[Anonymous]

#1039302

Thanks for responding – I have a visit with my endo next Thursday. I am having blood work done before I see him. Is there anything that can done to determine when you will go hypo? I hope I’m not too bad with symptoms because I really wasn’t experiencing alot of problem being hyper. Just warmth, hair thinning and skipped periods.

[Anonymous]

#1127394

reply to Frani:

You may not experience hypo symptoms at all. You will have regular blood tests to measure your tsh levels. Those will determine when your thyroid has stopped producing hormone and when to start replacement.

I didn’t consider my hyper problems too severe either. I had a bunch of symptoms that I could explain away as pms or stress. I certainly didn’t link them all together. I lost 20 pounds, but I had been on a walking program with a friend several months before diagnosis so I chalked it up to burning up the calories. It was way more than I needed to lose, though.

Just pay close attention to your body and if you have any questions or concerns don’t hesitate to call your endo. You didn’t mention having any eye problems, swelling, watering? I developed that after my RAI. It’s not too severe though, and I’m monitored by an opthalomologist

Best of luck,

Renee

[Anonymous]

#1127395

Hi Renee:Has your eye swelling gone down at all? Is it supposed to with treatment? Both my eyes are swelled but only one is running and very sore.. Taping has sure helped because one nite I fell asleep before I taped and boy!! that eye was horrible with pain and redness and running the next day. Since then I don’t forget..

regards, Ricki

[Anonymous]

#1127396

Renee, I didn’t have any eye problems. I had my eyes checked right before my RAI and they were fine. My opthamalagist did make an appointment for me to come back in 2 months. I hope RAI didn’t do anything to my eyes. Thanks for replying to me.

[Anonymous]

#1127397

Hi, Ricki.

How bad are your eyes? Are they bulging so that you can’t close your eyelids normally? I don’t need to tape my eyelids shut, cuz my lids close over my eyes, but they do bulge slightly and seem to be getting worse at every opth visit. I use ointment at night, and drops all day. This has really helped the comfort level.

Unfortunately, my left eye is bulging slightly more than my right and I’m VERY self-conscious about that. You can see more of the white above the iris of my left eye than my right. And the kicker is that my eyes were perfectly fine at diagnosis and before RAI. I woke up one month after RAI with bags under my eyes, and it progressed from there.
My eye muscles feel real stiff too. I’m due for another field vision test. Still no compression on my optic nerves, but my vision has changed in the last few months. My neuro opth is talking about radiation possibly. Can’t take steroids; made me very sick.

So even my eyes aren’t terrible, it’s noticeable and I look old and tired all the time and only in my early 40s. That’s the hardest part, the old vanity thing. I try to look nice, wear makup and all that, have 5 kids from 22 down to 9 and thought I looked younger than my age. NOT ANYMORE! Someday I hope to have eyelid surgery to remove the bags and puffiness.

Well, take care
Renee

[Anonymous]

#1127398

Hi Renee: Thanks for writing back. Yes, my eyes (left more than right) are bulging now. My left eye won’t close completely but I think my right one does. I use tape to close it at nite and drops all day.. I am also worried about the appearance of them. I’ve tried to do the same as before but I know I don’t look right. I’ve got so much swelling and dark underneath also that I look older too. Hopefully people just think I didn’t get enough sleep. I’ve been reading all the old messages about the treatments and am really worried about what he’ll do.. I’ve printed out some so that I can ask questions. They both RAI and surgery seem to have bad points from what I’ve read. Are you happy with what you had done? I just don’t want to go around for the rest of my life with wierd looking eyes. I also don’t want to put on weight.. I guess that sounds vain but I’ve always taken care of myself and this really puts a damper on things doesn’t it?
Would really like to hear more about some that have had treatment and which they chose and why and are they happy with it..
Thanks for listening..
Ricki

[Anonymous]

#1127399

Renee: It’s me again.. . I forgot to ask you when you got the RAI treatment. I read that some had problems after but it cleared up..

regards, Ricki

[Anonymous]

#1127400

Renee do not feel bad about your looks. I was feeling the same way and Im 43 Im overweight my eyes are Yucky!!!! and my youngest son keeps saying” don’t worry mom your not fat and your eyes are okay” I feel bad for him trying to make me feel better and he is 10. I to have a 25 year old who never says anything to me about my looks or weight. Im trying to loose the weight I have gained and will wait to see what the optho say about surgery in May. I used to be like you in the way that I didn’t look 43 or at least I felt that I didn’t . If ever it came up that I have a son 25 people would say wow you don’t look that old. I have been trying to stay positive its hard to do but just tell yourselfIt’s not that bad and some day I will be better and look great again.
Lou

[Anonymous]

#1127401

Hi, Ricki. I was diagnosed May of ’98 and took the ATDs for a few months and had RAI October ’98. Thyroid burned out like 6 weeks later.
Gosh, darn, I should have continuted the ATDS longer. I think the endos just want to do RAI to be done with it and don’t have to monitor you so much. Who knows? In November my eyes started getting swollen. Coincidence? I think not! My neuro-opth thinks there may be a connection; my endo does not. Go figure.

