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  • Anonymous
    Post count: 93172

    Hiya Donna!! It gets better!! I was on propranolol for about 2 months
    I’m off them now!! I’ve been taking PTU for 6 weeks and it’s working
    fine! I havn’t had any reactions to it and my endo is pleased with
    the results so far! I chose this route because as long as there is a
    shot at remission I want to take it! If I didn’t take it then I would
    probably wonder the rest of my life! My endo is hopeful and so am I
    (most of the time) Other times I’m miserable and throwing a fit! But
    that doesn’t happen as much as it used to!!
    Good luck & keep in touch

    Lisa

    Anonymous
    Post count: 93172

    Hello. I was diagnosed yesterday with Graves Disease after the
    results of the scan and uptake came in. I’m scared and really glad
    to find the BB. I’ve just spent two hours reading all
    the messages – they frighten me and give me hope at the same time.

    I’ve only felt sick for the last few weeks and my doctors got right on
    it. I’m blessed. Usual symptoms: racing heart, tremors so bad I
    can’t eat sometimes, etc. I’m taking 200mg beta blocker and 10 Advil
    a day. The bb has slowed down the heart and helped the tremors and the
    advil helps with the pain – especially in my arms, neck and upper back.
    I wish I could lose some weight!

    I agree with you all that stress is at least one cause of this.
    It’s been a year I don’t ever want to do over again.

    Right now I’m trying to decide whether to do the PTU or the I131. I
    could use some voices of experience. -Donna

    Anonymous
    Post count: 93172

    Thanks. I’ve been thinking along the same lines. I figure if I can
    get even a few years without the radiation that has to be good. Keep
    me posted on how you are doing. – Donna

    Anonymous
    Post count: 93172

    Here I sit at my desk, scared, I’m an Admin.assistant for a large Corp. I had an ultrasound done yesterday morning. The Dr. who performed the ultrasound on my thyriod said, almost casually, “you clearly have Graves Disease”. I went home. This morning, I logged onto the Web as soon as I got to work (*after downing a huge egg sandwich-yes I eat like a lumberjack). I needed to find out everything I could about what was going on in my body. I had to offer my parents some type of explaination . They have seen me lose 18 lbs quickly, yet continue to consume large meals, one after another. They are no taking me seriously. Its such a hoot to watch me eat & excitedly speak at a mile a minute. I’ve always been active/happy and energetic but this is not normal, now I have tremors, ichy skin, insomnia, my hairbrush is full, and so on. My Dr. found the Thyroid level at 458 on my blood test. So that why she ordered the ultrasound. I just turned 33- not married, no kids, no boyfriends, no allergies. I am scared. I want to run to the ladies room and cry. Its not funny anymore. I wish my Dr.would call back.NOW. If I call her office again- they will hate me even more. I’m sorry if I’m venting on you. I’ve read a few of the other postings and what I have read has really scared me. Is this my future? I am grateful to read your letters. But this is scary and I feel alone…. Please talk to me. I’m taking a deep breath and telling myself its all going to be ok.

    Anonymous
    Post count: 93172

    Patty,
    I know what you’re going through. I was diagnosed with Graves in June 1997 and shortly after had RAI. I am still trying to get my medication adjusted. The physical problems are bad enough but the emotional ones were the hardest for me. I would almost bounce off the walls I would get so excited but all of a sudden I would be so tired I could hardly get up out of my chair. My Dr. said it was because my body just couldn’t keep up with that fast of pace. I still get stressed out over small things and I don’t know if I will ever be “normal”. It is scary and having someone to talk to who is or has experienced the same thing helps. Email me if you would like.
    Sonya

    Anonymous
    Post count: 93172

    Thank you so much Sonya. I sent you an email just a few minutes ago. But I forgot to ask what is RAI?

    Anonymous
    Post count: 93172

    Patty-I am no expert on Graves I found out 2 months ago that I
    have it. I to went straight to the internet and libary to find
    out everything I could. I just came across this support group
    a few days ago It really helps me knowing what is happening to
    me is normal. (I thought I was going to drive my dr. crazy with
    all the phone calls every time something different happend I
    would call and ask if it was normal. It really helped that my
    dr. is a great listener.) this BB has been the best thing that
    I have found that deals with Graves.
    Thanks To All The People Who Share Their Stories.

