I've been having some serious thyroid problems, and I'd be very
appreciative if any medical professionals monitoring this list could
offer some advice.
Background:
35yr old male, very fit, run 40mi/wk, lift weights, 10% bodyfat, very
healthy diet.
After not having visited a doctor for many years, I decided at age 35 I
should start going for a regular checkup. I asked for a full blood
workup and my first doctor did nothing but a cholesterol test. He
immediately wanted me to go on Crestor, without even considering why my
cholesterol might be elevated. Remembering that a long time ago I had
been told a thyroid test was borderline, I asked my doctor about doing
one. He didn't like the idea and I pretty much had to force him to have
the test done. All he had done was tsh. My tsh came back with a value
of 10. He then presribed 50mcg of Synthroid. That pretty much did it
for me. During all this I had difficulty even talking to my doctor, and
typically just got a call from a secretary to start some medication. I
decided to start seeing an endocrinologist. I live in a small town and
there are only two endo's here. I visited the first and she seemed to
think my case was textbook. She ordered another blood test. My TSH was
3 but my antibody count was very high (that's all the info I got at the
time). She felt that I had a goiter and said I should probably have an
ultrasound, and said to come back in 6 months to test my thyroid hormone
levels. She said that the antibodies indicated that I had hashimoto's.
Fortunately she left for another job a few weeks later. I ended up
going to the only endo left in my town. He immediately wanted another
blood test, but I had to strongly encourage the ultrasound that the
previous endo suggested. The ultrasound revealed no problems. The
blood test showed my tsh was now almost undetectable (.01). My dose was
cut to 25mcgs. At this point I had lost almost 20 pounds and gone from
13% bodyfat to 10%. I had lost a lot of strength, developed a complete
intolerance to heat, and had other problems associated with
hyperthyroidism. After another 6 weeks I was tested again and my tsh
was still undetectable. I was told by a secretary that I should
increase my Synthroid dose to 100mcg's. Yes that's right...they totally
screwed up. Of course I knew that right away and told her that couldn't
be right. She had to call the doctor who then told her I was supposed
to stop taking Synthroid altogether. After 8 weeks off Synthroid I had
yet another blood test. My TSH was still undetectable. The secretary
simply called and told me I needed to start taking methimazole and have
a radioactive iodine uptake test. I told her I wanted to talk to the
endocrinologist about my test results before doing any of this, and she
acted like that was impossible, telling me I "must" start taking the
medication now. It was all I could do not to just hang up on her, but I
ended up getting an appointment in the next couple weeks.
This all happened during in the months between July and Dec. of this
year. None of the doctors have appeared to have any concern for how all
of this is affecting me physically or mentally. Anyone who has had
thyroid disorders knows what it does to you, let alone when your levels
are fluctuating so drastically, over such a short period of time. Every
doctor acts like any question I ask is absurd, even though all their
treatments and diagnoses have seemed pointless so far. They all just
seem to want to put me on medication and see what happens. My question
is, does this seem like an abnormal case? Should I be seeking another
endocrinologist. I have the option of going to a endo specializing in
thryoid disease, in a larger city only 50 miles away. That is what I am
seriously considering right now. Is it odd in such a short time to be
diagnosed with Hashimoto's and then hyperthyroidism? It seems more
likely to me that one of them, or both diagnoses' are incorrect.
I've also kept a log of how I have felt and what symptoms I have had,
because it does get harder to know what feels normal as time goes on,
having my hormone levels changed so drastically. Here are some notes
that may help someone evaluate my condition.
Symptoms before starting Synthroid.
fatigue (extreme, never felt rested, could sleep any time of day and
felt almost unable to function after mid-day)
dry skin, thick skin
high cholesterol (despite diet and exercise)
extreme sensitivity to cold
trouble losing weight
muscle cramps, especially associated with exercise, slow recovery from
exercise
irritability
hair loss
allergies much more pronounced (compared to when on Synthroid)
frequent sore throats
goiter
After starting 50mcg's Synthroid
felt better within weeks
slept better, felt awake after sleeping for first time
didn't get excessively tired later in the day
much clearer thinking, not in a fog...this was shocking to me and so
noticeably different
skin cleared up, skin got thinner
lost weight in difficult areas such as abdomen (keep in mind, I went
from 13 to 10% bodyfat in this time, so I wasn't overweight to begin with)
allergy symptoms were almost non-existent
no muscle cramps, quick recovery from exercise
cold sensitivity completely disappeared
aerobic capacity seemed to improve significantly (noticed this running)
no sore throats
About the time my dose was dropped to 25mcg's
Noticed frequent headaches. I've never had headaches.
Very jittery, fidgety, couldn't sit still
heart pounding
complete intolerance to heat, difficulty maintaining previous levels of
exercise
tremendous appetite
weight loss, from 180-158.lbs
very significant loss in strength and muscle mass
After going completely off synthroid.
I felt the return of the "brain fog".
