[newmane]

in reply to: to have ablation treatment? #1183951

to DEBBO
I know 4 women personally who have had ablation in the last 5 yrs are all very happy with it, they all overcame their symtoms from the hyperthyroid and have their sythroid does stable and only have to get rechecked every 6 months. None of them had eye problems before or after. All of them have perfectly normal looking eyes.
you sound exactly like me, Ive been doing the methimazole/up & down, heart racing times, hair falling out, rashes, and worst of all my eye protrudes but I had the eyelid dropped after a year or so but it doesn’t look like it used to and I can feel it in there and it still protrudes so I’m scared to get the RAI b/c I don’t know if it will re-affect my eyes or the other eye and if I’d have to go thru all that stuff again and still not get my eyes back to looking normal.
I’m new to this site today, so I’m going to get the hang of using it because I want to know if your doctor told you if you get RAI you will not get palpatations anymore and what were you told about if it will affect your eyes?
as I said, 4 friends of mine had the ablation and did not have eye complications and do not mention heart palpatations or fatigue or anything. one of them is 81 now and she’s more active that I’ve ever been, she’s having the time of her life.
If I thought getting RAI would do that for me I’d get it today but for whatever reason one doctor doesn’t recommend it and the other does but he’s not the specialist and I don’t think any of them know what to say if it will affect my eyes or not so I’m 2 yrs in and haven’t been given solid answers to that question . I got on here today to ask if anyone know if the RAI does get rid of the heart racing , if so, I still wonder if it would make my eyes worse. Open to comments/input newmane 10 18 15

[newmane]

in reply to: Emotional Rollercoaster, anyone else? #1183982

tekkafrost wrote:

Greetings,

This is my first time ever posting on a medical board and I’m not quite sure where to start. I’m a 28 year old Male and my Wife is 31. Late last year and early this year she and I both noticed that her right eye started to bulge and not be able to close fully by itself. We went to the eye doctor and they gave us some prescription, it didn’t work as it was only trying to address the eye. After a few months (now around late July/early August) of no changes we went to another doctor and she was diagnosed with Graves disease.

I hadn’t noticed any sort of mood changes, weight loss or any of the common symptoms for Graves late last year but after she was diagnosed and started her medication she started having mood swings. One minute she will be happy and fine and joking and actually talking with me; The next minute she is upset, angry or crying. Like any guy trying to navigate through daily decisions and long term decisions that affect both of us I sometimes say or do stupid things that can be irritating, but she has never held it against me and allowed me to be a human who makes mistakes.

Hello from a new person on here also; its a bit hard to navigate. I wanted to say I read your post and what means the most to me as a wife would be to have a husband who cares enough to ask and vent and try. It also helps me imagine how it must be for my husband but the weird thing is I don’t think I notice my own mood swings so maybe she doesn’t either ? I think I’m perfectly fine but he told me the other day I’m not the same person. We’re twice your age but same scenario. I pray your young wife will be cured and you two will have a long happy healthy marriage. As for me, I can’t wrap my head around the fact that the medical community knows nothing about this. I feel discouraged and confused. I’m not the same person I was 2 yrs ago. Then you have people, unlike yourself, who have 0 understanding or empathy & criticize and put you down for being tired or moody which you can’t even control . Well good luck to all of us. This is a good way to “vent” but I don’t feel any sense of interaction with the actual medical community as in , do any physicians go on this site? Has anyone , the moderators, etc, ever communicated with any medical people in this field ? Is there anyone affiliated with this site that might offer some input based on research ? I’m looking for answers not just someplace to vent. I want to be cured. I want your wife and all the other people on here to be cured . There are “worse” diseases that’s for sure, but this one is pretty challenging. Maybe because (I don’t know for sure) it’s not fatal? it’s not bad enough to warrant enough attention? I’ve read about famous people who have it, Mrs. Bush, Sia, Missy Elliot, Maggie Smith. What have they had done? I’m specifically asking about them because they all had/have (?) the eye disfigurement and I want to know what they had done to hopefully get their vision back and repair the eye damage? How are your wife’s eyes? What is the status on her eyes? It just breaks my heart b/c she’s so young I hope they aren’t bad! sorry I just realized I wrote in the middle of your post. I’m tired and have kind of fought to get on this site today so at this point Im going to leave my comments here b/c I’m too tired to re-post. I hope you know how to reply to me so I can read your reply? newmane is my log in name. thank you and hang in there! I feel bad for you two!

