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in reply to: very confused about a bunch of stuff… #1066980
I am very thankful to be apart NGDF. I learn more each time. I am curious is there a difference taking RAI (horse pill) or surgery to remove thyroid?
Are you less likely to have GED if you opt for surgery? For some reason I think RAI created my GED.
Even though it’s too late for me does anyone have knowledge with the 2 options?in reply to: very confused about a bunch of stuff… #1066978Thanks for responding I never intended to be a the one using WOW factor. My purpose was to find help. I am very sorry if I insulted anyone.
in reply to: Orbital Decompression DONE! #1071460I want to know how to find the right doctor. What should I goggle to find a doctor to help? I had the decomp and work with my dr past 3 yrs. for some reason I don’t feel she is the one. Her office has turned more to skin, BHRT nothing to do anymore with GED. Any suggestion finding a second Dr to help me?
in reply to: eye muscle surgery done 12/18 #1067018When do you determine eye muscle surgery? I had the decompression surgery Jan 09, my eyes look much better, however I am having itchy, painful dry eye symptoms the past 3 weeks. I thought maybe this is stress. I think the doctors are great but not sure how to ask questions w/o becoming sensitive and teary with sadness
in reply to: very confused about a bunch of stuff… #1066977WOW it’s been awhile since visiting site. I suppose this is because accepting and not having day to day problems. As I type this now the confusion is my lack of accepting. I was diagnosed 2002, had RAD in 2 yrs GED set in. Had the surgery been doing well, here lately the pain and displeasure when I look in the mirror causes sadness.
I feel so alone and sad. In Oct 09 I started BHRT injections as well incorporate Adrenal, DHEA daily supplements. I feel it is working, but now I’m not sure.
Thanks for listening.Duh! I needed to go to home page. I sucessfully made donation and will continue to support this site. Thank you!
https://www.ngdf.org/regular_donation.phpin reply to: 13 years later and now eye problems????? #1072013I’ve been very lucky, when my eyes started to bulging and the pain- I shared this with Enco Dr, he referred me to Opmt Dr dedicated to GED. I had 2nd eye decompression May 13, and what a joy the reflex tearing, itching, eye ball pressue and sinis problems are of the past.
It’s such a blessing to look in the mirror and see the spark in my eyes. Maybe its worh a try to contact DUKE Medicine, North Carolina to see if they can refer you to Dr, specializing GED in your area. Good Luckin reply to: Eye Problem Post RAI? #1073236I have 2nd eye decompression March 11th, The 1st surgery went and results very well. The past 3 months experience eye infection, and left eye pain. The Dr. will do decompression, I’m a bit weary…..Pray for me
in reply to: Eye plugs????? #1073092I had eye plugs they are no secure and waste of money. The insurance didn’t factor in Graves, paid 350.00 plugs fell out less than 8 months. not a big fan WASTE of MONEY!
Ask the Dr. for OPTIVAR, cure dry eye irritation, rubbing, oily eye coating, as well reduced puffy eye. Cost 76.36, insurance paid half
in reply to: Not Feeling Myself #1073618You are not alone and in time you will feel better. I was diagnoised with Graves 2002/2003. RAI 2004, by end of that year I was an emotional, nervous whack of a person. The 1st 3 years best description (light switch). 2006/2007 we learned that by lowering/higher dosage didn’t work for me and the Dr. went in great details to go over my file. He stated that even when I am in the normal range my mental behavior didn’t respond dose changes. And continues to prescribe 175 the past 3 yrs, whatever the levels. As for the eye bulging this is seperate, after staying normal for 6yrs, the eye Dr and Insurance approved surgery Aug 2008. To see the physical difference from this procedure as boosted confidence no longer stress as much. Mentally, emotionally I still have days just not as severe.
I have 6 month labs/Dr appt next Friday and will share my lab results and expereince. Hang in there!in reply to: Question About Eye Problems #1073734Before going to a doctor and putting your child on a drug, try Morning/Evening compress. Get clean washcloth as hot has your hands can stand. This will provide stimulation then gently rub eyelids front to back. The eyes will moisten and free the eye of crust and oil.
If you have to go to doctor start with eye drops the best is prescribed product OPTIVAR.
in reply to: blepharotomy #1074290I had radioactive treatment 2003, my eyes start protruding 2004 experienced dark circles, tired looking. 2005 the bulging and eye dryness, headaches started. My Enc. Dr Berlin referred me to Dr Hudak trained ophthalmologist for Graves’s patients. She worked with Dr. Berlin to ensure TSH levels maintain 6months normal. I was approved for Eye Surgery and had the procedure Aug 2008. The sockets were reset, fat upper and lower removed. It’s been 6 months and I no longer have the eye stress symptoms experienced in 2005-2006. I feel so much more confident looking people in the eye. I did have to fight insurance company and the last hour they approved to pay half cost for this procedure. Most will think it’s cosmetic and you have to stay on top of your medical history; my case had to prove eye symptom was due to Graves.
