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Wow, that’s a really good question Sue – and I can see how this is going to be one w/ a divided response. I hadn’t thought about my annual flu shot until you mentioned it. I know my PCP would be onboard w/ getting it since she offered me one right before I went for TT last year (didn’t take it cuz I just didn’t want to introduce my body to anything else right before surgery).
But what to do this year? Hmmm. The excepts you posted make sense, and so does protecting yourself against the flu when you’re dealing w/ a chronic illness. Going to email my endo to see what she recommends I do.
Thanks for bringing this up!
I also can relate to the puffy eyes. This is a symptom that has really bothered me from the start because it’s a constant reminder that I have a “disease”. I kept telling my husband how much I hate the fact that I have an illness that not only affects my mood, mind & body…but my appearance as well. And since the eyes have been called the “window to the soul” – having them change feels even more significant. Plus it feels like I’m wearing a sign that notifies the world that something is off w/ me.
I’ve been seen by a neuro opthamologist who specializes in Graves’/thyroid pts, and a opthalmic plastic surgeon who does as well. They both told me that since my antibodies are low to almost non-existent that my eye issues are probably related to my thyroid levels and not Graves’. That means that (at this point anyway) they’re not too concerned that they will suddenly bulge out or that I’ll develop double vision. But it also means that whenever my thyroid levels (TSH, T4, T3) rise or fall out of range – or even just move, even when moving toward normal – that I’ll see an increase in this swelling. Apparently the swelling begins w/ fluid building behind my eye & sort of spills out to the surrounding tissues. Once my levels normalize AND then stay there for at least 6 months, but maybe as long as a year, I “should” see the swelling go down. To what degree no one knows yet. I’ve noticed all this to be true so far. So now I wait. But I’m w/ you on this one…it’s not a pleasant experience.
Also, I was told to make sure that I wait this out before doing any surgery since there is no way to know if it’ll completely resolve on its own, or just partially & to what degree. Ughh – hate the waiting, but it makes sense. And when the swelling gets worse, they don’t just bother me in the mirror. They ache a bit, they’re dry & gritty, that sort of thing. But they assure me there is hope. Whatever is left after all this can be surgically dealt with!
But I was also told to call if I developed any vision changes cuz this could mean that a nerve is involved & I’d need to be seen (although they’re not expecting this).In the meantime, the thing that seems to make the most difference in mine is keeping my head elevated as much as possible. For example, the swelling tends to worsen for several hrs after a yoga class. Also, staying hydrated seems to make the swelling swing up & down a little less (but I’m not entirely sure if they’re related or if that’s just in my head). Seems like you may be onto something w/ the sodium thing as well. I’ve thought the same thing. Would love to hear if you notice any improvement after decreasing your sodium intake!
Laurie ~ I wish you tons of luck!
For me, choosing an option & sticking w/ it was the hardest part of all this.
And the weight gain stuff? I didn’t have RAI, but had a TT (I don’t think it’s the actual treatment option that causes the problem, I think it’s the going hypo afterward that does – in most cases anyway). I gained a little weight after my TT during the time that I was hypo. I didn’t gain a ton (about 5 lbs, maybe less)…but I was nervous about it like you are so watched how I ate, forced myself to exercise a couple of times a week, and quickly reported hypo symptoms to my dr so she could increase my Synthroid & not leave me hanging out in hypo land too long. Looking back, it’s that last thing I did that probably had the most impact. I spent very little time being super hypo, and the time that I spent mildly hypo, while longer, wasn’t that long either. Since my levels have normalized I haven’t had any issues w/ weight at all. But you know how weight is. It’s dependent on so many things – from genes, to age, to diet, to hormones – on and on.
Just be sure to listen to your body!!
ChristinaI can’t even begin to function w/o a morning cup of coffee & I take mine w/ a non-dairy creamer as well. My endo & pharmacist both say that as long as I avoid dairy creamers AND as long as I am consistent with having that coffee (no problem there!), that they don’t see a problem since my dose will have been adjusted to account for this pattern. I do try to take my pill before I get out of bed tho & then I wash my face, brush my teeth, all that, as slowly as possible to give the Synthroid as much a head start as possible. I eat no food tho. So far this has worked well for me. Since you’re pretty hypo right now, you might want to mention the coffee to your dr to get his or her take on it.
As for feeling discouraged, I felt that way often in the first 3 months or so. It wasn’t until I finally adjusted my expectations & cut myself a little slack that this lessened. And finding out that a lot of what I was experiencing was a normal part of the post-TT process. I know it’s hard to be patient & even harder not to think that your situation is somehow abnormal (which makes it scary), but as you said – this really does take a bit of time. There are several people on the forum that just had their TTs too & post frequently…hearing their stories will hopefully make you feel less alone w/ your frustrations at least. And completely normal too!!
Oops! I was typing as Kimberly was typing apparently. Didn’t mean to repeat what she’d said. Sorry about that!!
Shirley ~ I think that you’re exactly who the foundation is talking about. Someone who’s “been there, done that” – and no longer “needs” the forum. Your diagnosis, treatment, and knowledge are so advanced that there are very few questions you’d ask that any of us could answer. I think that nearly every one of us has looked to something you’ve said or some encouragement you’ve given as we’ve battled through the fear & confusion of diagnosis, choosing an option, & for those of us who chose TT – dealing w/ its immediate aftermath. You’re always kind, don’t get mixed up in the “muck”, seem extremely honest, and have so much knowledge & experience. I’ve always found you so reassuring, whether responding to me last winter when I was scared to death or responding to others now. 😎
And Sue ~ I think that you will make a great warrior once you’ve reached your “new normal”. You’ll always need to monitor your body & labs, and you’ll always need to “tweak” replacement hormone as needed, but those changes and tweaks are nothing like the initial ones you’ve already experienced or may be experiencing in this early post-TT period. Your people skills are most impressive, and you seem very real & very honest. I’d say that you’re getting very, very close to Warrior status!
