graves disease
jesus zamudio
was diagnosed with an acute case in march of 2002. i took prednisone
for about six months, gain alot of weight, and went thru radiation.
i had a complete thyroidectomy a couple of years ago. i hear its pretty
rare to get graves if you have had a complete removal but i did.
my symptoms now are my eyes are easily tired, my knees ache almost
constantly and my breathing is hard.
my question is ....is there anyone out there like me and if there is
when do you start to feel better?
dm
medgirl
I also have Graves', although I've been lucky and haven't had as severe of a
case as you have. I guess it would be possible to become hyperthyroid even
if you've had your thyroid removed because there can be leftover little bits
of thyroid tissue that are separate from the thyroid gland (they can be left
behind when the thyroid moves during embryologic development). Are you
currently taking any anti-thyroid meds? How long ago was your radiation
treatment? Have your TSH and free T4 started to normalize yet?
m
arlynsg
don't know much about it.
ar
bnd777
RAI and that you are also suffering hypo symptoms
What are your blood results and antibody tests ??????
"jesus zamudio" <hotpe...@webtv.net> wrote in message
news:13119-3D...@storefull-2174.public.lawson.webtv.net...
medgirl
> news:13119-3D...@storefull-2174.public.lawson.webtv.net...
> > for about six months, gain alot of weight, and went thru radiation.
> > i had a complete thyroidectomy a couple of years ago. i hear its pretty
> > rare to get graves if you have had a complete removal but i did.
> > my symptoms now are my eyes are easily tired, my knees ache almost
> > constantly and my breathing is hard.
> > my question is ....is there anyone out there like me and if there is
> > when do you start to feel better?
"bnd777" <bnd...@btopenworld.com> wrote in message news:at8gt3
> Sounds more like you have Thyroid Eye Disease triggered as a result of the
> RAI and that you are also suffering hypo symptoms
> What are your blood results and antibody tests ??????
That could be true, but his symptoms could just as easily be hyper. The
weight gain could have been related to taking the prednisone.
m
Simon Waters
>
> i began symptoms of graves disease about a year ago. double vision. i
> was diagnosed with an acute case in march of 2002. i took prednisone
> for about six months, gain alot of weight, and went thru radiation.
I assume this was radiation treatment to the orbits of the eyes
for thyroid eye disease, as some posters seem to assume you had
RAI ablation from the term radiation treatment?
Neither radiation treatments are terribly promising treatments
from what I've read, but in the circumstances many don't have
much choice.
> i had a complete thyroidectomy a couple of years ago. i hear its pretty
> rare to get graves if you have had a complete removal but i did.
I believe that thyroidectomy for Graves' has a minimal effect on
the risks of developing thyroid eye disease. Antithyroid drug
treatments for Graves' are believed to have a minimal protective
effect, but this may just be a side effect of immune suppression
which isn't necessarily a universal good even in the autoimmune.
The topic has been reasonably well studied althought the focus
was on whether radioactive iodine ablation increases occurance
or severity of thyroid eye disease. The evidence for this is
pretty consistent that a third of those undergoing RAI have
measurable worsening of their eyes, although not all of these
require treatment.
(See review paper EJE 2002 147 1-11)
> my symptoms now are my eyes are easily tired, my knees ache almost
> constantly and my breathing is hard.
You sound hypothyroid, both hypo and hyper thyroidism are known
to aggrevate thyroid eye disease.
But it is hard to tell these things via the Internet. Get to
your doctor and get a full thyroid panel, TSH, fT4, fT3....
The eyes being easily tired is probably from the eye disease,
and I suspect all you can do is be nice to them (I always use
largish fonts for computing even though I don't need to, others
have suggested other simple practical measures to reduce the
strain).
> my question is ....is there anyone out there like me
Fortunately I haven't had eye problems with Graves'. Although
having relapsed after surgery, I know how disappointing it is to
have to face a disease you thought was behind you.
> and if there is
> when do you start to feel better?
Thyroid eye disease usually burns itself out in a few years, but
it is almost universally reported as the worse bit of Graves'
disease, so I don't envy people the wait.
If you are hypothyroid, then you'll need additional thyroid
hormone before you feel better, although from knees and
breathing issues it is hard to tell, see your doctor.
bnd777
Since its a separate Auto immune disease
The writer does not say whether he truly has Graves or simply Graves
Orbithology
Theres a huge difference but even endos fail to explain this to patients
"Simon Waters" <Si...@wretched.demon.co.uk> wrote in message
news:3DF870F2...@wretched.demon.co.uk...
doe
Just anecdotal but a long time friend who has been plagued by health problems
from the day she was born .. heart problems from birth .. Graves later and as I
understand has been pretty much incapacitated for the last year .. just phoned
and her aunt and her cousin were just found to be iron overloaded..
hemochromatosis .. therefore she has to be checked .
She was adopted and so she really is only NOW finding out more about her family
tree. Her cousin is in a wheelchair..
Been telling her for quite some time but .. scepticism .. so .. just had to
mention since this thread is about Graves.Graves seems to BE connected to iron
overload as per the SHOWN treatment with antioxidants/ antirust nutrition..
We'll see after she gets her blood tests back ..
Who loves ya.
Tom
Jesus was a vegetarian!
http://jesuswasavegetarian.7h.com
Jesus was a vegetarian! http://www.nucleus.com/watchman
Moses was a mystic! http://www.nucleus.com/watchman/light.html
Simon Waters
>
> The writer does not say whether he truly has Graves or simply Graves
> Orbithology
I'm guessing since he had a thyroidectomy, and didn't mention
any other reason he might have had a thyroidectomy.
Amazing the number of people Tom meets who have hemochromatosis,
anyone would think it wasn't a rare condition ;-)
doe
>From: Simon Waters Si...@wretched.demon.co.uk
>Date: 12/12/2002 11:28 PM Mountain Standard Time
>Message-id: <3DF97E0A...@wretched.demon.co.uk>
http://content.health.msn.com/encyclopedia/article/4115.21173
Logically .. since iron HAS been shown to rise to higher and higher levels ..
it simply CANNOT be 'as rare' .. as you seem to think ..
But that is just logic ..
Mag
As has been brought up, the eye and thyroid part of Graves disease is
supposedly 2 separate parts of the same disease, and the eye thing can
occur alone. As far as I am concerned, for me it is essentially the
same, since I was blessed with both parts, not always flaring up at
the same time, but definitely related.
I chose Antithyroid drugs in hopes of remission, and because RAI had
been implicated in worsening TED and mine was already very severe. I
would have tried a thyroidectomy if the ATD's weren't working, because
there is SOME evidence, as you say, that removing the thyroid may
reduce the antibody load, and since there is some cross reactivity
with the orbital tissues and the antithyroid antibodies, in theory
that might help. ATD's are supposed to also have a protective
effect. For me, nothing seemed to stop the progression, but now,
almost 8 years out, I think things are quieter than early on, so hang
in there. I also did pred, and yes, it is tough, but if you need to
take it again, let me know and I will tell you about dietary changes
that kept me from gaining an ounce, and a great book I found after the
fact that essentaily explains what to do. I also had orbital
radiation, and it really didn't do anything but dry my eyes and make
me VERY fatigued. How long ago did you have the radiation? My ophthy
told me fatigue from that peaks at 8 weeks and can last 6 months, so
you may still be experiencing that. If not, the leg pain and
breathing sound like hypo, I assume you levels are being checked
regularly. What are you latest results? If your TSH is not pretty
supressed, I would ask about increasing your meds.
Best of luck, it does get better with the eyes.
Mag