Viewing 15 posts - 1 through 15 (of 31 total)
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  • flora
    Post count: 133

    Hi to All who have tamed the GD (that’s Graves Disease) Beast!
    In hopes that many former posters still do drop by (maybe as Guests) now and then, could I ask you to post an update with your own personal success story, just as a boost of encouragement for those here that are still working on their journey? Would love to hear how you are doing now and how you got there, no matter what treatment route you took, and what you learned along the way that helped get you to that light at the end of the tunnel. Knowing that so many of you are out there, all back on track – or close – is encouraging. Hearing from you again would be great!
    Hope to see your posts – all the best,
    flora

    Kimberly
    Online Facilitator
    Post count: 4262

    Great idea, Flora! Hopefully, some of our former posters will stop by and check in on this thread!

    bigad
    Post count: 40

    Hi All,

    It’s been a year since I’ve checked in and happen to see this post. I haven’t reached the light at the end of the tunnel yet, and who knows what the future holds, but I’ve felt back to normal over the past year and Graves no longer has a grip over my life like it did a few years ago.

    I’ve been taking 2.5 mg of mmi for the past two years and doing well at that dose. Since I’m feeling good on mmi, I’m in no rush to rock the boat and try one of the other treatments. I still have the possibility of going into remission, so we’ll see.

    Getting Graves was a wake up call for me, because I now try to eat right and work on my health. Prior to Graves, I was probably going down the road of having a heart attack or getting diabetes…on the day my Graves was triggered (with a rapid heartbeat), I ate a personal pepperoni pizza, a Philly cheese steak…topped off with EIGHT warm Krispy Kreme glazed doughnuts…I’m surprised I didn’t drop dead that day…I really think all the processed foods is killing us….and I’m sure plays a part in triggering autoimmune diseases. I’m currently trying to eat as many whole foods as possible, but it’s so hard not to cheat once in a while.

    Stay strong everyone and I hope we all tame that GD beast and not let it run our lives.

    Best,
    James

    snelsen
    Post count: 1909

    Hi James,
    I am so glad you are doing so well! Maybe you WILL go into remission! That would be great. It is nice to know that it is not ruling your life!

    And, you getting Graves’ sounds like a good thing, and a timely wake up call for you, which will contribute to a longer life, a better blood pressure, a strong heart, and joints that are much happier!

    I cannot imagine eating the amount of food you ate. Nice you have changed your food consumption. And yes, it is fine to cheat once in a while. It’s just that it is good to define cheating,(very small amounts, and no repeats!) and have a little treat. All this you already know. So…GOOD WORK!!! This is great. I am sure you can help someone else, as you undoubtedly already have, by writing this encouraging post!

    Shirley

    bigad
    Post count: 40

    Thanks Shirley!…I appreciate it. I followed many of your posts when I joined this forum and always found them very informative and helpful, so thank you very much for your feedback. :) This forum helped me get through a rough time, so it’s my pleasure to write an encouraging post.

    Exactly, you hit the nail on the head…Graves was actually a good thing (as weird as that may sound)…it was a way for my body to slap me in the face and tell me to slow down…we can treat Graves and live a normal life, but a heart attack can be fatal…and diabetes is no walk in the park either (both my parents have type 2).

    Take care!
    James

    barbra
    Post count: 160

    Hi guys and gals,

    I have been on an even keel for a year and 3 months now. Was diagnosed in July 2013, had RAI went through the usual ups and downs, switched from Levothyroxin to 75 MCG of Synthroid in December 2013 and started feeling so much better in March 2014. All my tests come back in the normal range and I feel incredibly lucky. I am off the blood pressure meds and the Ambien since I can actually sleep again, only take some Ibuprofen occasionally for the disc and joint disease and, of course, the ever mandatory baby Aspirin and Vitamin D3. I am good.
    Every now and again I feel a bit out of whack but it does not last and since my tests, which are now 6 months apart, come back OK I am not going to panic over every little thing and fiddle with my dosage.
    Still trying to lose some of the pounds I acquired. Not an easy thing since I like food! I can’t afford to gamble or travel, my husband passed away, I quit smoking, never drank or did drugs – so, like I told the doctor, that just leaves food. Oh well, 20 pounds to go.

    Writing and condensing it like this makes it look so easy. Make no mistake about it, sometimes it seemed utterly hopeless. And I did a lot of whining and crying on this forum. The ONLY people who understood this misery were here and I thank all of you for your time, advice, patience and encouragement. I wish that each and every one of you finds some kind of normalcy very soon and is able to get off of this terrible treadmill.

    This is my success story, hope I didn’t jinx it.

    Hugs.

    Barbra.

    flora
    Post count: 133

    To James and barbra –
    Thanks so much for dropping by and taking the time to write such encouraging posts on this thread. I remember reading here that once we reach that normalcy level and get back to life as we knew it, it’s hard to find time to visit the forum – but it’s so appreciated, and is such a boost to those of us still on the recovery trail. Thanks again!
    flora
    PS: to James – I’m just a couple months into 2.5mg/day as well – hoping I can post my success story here, too, before long – have certainly been learning lots about how it’s done on ATD’s, for sure!

    flora
    Post count: 133

    And PS and a Big Thank You to you, Shirley – you’ve been a pillar here, and were one of the very first to reach out to this frightened new recruit, back in Spring of 2013! Again, my thanks, and all the best,
    flora

    Andy
    Post count: 4

    Hi all

    My wife was diagnosed at the end of freshman year of college in spring 2007 after passing out while using the campus gym. The rest of college was a complete rollercoaster for her, with grades, memory, mood, happiness, anxiety, etc. all swinging in relation to her thyroid levels.

    She started by trying the ATDs and went into a remission that lasted about 6 months, which is when we first started dating. After relapsing, she decided to go ahead with the RAI.

    After doing the RAI, she had trouble figuring the right dose of Synthroid. On one dose she would be jumping out of her skin and anxious, but one dose lower and she would be tired, lethargic, and wouldn’t want to get out of bed. She asked about alternating doses, but her Endocrinologist wasn’t a big fan of the idea. Finally in 2012 I got fed up with the swings. We went to the endocrinologist together and he wanted to switch her dose again, which she was about to agree to. I assertively (all but yelling) told the endocrinologist that her new dose was going to be alternating between the two doses.

    Since then she’s been doing great. Sure she has her ups and downs, just like everyone else on the planet, but it doesn’t seem to be related to the Graves disease. She feels healthy, has gained most (if not all) of her strength back, has a great career, and all in all is doing really well.

    I don’t know if she looks at these boards anymore, but when she was going through all of this, they really helped her as did the one conference she was able to attend. We do hope to make it to another conference together at some point. Good luck to all suffering from this, keep up your hope and know that it will get better eventually.

    flora
    Post count: 133

    GREAT POST! Just exactly what those of us still bumping along on the recovery trail, love to hear! Thanks for stopping by, and taking the time to write – and all the very, very best to you and your wife.

    flora

    genuinruby
    Post count: 92

    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

    bigad
    Post count: 40
    genuinruby wrote:
    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).
    Ruby in Reno

    I agree wholeheartedly!!!

    newmane
    Post count: 6

    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.

    newmane
    Post count: 6

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

    newmane
    Post count: 6
    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

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