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Hi to all those who suffer (often, because of improper medical
diagnosis and treatment) and concerned others. My story is very
similar to those you have personally experienced, read and/or heard
about Grave's. We all have similar symptoms, in varying degrees, and
have difficulty in obtaining appropriate medical treatment. Having
the opportunity to share these experiences and support each other,
emotionally and with medical issues is extremely helpful.
I was diagnosed with Grave's Disease in 1987 at age 25. I had my
first radio-iodine treatment two-years later (no results). The
second radio-iodine treatment was administered a year later.
Following the treatment (I was told there were no adverse side
effects with the exception of possibly becoming hypothyroid [which I
was told is easier to treat than hyperthyroidism] hmph!) A day after
the first treatment I had a burning pain that increased when I
swallowed. In 1988, while I was on PTU and beta-blockers, I still
was extremely hyperthyroid. I had a few episodes where I was
completely paralyzed for short periods of times (1-2 minutes
perhaps). Once, this occurred while I was carrying my infant son
while walking down a step of stairs. I was slightly aware of my
surroundings but could not make a sound or move a muscle. I lost my
balance when I came to and immediately forced myself to fall
backwards to avoid dropping my baby or falling on top of him. My
doctor had no explanation for this and increased my PTU.
The next time it happened, I was in my car, stopped at a traffic
light. While I was stopped, everything turned white, I could not
hear anything and could not move. I started to come out of this just
seconds after the light turned green and was able to pull over to
the side of the road. The doctor diagnosed me with a middle ear
infection and prescribed an antibiotic. I was fine for weeks (except
for all my other symptoms).
Then I was driving on the highway, following a friend and it started
happening. I was completely paralyzed. I remember trying to scream
'help', but no sound would come out. I could not take my foot off
the gas, or even move my other foot to brake, I tried with all my
might to move my hand to beep the horn to signal my friend, but I
could not. By the time I came out of this, I was headed towards the
guardrail at a high rate of speed. I was beeping my horn, but my
friend did not notice I was in trouble and no other cars were
nearby!
I braked the car and turned to avoid hitting the guardrail. I stayed
in the emergency lane for a few minutes to regain my composure. My
son was in his car seat, in the backseat and I was so scared that I
could have killed us both and felt I had to try to hold in my fear
so that I wouldn't scare him. I drove slowly, with my hazards on
until I reached the exit where I was to follow my friend to. She had
no idea that I was having any difficulties on the highway, but had
become concerned when I didn't pull off the exit soon after her. She
drove me to the hospital, and she cared for my son while I was in
the examining room.
While I was in the examining room, I started crying hysterically.
The ER was at the same hospital where the clinic that diagnosed me
with Grave's. A doctor had come in to talk to me and suggested that
I be admitted to the hospital. I did not want to because my son was
only 8 months old and I could not fathom the thought of having
someone else care for him. I had no family in the area to help me.
The doctor convinced me to place my son in temporary foster care.
She knew I was scared that we would be in danger, and had been in
danger when I had these spells. I had been hospitalized when I was
very young and had very little recollection of this. The only other
time I had been in a hospital was to visit my father after he had a
heart attack and the two days when I gave birth to my son. I was
wheeled to a room and just laid in my bed, crying. Some nurses came
in to talk to me and, when it was time to eat, I was escorted to a
small cafeteria area. There was also a ping-pong and pool table. I
commented about how odd this seemed. That is when I found out I was
in the psychiatric ward! I was in shock and didn't know what to do!
I was embarrassed to call my family or friends and I requested to
the nurse that I wanted to go back home. I was told that I was not
allowed to for at least a week! I have never felt so helpless in my
life!
The psychiatrist diagnosed me with depression and prescribed
antidepressants and anti-psychotic drugs. These medications made me
feel 'disconnected' and seemed to worsen the thyroid symptoms. I was
told if I didn't take the medication that I would have to have shock
treatments, so I took the medication. I had to attend therapy groups
and meet with a shrink daily. I continually insisted that I was not
depressed, and insisted that I get treatment for my thyroid
condition. I have never in my life been depressed and/or diagnosed
with mental illness and knew that my symptoms were related to my
thyroid condition. I soon met with an endocrinologist, who
recommended and arranged for a radio-iodine treatment.
I was told that there were absolutely no adverse side effects to the
treatment. The day after the treatment, I started getting a burning
pain in my throat. It felt like I was swallowing hot chunks of coal!
