AnonymousAugust 19, 1996 at 3:21 pmPost count: 93172
Hi Gail…You must be cooking down in Bakersfield. I’m way up North in the state, but we can keep in touch via the internet or you can call me at (707) 668-5541, and we can talk. I started out overweight with this disease and it horrifies me to think I may gain more once my hyper turns to hypo. Hang in there, I’m told there is the other side. I just don’t know how long it all takes…Some see to have been battling this for years…God forbid. Guess we have to wait and see…Just know you’re not alone.AnonymousAugust 19, 1996 at 9:14 pmPost count: 93172
I’m learning more and more since I first signed on
this bulletin board. I’m newly diagnosed but I thought
people were suppose to lose weight (although I keep
waiting). I too put on a few pounds initially when I
was diagnosed but it stabilized and now I’ve not gained
or lost any weight.
What kind of meds are you on? And this may be a
dumb question but what is PTU?
Please respond, thanks!AnonymousAugust 20, 1996 at 12:01 amPost count: 93172
The emotions are running amuk with me. My coping skills have disappeared. I feel anxious, often near panic attacks. I have angry outbursts with my partner. I want to get under control, but every time I think I am, something proves me wrong. My ability to focus is awol. I’m currently off work, but feel I may lose my job if I don’t get back there soon. I cry at anything…Sounds like a mess, huh? I agree. My eyes are bad enough without all this crying. Be patient with everyone with this illness, and I guess, more importantly, we should learn to be patient with ourselves…hard when your hyper… I will continue to follow. best of luck to your sister, and to all of us during our trials.AnonymousAugust 20, 1996 at 12:05 amPost count: 93172
Hello Denise ! How have you been? Unfortantly,
I had to reschuedule my appointment for next
week, which will probably work out better for
me and the doctor because I wouldn’t have to take
my children. I have three boys, Caleb 11 3/4.
George 10, and Michael almost 4!!!What about you ?
Do you have any children? I am 37!!How old are you?
Where do you live? I live just south of Yosemite
in California. Right now it’s been very hot here,
and I am looking forward to it cooling down. Well duty
calls, my boys are screaming at eachother, …
another normal day!!!
Please keep in touch,
KatieAnonymousAugust 20, 1996 at 12:08 amPost count: 93172
Hi Brenda…I finally got my computer fixed to I can talk to you this way. How are you doing? Have your labs shown any improvement yet? Mine haven’t and I suspect I may need another dose of the radio active iodine. We’re still waiting past 8 weeks which will be 8/28. I dread becoming hypo once my thyroid is dead. I hear the levels plummet…no gradual comedown, just a crash and burn with extreme fatigue and weakness. I spoke with Jake George by phone today and he was very helpful by sharing his experiences. I just wanted to get back to you and let you know I was thinking of you…drop a line and give me an update.AnonymousAugust 20, 1996 at 11:00 amPost count: 93172
PTU is short for Propulthiouracil!! That is supposed to stabilize the thyroid. I’m supposed to be on it for at least a year. I’m doing well on it so far, my level are cut in half.
But the weight is still a very sore issue. I have put on 20 pounds since January. I went from 110 lbs to 130 lbs!!! It’s pretty depressing as none of my clothes fit. People tell me I look fine and that I needed to put on a few pounds anyway. I exercise everyday so it’s not a lack of activity. Maybe when I become fully stabilized I’ll lose some of the weight, but my doctor told me not to expect to go back down to the size I was.
What meds are you on? I haven’t heard of anyone being on PTU!!
Please respond!!!AnonymousAugust 20, 1996 at 4:16 pmPost count: 93172
I appreciate your optimistic outlook, Denise. I had my 1st dose of RAI in June, and may also need another dose. Are you having eye involvement ? I think that’s my major problem, along with the emotional gyrations. Let me know how the 2nd dose feels. I hear it’s pretty dramatic when the thyroid gland finally dies and your levels plumment. I sure will be glad to get to the other side of this, and I’m confident this will happen …in time. The question is, how much time. Are you working your regular job with this or off on disability?AnonymousAugust 20, 1996 at 4:24 pmPost count: 93172
Hi Denise, my eyes are my worst porblem and nothing seem to be able to be done…just lots of liquid tears and ointments. My levels are still in the 20’s after 1 dose of RAI…still waiting to see if a repeat dose is needed. Let’s keep in touch regarding the eye part of all this. Sofar, I have bulging eyes with mild exposure on the left from lack of lid closure. So far, no double vision, just edema around the eyes, pain and redness in the eye, amd sometimes edema in the eye on the cornea, like a bubble…most bothersome. And mentally I can’t seem to find my direction or focus anymore, even around the house. I don’t like this.AnonymousAugust 21, 1996 at 6:47 pmPost count: 93172
I am another one who has gained weight with Graves’ Disease. My endocrinologist told me that it’s very common, due to increased appetite. I haven’t been nearly as active since the problems got bad, but my appetite has been so healthy that I’m really never full anymore. I eat as little as I can without feeling weak, but I can’t lose the 10 pounds I’ve gained. On top of that, I have a tendency to retain fluid in my body for no reason I can see. I can gain another 8-10 pounds in a 48-hour period, and lose it just as fast a couple of weeks later. I was treated with I-131 on June 29th, and am still hyperthyroid. My job requires a lot of physical activity, and I haven’t been performing well, as I am weak and shaky and have muscle cramps. My hands are too weak to hold on to objects, and it’s hard to write. My feet hurt severely when I get up in the morning, and again if I’ve been sitting. I get emotional when I don’t want to be, and am sometimes ashamed of my behavior. I have the eye problems as well, though they don’t protrude as severly as it sounds like some people’s.
