 | Taking on
the Docs, Jerry Springer and More... Reader Mailbag |
Dateline: 6/22/98
Take a look at what's in my mailbox these days, as you read a selection of letters from readers, including:
- The Reader Who Takes On The Three Doctors Who Failed to Diagnose Her Thyroid Problem!
- "I'm Out to Get My Endo"...On the Next Jerry Springer?
- Do Alternative Treatment for Graves Actually Work? They Seem to For One Reader
- One Reader Takes on the English Medical System
- Some Really Nice Readers Write!
"Dear Mary: Well, your article (
"What's Wrong With These Doctors") inspired me to let the doctors that kept me
from a real diagnosis have it! I thought I'd share my letter with you..."
She then includes the following letter, which she sent to her doctors.
Please add to my file that I have been recently diagnosed with hypothyroidism and will be taking
Synthroid regularly and permanently. I was diagnosed by Dr. Warren Fraser M.D., an
Endocrinologist, due to the results of the thyroid antibody test that all three of you so vehemently
denied to perform. According to Dr. Fraser my antibodies were high and although my TSH was
within normal range, I exhibited many symptoms of a hypothyroid. He acknowledged the
severe water retention and fatigue as symptoms and found my thyroid to be swollen upon
physical examination.
I'm sure this comes as quite a shock to all of you since each of you repeatedly insisted that my
symptoms couldn't possibly be related to my thyroid.
Dr. Walker: You said that being tired in the morning is a sign of depression. Have you ever been
sick or had an infection? Illness taxes your body and causes fatigue. You said it was impossible
to swell above the waist unless something was seriously wrong. Evidently you've never lived
with a woman. Most I know do so monthly without anything seriously wrong at all. After finally
convincing you to run blood tests, I asked you to do a complete thyroid panel. I explained my
reasoning was due to my Mother's hypothyroidism being misdiagnosed for years until someone
finally did a complete thyroid panel on her. You agreed to do this for me, yet when I went to
have blood drawn the next morning they informed me that you had only ordered the basic TSH
test done. I have to wonder; Did you think I was so ignorant that I wouldn't know what a full
panel was, or did you not know what a full panel was, and therefore were unable to order
one?
Mr. Knight: While I think you are incredibly bright and I like your personality, I have a few
thoughts to share with you as well. You accused me of reading too much and diagnosed me with
an anxiety disorder. Are you glad that I didn't listen to you and sought another opinion? I
certainly am. By the way, after comparing my current test results with those of three years
ago, Dr. Fraser agreed that my thyroid was headed in the direction of my Mother's (non
functioning) and thought it was important to treat it now. Didn't I ask you about that very
possibility? You should be very careful about diagnosing someone with something as serious as
depression or an anxiety disorder. You are not (to my knowledge) a trained Psychiatrist or
Psychologist. Serotonin re-uptake inhibitors chemically alter the brain! I'm not comfortable with
someone of your educational background handing them out after a 20 minute consultation. While
I'm sure you are capable of diagnosing a VAST range of illnesses, it would seem to me that
something that serious should be left up to a specialist in that specific field and not a General
Practitioner at any level.
Ms. Hodson: Thank you for listening to me and understanding that my symptoms were physical
and not emotional. You reassured me that I needed to keep probing until I found an answer. I
do wish that you had taken the possibility that my thyroid was causing the problem more
seriously. I could have started getting well a lot sooner.
After almost two months of treatment with Synthroid I'm beginning to feel normal again. I'm
sleeping better than I have in years, I have energy to spare, and I can wear my wedding wrings
most of the time. I can't tell you how sad I am that each of you refused to order the one test I
asked you to perform. Why would you put me on Paxil and birth control pills instead of
running this test? I have a family history of this problem! I had symptoms! Was it really THAT
much to ask? You prolonged me being sick. You made me feel like I was crazy. I resent
that!
I realize that medicine is not an exact science and that practitioners make mistakes. Had you all
tried and tested everything possible and missed something I could accept that. The fact that you
plainly refused to perform one simple test, the very test that uncovered my problem, (like my
Mother's) infuriates me.
I owe co-payments for the visits to the three of you. I have no intention of paying them. I see no
reason to pay for having my requests denied and being misdiagnosed.
