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I hear you Sue! There are days when I think if I hear the word “wait” one more time I’ll just scream. Sometimes we just have to go for it & do what feels right to us along the way. Little rewards.
Have a great day tomorrow!
Hi Shugie53!
This eye stuff is SO frustrating, isn’t it? My thyroid eye disease has been termed mild by the neuro ophthalmologist, but that hasn’t stopped it from bothering me. I haven’t learned about any magic bullets either. Here’s 3 things that I was told (by my eye specialist) that made me decide to try to stay as calm as possible about the whole thing. For now anyway.
1. The eye component of this, more than any other part, really justifies the word “patient” on our charts. And he knows it’s difficult.
2. The eye component still has many mysteries to it for those trying to help us. He is unable to predict whether it will worsen or not, or even whether it may improve on its own and to what degree. It’s all a “wait & see” for him too.
3. Here’s the part I hang on to: In the end, once thyroid levels are normal & stable for a period of time, and once the eye(s) stabilize as well and are no longer actively changing (for better or worse)…there are so many things that can be done for us, clinically & cosmetically. They can fix this! Especially if it remains mild or moderate. And as Shirley said, my doc also said…the more severe versions of this disease are actually fairly rare.Of course, there was one caveat (isn’t there always?). IF there are vision changes, that requires an immediate call to my specialist, and if after he assesses them it is determined that anything is being threatened, then something may have to be done even during the active phase. But right now, my optic nerve and all that are not under threat, so we wait. Patiently. Hard as it is.
Keeping fingers crossed. For both of us!
Hi Sue! Sorry you’re another one of us who gets dose-change-itis! I hate that syndrome. You asked for it, so I’ll do it – I’ll remind you that for some of us lucky souls dose changes can be really rough…we are just THAT sensitive when it comes to thyroid hormone levels!
And I’ll also remind you that this is temporary, you’ll eventually level out on this dose & those pesky change symptoms will subside.Another thing…I did notice that as I got closer to my normal…and therefore my level actually moved less w/ each change…the dose change symptoms were a bit more dramatic. Strange. I don’t get it. But it’s definitely what I felt. So if you’re anything like me, feeling so awful w/ the small adjustment may actually be good news?!?
Maybe you’re getting super close to that magical adjustment to “just right”? I really hope so.Your question about whether alternating doses when you seem to be sensitive to any changes in your levels is an interesting one. I don’t have any personal experience w/ doing that & I’ve not read anything about it either. I see both of your points. With the long half-life, it seems that, on paper at least, it shouldn’t have a negative effect. But you do have to wonder if it somehow could impact someone super sensitive to T4 changes. I know that on paper a TSH of 3.6 shouldn’t make me feel super hypo, but it does. I can definitely see why your endo wants to pursue that path next tho. You’re so close to therapeutic, but not quite where. I truly hope this gets you there. And soon. And it really sounds like you’re another one w/ an endo who is listening & willing to tailor your meds to YOU! Good news there!!
Hi Barbra! I agree w/ Laurel…for some of us it may not be enough to simply be in “normal” range…that our “goldilock’s” dose sits within a much tighter range within that supposed normal displayed on the lab slip.
I had a very similar experience to you. Had a dose change (on my Synthroid) for what was an obvious hypo level by any lab’s standard (TSH in the teens if I recall correctly). That increase made me feel better for a very short while, almost “normal” (I was so happy & excited…my 1st taste of feeling good in a long while), and then bam! The floor fell out from under me. I felt more hypo than ever. Got my labs done early (it was also only about a month into that particular dosage change for me) & while I was within normal lab limits this time (I think my TSH was 3.6), my endo said that this obviously was not a result that was going to work for me. She wanted to try to get my TSH between 1 & 2. So another dose increase! Went through the misery of dose-change-itis…and then felt perfect 2 or 3 wks later!!!. It’s been a little over 2 months now, just had my labs done. Lo & behold my TSH is 1.8. My porridge feels just right! lol Hoping it holds and doesn’t make a run for hypo-land again…but my point is that in my case…the entire “normal range” listed by my lab does not sync up w/ the normal range for my body. My range is even more narrow than the lab would suggest.
I can’t speak to adding T3 to the mix since we haven’t had to go there in my case. My endo was open to it, said that if we continue to struggle w/ hypo symptoms while having normal labs she’d try it because for a smaller percentage of folks that really can be the holy grail. But she didn’t want to try it until we got me between 1 & 2, and then only if I continued to feel hypo. She suspected that I was one of those patients that may be sensitive to a TSH over 2. She was right.