I’m terrified that this isn’t going to change and I’ve put up a wall between us to mitigate painful feelings. But I’m not happy with this because I don’t feel like I can be 100% myself and free to make mistakes like any other human being. I’m constantly walking on egg shells around her to try to avoid fights but I’m getting tired because it is exhausting.

I’m trying to keep my head up and be a good husband. I try to meet her needs and listen to her but I feel like I get blamed every time I don’t quite know how to help. I worry about her emotional state because she seems all over the place.

I’m not even sure why I’m posting this, maybe I just needed to vent or needed to know that someone else on this planet has experienced this and had it end up okay. I’m just a young guy who loves his wife more than anything and doesn’t know where to turn for help.

Any resources available would be much appreciated.

Thanks,

A Concerned Husband

tekkafrost wrote:

Greetings,

This is my first time ever posting on a medical board and I’m not quite sure where to start. I’m a 28 year old Male and my Wife is 31. Late last year and early this year she and I both noticed that her right eye started to bulge and not be able to close fully by itself. We went to the eye doctor and they gave us some prescription, it didn’t work as it was only trying to address the eye. After a few months (now around late July/early August) of no changes we went to another doctor and she was diagnosed with Graves disease.

I hadn’t noticed any sort of mood changes, weight loss or any of the common symptoms for Graves late last year but after she was diagnosed and started her medication she started having mood swings. One minute she will be happy and fine and joking and actually talking with me; The next minute she is upset, angry or crying. Like any guy trying to navigate through daily decisions and long term decisions that affect both of us I sometimes say or do stupid things that can be irritating, but she has never held it against me and allowed me to be a human who makes mistakes.

I’m terrified that this isn’t going to change and I’ve put up a wall between us to mitigate painful feelings. But I’m not happy with this because I don’t feel like I can be 100% myself and free to make mistakes like any other human being. I’m constantly walking on egg shells around her to try to avoid fights but I’m getting tired because it is exhausting.

I’m trying to keep my head up and be a good husband. I try to meet her needs and listen to her but I feel like I get blamed every time I don’t quite know how to help. I worry about her emotional state because she seems all over the place.

I’m not even sure why I’m posting this, maybe I just needed to vent or needed to know that someone else on this planet has experienced this and had it end up okay. I’m just a young guy who loves his wife more than anything and doesn’t know where to turn for help.

Any resources available would be much appreciated.

Thanks,

A Concerned Husband

[newmane]

in reply to: Share your Success Story! #1183868

genuinruby wrote:

Recovery is all about treatment that is best for you. Success is achieved by continuing to live our lives undefined by the ravages of the illness, no matter our treatment choice. I know it helped me to know that others had TT or RAI and their lives went on.

It is nearly 5 years since TT. I feel better. I look back sometimes and wish things could have been different, but, I know in my heart that I made the right choice for myself at that time in my life.

Life goes on, no matter what path we choose. I know that, for myself, “success” was achieved when I realized I could go weeks, without obsessing over my thyroid (or, now lack of it).

Wishing you the best on your journey.

