Grave's ophthalmopathy attacks the eyes muscles directly. The eye
muscle disease is not caused by high *or* low thyroid levels; it is
caused by the same antibodies that attach the thyroid.
I was diagnosed, a few years ago, with both Hashimoto's hypothyroidism
*and* Grave' opthalmopathy (more correctly known as Thyroid Eye
Disease). I have never been hypERthyroid, only hypOthyroid, but there
is no question of my eye disease. There are no tests for the majority
of thyroid antibodies, but I was negative for those few tests that do
exist.
Now I am suffering badly from some sort of myopathy. My arms are weak,
and my legs are extremely weak. I cannot walk more than ten feet and
must use a wheelchair. All of my blood tests are normal, including all
thyroid levels, and my symptoms also indicate that my thyroid
replacement is perfect. Tests for all manner of other diseases are
normal, too: I don't have MS, a brain tumor, Addison's (not even
borderline), myasthenia gravis, myositis, anemia, B12 deficiency, etc.
No numbness, tingling, or any other symptom, either. My reflexes are
slightly hypertonic. My sed rate, ANA, and C-reactive protein are all
low. The only truly abnormal results were EMGs indicating "subclinical
myopathy", not sufficient, the neurologists told me, to explain my
degree of disability.
Is it possible that my arm and leg muscles are being attacked now in
exactly the same way as my eye muscles and thyroid are? If so, what
can be done? Normal thyroid levels are not helping. I take Celebrex
daily as treatment for my thyroid eye disease.
Thanks for any help you can offer. My physicians are all baffled,
which is quite an uncomfortable situation for me.
Paula B.
Cavaliers - 16 Jan 2004 01:55 GMT
Hi Paula,
I am very sorry to hear of your current situation - it's difficult dealing
with eye issues and now this.
You have seen a neurologist?
Have you had a muscle tissue biopsy?
It appears -- in active GED inflammatory -- inflammatory cytokines are
detected in higher amounts in the soft eye tissue. Maybe this would be
evident in other muscle tissue if it is related to GED...going out on a limb
here ;o(
Re-test ANA - lupus??? Repeat SED rate???
See here for some suggestions that might not have been considered:
http://www.neurologychannel.com/myopathies/diagnosis.shtml
I have quite a lot of research for Graves' Eye Disease (GED), but haven't
come across anything yes that suggests other body muscles are affected the
same way as the eye muscles and soft tissue.
Your Graves' eye disease specialist has no ideas?
I hope very much that you improve soon, Paula.
Kindest regards,
Diana
> Grave's ophthalmopathy attacks the eyes muscles directly. The eye
> muscle disease is not caused by high *or* low thyroid levels; it is
[quoted text clipped - 29 lines]
>
> Paula B.
Cavaliers - 16 Jan 2004 01:58 GMT
from Mary Shomon:
http://www.google.ca/search?q=cache:YVwYolX_RQ4J:www.thyroid-info.com/articles/m
uscle-joint-pain.htm+muscles+and+thyroid+disease&hl=en&ie=UTF-8
> Is it possible that my arm and leg muscles are being attacked now in
> exactly the same way as my eye muscles and thyroid are? If so, what
[quoted text clipped - 5 lines]
>
> Paula B.
John R - 16 Jan 2004 02:04 GMT
Paula, I would doubt very seriously if your arm and leg muscles are
being attacked by thyroid antibodies. This is fairly specific to a
particular organ, namely the thyroid, with the exception being thyroid
related eye disease.
Perhaps you need to look at other issues beyond the endocrine system as
well. If you believe it to be endocrine related there are several sites to
go to to see if anything rings a bell, as far as symptoms, because that is
what the doctors have to go, same as you, beyond the tests you've had run.
Now, if it were me, I would look at the website www.thyroidmanager.org
and see if any of the Graves symptoms match up. The eye and muscle problems
are ringing a bell, but I can't remember what it is...but I remember a
runner having some issues with Graves that sound similar. Look that
direction and see what you can find. My time online is somewhat limited at
the moment or I would do a quick search myself.
Good luck.
John R.
> Grave's ophthalmopathy attacks the eyes muscles directly. The eye
> muscle disease is not caused by high *or* low thyroid levels; it is
[quoted text clipped - 29 lines]
>
> Paula B.
Mag - 16 Jan 2004 14:15 GMT
Paula,
I am so sorry to hear this. I think of you often because it was your
experience with Celebrex that made me brave enough to risk my previous
problems with other NSAIDs. It has changed my health for the better,
both my eye pain and joint and muscle issues. I will always be
grateful to you for this.
I won't ask any obvious questions because I know by now you, of all
people, have investigated all obvious causes.
My only thought based on what you write is that it reminds me of a
neighbot who rather suddenly developed severe weakness that no tests
showed a cause for. She was eventually diagnosed by exclusion with
migraine related brain swelling (not marked on CatScan) and it slowly
improved over a period of months to normal. I hope something similar
happens to you.
Meanwhile, you will be in my thoughts and prayers.
Mag
> Grave's ophthalmopathy attacks the eyes muscles directly. The eye
> muscle disease is not caused by high *or* low thyroid levels; it is
[quoted text clipped - 29 lines]
>
> Paula B.
Cavaliers - 16 Jan 2004 18:02 GMT
Hi Paula,
an afterthough -- the NGDF might have information - if you do go there
remember not to mention the names of drugs though ;o(
There are lots of people with GED so there might be an incident similar to
your current situation.
Kindest regards,
Diana
> Is it possible that my arm and leg muscles are being attacked now in
> exactly the same way as my eye muscles and thyroid are? If so, what
[quoted text clipped - 5 lines]
>
> Paula B.