[Shugie53]

in reply to: Articles available-Psychological Impact of Graves’ disease. #1181495

Nancy, I just now saw this post. I put a check in the mail to you today.
Thank you in advance!
“Shugie”

npatterson wrote:

Hi everybody,

We printed out a few too many handouts for the Baltimore conference, and I brought them all home with me. If you will send me $1.52 postage, and your name and address clearly printed on an index card, I will mail them to you. Include your e-mail and I will let you know when they are sent out. I have lots of 9′ X 12′ envelopes. A couple of the articles are available on-line, but the others are not. Mail your request to: Nancy Patterson
84 Streamside Drive
Hendersonville, NC 28791

They include: Graves’ disease: Impact on emotions and relationships (Charles Zafonte, LSW, LADC; Emotions and Graves’ disease: am I crazy?, Gregory Brent, MD; What is wrong with me? I am not myself anymore, Ruffolo and Stearns; An open letter to the husbands of Graves’ disease patients , David Bos; Me, Bush and Graves’ disease, Abigail Trafford, The Washington Post; Some thought on Graves’ Disease: a bio-psycho-social view, Cy Worby, MD

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181564

Shugie53 wrote:

snelsen wrote:

shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:

No way Shirley, thats good karma

PS Shirley, I dont know if you live near UVA in Charlottesville but there’s a clinical trial there about graves disease. I corresponded by email with someone from the website but I live too far away, thought you might want to look it up

[Shugie53]

in reply to: Well, here goes! #1173657

Raspberry wrote:

AzGravesGuy wrote:

I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.

AZGravesGuy, you are awesome. I pray that all turns out okay for you in the three week followup. I would think an RAI fried thyroid wouldn’t look normal anyway? Tonight is a pretty dark night for me feeling like Graves’ has ruined my life to be honest, but reading your courage is inspiring.

to Raspberry : Im in the “this cant be real” stage. Ive had the dark thoughts too but Im still like “really? its that frikkin hard to treat?” Every time I give in & cry somebody comes to mind that has worse things. this is not really related but our neighbor was helping someone cut trees today & the top fell out of one and killed him right there on the spot! what are the chances of that! I feel so sorry for his wife, wow, unreal. Whats the big deal about taking mild steroids every now & then if it makes us feel better? they make it sound like its a death sentence or certain blindness . come on there has to be something to ease the situation l can deal w taking a pill for the rest of my life but in a hurry to feel better. Have you had a stressful or traumatic experience before ?

[Shugie53]

in reply to: Well, here goes! #1173656

I feel so bad for you hon! Something doesnt add up thats for sure! Ive been on atenolol for yrs as a blood pressure pill. My heart was racing for months & I just hought “well I prob need stronger dose” I take 25 mg. I just assumed it was stress & menopause kicking up again. Like you Ive had alot of the symptoms for a decade but Im the typical middle age woman. I hope your endo tried male hormone therapy for you like testosterone. You might have low T in a hormone way.
Re anxiety: I totally understand that and yes it is real and yes you need to get something to help that like xanax. My spouse had it real bad for yrs after he was dx w leukemia. Hes better now but still has attacks of it.
I wonder if you need a 2nd opinion?

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181563

ChristinaDe wrote:

Shirley, I’m so jealous! I love Dave Matthews!!! A personal fave.

And Shugie, I love the quote you ended your post with! So true…
It really helps me to know that I’m not alone w/ all this too. That others are waiting right along side me (not that I wish any of this on anyone…but if it has to be, at least we can find & support each other along the way). It makes such a huge difference for me as well.

We have to demand some attention to this, its unacceptable, I dont believe so little is known, after all these years. Im on a mission . Thank you for advice about neuro optha. Im going to look for one of those too.