Sincerely,
Debra ___________
Within three months I became hypothyroid and decided to go off the Tapazol and
just continue with other alternative strategies. I did counseling to deal
with stressful emotional issues, cut back on my workload, read everything I
could about the thyroid, spoke with lots of people who had Graves, and became
more reflective and spiritual. For about a year, I was considered
"subclinically hyperthyroid". I had no symptoms, normal T3T4, but almost
undetectable TSH. Then I had another stressful experience with a
relationship and my T3T4 numbers started to rise, so I again began taking
Tapazol (15 mg) at my endo's recommendation. I took Tapazol for 13 months,
reducing the dosage to 10mg, while learning how to relax more, be more
patient, etc. Last December I took myself off the Tapazol and have been
tested every 6-8 weeks since. So far my TSH and T3T4 are still within the
normal range. I have no symptoms and hope to remain in remission. I am
fortunate to have an endo that supports my judgments and works with me as a
"partner". I see him every 8 weeks. I encourage people to use their thyroid
condition to look at their lives and make whatever adjustments they can to
facilitate their healing. RAI and medication alone may not "cure" thyroid
disease. Since the thyroid is in the throat area, I assumed that it could be
related to suppressing anger, grief, emotions. And I also realize that I was
"driven" in my work life...I had to move fast and think fast...perhaps my
thyroid was simply trying to "keep up" with my work schedule. Although it
took 3 years to get to remission, I realize that I have had to learn
patience..to slow down to learn how to wait. I used to be so compulsive and
impatient. So, in some ways, this thyroid condition has been both a "wake up
call" and a contribution to the overall quality of my life. I know it sounds
a bit Pollyanna, but it is true. I listened to what my body was telling
me...TO SLOW DOWN and now my body is healthier. Of course, I realize I could
relapse, so I am doing everything within my power to reduce stress and tension
in my life. I have heard of others who have been in remission for 8-10 years
or longer. I hope to be one of them. -- Esther"
July 1987 I was having some trouble with my eyes and thought it was just eye
strain or something like that, so I went to the Optician. During the test the
young girl asked the owner of the practice to come and have a look. He asked
me if I had been having any problems with my eyes ?, I said that they had been
very gritty and sore and as of late I had been getting this dull kind of ache
around them, he then suggested that I should go and see my Doctor saying that
there was some sort of growth behind my eyes, but added that I should not
worry too much because he suggested that it could be a thyroid problem and
not too serious.
I went to see my Doctor who had received a letter from my Optician explaining
what he had found. After he had examined me he said that there was something
but was not sure what it was and proceeded to make an appointment for me at
what then known as the R E S H ( Royal East Sussex Hospital ) in Hastings,
there then followed months of various tests, ending in a inconclusive
diagnoses, by this time the pain had become constant. I asked the specialist
at the clinic if they had any idea what it was ?, they just said that it was
congestion behind the eyes and they were not sure what was causing it, I would
have to see my Doctor for the results.
I went to my Doctor and asked him what conclusions ( if any ) they had come
to. He said basically none, and when I asked about the pain, his reply was to
prescribe pain killers. That was over ten years ago, I have survived fairly well with my own
devices
to combat the pain, and the body is a remarkable machine, the pain is always
there but like a constant tooth ache your body just accepts it and adapts and
you change your life accordingly.
Some two years ago, back at the Optician's I was stonily advised to go back to
my Doctor. This I did repeating what the Optician had said which was that the
" Congestion " appears to be getting worse. My Doctor then went to great
lengths to tell me how the profession had progressed since I was seen last
time and that now we had the new hospital in Hastings ( The Conquest ) he
suggested I try again.
More tests followed again saying that there was a problem calling it
congestion but still did not know what was causing it, and when I asked about
the pain, the reply was that I will just have to put up with it and see my
Doctor, they could do no more and that the results would be sent to my Doctor
and he would be in touch with me.
He never did I had to ring him, he said the results again where inconclusive
and as for the pain, more pain killers ( which I refused ) and went back to my
old ways which had served me well over the years.
Easter last year things changed, a new type of pain appeared, one that was so
severe that I just couldn't handle it, and for the first time in my life I
went begging in tears to my Doctor asking him to do something, he then took
along look at my notes and said that the specialist who saw me last had
thought that the problem could have been Thyroid but as the results had shown
not evidence of any abnormalities they had ruled it out. It was then whilst
looking back through my notes that it dawned on him that this had been going
on now for ten years come that July, he went ashen and said I will get you an
appointment with a specialist at MOORFIELDS eye Hospital in London.
The appointment arrived and I was dismayed, it was made twelve weeks away and
left me feeling depressed and suicidal, my wife suggested I ring MOORFIELDS
and ask if it could be brought forward. I rang them and was told that routine
eye appointments could not come before urgent ones, I was completely shocked
and explained my circumstances. She then suggested that I get back to my
Doctor to put matters straight, it was then that I found out that his practice
manager had made a mistake. New appointment tenth of June, I was seen at first
by the consultant's student who after only a few minutes diagnosed something
called THYROID EYE DISEASE she then had this confirmed by the specialist Mr
Lee himself who then called his other assistants to come and look, saying how
advanced it was and sarcastically said "they didn't know what it was down
there " ( meaning Hastings ) I then told him a little about what had happened
and that it had been going on for ten years, he was totally astounded, "at
least it should have been monitored on a regular basis even if they didn't
know what it was " he said .
I was given an address of a support group T E D who sent me information on the
disease all of which appertained to it in the early stages and how it could be
made bearable various treatments to make things bearable, all of which left me
feeling very angry and let down.
It is only now that the full implications have hit me having been off work and
only receiving statutory sick pay with father visits to London for treatment
and the knowledge that the future looks none too rosy, I am sure that you will
understand my feelings on this matter.
But the story doesn't stop there.
Having found out through my support group various treatments that I
needn't have suffered for so long I decided to take legal advice.