The nurse and doctors ignored my cries of pain. I was finally given
tylenol, which did not help. Finally the endo. outright accused me
of fabricating the pain. He said that I was eating just fine. It had
already been two week so I immediately asked to consult with another
endo. The next day an intern examined me. Both endos returned the
next day and decided that my salivary glands had dried out due to
the radio-iodine (no side effects?) and gave me a dose of
prednisone. The pain was gone within hours. A couple years later I
discovered, while doing research for a college nutrition course,
that the caloric requirement for someone who is hyperthyroid in
5000+ calories/day (West Diet). It is widely known that an
insatiable appetite is a common symptom of hyperthyroidism and I ate
much
despite the physical pain (I weighed 115lbs).
Soon after this, I arranged to be discharged from the hospital.
During the week before I was to be discharged, I suffered another
spell of paralysis while I was getting dressed one morning. This
delayed my discharge date another week. Altogether, I was
hospitalized for 5 weeks. It would be another two months, despite
daily pleas to the State Child Services, for me to get my son back.
Even while I was hospitalized, I arranged visits with my son every
other day (except while I had radio-iodine). This entire experience,
from illness through treatment has been physical and mental torture.
I would also find out that many anti-depressants can worsen symptoms
of hyperthyroidism (and hypothyroidism) mainly because a common side
effect is heart palpitations (which worsen the existing ones).
The second radio-iodine treatment (1990) was a horrible nightmare as
well. I went for the treatment on an outpatient basis and had my
aunt care for my son (she said I should have asked her during my
last hospitalization, but I thought I was only going to be
hospitalized for a couple of days, etc.). After the treatment, the
endo told me to come back in 6 months. After about a week, after a
day of running errands, I felt I could barely keep my eyes open to
drive home. When I got home, I put my son's playpen in the living
room, set him down (hoping he wouldn't climb out [he was nearly 3
years old now] and I dropped to the floor and slept for two hours. I
called the endo and he said my lethargy was not related to the
thyroid. I then went to my GP and, since I had a bit of a cold,
attributed it to that. By the beginning of the third week, I was
sleeping most of the time and just waking up to care for my son (my
son's father [who would not let us move back home after I was
hospitalized] would come over and help as did my aunt. I also felt
very bloated and weighed myself. I had gained 25 lbs in less than 3
weeks! I immediately called the endo [who accused me of
exaggerating] but told me to come in for an appointment. I told him
that I could barely move, let alone drive and hung up. I called my
GP and told him about my weight gain and other symptoms. He had the
pharmacy deliver Synthroid. By the end of the next week, my symptoms
improved enough and I was able to go to get blood work. The results
-my thyroid had completely failed within two weeks of radio-iodine
(I suspect I was given a large dose). My GP told me that I probably
would have gone into a coma in a matter of days if I hadn't of
called him. My endo did not offered me any explanation. If I
followed his instructions, I would have been dead well before my
6-month follow-up appointment. Needless to say I never went back to
him and considered a lawsuit.
This all occurred in May of 1990. Through the summer, my symptoms
slowly improved and I lost all the weight I gained. I re-registered
for college and started classes in the fall. I did have alternating
hypo/hyper symptoms and had my medication adjusted. By the end of
the year, my eyes grossly protruded and remain so to this day. My
fellow students and co-workers noticed this and didn't know how to
take it. I didn't realize how awful I looked until I saw a picture
of myself and was totally appalled. I had know idea I looked like
this. I have recently found out that the protrusion was most likely
a side effect of the radio-iodine (no side effects?!). The
protrusion can worsen in people who have radioactive iodine, unless
prednisone is given along with it, but my doctors did not give me
this information.
Also, since radio-iodine I have continuously suffered
upper-respiratory symptoms (I had never had one in my life, rarely
caught colds). Most likely, because I have not been on appropriate
thyroid replacement until my medication change this past November
(heart palpitations stopped just last month and I am Euthyroid for
the first time ever) that the alternation hyper/hypo condition made
me susceptible. Last summer I had pneumonia and was on a too high
dose of Armour. When my condition improved by the beginning of
November, I got flu and pneumonia shots. This is my first winter
since 1991 that I haven't even had a cold. Usually, by the holidays,
I have had bronchitis and severe sinus infections. So, it's
difficult now to determine if the shots, or being Euthyroid has
prevented me from being ill.
Every year since I began thyroid replacement, I slowly began to put
on weight. A few years ago, the weight gain became increasingly
worse. Altogether, I have gained 30 lbs in the last 3 years for a
total of 45 lbs since 1992.
