Forum Replies Created

Viewing 15 posts - 16 through 30 (of 173 total)
  • Author
    Posts
  • elf
    Participant
    Post count: 181

    Hi Shirley,

    How to add a signature:
    1. Log in
    2. Click on the User Control Panel link (right on top under the Board Index words)
    3. Click on the second, Profile, tab
    4. Click on Edit Signature on the left.

    No, I didn’t have a strabismus surgery. I didn’t have diplopia, or any vision problems, during the course of my TED, except for some time after OD, while my eyes were adjusting. It would be quite debilitating, I agree. I had my lid surgery almost exactly at the same time as you had your strabismus surgery, because I remember answering your post about day 3, in the middle of my most painful period, – 7 days or so after the surgery. I did just the upper lids, didn’t need to bring the lower lids up, hence no grafts. One of my lids had a perfect position, but too much fat overhanging, and the other lid had contracted after the OD, so even though it was my perfect "sitting-in" eye, it looked bigger, – so we had to drop that lid down. I was a bit nervous about that, since I’d read about over-done drops, when lids ended up too low.

    I have no choice in shopping for doctors. Here in a small Maritime province of Canada, it’s hard to recruit and retain a specialist. The previous specialist, who did OD on me, got too busy and overworked eventually, and left. I was wondering there for a while, how I was going to take care of my lids. This fresh new doctor was not busy yet, and scheduled my surgery a week after I saw him. I did have my reservations about him looking too young (31), but I did not really want to go into the shopping mode, interviewing him, – because what other option did I really have? I usually trust that everything that is going to happen to me, will happen for the better. It served me well so far. He did say that in 90% of cases, everything ends up fine, and in 10% the lid may drop too low, – but that could be correctable, too.

    You are awake for the lid surgery, they freeze just the lid area. So I knew they were sewing away, and a couple of times I had to sit up for him to see the symmetry of what he was doing. I must’ve looked like hell afterwards, because my husband and kids came to pick me up, and they just gaped.

    For a few days I thought that he butchered me, and my husband said later that he thought that, too. I was lopsided, this was too high, that was too low, with puss coming out. I had to wear dark glasses for 2-3 weeks.

    Now, it’s healed for 80% , and I look perfectly symmetrical, – nothing is too low or too high. I am so glad am done with this TED. <dancing on the table> Done!!!! You will get there , too !!!

    PS: My light sensitivity ended when my hot stage of TED ended. I am reading that not everyone has the same defined cut-off between hot and cold stages. I had a very defined end, where all sensitivity, for everything, stopped in what seemed like one day. I started feeling like the old me (not feeling the eyes), just looked like a ravaged landscape.

    elf
    Participant
    Post count: 181

    Unfortunately, once the fat is pushed forward, into your lids, (resulting in swelling, or puffiness, or bags), it is not going to flow back "in its place". This can be dealt with surgically, later, when you are in the "cold phase".

    Unfortunately as well, one has to just wait the hot stage out. Yes, we are conditioned to think that there must be something that we can do, it goes against our grain "to just wait". TED forces you to slow down. I don’t believe there is anything really helpful at naturopaths and others. The disease must run its course.

    My hot phase lasted a year, and I am grateful for that (that it wasn’t 3 or 5 years). Still, it was a hard year to endure, – psychologically, even with others commenting that "there was not much difference".

    I did orbital decompression 4 years after the onset of TED, and 3 years into the cold phase. I did the lid surgeries (to reduce my fat-filled lids and make normal-looking lids) last month, 5 years after the onset of TED. It takes time. I can’t say I look exactly the pre-TED way, but then I am 5 years older since then. And, despite all the surgeries, the "Graves frown" did not disappear (this is a frown that appears between your brows when the eyes are pushed forward). I still like the way I look, but it took long time to get here.

    elf
    Participant
    Post count: 181

    I hear you! I am on my 8th day after my lid surgery, the lids still swollen, and it seems to me it’s taking longer time to heal than when I had OD !! And your strabismus surgery took place still deeper than my lid surgery… Though we dropped one my lid down a bit, which involved undercutting one lid muscle on the inside, and that eye, of course, looks worse.

    We’ll get over it!! I have to attend both school and work and was wearing sunglasses at first, to cover the mess of my eyes (gawd what an ugly sight it was). Then, I couldn’t see what I was typing, the light is dimmed at work, eritromicine gel in my eyes, and yet darkened glasses. So I came across a pair of work safety glasses that are clear but have mirror coating on the outside. And they wrap around my eyes some more. So this is what I am wearing now, on my 8th day, and seems that I will be wearing them for a week more at least.

    There has been yacky puss coming out of the eye that we dropped, but I think it’s a good sign, a sign of the eye fighting to heal. The puss is almost gone, thankfully.

    Please keep us updated, how you are doing, I see you posted this 4 days ago on Sat.

    elf
    Participant
    Post count: 181

    Do you mean completely losing all peripheral sight, complete darkness on the sides as if you are wearing horse side eye protectors? Then I would push for decompression and your optical nerve evaluation.

