You are viewing graves_disease

Graves & Thyroid Diseases
 
[Most Recent Entries] [Calendar View] [Friends]

Below are the 16 most recent journal entries recorded in Graves Disease's LiveJournal:

    Tuesday, March 25th, 2008
    3:03 pm
    [ghostmist]
    It's been awhile, so heres my update!
    Well,

    It happened, last July 2007, my final Eye Surgery. Whew!

    In total, 7 eye surgeries, and a full thyroidectomy...So 8 total. Yeah.

    Yes, to answer the last persons concerens of "Swiss Cheese brain", and feeling "Tired all the time". It comes with "not" Graves, but the Thyroid Disease itself. Or you can find yourself facing "Insomnia", which basically means, your "going Hyperthyroid", super fast, and your body & mind may be tired, but forget it, your Thyroid is in "OVERDRIVE"!

    The feeling of super tired, no energy..."Hypothyroid"....Pretty much like watching a Slug cross a sidewalk...VERY SLOW AND POKEY!

    Graves symptoms are very noticable, eyes pertruding, extremely dry, weepy eyed, very sensitive to the light, or certain things (Perfume, wind, fans, etc) one thing that sets me off terrible is the Wind ! Ugh. I could never survive in Chicago, Pennsylvania is becoming windy enough! Also, for some weird reason...Vicks. You know, that clear stuff in the Jar you put in a vaporizor! Dear god...My husband has allergies, and puts that on...He sleeps in the guest room when he does that!

    Cool compresses help, and there is only ONE over the counter eye drop that can feel good, which is "Refresh Liquigel" eyedrops, its a green bottle. Because it is more "Gel like", it does not run out so fast. Trust me, I have literally bought EVERY type of Eye Drop there is!
    Keep them in the fridge too, feels "soooo good" when you put them in !(I also have a Polybak Antibiotic I put in at night, thats a script though).

    I mentioned I had my last surgery. The surgeon, was incredible! I am past serious. All my surgeries, but this last one were at "Wills Eye Hospital" in Philly, but this guy is freaking incredible!
    He had to do plastic surgery to open my eye, re-sculpt it, and its truely amazinng. Even in the Recovery room , "I kid you not", you are given Roses & a canvas Tote Bag. I had FIVE nurses! One rubbing my feet, One keeping a cool compress on my eye, one giving me crackers and drinks, one for the drugs, and I forget what the other did. AMAZING!
    IF YOU LIVE IN PA, AND NEED A GOOD EYE DOCTOR OR SURGEON, CONTACT ME! He's in New Britian, PA.

    I seen him yesterday for the first time since the surgery. My eye sight is getting worse, and needed to have an exam, and see what my new Perscription is for new glasses (Graves, we cannot wear Contacts...YOU WILL SCREAM IN AGONY! Plus they wont give them to a Graves patient!)
    Anyway, my glasses are due in shortly, how much you ask? HUMMM...How does 825.00 sound! Yep! Thats how odd and crappy my eyes are getting. It is a degenerating Disease. However, I had about a dozen pictures taken of me (well, my eyes), which are being sent to CA, to a group of Doctors who only deal with Graves, more like scientists.

    They may be on to something to cure it! They are looking for "guinea pigs" shall we say, to do studies on. Since I had a "Thyroid Storm", well...I might be taking a trip out West! Hey I will be famous, and in the Medical books for future generations! hee,hee!

    So, as far as my sight, the doctor said..."Um, you drive"? I said "Yes, why"? His Assistant started laughing, cause my current glasses are not doing the job, and she said.."Maybe we should have a Limo service Caddy you around till your new glasses come in" ! Ha,ha
    (This was a joke, and I laughed too).


    Please take care of yourself, keep your butts going to the doc, and take your meds...You can tell if they are not working, tell the doctor! And those who read this board, your here for a reason. You think you might have Thyroid Problems. Guess what? You probably do.

    Most people have Thyroid problems, but go "un-diagnosied"...It almost killed me, don't second guess, get a "FULL THYROID PANEL", you request it from your Primary, but make sure they do a FULL one, mine didnt.

    I had a seizure and fell down a full flight of stairs, severe sweating, severe tremors, weight gain and loss, sleeping disorders, nervous problems, and it attacked my heart & my eyes...Thus, the Graves disease, which took my eye sight in my left eye. I got about 70 percent back through so much pain of surgeries, and my thyroidectomy....well, it was bigger than a softball. And they couldnt save it.

    PLEASE TAKE CARE OF YOURSELF, I WILL WRITE WHEN I CAN. I AM DOING PHOTOGRAPHY NOW (HA,HA YOU SAY.."A WOMEN ALMOST BLIND DOING PHOTOGRAPHY"?) YES...MY EYES SEE AMAZING THINGS, AND MY WORK IS GETTING NOTICED TOO! I ALSO DESIGN WEBSITES, AND Sell on Ebay sometimes, not as much as before. So, life is good & bad with the diseases, I HAVE TAUGHT MYSELF HOW TO HANDLE IT.

