[Anonymous March 2, 1997 at 3:49 pm Post count: 93172]

#1164257

Sharon,

I, too, used to walk 2 – 3 miles each morning with some friends. While I was sick with the hyperactive thyroid, that was impossible. And being hyperthyroid did a number on the muscles of my legs. But two months after RAI I began walking again. I cannot go as long, or as fast, but the muscles are definitely improving as I slowly build back up. I am also considering getting into a health club run by a local hospital, and having an exercise physiologist on staff work me up a series of exercises to get back into shape. Being hyperthyroid for any length of time can be pretty debilitating. But the treatments available regarding this part of the Graves problem, do work to give you back your health in most cases.

What you find in the posters to this board, and other thyroid boards, are usually folks who are new to the disease, and still sick, or the much smaller percentage of folks for whom the treatments haven’t worked well. Those who get treatment, get well, then seem to get on with their lives and not tune into the boards as frequently, if at all. So it kind of skews the message out of proportion. Take heart, please. I know how scarey it is, being relatively new to this whole thing myself. But my mom was treated twenty years ago for Graves, and I have her example of how it doesn’t have to be the defining factor in your life, once you get treatment.

There’s a lot of good support here on this board, too — caring people sharing experience, compassion and some insights. It will help.

Take care,

Bobbi

[Anonymous March 2, 1997 at 5:39 pm Post count: 93172]

#1164258

Hi Sharon! I can’t give you a guarantee that everything will be okay anytime soon, but I am one of the happy, feeling-good people on this BB. I check in with this support group because I have a continued interest in Graves’ Disease, as it is part of my life and everyday routine (taking a thyroid replacement drug and going to the doctor for periodic blood checks). I had RAI seven years ago, hit the hypo stage, and have been able to control my levels since then. I am also one of the “lucky” 10% of GD patients that has eye problems. I had a number of surgeries, which helped return my eyes to near normal. If you’ve had prisms, then you’ve had some eye involvement already. This may or may not get worse – it may get better. Although GD patients have similar symptoms, each case is different. If you haven’t already, I would strongly recommend finding an ophthalmologist that specializes in GD. S/he would know what was best for your condition, and can take baseline measurements and info that will help you track your progress through the years and plan treatment.

Life with GD can be very happy and fulfilling. I work full-time, exercise regularly, and try to eat a low-fat diet. Meeting new friends on this BB has helped me become more informed about my health, and has given me a place to share ideas, stories, frustrations, and even some laughs. There are many people here who share your symptoms and fears. Seek these people out, visit the many GD links, and join the National Graves’ Disease Foundation. Become an informed patient.

Wishing you health and happiness, Debby

[Anonymous March 2, 1997 at 7:40 pm Post count: 93172]

#1056745

Dave, I too am interested in hearing about alternative therapies
for GD. Was diagnosed last week, after a scary time with shakes and
fast heart rate (125 resting!)

After reading through the messages here, I am more scared than I was before.
The discussions of eye problems terrify me. I have been wearing prisms
in my glasses for years, and wonder if my vision will get worse. Have
pains in my chest, and still feel shaky even on Inderal.

I saw a ND on Friday, he gave me somethiong called Thyrotoxigen. I just
don’t like the idea of eating radioactive iodine.

Will be seeing the endocoinologist tomorrow. I would like to hear from
anyone who can reassure me that everything will bo OK. Thank you, thank you, thank you!

I know that the major part of our life’s experience is determined by
the thoughts we routinely hold. I am fighting panic here, and know that I must keep
a positive attitude to stay calm.

I used to walk two miles every day and wonder if I’ll be able to do it again. Some referneces in past posts indicated no.

I’d like to hear from all the happy, feeling-good folks out there.

Love and light to all, PodyPo

[Anonymous March 2, 1997 at 8:30 pm Post count: 93172]

#1164259

Thank you, thank you, Bobbi, for you wisdom and caring. Your point about the status of the people
participating here makes sense. I have already heard from a number of
you, and I appreciate all the positive support. I know the truth is there is good in everything. EVERYTHING!!
ALWAYS!! I’ll be walking my 2 miles again soon, I know! Thank you again.

Love and light and blessings to you and to all who read this, Sharon

[Anonymous March 5, 1997 at 11:53 am Post count: 93172]

#1164260

Hello! My doctor just told me that my TSH test came back a bit high
and that I need to go see an endocrinologist (sp?). I made an appointment but
it isn’t for a month and a half! Should I be seeing someone sooner than
this?

I don’t know if I have Graves but it looks like I do have hyperthyroidism.
I feel jumpy all of the time and my heart is always pounding! At the
same time I feel so tired and I feel like I’m going to pass out if I
get too hot! I also get really nauseaus. I feel so uncomfortable and
unhappy but my doctors don’tseem to think I have anything to worry about.

How fast can hyperthyroidism progress? Is it very dangerous?
How important is it that I see someone soon?
Thanks for any help — I’m so glad I found this BB!

