my dose
of cortisol until we test again. The doctor said I should be able to
function.The bone and joint pain is from this as well and we hope that will get
better.
The doctor told Mark and I that the
goal is to get me to a level with the cortisol that allows me to function
normally and then gradually taper the medicine down as we test monthly to see
if the pituitary is working. He explained to us that it may never work as
well, and I would then remain on cortisol for the rest of my life but it is too
early to tell but he wanted us to be prepared for this possibility.
REALITY ABOUT WORKING
In the meantime, he explained that
most people with high stress jobs have a difficult time returning to the job,
he gave examples of a doctor, or CEO of a company, etc. The reason why it is
difficult is because if you are living off of medication only and are in a
stressful job you would have to "stress" dose, meaning give yourself
extra cortisol during times of stress.
For example, right now if I had to
have dental work, this would be considered a stressful situation, and I would
have to take at least three times the amount of cortisol.
So I asked him what he thought about
me returning to my line of work. He had forgotten what I did. I told him I was
an attorney. Mark butted in and said she was a litigation attorney and was in
court all the time. :) The doctor said it would be really difficult because of
the stress as mentioned above with how it is a balance of the right cortisol.
I don't know how I feel about this
right now. I believe it is too early to make any decisions. But it is scary
thinking abut the future. This is why disability is important for me to obtain.
We honestly do not know what type of work I will be able to do, And what type
of management I will need to do.
Even though it is difficult giving up
a career you have worked half your life for, it is not worth staying in that
career if you will always be sick or suffering from trying to maintain your
life while doing it. Plus the recurrence rate is high in people who have these
high stress jobs.
OTHER GLAND ISSUES
I have been Vitamin D deficient since
Cushing's and am on the highest dose that a physician is allowed to prescribe.
So I will remain on that. Cortisol affects Vitamin D absorption.
The thyroid can cause high
cholesterol and some anemia issues as well. I have not had to go on cholesterol
medication but it does explain why it was getting higher. As far as the anemia
issue, we have not received those results yet this week. Most of you you
know that I was anemic, had infusions, and now my red blood cell count is too
high.
WHY I AM SHARING THESE DETAILS
I wanted to be able to explain why
this recovery or management process was long. A lot of people keep thinking
that after the surgery I should be "miraculously" better. I
think it is because we do not understand how complex this disease is, the
affects of the disease on the body, the time it takes to diagnose potential
problems, and the treatment of the medical problems that the disease created.
So this first time I wanted to bore
you all with the details to explains the challenges we will face this next
year. Not only regarding health but about career, etc.
Once again, I am very thankful for
everyone's support. The longer we would have waited for surgery the more
difficult any recovery would be or more damage to me physically.
I promise not to bore you with
thousands of updates but will make updates when they are important about how I
am doing. We are going to keep this website up until October 1, 2013.
Any help is appreciated. Thanks again
Sincerely,
Michelle Ghiassi
No comments:
Post a Comment