Feel much more fatigued, same tired feeling all the time, and getting
much worse later in the day
allergy symptoms have returned
still can't seem to gain back weight that I lost
seem to be less tolerant of hard exercise
The odd thing is that now I seem to have some symptoms I had before
going on Synthroid, and some that I had when the dose was too high. I
don't feel "right" but I don't feel exactly the same as I did when I was
confirmed hypo or hyper thyroid, but somewhere in between. My TSH is
still almost undetectable at this point.
Hopefully if you've read all that, you have some advice to offer. First
off, is the care I have described so far, as bad as it seems to me? Am
I unwarranted in seeking another endocrinologist? Is it odd, as it
seems to me, that I was diagnosed with hyperthyroidism, very shortly
after I was diagnosed with Hashimoto's and put on 50mcg's of synthroid?
Talking to "good" endo's, I was told that they almost always start
with the lowest dose first, and it seems odd that I was even started at
50mcg's. Are there other diseases that I might ask about? Could Graves
disease have caused a misdiagnosis the first time, or Hashimoto's a
misdiagnosis the second time? Since my antibodies are confirmed very
elevated (I think I remember hearing the number 10000, but I'm not at
all sure about that), could that be throwing off the recent tests? Is
it possible that the Sythroid dose was so exessive, that my TSH would
still be almost undetectable, after being off Synthroid for 8 weeks?
These are some of the questions I'm going to ask during my next
appointment, but anyone elses input would be welcome.
MilkyWhy - 29 Dec 2004 02:11 GMT
Interesting narrative. I had a relative on either Synthroid or Levoxil, can't
remember which. But as I remember, one was good and the other had kooky
side-effects. Another thing is that when you (are told by your idiot bastard
doctors to) increase your dosage,
increase it SLOWLY. Don't double it or make a big jump in dosage on thyroid
med.
Btw, I'm just an interested bystander. Let us know what and how this all works
for you. I wonder what your bloodtype is? I'm guessing type O. God Bless!
MRL@PSFC.MIT.EDU - 29 Dec 2004 20:11 GMT
Hi - There is a thyroid specific news group called alt.support.thyroid, where
perhaps you should post your message. There is also a good mailing list:
THYROID Is a discussion list for thyroid conditions and diseases. To
subscribe, send a message to lists...@maelstrom.stjohns.edu. In the body of
the message type "subscribe thyroid Firstname Lastname."
You can also read it via a web page:
http://maelstrom.stjohns.edu/archives/thyroid.html
J - 29 Dec 2004 21:26 GMT
> After starting 50mcg's Synthroid
>
[quoted text clipped - 31 lines]
> still can't seem to gain back weight that I lost
> seem to be less tolerant of hard exercise
I have hashimoto's.
Before I was diagnosed I must have been "hypo" because I gained 80 pounds.
Then all of a sudden weight kept dropping and I was very ill, including
allergies and everything you desribe immediately above.. My thyroid enlarged.
I'd been coughing and the doctor kept telling me it was allergies instead of
noticing that my thyroid was enlarged. So he kept telling me take cough or
allergy medicines. Many of them have warnings about thryoid on them. (are you
taking some?) I've always had to be careful which meds I am taking, they can
cause jitters.
I finally went to a different doctor who could see and feel the problem, got
me to an endo and got me properly diagnosed/treated.
It took about a year to stabilize and feel better and as I recall, I was
started at 1.25 medication.
My goitre disappeared after about 18 months. I'm not sure why I was coughing
except at the same time, they found that I reacted to a TB test.
Looks to me that they started you too strong, too fast, and they're trying to
mitigate the potential damage with the methimazole (which is usually used for
hyperthroidism.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682464.html
My bloodwork was monitored (the first year) every three months and
titrations/dose changes very slowly.
25 years later, I get monitored every 6 months or once a year. After 3 years,
I'm no longer seeing an endo. Primary care physicians should be able to pick
up from there, unless there's drastic changes that they don't what to do
about. I've seen an endo twice since for questions. Once he made a slight
adjustment to the med.
Take it easy (for now) with the "hard exercise"..getting too hyperthyroid is
dangerous for your heart. They increased my Dad's to address fatigue and he
had his first and only heart attack.
Hashi's is an autoimmune form of thyroid. (does autoimmune run in your
family?) Lupus "runs" in our family. There's other types of autoimune
diseases too.
My doctor's would be alarmed if my TSH ever got close to the low numbers that
you've described here.
http://www.nlm.nih.gov/medlineplus/ency/article/003684.htm (our "normal"
ranges here are 0.4 - 5.0)
Medline's changed theirs again and it's a bit lower range (see the web page).
You cannot get there that fast. It has to be slowly..
And it should always be done by the same lab..
Did anyone palpate your thyroid to see if there's a nodule? I had one and a
needle biopsy. It was benign and I've been fine ever since, unless I have to
battle with doctors to not let my TSH go too high.
I use this for my information http://www.thyroid.ca/English/Guides.html
Hashi's is under "Thyroiditis".
Get copies of your various labwork and hopefully you'll find someone competent
to sort this mess out.
I'm not a doctor, just a patient.
I wish you well.
J