–Kiersten

[Anonymous May 18, 1997 at 9:53 pm Post count: 93172]

#1164261

II am a cancer survivor and have been disease free for five years now
I have been recently diagnosed with Graves disease. I wonder if there
is any connection. I am on hormone therapy and now since being diagnosed
with Graves am on an antithyroid and beta blocker. It is helping with
the tremors but not my nerves. Any suggestions?

[Anonymous May 19, 1997 at 12:03 am Post count: 93172]

#1164262

Hi Cindy!

Glad to hear that you came through the cancer. Sorry to hear that you have Grave’s. The beta blockers will probably kick in and help your nervousness. I think that we all are finding out here that each of us is a unique case. Grave’s Disease seems to effect each of us a little bit differently. There are others who are having problems with nervousness. I just wanted to say hello to you. I was diagnosed with Grave’s in 94, took antithyroid, got off that, then had thyroid radiation pill, went hypothyroid and am now taking synthroid supplement of .0125 mg. I have had eye problems which began in 4/96 with swelling muscles. But, after radiation, my eyes are almost back to normal (still have some double vision). Talk to your doctor about what is best for you. I couldn’t stay on the antithyroid medication because I had the complications, so I had the radiation. Your doctor may suggest a different approach for you. Others here on this board have gone through various other approaches as well. I hope you feel better soon. The antithyroid medicine took a little bit of time to kick in for me when I was taking it. If you don’t feel “right,” call your doctor and see what he/she suggests. Talk to you again later.
In my thoughts and prayers,
Debbie

[Anonymous July 8, 1997 at 7:59 pm Post count: 93172]

#1164263

Can anyone please tell me when you were told by the
doctor that your were hypothyroid, did anyone else
have extreme nervousness and could not sit still?
Just want to see if anyone else experiences these
symptoms. It doesn’t seem like I should be feeling
hyper when the doctor tells me I’m hypo.

I sure hope someone can explain this because it’s
confusing to me.

Thanks!

Don

[Anonymous July 9, 1997 at 3:04 am Post count: 93172]

#1164264

Hey Don

as strange as it seems you can get best of both worlds
even when the numbers say roll the dice, the graves game
is at its best i to get these feeling’s they say it cant
be but what does the endo really now.

good luck-steve

[Anonymous July 9, 1997 at 3:05 am Post count: 93172]

#1164265

Hey Don

as strange as it seems you can get best of both worlds
even when the numbers say roll the dice, the graves game
is at its best i to get these feeling’s they say it cant
be but what does the endo really know.

good luck-steve

[Anonymous July 9, 1997 at 10:11 am Post count: 93172]

#1164266

Don, I posted on this topic recently. I recently went hypo according
to the blood work and for the most part had many hypo symptoms. But,
my heart rate is still extremely high. So I’m being kept on a
calcium channel blocker (can’t take beta blocker because of asthma).
This is confusing to me also; but many folks responded to my post and
apparently it is common to have an overlap of symptoms. I recently
visited my family doctor and he told me there can be an overlap of
symptoms; whereas the endo kept telling me that this problem was
strictly my heart and not being caused by my thyroid. I tend to
think it is all thyroid related as I never had a heart problem prior
to Graves.

[Anonymous October 22, 1997 at 2:27 am Post count: 93172]

#1164267

Hi all –

I was recently diagnosed with hyperthyroid and tomorrow (10/22) I go for
my RAI uptake. The endocrinologist (the one I could get into pronto, e.g.
the one three minutes out of residency) described either pills for a year
or the RAI treatment. Recommended RAI treatment over pills, mainly because
it was a one shot deal and I am considering getting pregnant in the
next year or two. I agreed, and the treatment was supposed to occur
right after the uptake tomorrow if it showed that I had Grave’s Disease.

I called today and cancelled the treatment part of it because I don’t
feel that I had a comprehensive enough session with the endocrinologist.
I will do the uptake tomorrow however.

My main reason for not wanting the treatment is vanity and reality. I have
had the (what I thought) metabolism of a slug my whole life and indeed,
am probably the only person with a hyperactive thyroid who isn’t losing
weight (and actually I have gained weight in the last month). So, I
the DREAD possibly becoming hypothyroid. I have combatted
fatigue and weight for too long for it to now become a medical condition.

Needless to say I have appts. with my family doc and my endo-
crinologist next week, to discuss treatment further.

I guess my questions are along the lines of 1) how hypo does one get
after RAI (I don’t have the weight loss symptoms, nor the amenhorria,
nor the diarrhea, just heart pounding and hyper thyroid blood work,
tremulousness and weakness. I’m on a beta blocker now). 2) Has anyone
had the pills (p something) for a year and then gone off them? 3) Has
anyone gotten pregnant with either the pills, or once hypo, gotten preg-
nant?

Re: well water. My mother has had well water continuously since she was 48.
Every weekend for about 10 years prior. She got Grave’s Disease when she
was about 55. (Did the pills for one year, no remission.) I spent 3 weeks
at her house this summer, and really haven’t had too much well water other
than that my adult life. Every other weekend for several years in
grammar school and for several weeks a year for college and high school.

Re this BB – my inauguration to chat session! Thank you!!

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