Kimberly ~ Love the Warrior concept! As has been mentioned before, most people who do well after treatment are not on these forums. I remember when I was faced w/ diagnosis & choosing a treatment option I had a hard time finding stories w/ good outcomes. This forum was, and is, the best I’ve found…but even here, there were only 2 post-TT people present back then. The others had left. I was desperate to hear the truth about what to expect from treatment, to hear the truth about what life was like afterward, & to get hope that one day I’d not only live w/ all this, but live well. I think that the forum will be even more incredible for future patients with the addition of RAI Warrior’s, TT Warriors, & ATD Warriors. The official “been there, done that” crowd!
Kudos to the foundation for thinking of this one!
Yes, Sue, your eye thing does sound a bit different than mine. Where did I get the idea that you had eye swelling? Duh!
I guess that I was relating to having a changed facial appearance, especially around the eyes, that caused others to ask if I was ok. I have a bit of eye swelling left, and I originally had facial swelling as well – which made the whole thing worse. The facial swelling is gone now, but it took a few months. I was told that all of that was due to thyroid levels.I think that I sometimes need to remind myself just how sick I’ve been and that I’m still in the recovery phase (if I wasn’t, then I wouldn’t be so actively managed by a healthcare team!). My endo had to remind me last week that it can take a year to experience full recovery from this experience. That includes my appearance. She told me this is a gradual thing. I’m much, much better than I was – but not as good as I’m going to be. Her words.
I’ve been trying to remind myself that I’ve never meant anyone who is ill or recovering from an illness who doesn’t show it (to some degree) in their face.
But if you find an awesome eye cream or concealer, be sure to post it immediately!!! 😎Oh! The eyes!!! Another be patient & wait phenomenon…
I’ve noticed that whenever my thyroid levels are on the move, whether toward normal or away – they swell & change appearance. I’ve also noticed that when I’m hyper they do this. And I’ve noticed than when I’m hypo they do it even worse than hyper. My antibody tests are all negative, so this isn’t a Graves’ thing. My eye specialists and endo tell me it’s a thyroid thing. And very common. I’ve been told that once my levels are normal & stay that way for 6 months to a year, that this will all stop & much (or all of it) will reverse. If it doesn’t all reverse, there are cosmetic procedures that can be done to help if it still bothers me. I believe them, because I’ve reached normal levels where my thyroid symptoms have been very minor & my eyes have looked better each time. Until we are forced to make another adjustment.
I’ve yet to find any products that do what I want them to. But drinking more water, keeping my head elevated, getting enough sleep do seem to help a little. The biggest game changer tho, for me, seems to be getting my levels closer to their sweet spot & staying level.
Can’t wait to hear if anyone finds a great product tho! I hate the eye swelling!! I kid around that if the eyes are the window to the soul…and mine have changed…what does that say?
Hi Sue…sorry to hear that you’re not feeling as good as you were. The bad news is that I think this can be fairly common. The good news is that it’s probably just another “stage” in recovery and will get better soon. If I remember correctly, it was right about this time in my own recovery (maybe a little sooner) that I went from feeling really good, not perfect, but pretty good…to feeling awful.
I was started on 100mcg of Synthroid & did really well on that. But I still had thyroid hormone in my blood. Once that depleted I went hypo, practically overnight (yes, like someone had “flipped a light switch!). At first I thought I was going hyper, but then realized that it felt a bit different. Got my labs and found my TSH had jumped from 2-something to the teens (I think those labs were only 2 weeks or so apart!). My dose was increased to 112, began to feel better, but never as good as I did in the initial weeks after surgery. Reported it about 3 or 4 weeks later, labs were repeated, and was increased to 125. Began to feel even better…much better…and my labs were all in range. Then I began to feel rough again at the 7 month post-op mark. I had gone hypo again, not as hypo as previously, in fact my labs were in the normal range. But my endo likes the TSH to be between 1 & 2 and I was 2.6 w/ symptoms and my T3, while in range, was at the bottom of the range. So she increased me to 137.5 just a few days ago. I asked if this is normal or if I’m one of “those” patients. She said she sees this often, it takes awhile, and for some it can take up to a year to fully regulate. That probably sounds scary, but in my experience each set of symptoms leading to a med adjustment is a little less severe than the time before. Still not fun, but at least I can tell that overall I’m making forward progress.
The initial month or 2 post-TT is a little complicated by the fact that you can experience a thyroid dump causing hyper days, and then at some point the hormones stored in the body are completely depleted. If replacement isn’t high enough yet, then you’re on to hypo days.
Just an FYI. Don’t panic if they increase (or decrease) your dose and you find that you feel worse for a few days to a week. I always do. Apparently I’m hyper-sensitive to “moving” my level, even if it’s in the right direction.
I want to reassure you tho. Even tho I am 7 months post-op and getting yet another adjustment in meds…I don’t feel nearly as rough as I did with the earlier adjustments. It’s an interesting phenomenon each time. The first one nearly knocked me down. Each one is so much less severe as I get closer to the “just right” spot. If you ask me if I feel better than I did a week ago the answer is sometimes yes, sometimes no. But if at any point you ask me if I feel better than I did a couple of months ago, the answer is always yes. If that makes any sense.
This WILL pass!