Take care,
Renee

[Anonymous]

#1127402

You were diagnosed in 98? So you’ve been living with this uncertainty for almost two years.. I am wondering if it ever gets better.. Everyone keeps talking about hot phase and I’m not sure what that is.. Does it mean that your eyes can keep getting bigger all that time (2-3 years)?Have your eyes gone down at all or still the same. You never had the eye program in the beginning at all? I’m so confused that I don’t know what treatment I should follow and I’m sure they’ll leave it to me. How do you pick your eye doc? You have a special one??? Sounds like he is a neuro type.. Maybe my neurologist could tell me about one.. Or am I wrong in noticing what you said??Have you gone hypo??,now that you’ve done the RAI treatment. I’m kind of weary about that one since it’s radiation and someone that I read said everyone but her were so covered up and so on.. I’ve read in the mail (from someone) that the surgery is faster.. I don’t want to go hypo.. Seems there are more mental problems etc with that. Including the weight problem. So much to think about.

I appreciate you letting me know all you’ve been through to help me understand this crappy disease..Now my sister is worried that she’ll get it.. Is it heriditory???

regards. Ricki

[Anonymous]

#1127403

To Ricki:

Hi again. To answer your questions: I became hypo 6 weeks after RAI. Did you have RAI or are you taking ATDs? I have been regulated for quite some time, but continue to have strange symptoms, which my endo says is not thyroid related. I had a blood test last year for other neuromuscular diseases, like MS or myasthenia gravis, but it came out negative. I’m thinking of going back to my internist and demanding an mri or further tests to rule anything else out.

I have read some threads on the BB about people having RAI and taking steroids at the same time to counteract any eye swelling. I wish that had been proposed to me. I would have gladly done it. I heard the hot phase lasts from maybe 2 to 5 years and the eye disease burns out and your eyes stabilize.

I have an HMO so all my docs are through Kaiser. I chose the neuro-opth cuz he’s the head of the opth department and he has lots of experience with Graves’ patients.

Auto-immune diseases can run in families. My sister has type 1 diabetes and I guess these are all related. My dad, at 70, developed type 2 diabetes a couple of months ago. I have a first cousin with MS. Who knows if some of these can be environmental or inherited or whatever.

Hope this info helps clear up some confusion. I learned more from the wonderful people on this BB than all my docs put together!

Renee

[Anonymous]

#1127404

Are you really serious about not having any eye problems prior to RAI? Oh my god – now I am very worried. I thought that if you didn’t have the eye disease before having the RAI, you would not have the eye disease. At least this is what my doctor told me? Hmm! I see him on Thursday, maybe he and I will have a nice little chat. Especially because I wasn’t crazy about doing RAI since I wasn’t very symptomatic.

Thanks fro responding.

[Anonymous]

#1127405

Hi Renee: Thought I’d give you an update.. I was just diagnosed last week so looked for something on the disease by search engine and found this site.. Anyway,, I had my scans yesterday and today.. Then to the doc.. I asked if it was mild or what? He said mild to moderate.. Told me when I asked about RAI treatment down the road and the problems I’ve heard here, that probably the people that are okay with the RAI don’t come on this site and write.. Said he’s been doing this for 20 odd and hadn’t had but one or two that do badly on RAI treatment.. (I think I’m going with the surgery when I have to or RAI with Predisone) Anyway, that was the appointment and yes, my skin pigmentation (can’t remember the name) problem was a contributor.. Couldn’t or would’nt give me info on my eyes.. But, I go to the eye doc tomorrow morn.. Oh, forgot he gave me Tapazole 10mg..
Hope it helps but going to look it up on the internet to see if any weight problems with it.. The info sheet with it didn’t say any..

best wishes, Ricki

[Anonymous]

#1127406

I forgot to mention the fact that you said your family had immune problems.. So does mine.. My dad and brother with diabetes. My mom with thyroid but no eye problems with her.. Lucky her..

Ricki

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