    NO DOCTOR CAN DO THAT. ONLY YOU.

    STAY SAFE & KEEP UP ON YOUR HEALTH, FEEL FREE TO WRITE ON HOW YOU HAVE BEEN TOO !

    HUGS,
    Marie

    I KNOW I PROMISED PICTURES, I WILL DO THAT WHEN I CAN! I may make a Slide show, you can see the before & afters from surgeries, they are graphic though. But, they are for "learning", and hopefully, I can help you not get as ill as me !
    Wednesday, February 13th, 2008
    7:50 pm
    [irukai]
    Exhausted all the time... brain fog... is this part of Graves?
    I'm 34 and diagnosed last year with Graves Disease. My doctors are
    presently trying to get my thyroid under control with medication,
    before we do the RAI.

    I found out recently that my antibody levels are still high. My doctor
    is putting me through more tests and is going to switch out my medication.

    I'm on Methimazole and Tenormin (a beta blocker).

    At the moment, I am exhausted much of the time, have memory issues and
    have what I call "Swiss cheese brain". Have a very hard time
    concentrating and retaining information. It's especially bad trying to study a subject like math.
    My memory issues have often caused problems in my relationship.

    I am only working a part time job, but have not been able to take
    college classes on top of it because of the "Swiss cheese brain". My
    work is physical, and I don't feel like I get stronger by doing it. In
    fact I'm tired a lot. I wake up tired. I'm tired at work. I go to sleep for two hours
    sometimes after work. I spend the rest of the day feeling tired. I don't recover after
    exercise.

    I used to have a lot more get-up-and-go.

    I take my medications at night. Would switching to morning help me?

    I'm wondering if this is all classic Graves stuff.
    Tuesday, June 19th, 2007
    12:39 pm
    [ghostmist]
    How are you handling your Disease now?
    Whether Graves, Thyroid, or any other Disease. Who love to hear your story, and your current updates.

    This Board is to give you a place to come to "Help & Learn" from Thyroid & Graves Diseases.

    At this point, other Diseases are welcome as well.



    My update:

    I have my 7th , and finally surgery approaching on my Left Eye(Graves Disease), have had 6 already, and a Full Thyroidectomy. I have had "EVERY" symptom you can possibly have, since I was a rare case that caused me to have a "Thyroid Storm".

    I am dealing my best each day (dealing the keyword here), some days, I can find myself almost "blind", due to the Wind, or cleaners or perfumes from the day before. It can take up to two days to see correctly.

    I am use to it, dont like it ...But use to it. My bones are worse, and all joints and muscles, thats due to developing Fibromylagia & Rheumatoid Arthritis. So, exercise is a must, even through the pain.

    I will be posting pictures, graphic...But important for Women (and a few men) to "Train themselves" to watch for signs of a "Bad Thyroid", ane what can happen!

    Before & afters of my surgeries, including my Full Thyroidectomy as well. Some people may call them graphic, others see them as a "Tool of medicine for learning".

    I have no problem with pictures you may post, they "MUST" be related to the Diseases on this board, Graves & Thyroid. If not, they will be deleted, and you will have no access here anymore.

    I will post them as soon as I can, until then...I hope all of you are well, as best can be, and will leave an update on yourself since your last visit, or if your new..Tell us your story!

    Take care & Keep up on your Health issues !

    Emmi
    Friday, June 23rd, 2006
    1:15 am
    [mermaids_tears]
    Hi. My name is Dawn
    A friend recently told me about your community and I just joined it tonight. I'm a 50 year old woman who was always the picture of health, and a very active swimmer and surfer up until ten years ago. I developed a seizure disorder and it took the docs a few years and quite a few meds to get the gran mal and petit mal seizures under control.

    While recouping from that, I developed tonsil and throat cancer five years ago. Two surgeries and a heap of radiation later, I am cancer free...I hope.

    About six months ago, I started experiencing all the symptoms you guys are probably all too familiar with. Tons of hair loss, skin changes, crazy personality swings, lethargy, depression, painful joints, a strange leg rash, insomnia. I had an ultrasound that shows an nodule on my thyroid and am just beginning the process of finding out if I'm hypo or hyper thyroid. The blood tests came back showing normal levels. I will be seeing an endocrinologist in July to find out more. I will be having a needle biopsy of the nodule this Monday, to see if it's cancerous. Needless to say, because of my cancer history, I am nervous.