Having found a solicitor and on his advice decided to sue my G P and my local
Area Health Authority, not realising the implications and what a very close
knit community the medical profession is. It was after I was given legal aid that it started,
suddenly the consultant at
MOORFIELDS wasn't sure of his previous diagnoses recommends I see a different
specialist at a different Hospital and so it goes on.
I was last seen at Charing Cross Hospital a couple of weeks ago and was seen
by a stand in consultant, who again was amazed and even asked if he could take
some photographs to show at training sessions saying he had not seen such a
"CLASSIC" case ( as he put it ) he then went on to recommend decompression but
would not say which one, that was up to my consultant ( who was away on holiday
) to recommend.
That's the story up to date I'm sorry its long but I have tried to condense it
and at least I have got it of my chest now, but I would like to finish by
saying I am determined to see this thing through now to the end, I have tried
to commit suicide twice and now realise that is not the way, it only lets
those responsible off the hook and although my solicitor is competent I feel
ranks are closing in and doors shutting, so I ask if there is any budding
attorney out there who would like to take on the challenge to expose all this
neglect and ignorance to help us all get the recognition that this disease
deserves ( and to make a name for him / her self ) eh!
Julian S Britton
I just wanted to thank you personally for the wonderful site. I was diagnosed
with Hashimoto's hypothyroid over two years ago, but think I had it many
years before it was discovered. I have learned more the last week, since
finding this site, than any docs or anyone else has ever told me. I used to
think that I was alone and no one shared my daily troubles, but have since
learned differently. I think that you have done the same for many people.
Keep up the good work and I will be back to visit frequently. Thank you
again!!
Sincerely,
Tamara
Mary,
I have written you on a few occasions, and have been receiving your
newsletters, and enjoying your site since last year.
I simply wanted to thank you. You have been, without a doubt, the single
biggest encouragement and source of information and links that I have had
since I was first diagnosed with thyroid cancer last May. I'm still
testing, treating and going on visits to "hypo-hell" every 4-6 months. But
you without a doubt have been so wonderful, and I sincerely appreciate all
your work, research, efforts, and compassion.
You are a great encouragement and cyber-friend.
Teresa
Comment on what you've read here, and share
questions, experiences and information with me and other readers and site visitors at the Thyroid Disease Bulletin
Board.
Dear Doctors: And You Thought My Symptoms Weren't My Thyroid (A
Letter)
Deb, a reader writes: Dear Practitioners:
Here here for Debra's taking the initiative to tell these doctors that they did not provide good
service. Doctors work for you. So don't let it seem like the other way around!
I'm Out to Get My Endo...On the Next Jerry Springer
Jill, a reader, writes: "I can't get anyone to diagnose me. Is there a mandatory
waiting period for getting a diagnosis--- kind of like for all those people who want to buy guns?
I guess since the waiting period for guns is shorter the insurance companies can get out of paying
for life long treatment because we get so frustrated and depressed waiting to be diagnosed that
we want to buy a gun and put ourselves out of all of our misery?!?!?! I bet we could even
convince Jerry Springer to let us tape a show for the end of sweeps weeks with patients ready to
slug it out with their "favorite" endocrinologist!!"
I just LOVE Jill's sense of humor. Can't you just picture yourself and your least favorite
doctor, up there on the Jerry Springer show? Sort of a fun fantasy when you're waiting for an
hour and a half sitting in a paper gown!Alternative Treatment for Graves?
A reader writes: "I was diagnosed in May, 1995 with all the typical, yucky
symptoms of Graves Hyperthyroidism. Up until that time, I was very, very healthy. However, I
was perimenopausal, as well as a workaholic who had suffered alot of stress
over the breakup of a significant relationship. When my symptoms and blood
tests indicated hyperthyroidism I decided that I was not willing to give up or
destroy my thyroid gland (RAI). It seemed too severe as a first
intervention. So I began taking Tapazol (25 mg), but because I believe in
alternative medicine and the mind/body connection, I did many other things to
support my healing. For example, I began weekly acupuncture treatments, also
took Chinese herbs, and was placed on a special diet by my acupuncturist.
Esther's story is fairly unique, in that I've met few people who've had success with alternative
treatment for hyperthyroidism, but I believe it can be done. But hyperthyroidism is NOT
something to mess with. You absolutely must do this under the care of a good doctor, who will
conduct frequent blood tests and make sure that you are not doing anything harmful to your
health!
Major Legal Help Needed by Reader in England
I'm reprinting this letter I received because someone may be able to help Julian out. He's had
quite a bit of trouble, and sounds like he could use some advice. If you think you can be of
assistance, please contact Julian directly, at
JBrit69194@aol.com.
...with your permission I would like to tell you my story and ask
maybe for a little help although some of it may seem strange because of the system here in
England but maybe someone out there on the net might read it and help. I'm sorry I know its a bit
long winded but I will understand If you do not publish it and thank you all the same.
Email JBrit69194@aol.com
Some Really Nice Readers Write!
Just a few that I couldn't resist throwing in! :-)Dear Mary,
If you want to drop me a line,
email me at thyroid.guide@about.com!
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