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181562

snelsen wrote:

shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:

No way Shirley, thats good karma

[Shugie53]

in reply to: RIA Verses MEDS #1181485

I only had the Big Hives break out a few hours after my first follow up blood test! the dr. said it was just cooincidence! He said try to stay on them and hopefully it wont happen again. I go back 11/16 , Im leary about that for sure. Im going to ask for script for prednisone pack Before I leave the office next time. Praying for that, all fingers crossed! The only time my eyes looked like myself again was after a few days of the prednisone pack. I think they should let us have one on hand for any time we might be wanting to go somewhere special and plan to take them a few days before the event, then we can look ok for a few days. Has anyone read the posts about steroidal nose spray etc. And non-steroidal eye drops. Come on researchers, find us worthy of some great options please!!!

[Shugie53]

in reply to: RIA Verses MEDS #1181484

curlyred56 wrote:

I was just diagnosed with Graves Disease (2 days ago) and now I need to make a choice between RIA or Anti-thyroid Meds. As of yet I don’t have any eye involvement. My concern is that I read that RIA can cause the Exothalmus. Is that true? I am also concerned about the side effects of the antithyroid meds mainly liver damage. I would like a definitive treatment with the least side effects…a lot to ask I know. I would greatly appreciate any thoughts or experiences on this subject. Thanks so much.

Idk how old you are but my coworker is 42 and she had the RAI done right off the bat, had No eye involvement at the time (lucky for that I’d say!) and said she had a rocky year of getting the meds (synthroid) adjusted right but since then she feels perfectly great, eats & does whatever she wants, laughs Alot and still has her pretty green eyes.
My endo. (I was just dx 9/15) said b/c my eye is already protruding (that happend in 2 weeks time!) he would not recommend RAI to me. The eye spec. wont do anything to help the look of rt. eye protruding & swollen until I’ve been stable for 6 months. Now I read all this stuff about reoccurance and people getting the corrective surgery & then the d*m graves comes back & they have to go thru the whole thing again. OMG

sorry, I have to stay focused, its getting to me. But no, I dont think u have anything to worry about if your eyes arent affected & you get the RAI you should be good to go .

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181559

I love your message Christina thank you so much.
Yes the optha. told me”graves will teach you patience”
It still ticks me off to find that nothing much has changed since my sister got it 20 yrs ago. its not on the top of the charts for researchers I guess
If you google treatments offered in the UK its alot differnt from what I’ve read.
Thank you for being here, I did get the exact same info as you .
I know it will be ok in time…the patience part is easier said than done.
hearing from others is much better than going around asking everybody “how bad do I look” and taking pix of myself every day & kind of freaking out about it.
“I’ll lean on you and you lean on me and we’ll be okay.”
Dave Matthews

[Shugie53]

in reply to: Worried thyroid removal will ruin my singing #1181578

Jason I totally agree with you if you are a singer thats too big of a risk. I thought that would only happen possibly if they did surgical removal, not the radioactive pill kind (?)

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181557

Dear Shirley, thank you so much for taking time to write me. This forum is a little harder to use than the one for LLS (for leukemia which my husband has chronic) only saying that when looking online for a support group similar to the one we used to help him, there are multiple online support groups for thyroid. This is the one I found that seemed specifically Graves.
Yes and thank you for ack. I was dx mid Sept.
Yes I had the TED. My endo. sent me to a opthamology specialist in the field at a local medical center. He gave me the whole scenario , measured my eyes, said I’d prob. need a CT scan at some point but that it might be years down the road before he could or would be able to help me at all re my right eye which is not as bad as some pictures I’ve seen thats for sure but bad enough to make me want to hide out alot. Im still in the “I dont believe this” stage , thinking that surely to goodness in 2013 there are eyedrops or nasal sprays that would relieve pain & swollen lid & eyeball but this specialist is ultra conservative and wont prescribe anything. My family dr. said he was willing to let me try Prednisolome acetate 1% but I chickened out after reading possible side effects and not having a local “regular” ophtamologist. the specialist is in neighboring town and I work f/t so Im trying to conserve my sick leave for whatever the future holds.
I know I’m writing way too much but you’re the first person thats written me back and it sounds like you’ve been thru h*ll so I prob. sound like a whiner to you and I admire your courage but I cannot imagine how it has changed your life with all you’ve been through. My1/2 sister had the radioactive iodine treatment 20 yrs ago. Her eyes werent bugging out before she took that but they bugged out afterwards and she never had the ways & means to pursue surgeries or anything so she just stays on the sythroid (since the radioactive treatment causes you to go hypo) and she’s lived with it. Me, I’m not ready to be out of the public nor give up my little bit of social life, and I really dont feel bad, just the EYE.