    The reason I am telling you all this is to let you know that I am no stranger to illness, pain, fear, worry, and all the other demons that our brains conjure up when an illness attacks. I found myself extremely depressed and withdrawing from my husband and lj friends. I was even going to pull the plug and leave lj. I just couldn't bare the thoughts of another illness and another battle to fight. A good friend called who had gone through awful thyroid problems ten years earlier. She spoke with me, encouraging me NOT to give up, to keep the faith, and trust in God. Yes, I am one of those born-again believers, but please don't hold that against me if you are not. I'm not here to preach religion, just to share in my simple way, what helps me.

    I was always told that I have a wild sense of humor. It has kept me sane through seizures, cancer, the death of my sister, a divorce, and now this...whatever THIS is.

    I made this silly icon and wrote this ridiculously silly poem today in my journal, and I wanted to share it with you. If you like the icon, please take it. This is one of the ways I cope with this kind of heavy stuff. I try to find the humor in things...even while I feel like I'm going insane. ;)

    Here is the link to my journal, with my poem, entitled "Ode to a Gland". Yup, I'm that loopy. ;) http://mermaids-tears.livejournal.com/214756.html

    I hope it lifts your spirits. ♥
    Friday, April 7th, 2006
    10:36 pm
    [olias79]
    Test Results
    Well, the last few weeks I knew I wasn't feeling right again. My doc had lowered my PTU dosage because I was on the low side of normal on my last tests. I got my results back which showed TSH .10, T3 free 4.19, T4 .74 and ALT 143 which that they said was bad and now I've been totally taken off of the PTU, apparently it's affecing my liver. I sure hope this doesn't mean RAI is in my future. I don't know what to think! I just hope I start feeling normal again soon. I get tested again in 2 weeks...
    Has anyone ever had a similar problem with PTU or antithyroid meds?
    Thursday, March 2nd, 2006
    3:04 pm
    [in_my_frame]
    hyperthryoidism and falling
    i have hyperthyroidism and graves disease. a couple months ago i fell down the stairs, hit my back, passed out and couldn't walk for 5-10 mins, along with being really dizzy and shaky for a good hour afterwards.

    yesterday, i tripped over some of my daughters toys, landed on a hardwood floor, and banged my knee (that's it.. no back, no head.. nothing like that) and i came THISCLOSE to passing out again, i turned ghost freakin' white, my face got really tingly, i couldn't walk for a few minutes, i kept having to sit so i didn't pass out.

    i had some blood work done to check for anemia, but it came back okay.

    any idea if this could be part of the hyperthyroidism and/or graves?
    i'm getting really worried about myself.
    i feel like i'm falling apart.


    any feedback would be lovely.
    thank you.
    Wednesday, February 8th, 2006
    7:57 pm
    [olias79]
    graves disease crap
    I feel so frustrated that I started thinking about this again. I should just wait till my appointment in 2 weeks but...if they hadn't made me cancel cause the doctor had a stupid meeting, I wouldn't be so clueless right now.
    They left my blood test results on my answering machine, said my TSH was .032 and the T4 was .84 . Is this good, bad? I have no idea but lately I haven't been feeling so good again. Anyone out there know how to interpret these results?? I've been on PTU about 7 weeks now.

    Current Mood: anxious
    Saturday, January 28th, 2006
    7:52 pm
    [hluckini]
    hello
    I was zooga but lost that account could not remnember alot! I lost my internet too for what seems along time. I do have graves disease but now the doctores are telling me it isn't but they are not thyroid specialist like this guty was. Anyway I still have so many of the crap that goes along with it as there is no cure just management of the symptoms and the world is not all privy to this disease it is alot like fibro which I also have nobody can help but we can stand together so please write me I will be on for quite awhile now Hee-Hee!!!

    Current Mood: busy
    Thursday, December 22nd, 2005
    12:31 pm
    [olias79]
    Just Diagnosed
    I see there isn't much activity on this group, but I joined because I just recently found out I have Graves Disease. I haven't been feeling very good for several years but just blew it off as fatigue. My husband and I were trying to have a baby with no success so I had my blood check finding low TSH, so they did all the other test and found Graves. So now I'm on PTU and Toprol to control my fast heart rate. My doctor wants me to get the radioactive iodine but I'm very apprehensive about it. It sounds dangerous plus I don't want to become hypothyroid. Now I wonder if I'll ever have any luck getting pregnant safely. My doctor totally advises against me getting pregnant for a while...I just wonder is it really so bad to just stay on meds and not do the radioactive thing...

    Current Mood: okay
    Wednesday, April 20th, 2005
    3:25 pm
    [psychojawea]
    Hi. This feels strange for me to post about. My sister was diagnosed with Graves Disease a few years ago. Until then, no one in our family knew what it was or anything. It was only after she was being treated that we started making connections between the disease and her behavior, all the way up to my grandmother (who was never diagnosed).

    I've been feeling odd lately, but didn't think anything of it. Finally I went to the doctor, let him know that this illness ran in the family and they did blood work. He called back today and my T4? (I believe its called) levels are elevated and he's asked that I see a specialist.