    Or, if you mean it’s getting harder to follow the pencil when it’s moves to the side, (or up/down)? Then it’s something every TED-er is a subject to, to a different degree. I am past OD and lid surgery (way past the hot stage of TED), yet cannot move my eyes to the side, and have to double take when changing lanes when driving.

    elf
    Participant
    Post count: 181
    snelsen wrote: I know I am not a role model, but I don’t care what the TSH says anymore. It has not budged from .002-.006 over a year, with Synthroid range of 150-75mcg. Everything else about me is fine (except TED, which is awful.)

    There are the numbers…and there is the person!
    Shirley

    Bingo! The same with me – don’t care that my TSH is 0.04, 4 years after RAI, – if my free Ts are in the range, and the main thing, I feel great. Have always been on 100mcg, it’s my magic number, tried to lower to 88 mcg once, – no more.

    elf
    Participant
    Post count: 181

    4.5 years after RAI, my TSH is showing "hyper"(<0.04 or so) but FT3 and FT4 are comfortably in the middle of their ranges. I am not allowing my Dr to lower my Synthroid in order of bringing my TSH up. Tried to lower to 88mcg from my current 100mcg and felt worse, more of hypo-ish, and got back to 100mcg. When you say you are hyper, please clarify if that means just TSH is low, or if free Ts are high as well. Don’t let Drs treat you on TSH alone. I spoke to post-RAI and hypo people, – and such thing as TSH not corresponding with free Ts does happen. In that case, it would be better if your Dr didn’t treat you on TSH alone, but on FT3 and FT4 as well, along with taking your feeling of well-being into consideration (if his efforts to elevate TSH results in your feeling worse, then your well-being should take precedence over him trying to fit a number into a range).

    elf
    Participant
    Post count: 181

    It occurred to me that the rapid and strong heartbeat, starting from when I was in the middle-high school and later in college and workplace, in social only situations (when, for example, I knew that my turn was coming up to speak publicly), the type of heartbeat that I thought should be heard by everyone around me, – could have been an indicator of my thyroid troubles starting from puberty. It was some kind of social anxiety. Since it has been gone after my thyroid was gone, I’m inclined to think that it was connected to my thyroid. But in the end, who can go back and sort it out for us. I am just glad it’s gone.

    elf
    Participant
    Post count: 181

    Are 6.5mm and 8.5 mm measurement relative to YOUR NORMAL baseline? It’s hard to say otherwise. Mine was out by 3 and 4 mm relative to my baseline, and I considered it to be proptosis interfering with my life. Ppl have different normals… My proptosis at 21mm was someone’s normal… (my baseline is 17mm).

    My recovery was very fast, in 10 days all the bruising and swelling were gone. That was a bit faster than average. Depends on how easily bruised you generally are. A very gentle-skinned, easily bruised lady I know still had black circles around her eye on her 10th day, and got better looking after 18 days or so. It does come to an end. Pain-wise, the first 2-3 days I had pain killers (Tylenol) so that was not too bad. The hardest pain, personally, was on day 5 and 6, and then it was over. The thing that no one told me about, was that they had to make a cut in the jaw muscle under the skin (on the temple level) to access the eye, then they sewed that jaw muscle. I couldn’t open my mouth or chew without stabbing pain in my temple for 10 days or so. It was easier to just not eat. I lost 10 lbs (5kg) in those 10 days!!

    In terms of being able to move around the house and do tasks, they say it’s better to lay in bed/ on a coach for 5 days or a week, with ice compresses on. I did move around though, didn’t lay all the time. Double vision (I also didn’t have any before OD) was due to the eyes having to adjust to working together in a new position…. lasted about a week, and I even drove with one eye closed… The worst of it was me scolding my hand with boiled water when I thought I was pouring into a cup while I was pouring outside of it lol…

    Not a bad type of surgery altogether, it wasn’t worth years spent being afraid to do it…. All that waiting resulted in my orbital doctor departing without finishing my other eye, so I’m stuck here waiting for them to hire another eye specialist.

    If your Dr does not treat moderate proptosis, his is not the only or last opinion. Different doctors have different ideas on what they treat, keep looking for one who will work with you.

    elf
    Participant
    Post count: 181

    Snapshot- the short answer is Yes, these "side effects", or sensations, do go away. — When the active stage is over and the "cold" stage starts. How does one know when she/he is out of the "hot" stage and in the "cold" stage? When there are no gritty feeling, no tearing, no sensitivity to light/wind/air conditioning etc. It takes anywhere from 18 months to a few years to reach that stage.

    However, it’s just the "feel" part that will disappear. Your eyes may still look bulgy, or slightly (marginally) improve after the hot stage is over. Only then, if you are so inclined, you may improve your looks surgically. Some people prefer not to take that route, and that’s fine. Surgery is not mandatory, if there is no threat to your vision. And, people just plain may be scared of surgeries, – I was, to the tune of a few years until I got the courage to do OD. Usually, after OD, people say, Why didnt’ I do it earlier. But the fear is also understandable.

    elf
    Participant
    Post count: 181

    The eye disease part of Graves is extremely demoralizing psychologically, yes. Some "Gravers" avoid it, but I know people for whom the eye part occurred many years after the onset of Graves, or many years after the treatment. (Graves itself, and the eye part of it, seems to happen more during hormonal changes in a woman’s life, – puberty, pregnancy, menopause. My Graves and GED happened while/because of pregnancies).