Ruby in Reno

Yours is one of the best outlooks and its encouraging, thanks for posting

[newmane]

in reply to: Share your Success Story! #1183867

Yours is one of the best outlooks and its encouraging, thanks for posting

[newmane]

in reply to: Share your Success Story! #1183866

Hello, I was dx Sept 2013, 2 wks after turning 60. looking back, its hard to remember who I was, a healthy “young” 59 yr old woman who some said was pretty good looking (ha)
I saw this group back then & decided not to join b/c I read a lot of discouraging things and I was not going to be “one of those people” because “I was going to be OK”
Had been having a racing heart, thought it was stress. Hadn’t slept since I could remember, (stress, menopause) been on b.p. meds & ambien for a decade.
Had gone for yearly eye exam and told the dr. it always felt like something was in my eye and he said it was dryness due to age. during the exam he said “well you have big eyes anyway” and “everything looks good, see you next year”.
2 wks later my right eye started protruding & looking in another direction. I ended up with the “stare” and the eyelid “stuck” . obviously it blew my mind my family doc did bloodwork & told me I have Graves.
My 1/2 sister has had it for 20+ yrs. She got the RAI back then. I don’t remember noticing her eyes bulging before that, but they did start bulging after that and today she’s still on synthroid , can hardly see, couldn’t afford an eye specialist, weighs 67 lbs (she’s 70 now) . I don’t see her much, we live far apart and I still work full time. she wasn’t able to work anymore after she got Graves, it took pretty heavy toll on her.
so like I said, I was “not going to be one of those people” so I just focused on getting my time in at work, went to the endocrinologist and the eye specialist on a regular basis, fought fatigue, while taking whatever dose the endo said to take of the methimazole until I got to a normal blood test not long before the surgery to drop my right eyelid after over a year. he didn’t think the protruding warranted the more serious surgery needed to break the eye socket bones so he didn’t do that. (Nov ’14)
RAI wasn’t recommended to me from the beginning b/c of the eye involvement.
the endo told me I could be maintained on the methimazole until “probable remission” I again asked if getting RAI might just be the way to get rid of this diseased organ (thyroid) once and for all and was told again “no I don’t think you need to”
Yesterday a coworker 20 yrs younger than me with beautiful eyes who has had graves for years and did get RAI and said she feels fine, said she just doesn’t understand why anybody would choose to have to get blood tests all the time and bounce around on methimazole hoping to go into remission which is not going to last anyway.
she made me feel embarrassed and foolish, like I choose to go to the dr. all the time and complain about not feeling well as if Im needing sympathy.
I’ve done a ton of research to my wit’s end and finally today, I decided to join this group and ask for input . many of you post detailed readings and procedures which I find confusing. like all of us, I have a folder full of blood work results .
in recent months I had to go back on 5mg methimazole/day but TSH went back up to 1.95 TSH and according to the endo that is kind of hypo for me therefore more fatigue, etc . b/c I was missing too much work driving to the endo not to mention higher co-pay he said my family doc can follow me so I went & had blood work again and it was down to .6 after being off the methimazole for a couple weeks I think.
I have to go back again in 6 wks b/c obviously if the number keeps dropping Im back in hyperthyroid state again. the family doc thinks I should “have it nuked” he also said my heart skips a beat & did an EKG and Xray & his notes say theres minor fluid around my heart that just needs to be tracked.
I wonder if RAI will eliminate the heart issues and if it will make my eye(s) protrude again or what.
I do know RAI means another year or two of feeling like cr*p while the synthroid dose gets determined. not looking forward to that for sure.
the eye that had surgery is better but still protrudes a little – I feel very self conscious about how it , kind of droopy & not like the other eye. so , I don’t feel like I look like my old self at all.
my eye spec. is very happy with the results from his perspective I have nothing to complain about, I can compensate for the double vision by moving my head and the reality is I can See for petes sake so how can I complain. I am grateful of course , so my issues are petty compaired to how bad I know it can be.
I dreamed of looking like my old self again but maybe that’s just a dream. went to a plastic surgeon for input and it was not something he would want do b/c of Graves & the protrusion, so Im not your average woman wanting an eye job.
I haven’t had a bout of the irritation in a few months thankfully- I rarely have to use drops. I have to wear glasses all the time and was told LASIK would not improve my vision & my vision is perfect with my glasses on
Vanity of vanities, I miss my matching eyes, the only feature I ever thought of as kind of pretty .
If you read all of this, I am eternally grateful. Im unloading a bunch of pent up feelings obviously. I can’t believe anyone would take the time to read my post. so Thank You.

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