Does anyone else have pain in their feet? The endocrinologist told me that is not typical, and he’s hoping it’s from the Graves’ rather than from a secondary auto-immune disease. Also, does anyone else deal with the fluid fluctuations I have described? If so, have you found anything that helps? Also, I’d like to hear anone’s experience of going hypothyroid after treatment with I-131.AnonymousAugust 21, 1996 at 9:36 pmPost count: 93172
Yes to all of the above!! Fluid retention is a problem I have in my legs. It is common and numerous
people in my support group have this problem. Cramps are a part of this as well. Tehy can be controlled
to some extent by tylenol. Emotions and shakes can be treated by valium (very very mild dose) I take 2 mg
and it helps. Paxil or zanex (?) for the emotions are extremly helpfull. I started
them two months ago and my life has changed by to pre Graves days.
Drop a line and we can talk further.
JAKEAnonymousAugust 22, 1996 at 12:00 pmPost count: 93172
Does anyone take the pill, PTU?? I was highly emotional, irritable, just thought I was going nuts. I would blow a fuse for no reason. Since I’be been on the PTU, it’s not quite as bad. My level are cut in half being on this stuff. I don’t have the eye problem as far as the doctor can see. But my weight remain 20 pounds over what it was in January. Yes, I am hungry all the time, but my diet has not changed, or has my physical activity diminished. I was quite weak for a while but I pushed myself to get a a least a little exercise even if it was just walking down the street. I just cannot lose the weigth no matter what. My stomach actually looks distended or bloated and my legs look huge (well, to me they do!! ) Anyway, anyone who has been on PTU please respond.AnonymousAugust 23, 1996 at 2:20 amPost count: 93172
Hi Dianne…I just wanted to let you know that I had my 1st dose of radioactive iodine on 6/28, of this year. And I, too, continue hyperthyroid with labs and symptoms. I’m told by others that you really know it when your thyroid dies…your levels “plummet”, not gradual decline. I think it could be comparable with someone coming down off of a long speed trip…crash and burn. That’s when the Dr. starts you on medication to get your levels up again after the crash. I still haven’t had my crash yet. Since we’re neck and neck with our dosage dates, let’s keep in touch with each other and compare notes. I don’t have the sore feet, but I do have weight gain.(I was overweight to begin with). I suspect another dose of I- 131
in the near future. They want to wait 3 months. My eyes are quite bothersome…no fluid retention. I’m sure we’ll beat this disease…in time…Have faith and I will try to also…It is tough.
Also, you really should get off work on disability if you possibly can. My Dr. has me off until October for now…My coping skill are gone and I’d not do my job justice with the way I’m feeling. Think about it, OK? Time to take care of you.AnonymousAugust 23, 1996 at 2:49 amPost count: 93172
Thanks for sharing your experience, Rachel. Yes, our treatments were a day apart. They’re thinking already of a second dose? My endocrinologist told me he hadn’t expected much improvement until now, but that in the next six weeks there should be. He wrote my employer a statement saying that my exercise tolerance, endurance, and energy level are significantly impaired, and that he would expect I may well have difficulty completing my job duties until the condition is corrected in six months to a year. He didn’t suggest that I should be off work. My employer doesn’t normally tolerate living bodies missing work. Since I appear fairly normal, my supervisors and co-workers behave with skepticism when I express difficulty doing my job. There is an outward attempt to accomodate my shortcomings, but certainly no attitude of understanding or sympathy from anyone; even from my family. Again, I think it is because I don’t “look” impaired. I appreciate your understanding, Rachel, and I can certainly give you mine. Keep me posted how you are doing.AnonymousAugust 23, 1996 at 8:46 amPost count: 93172
I have been on PTU as have most folks with Graves. The first step is normally to put you on PTU for
six months. Make sure your blood levers are followed closly because PTU can really play havoc with your
cells and internal organs. PTU is very safe when followed by your doctor. After six months the doctor
will back you off of the pills to see how your thyroid levels do. What ehey are looking for is Hasimotos
disease. If your levels go back up they ether continue you on the PTU or give you the atomic cocktail.
It is not wise (in my opinion) to stay on PTU for more than a year. The side effects don’t justify the
risk as far as I am concerned. My Mom has Graves too. She has been on PTU for almost a year and I am
tring to get her to get off of the pills and have the atomic cocktail. I still have a problem with my
weight and holding water as well. I have been on synthroid for almost three years. Life does get back
to “normal” somewhat after a while. Hang in there.
Jake GeorgeAnonymousAugust 23, 1996 at 9:09 amPost count: 93172
My group meets in Melbourne Fl. Please look at the notice for everyone to read.
It gives the address to write to for support groups. Sorry it took so long to answer
but I work full time, am involved in Boy Scouting, and run a support group. Have your
read some of the messages here and it could help.
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