    I had RAI in December 2005, too, – but my GED started just prior to RAI and kept going on after, for a year. That was the time that I don’t want to repeat, ever. The wondering, how bad I would end up with. The drastically diminished social life. I think for many people this time (of active GED) feels like the black hole in their lives.

    But, the active stage does come to an end. You will stop feeling any pain and sensations. Your eyes will start feeling just like before GED, when you didn’t notice them (of course, depends on how much the lids are affected and the optic nerve…) Personally, I didn’t have any optical nerve involvement, or double vision. But looking in the mirror for a year was just as devastating. Well, after that year, too, since the eyes stopped where they stopped after the development, and that was not pretty. Orbital decompression (and other lid surgeries, as needed) is a savior for this disfigurement.

    Post-RAI and post-GED, I feel pretty good, I don’t think about my eyes anymore. The level of self-consciousness is gone from 100% down to 5% (just because my other eye is still not done yet, but its proptosis is much smaller). I feel like GED is gone for good. I just don’t feel my eyes. And I don’t have any strict Graves diet, save for common sense healthy food. But, during the active stage I tried to stay away from anything "toxic" (no fish, no fish oil, no household chemicals). I have started a job, and don’t feel like hiding anymore. But it’s been 4.5 years since the onset of GED, and more than a half of that time is "lost life" for me. I don’t remember much of those years. My kids turned from toddlers to school children during those years, and I don’t remember much (I’m 46, an older mother). GED robs you of the capacity to enjoy life. But it does come to an end!!!!!!!!!!!!!!!

    elf
    Participant
    Post count: 181
    in reply to: Please help… #1066747

    Tamara, had my first kid at 39, too. The second at 41. Over those two years, my thyroid was getting worse. Was diagnosed with Graves when my youngest one was 8 months old. Had RAI when he was 11 months old. Stayed away from both kids for 2 days. That was 4 years ago. Had been skinny before, as any hyperthyroid patient would be (and was proud of course that the weight stayed off so easily with my eating anything). Since it’s not normal metabolism, it’s not justified to expect to keep having "hyper" metabolism while getting rid of hyperthyroidism (through surgery or RAI or meds).

    After my diagnosis, I stopped exercising as I was scared for my heart. The fear of harming myself persisted and I didn’t quite get back to exercising until recently, while still having my hyper and pregnancy-appetite. So altogether, in 4 years, I gained 30 lbs. I should have started exercising earlier, maybe a year after RAI (I had eye problems in the year after RAI, so I didn’t really think of exercising then).

    But as for my feelings, felt normal for all these 4 years. No problems that would indicate Graves, – no emotions, no symptoms.

    Have gotten back to weightlifting recently, and my sleep ability and energy levels are even better still.

    elf
    Participant
    Post count: 181
    "snelsen":9cfs3zn1 wrote:
    To elf…how long did it take for all the swelling to go away after your ocular decompression? I am scheduled for one 2/2/10, quite apprehensive about it. Any advice/comments you have are sure welcome.
    snelsen[/quote:9cfs3zn1]

    Are you having an endoscopic OD, thorough your sinuses, with an ENT doctor? Then it’s different, no cuts of the skin/muscles, no visual signs. People are said to be waking up to (almost) their previous selves after the op, no bruising/swelling. Mine was done the traditional way, a small cut in the laugh line, the surgery was done through it. In my case, all bruising/swelling were gone after 10 days.

    elf
    Participant
    Post count: 181

    Yes, I think (and heard) it’s possible to have "too much" thyroid replacement. And since it takes 3-4 weeks for a new dose to accumulate and settle in the system, this seems to be the right time the new dose would start manifesting itself.

    On the other hand, for the last couple of years I have had low TSH < 0.01, but no symptoms. My free Ts are normal, and I feel fine. Please insist on measuring your free Ts in the post-RAI state more so than just TSH. TSH goes wonky in some post-RAI people, but as long as free Ts are OK, people feel fine.

    elf
    Participant
    Post count: 181

    PAT – the eye measurements have different normals for different people. For some people normal is 20 or 22 (some people have naturally larger eyes). It depends on the race, too. It’s great that you have the baseline now. That instrument is not the most exact tool in the world, neither, – and I feel that different doctors will come up with different numbers. Maybe your eyes haven’t moved, it’s just people. I remember students trying to measure my eyes, with the Endo helping. The numbers were flying around the room, – "19… 18?… 20?"

    After OD on one eye, my measurements are 17 and 20.

    elf
    Participant
    Post count: 181

    Pat, I got about 10 lbs in the 5 months after my RAI, but again I have to always remind people that I just had a baby before RAI and was too skinny for a post-partum middle-age woman at 41. So adding those extra 10 lbs was restoring the "normal me", and doing away with the "fast-metabolic sick me".

Viewing 15 posts - 16 through 30 (of 173 total)