UPDATE:
I come from appt with OPH. Dr. Hudak follow up appt last Friday and learned there are not many ophthalmologists trained and continues training for Graves patients. It is very hard to find dedicated trained doctors in this field. The main problem is the dedicated, honorable doctors are going out of practice, they are sad to do this however insurance companies and economy is taking toll.
SURGERY UPDATE
Since having procedure Aug 08, continued follow up appt. 2 weeks ago Dr. Hudak diagnosed I now have Blepharitis (Middle Age Acne) the margins of the eyelids where the eye meets the lid has lead to dry eye, styes, chalazion and eye infection, redness, itching, crusting especially in the morning, burning, sharp pains in the eye, reflex tearing, fluctuation in vision and tired eyes.
Prescribed treatment hot moist compresses this will soften up the thickened oil deposits that are congesting the pores of the glands. Next gently scrub the lids in the lash line with OcuSoftplus pads this is to help work off the deposits. Then rinse again. She also prescribed the best eye drop ever for Thyroid, Graves OPTIVAR 0.05%; Refresh can’t touch this eye drop or night time ointment. Also because infection I’ve been taking DOXYCYCLINE HYCLATE 00mg for 3 weeks 2x a day, then I take 50 mg 1x a day. Not only is the prescription working for eyes it has started to clear the body rash. Most importantly it does not affect my daily Synthroid 175 mg pill.REQUIRED FOLLOW UP SURGERY
Since having the eye procedure and healed quiet nicely. But I have air pockets that set in on the upper lid and small white bump determined to be sys. The procedure will not be as evasive the 1st surgery, it sill take 3 days before I can become pirate and take care of myself.Again, I am so happy to have this networking site to share, learn. With this condition and also recently diagnosed perimenopause oh boy not another hormone condition to deal with. Well this site has helped me express and not feel emotionally crazy.
My new steps:
1. take synthorid every morning at same time with 12 oz glass water
2. take B-12 pill 1 hour later with 12 oz glass water
3. take Doxycycline 2 hours later with 2 12 oz glass waterin reply to: Anti-Thyroid Drugs #1073895I had radioactive treatment 2003, my eyes start protruding 2004 experienced dark circles, tired looking. 2005 the bulging and eye dryness, headaches started. My Enc. Dr Berlin referred me to Dr Hudak trained ophthalmologist for Graves patients. She worked with Dr. Berlin to ensure TSH levels maintain 6months normal. I was approved for Eye Surgery. My sockets were reset, the fat upper and lower removed. It’s been 6 months and I no longer have the eye stress symptoms 2005-2006. I feel so much more confident looking ppl in their eyes again. I fought with my insurance company and the last hour approved to pay half cost for this procedure
in reply to: Graves vs hyperthyroidism #1073796Firstly I just came about this site and what a relief to have someone to talk with as well offer support.
I was diagnosed with Graves 2002 having just routine check up. My Dr. referred me to endocrinologist.I take synthroid 175 mg and after all these years Why is it I ‘m just now experiencing Signs and Symptoms of Graves’ disease?
I’ve been having very itchy skin outbreak rashes unable to sleep due to itching. This symptom has become regular starts with itch then small bump/rash appears back neck, chest, arms, and hand and now face. Research shows that this could be side affect
• nervousness
• irritability
• insomnia
• sensitivity to heat
I’ve seen Dermatologist and Medical Dr. and they suggest going through Perimenopause?
Jan 30th my eyes became so irritated I made urgent appointment to visit Dr. Hudak. She advised I have Blepharitis common condition of chronic (long-term congested oil glands in margins of the eyelids. This is most commonly associated with changes in body hormones seen in middle age and is often called “Middle Age Acne she also noted signs permenopause. She did provide treatment moist compresses and Doxycycline Hyclate 100 mg 2 time’s day 3 weeks after 50 mg 1 time a day. If I experience oily tear film, itchy go back to 100 mg. This med has worked slowly reducing eye irritation; as well skin rash appears to be healing.
Should I ask to have additional labs to measure hormone levels and will this help to identify if I’m really going through menopause?
• Estradiol -estrogen level-
• FSH -Follicle-stimulating hormone
• LH -Luteinzing hormone -
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