snelsen wrote:

Hi. To review, I think I recall you are new to Graves’, had an allergic reaction (rash and hives) to methimazole, was prescribed a steroid pack for that, and it helped both things. But…you eye symptoms sound like you may have TED, thyroid eye disease. Have you seen a neuro-ophthalmologist? I suggest that. Or, be SURE you see an eye doc very familiar with TED. The first choice is best, and if you do call, say on the phone that you have active Graves, and think you may have active TEd.
YEs. Absolutely, the prednisone will help your eye. But for a short period of time. Usually used as an emergency measure to protect the optic nerve, it is is compressed int he active stage. I think your next step is to see if you have TED. Do you live in an area where you can find a neuro-op doc? A referral might help.
Steroid eye drops are used VERY very conservatively by good doc. They can cause many irreversible eye issues if used long term.
Shirley

[Shugie53]

in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181553

no input? I have read so much online. Hoping someone will see this & tell me if you’ve had any luck. a prednisone pack due to allergic reaction to the methimazole put my eye back to normal looking for a few days but of course they wont prescribe steroids for good reason.
hoping someone out there has found a magic bullet b/c I feel like I look like popeye
just 2 months ago I looked like a happy 60 yr old woman with pretty eyes the only good quality I thought I might have going for me
Now……

[Shugie53]

in reply to: Puffy eyelids since july #1181061

My eyes used to be my only good feature so I guess karma is teaching me a lesson. Now they are mismatched, one eye bulging & same eyelid swollen.
I have literally begged my optho. and family dr. to let me try any of the things I’ve read about online i.e. steroidal or non-steroidal eyedrops. I also read of a nose spray that might help.
when I had a terrible allergic reaction to the methimazole right after my first 3week blood test, I was put on the prednisone pack for 7 days. by the 4th day my eye looked normal like it used to.
but of course when I finished them & the hives were gone I am not allowed to take steriods b/c of the bad side effcts.
I have a prescription for prednisolone 1% eyedrops but Im afraid to use them . I think my family doc just got tired of me begging & he said they arent known to help but if I want to try go ahead so I dont know

[Shugie53]

in reply to: Newly diagnosed #1181423

ok thanks
thank goodness no more reactions but Im terrified of next blood test 11/18 b/c for whatever reason thats when I had the reaction , a few hrs after the blood test

[Shugie53]

in reply to: Newly diagnosed #1181421

Dear Kimberly
Im frustrated b/c Ive read so many articles from all over the world about use of steroidal or non-steroidal eye drops even injections and infusions to relieve some of the swelling and also pain behind the eye.
I dont understand why these cant be tried before the person is stable.
If there is a medical study which shows they can be harmful I understand but if a round prednisone due to hives gave a bit of relief it seems to me that something can be done to allieviate the returning swelling pain and double vision. It just doesnt make sense. Now that Ive been assigned a “specialist” who is “on vacay for 2 weeks” Im on hold .
The good news is I have been able to stay on the methimazole but if this is just a temporary fix then maybe I should go ahead & take the steroids & go for the radioactive pill. The dr. told me if I dont take steroids first both of my eyes will bug out.
I feel like its 1970 here where I live. Surely there are more advanced treatments that are helping the side effects of having the graves eye and if surgery is needed I understand not being able to get that until the thyroid is stable but there has to be something to alleviate this for now.
Has anyone tried the steroid or non-steroid eye drops for pain & swelling? please respond
thank you!

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