    Anonymous
    Post count: 93172

    HI PATTY,
    I’M ALSO NOT MARRIED, NO GIRLFRIEND, NO KIDS AND BASICALLY FIGHTING THIS GRAVES BATTLE ON MY OWN. I REMEMBER HOW SCARY IT WAS WHEN I WAS FIRST DIAGNOSED BACK IN MAY. WITH ALL THE HAIR FALLING OUT, THE SHAKES, AND THE BULGING EYEBALLS YOU COULD SAY THAT I WAS ALSO CONCERNED ABOUT HOW ENTICING I WOULD APPEAR TO THE OPPOSITE SEX. AND I FIGURED THAT AFTER THE RADIOACTIVE IODINE TREATMENT THAT I WOULD BE GETTING BACK TO NORMAL PRETTY QUICKLY. WHAT I WAS NOT PREPARED FOR WAS GOING FROM HYPER TO HYPOTHYROID. WHOLE NEW BALLGAME. INSTEAD OF RUNNING AROUND A HUNDRED MILES AN HOUR I CAME TO A SCREECHING HALT. SURE, THE TREMORS STOPPED BUT I LOST ALL ENERGY. I BECAME RECLUSIVE. DEPRESSED. I GAINED 50 POUNDS IN 3 MONTHS (NOT FROM EATING MORE). IT’S BEEN SEVEN MONTHS OF FOLLOW-UP BLOOD TESTS AND ADJUSTMENTS TO THE SYNTHROID MEDICATION AND I’M STILL NOT BACK TO NORMAL YET. SO MUCH FOR THE QUICK CURE I ENVISIONED.
    I’M NOT TELLING YOU THIS TO SCARE YOU ANY MORE THAN YOU ALREADY ARE. KEEP HANGING OUT ON THIS WEB PAGE. I ONLY DISCOVERED IT A COUPLE OF WEEKS AGO. I WISH I HAD FOUND IT BACK IN MAY. HEARING THE STORIES FROM OTHERS WITH THE SAME TYPES OF PROBLEMS (AND WORSE) GO A LONG WAY TOWARDS
    MAKING THE BATTLE A LITTLE BIT EASIER. IF I HAD KNOWN BACK THEN THAT I WOULD BE IN THIS FOR THE LONG HAUL THEN MAYBE I WOULDN’T HAVE HAD SO MANY DISAPPOINTMENTS AT AN APPARENT LACK OF IMPROVEMENT OVER THE SHORT HAUL. LISTEN TO THEIR STORIES AND ASK QUESTIONS. THERE ARE SUCCESS STORIES TO BE HEARD. SOON YOU’LL BE ABLE TO LAUGH A BIT ABOUT IT. I KEEP TELLING MYSELF THERE’S A LIGHT AT THE END OF THE TUNNELL….LORD, I HOPE IT AIN’T NO TRAIN…..

    Anonymous
    Post count: 93172

    I work in a library, and I found a lot of articles that explained the diagnostic process and therapeutic options to me when I first developed this disease. If you would like me to e-mail you some basic review articles, I would be glad to. Your doctor is the best source of information, of course, but it helps to be able to ask informed questions. Welcome to the board!

    Anonymous
    Post count: 93172

    There IS light at the end of the tunnel. Although it may be a longer tunnel than you expected, there is hope. Hang on through the ups and downs and keep talking it out. The board is here to listen.

    I started treatment 2 years ago. It HAS been rough, but I’m doing well. My son ( a recovering addict) taught me how to take it just “one day at a time”. I wish I had learned it sooner.

    Best wishes to all the warriors,

    Valerie L

    Anonymous
    Post count: 93172

    John-
    Thank you so much for the email. Today I have accepted the fact that I have Graves Disease. My Dr. has tried to calm me down… HA ! So I will be getting a prescipt. for a beta-blocker to stop the tremors. I was shaking like a leaf yesterday. Do they get worse when you are upset? For me it sure does. I have been thinking about the unwanted weight gain. I already know that I will be depressed. I have been so elated when I had to buy new smaller size jeans ! Size 6 ! But I know that the 18 lbs I lost was not from eating veggies & daily workouts. My shakes are not from too much coffee. And my hair loss is not from using a cheap conditioner. I’ll keep in touch & you do the same. Thank you again-
    hugs-
    pattie

    Anonymous
    Post count: 93172

    Patty – keep taking that deep breath, and try to reassure yourself that everything will be okay, because it will. Your reaction is totally understandable and I can relate…been there, done that. I was diagnosed in July last year and panicked at the thought of having to take pills for the rest of my life. However, there is a light at the end of the tunnel, and I can testify to the fact that things do get better. I also found that I am not alone with this disease…there are quite a few others like me, co-workers, friends, etc. In a way, I was relieved to discover that my shakes were not all due to emotional problems. For months, I thought I was losing it mentally from the panic attacks, and constant shaking I experienced….I couldn’t get the cream & sugar in my coffee without spilling it all over the place!

    But, anyways, to the point….I had my RAI treatment in August while also going on propolonal/inderal, which helped the shakes and heart. Then, in October, I went Hypo and started taking the Synthroid. Since With being Hypo, I started with horrible muscle cramps. But, since then, I believe my endo has put me on the ight level of meds, and I can’t tell you how much better I feel all the way around…physically & mentally. One piece of good advice I’ll share from a friend who had thyroid cancer and came to my support at my diagnosis….have an endocrinologist treat you..its their specialty. Don’t rely on a General Practitioner to get you balanced. He was right.

    So, just try your best to be patient with yourself, and insistent with your docs to get all of the information you need to take care of yourself. Good luck.

    Anonymous
    Post count: 93172

    Jo-Jo
    You are so right. I am glad that I found this BB. Everyone who replied to my note has been supportive and kind. I’m a little embarassed today because I didn’t want to sound so pathetic & scared. I want to keep telling myself that it could be worse !! Thank GOD its not Cancer.
    Keep in touch- thank you again for the note.
    Pattie

    Anonymous
    Post count: 93172

    Thank you for the reply ! After an emotional day at the office yesterday, while driving home I heard a song by Patty Smythe on the radio – she sings “YES I am the worrior and victory is MINE ”
    How coincidental I heard it yesterday…
    Take care & please keep in touch…
    Friend
    pb

    Anonymous
    Post count: 93172

    You made me laugh ! Thank you for your honesty. I try to forget about the anxiety attacks and I try to ignore the way my hands spill sugar all over the counter before it reaches my coffee. But its all true and you are correct, I am not alone. I would like to find a support group in my area of New Jersey. This BB is GREAT !! I may not be getting my work done in the office but I am comforting my own emotions. All of you are terrific !! I thank all of you and hope for the best for you too.
    It snowing like a banshee here. We are being sent home early so I’ll log in later from home. Hugs to you all :-)
    pattie-

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