    I never really talked with my sister about her illness because we grew apart. I guess I'm just curious where to go from here. Obviously I'll be making an appointment with the endo-whats-it, but just really relieved to see that there is a community out there discussing this issue.

    Current Mood: thoughtful
    Wednesday, March 16th, 2005
    1:27 pm
    [zooga]
    graves disease
    well 2 more have been in since last I checked. I was diagnosed about 6 years ago and took the nuclear iodine to irradicate it now stuck with a little blue pill all my life oh well. I have not found many books on it as much as I do th fibromyalgia I have too. But there is soo many symptoms that are the same that I am not sure if it is one or the other.

    The way I found out was I had a rapid heart beat and loosing my hair having sore throats that I shouldnt have had all my tonsils and adnoids are out since I was six. But you know I think we are born with some of these things and it makes me mad that doctors seem to pass it off as a common child sickness give them some antibiotic now we know but now I fear that it did affect my heart and that it races alot but by the time I get to the er or doctors office it stops so how do you prove that.

    any way I am here if anybody needs to talk about it I would chck the national grves disease web site for more info keep on pushing something has to go right!!!

    Current Mood: crazy
    1:55 pm
    [maclou]
    Hey! It doesn't seem very active around here but I thought I would post anyway. I was diagnosed about three years ago when I was a sophmore in high school. I was having problems before that though, I was always hot and hyper in a weird way. It's kind of a funny story (heh or not...) how I found out. I had a bad cough and I went to the nurse's office (at my school) to get some cough drops and when she took my pulse it was so fast that she had to call my parents to pick me up. When I went to the doctor's they checked my pulse (it was 180!) and I had a cardiogram and my doctor said I was probably fine and that my heart was just fast. A few days later I had the nurse check my pulse and they sent me home again and I went to see a different doctor who figured out that I probably had a thyroid problem. Ok so not really funny...

    I got my thyroid destroyed last year, I had to go and get the drink twice. I had a really good doctor for a year but since then I've switched doctors twice. I havn't had too many problems with my medications... what I was taking before I had my it destroyed the medication tasted awful and what I've been taking since then was only changed once.
    Saturday, March 12th, 2005
    11:59 pm
    [utahsaint]
    Hi :) I just found this community:) I was diagnosed with GD about a year ago, but there is still so much about it that I don't understand. I guess I have been lazy and haven't really searched a lot about the disease, does anyone know of any good books that I could read?
    Friday, January 14th, 2005
    11:05 am
    [zooga]
    hello
    Wow I found a place just for us!! I have been diagnosed with graves disease about 6 years ago! I had the thyroid eradicated with nuclear iodine! Anybody else have that and now have been diagnosed with fibromyalgia so have a real bad time with moods and pain and fatigue. am on 1.5 of levothyroxin as of now going wed for this years check up I would be really interested in hearing anything on how this is affecting your life?
    Thursday, December 9th, 2004
    2:22 pm
    [melancholywings]
    Hi,
    Just found this community. I was diagnoised with GD 4 years ago. Was on PTU, which I delveloped an alergic reaction too, then had the surgery to have my thyroid removed. I'm now struggling with balancing my meds, and still have a lot of issues though I am doing so much better. What I hate most about GD is the memory loss and change of personality. Sometimes I feel like such an idiot because I can't remember simple things, and people don't really understand when you tell them it's the GD. I guess it's one of those things that you have to go through to understand it.
    Monday, October 25th, 2004
    1:37 am
    [ghostmist]
    My first post of many, I am sure...
    Well, its again...late, almost 1:30 in the morning, and here I sit, squinting at the screen to see as my fingers "hope" they are typing
    correctly...*Sigh*


    I just had to have another catscan 2 weeks ago on both my eyes, theres a problem ( again ) with my "Optic nerves" in the back of my eyes...I have the actual catscan pictures and report, I really didnt like what I read, and some of it, I didnt understand ( all med terminology that I am not familiar with). Anyway, seems my right eyes is very swollen behind the eye according to the report. ( dammit )

    My bones hurt me badly today, I have RA & Fibromylaygia....and STILL waiting on blood results on Lupus. "Life is fun" !!! Ya gotta laugh sometimes, right? Tonite I dont feel like laughing though.

    My Endo changed my Meds ( again )and now I am shaky, and hands are trembling, so I am definetly going Hyper. Well, only good part of that is " weight loss" !!! Yippie ! ( for now !)

    Must make myself lay down, no matter what...must lay down...

    Anyway, with todays entry. I do hope to see and hear from any of you with Graves or Thyroid problems, or Bone diseases...JUST come on in and
    "LET IT ALL OUT" !!! You'll feel better after bitching about this daily crap we have to endure ! tee-hee !

    Must lay down ....

    Current Mood: cranky
About LiveJournal.com