These last years since radio-iodine have just been another nightmare
with a whole host of symptoms. I have only been Euthyroid for about
a month and I'm hopeful that my memory/concentration difficulties
will improve (GP says it's the last symptom to be eradicated and may
take months, my endurance is still poor and my skin is still dry and
of course, the weight problems.
It's been almost two years since I've gotten a computer and have
been online. I would not be in my current state of health if not for
online resources. I had difficulty understanding my condition,
symptoms and treatment until then. I was only offered a small
pamphlet about Grave's Disease 3 years after I was diagnosed. Then I
was able to get info from the Thyroid Foundation of America. I was
able to explain somewhat, my condition to people.
I did start doing some research at the University library in 1989-90
but found the terminology in the publications, difficult to
understand.
When I got online in 1998, I was overwhelmed by the resources I
found. By November of 1998, I was able to ask my GP to try me on
Cytomel (synthetic T3) and had a marked improvement in my memory. I
found a new Endo (they're all basically the same) and she put me on
Armour. This worked out great because it contains both T3 and T4. By
this time, the bogus Synthroid claims were well known and a study
had come out that suggested that the addition of T3 can improve
concentration/memory. If fact, since the Synthroid issue had been
resolved, we had seen an improvement in treatments in treating
thyroid conditions and I am hopeful that this continues to be a
trend. Unfortunately, it has taken several medication changes to get
me on the right amount of Armour and Levothroid. I have no idea why
I can't take just Armour, but for now, I'm content to have thyroid
levels which my doctor claims are 'well' in the normal ranges.
I also found out that I didn't need to wait 3 months between each
medication change I had (I sometimes would not have time and put it
off for much longer). What I learned to do was, when my blood work
would (and often!) come back abnormal and the Dr. adjusts the meds
-it takes 10 days to reflect full blood level changes. Then I would
wait only another week or two for the full effects (to note any
improvements/worsening). So all together, no more than 3 weeks. Last
Spring my Dr. increased my dosage way too much after I had
hypothyroid. I should have questioned the increase. I also had
bacterial pneumonia and pleurisy which worsen the heart palpitations
also. This was at the end of June, last year. My endo lowered my
dose (lower than it was before when I was hypo!) and again I didn't
question! But in July my blood work was perfect. I felt great, for
about a week. I was hopeful but slowly I felt I was becoming
hypothyroid. Sure enough, in August I was very hypo. The 'normal'
blood work just happened to occur when I was on my way back down to
becoming hypo. She increased my dose slightly and in September I was
still hypo. I had an increase in November and since November, I have
been on a therapeutic dose. Since I've been going to this endo -I've
had countless dosage adjustments. Once again, I am hopeful but I
will have my blood levels confirmed by my endo and GP.
It is very difficult to seek medical treatment when suffering from
concentration and memory problems and all the other physical
symptoms. I have found it difficult to ask my Dr. questions, when
I'm really ill. Oh, by the way -the paralysis symptoms I suffered
from is a rare thyroid disease symptom which is referred to as
'periodic paralysis'.
I also have found out that hypothyroidism can also cause heart
palpitations due to an increase in blood pressure/adrenaline. I also
had been suffering from fluctuations in blood sugar levels. I
started to notice that, almost immediately after eating, I could
barely keep my eyes open and could sleep for a couple of hours! I
have reduced carbs and increased protein. I also learned that I
can't take herbs (ginko, ginseng, etc.) that I once thought could
help with my memory, because they are a stimulant. Adversely,
anything potentially sedative over-sedates me. Last week I took one
dose of Allegra and I was out for 15 hours!
Thyroid conditions are more difficult and less understood than other
endocrine disorders, such as diabetes. I also find that people (in
general) can be very sympathetic and considerate to diabetic
symptoms (hypoglycemia [heart palpitations, confusion, agitation])
but not for a thyroid patient who suffers the same symptoms when
blood sugar levels fluctuate. Every endo knows that diabetes is much
easier to treat than thyroid conditions.
It will take years of research and widespread public campaigns
(including fundraising for research/support) until the general
public will no longer be ignorant to thyroid disorders. For now,
ignorance prevails. And until that time comes, many people will be
suffering needlessly. Many of us have been so misunderstood to be
thought of and even diagnosed as mentally ill. We continue to be
discriminated against as a result of our symptoms that we can no
more control than other medical conditions that require therapeutic
treatment.
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