[elf]

in reply to: Graves Eye Disease #1075497

Lyn, the eye development may stop at various points for different people. Some are done with swelling only, and for others swelling is just a beginning of a process. We don’t know at the beginning which way our TED will go.

My first swelling on one eye appeared 2 months after the diagnosis. Very, very slowly, they started protruding. So slow was the process that I woldn’t notice on day to day basis, but a year after the diagnosis, I had a medium size protrusion and the "Graves frown". That was the point the development stopped for me (I have had no discomfort feeling in my eyes since). If you have a gritty, sandy feeling in the eyes then it means something is going on. Hopefully, all you will get will be this puffinness.

Having your thyroid levels normalized is very important for TED, and also never ever lay your head low at night (no skinny pillows, better 2 or 3 of them), this facilitates protrusion.

[elf]

in reply to: Graves and Weight… #1074933

I think the weight will try to crawl back on you when you’re hypo. Since my RAI 3 years ago I added 30 lbs (130 -> 160). Admittedly, the best part of those pounds came because I ate more than needed, rather than being hypo. I’ll try to put it this way: being hypo helps to retain that piece of cake on your frame. It takes a bit more effort (exersice + watching calories) than before Graves. But it’s doable, it’s not written in stone: "hypo = overwheight". I’ve decided to lose these 30 lbs by next summer, will see.

[elf]

in reply to: Questions about TSH Levels and Running #1074988

Cath – you are the third woman getting Dx with Graves with an 8-month old baby (the other 2 are myself and another lady I met on the net). The medical consensus says post-partum thyroid problems happen within 3-4 and up to 6 months post-partum, – I guess, they need to re-write that ” title=”Confused” /> Though you said you were hyper well before that, – yes, I had the irritability of Graves behavior way before my thyroid enlarged overnight.

Levels – different labs have different ranges for thyroid hormones, so giving just a single number won’t make much sense if the ranges are not provided – though the number with many zeroes is definitely Grave-ish TSH.

Permanency of treatment – There are groups of people with Graves who are comfortable with different things – some swear by their goal of reaching remission (through meds+diet), some are terrified of RAI and prefer surgical removal of the thyroid, and still the others go through RAI and this group is generally invisible, though I suspect it’s the largest one. I had RAI, and I understand people’s aversion to something permanent. From my own perspective, the goal of reaching remission is too elusive, too fragile, too dependent on precision (of behavior + medication + diet) that I couldn’t or wouldn’t be able to adhere to over long term. In short, it’s too much work when I’m too busy with young children. Running (or any other all-consuming goal) seems to me as an antidote to another all-consuming goal – achieving remission.

[elf]

in reply to: RAI VS REMOVAL OF THYROID #1074974

shannon8774 wrote:hello ! first im so grateful to have found this site i have been diagnosed with graves it runs in my family . my sister had the rai treatment and she keeps telling me to get my thyroid removed she was very sick from the rai… my doctor wants to do the rai .. i am just wondering if someone can give me some tips i dont know what to do but the doc says i could go into thyroid strom any help will be appreciated …

I could write a lot why thyroid surgery would creep me out, but I know already that if a person feels uncomfartable about a certain treatment, it won’t make much difference. Your sister has much more influence on you, than an online stranger. I had no problems with and after RAI, your sister had. By all means, go with what YOU feel comfortable with, what you will regret the least afterwards.

[elf]

in reply to: RAI VS REMOVAL OF THYROID #1074973

Mickey – I had RAI almost to the date – on Dec. the 13th, but three years ago, in 2005. While I read that people had various experiences and various speed of turning hypo afterwards (some as soon as 2 weeks), I can only relate my experience.

I, too, was apprehensive and listening to my body days and weeks after. Nothing really was happening to me for months. I wasn’t taking any ATDs, my thyroid levels were eurothyroid through May, so no Synthroid neither. On March 1st, and for a week after, I had a bit of hand tremors, and my eyes were especially sandy – I knew then it was that last ditch effort of the dying thyroid. In May, finally, my tests showed hypo, so I was given 0.1 mg of Synthroid (based on my weight). I’m taking it ever since. I never experienced any "hypo crash" like I’ve heard. My eyes settled by the end of that year (2006). For 2 years, I have had no signs or problems health-wise.

[elf]

in reply to: My son has Graves and we have questions #1075345

I was just wondering, (maybe experts can explain) – why GD in children??? 3 years old, 7, 8, 10… Wasn’t GD supposed to be a middle-age ailment? Is it something in the environment that "helps"? The food? Or the parents passed it down (genetic factors)?

[elf]

in reply to: Graves Eye Disease #1075490

Cathy – that is a very good comparison – I do feel like a Cinderella, a fairy appearing from nowhere, waving her wand, transforming me. I know I won’t look a 100% like before Graves, but better than now, anyways.

I don’t have bad protrusion, neither, my eyes are closing, I don’t need to tape them at night. I don’t use eye drops. My CAT scan shows bad protrusion, though, with 1/3 – 1/4 of eyes under the bone line (should be 2/3 of the eye under). I’m Asian (well, half-Asian, but look 100% Asian) – so the natural puffinness camouflages the protrusion somewhat.

I am excited out my skin, maybe I should temper myself down. I didn’t realize how bad I felt about myself until this surgery opportunity has arisen.

[elf]

in reply to: Graves Eye Disease #1075488

Bobbi wrote: So, I actually got two "lessons" from my mom, and they were both helpful. The first is that inner beauty matters the most, and the eye disease had not changed who I am as a person. The second was that withdrawing, becoming shy, allowing yourself to feel freakish over something that is totally beyond your control, is NOT helpful. Withdrawing did not help my mother’s moods, her sense of well-being, or her relationship with her friends and family. It diminished the quality of her life.

We only get one life. … I truly encourage you to "forget" how you look right now.

This struck a chord with me, as that’s what I’ve been doing for the last 3 years – talking myself into accepting the "new me". 3 years ago, I had RAI, and my eyes have been settled for the last 2 years. I almost succeded in forgetting how I look – except for "silly" little things like catching a stare from a stranger, or aversion to taking pictures of myself (this has been painful since my kids have no pics of mommy with them from the time they were 1 and 2 years old, and they are 4 and 5 years old now), or just looking at earrings and necklaces, not daring to buy them – to avoid drawing attention to my face.

Where I live, we’ve had no orbital surgeons, so whether you liked it or not, there has been not much choice but accepting your looks. Recently, an orbital surgeon was hired, a bright lady, and I have these overwhelming hopes now that at least I may be able to take pictures with my children as they keep growing up. I’m on the wating list, and as I understand, by the end of 2009 I may look different. (2 separate surgeries on each eye with a few weeks in between, and then lid surgery).

PS: Just wanted to add that I don’t blame RAI for anything, in fact RAI saved my sanity, and freed me from the "unwell" feeling. I’m healthy 3 years after RAI, taking fixed daily supplement (don’t need to monitor my levels and keep adjusting, as in ATDs). Too bad doctors are being bashed for recommending RAI. That is the best thing invented – our predecessors, if they got Graves, had to live with increasing goiters and eyes with no cure.

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