As for hair fallout…OMG!!! Every time I have hypo symptoms, every time I have hyper symptoms, every time I go through a dose change…my hair falls out fast and hard!!! Really freaks me out when it happens. Once things settle, the fall out stops. Until the next time.
However, and this could be in my head, but I swear that since my TSH landed under 2 and stuck there for more than a week, I’ve begun sprouting a bunch of tiny little hairs. My hairdresser even mentioned it at my last haircut. So if I’m being delusional or overly hopeful, then so is she! But I’m absolutely positive that the abnormal fallout has stopped & that the body to my hair has returned. So hang in there. (We really say that to each other a LOT, don’t we?) Sound like your doc is being responsive to your concerns and the way you feel…so glad to hear that part!First of all…I remember feeling so many of the same things you wrote about. And posting those very same thoughts right here on this forum.
You are NOT being “overly cautious” nor are you “overreacting”! You’re right, it’s your body, your health, your future…and it’s super important that you make the decisions that are best for YOU!! I get so frustrated when I hear that a dr said (or made) a patient feel like that. My first one did it to me & made me feel so crazy, depressed, scared & alone. Kind of hopeless even. And always made me feel like I was overreacting, like this whole thing was a simple little nuisance problem, easily fixed. My body told me different. But she made me feel like a psych case more often than not. Something none of us need when our thyroids are hyper & we’re trying to learn about a complicated disease process w/ several treatment options – all with their own sets of pros & cons & all while experiencing anxiety and everything else. I also went in search of an endo who would be a better fit. And eventually found one. Whew! What a difference that made!!!
Second, in my opinion, if you’re reasonably stable on ATD’s without any of the serious side effects (& your dr says it’s safe to do so based on your medical condition) there is usually no reason to rush into the other treatment options unless & until you’re ready to do so. In my case, I felt worse not better while on ATD’s & beta blockers so I gave up on them (still not sure which med caused me to feel that way). But they bought me time to research and understand (as best I could) the other 2 options & to at least stabilize my heart symptoms while I did. Everyone, especially my surgeon, said that it was best to wait until I was ready – medically, emotionally & mentally. I believe they were right. My post-op course went very well in the end & I think this is largely because I went into it with my eyes wide open, knowing what to expect, and sure that it was the best option for me personally.
Anyway, my surgery was this past February & I’ve done really well. My life is pretty close to what it was before I became hyper. There are others who’ve had RAI & can say the same thing. And there are several folks well controlled on ATDs & even some who’ve gone into remission & now don’t need anything. So there is hope!!! Hang in there! You’re doing the right thing in trying to find the right endo for you & it will make all the difference when you do (and you will). A good dr can make you feel so much more comfortable w/ Graves, w/ your options, w/ your future treatment plan. Such an important relationship going forward.
I can’t speak to the birth & pregnancy part since all this hit me after I had my children. But there are others here who can.
It’s not easy, and it won’t happen overnight…but you will be ok. And stick around here if it helps. It really helped me to feel supported, understood and less alone. Plus I learned more about everything to do w/ Graves’ & hyperthyroidism here than anywhere else.
I’m really feeling you!
ChristinaShakira, I’m on Synthroid. Had my thyroid removed February 1st, 2013. I can tell that my levels have flattened out from my last dose increase (which was back in early September) because my eye bags & swelling have really gone down. Like I said before, every time my thyroid meds are adjusted my eyes swell. That was true while I was on Tapazole as well. And they REALLY swell when I’m hypo. So I’m thinking (fingers crossed) that my levels are pretty close to optimal now since my eyes have not only improved substantially, but so has my mood, energy, etc. I’ll know exactly where I stand in another week or so.
Just to give you a little more detail on what my experience has been…they swelled pretty bad while on Tapazole because I just couldn’t stay stable on the stuff and I saw an immediate improvement after thyroidectomy (which lasted a few weeks, until I went hypo). Then they worsened during my 1st Synthroid increase, improved when my levels stabilized at that dose, and worsened again as I sat in hypo-land for a bit. Got another Synthroid increase, worsened for a few weeks until that dose stabilized, then improved a bit once I sat at the new level awhile, and then gradually got a bit puffy as I sat at that very slightly hypo level. My 3rd increase was this last one & as usual I puffed like a blowfish as the thyroid levels moved, and as is customary for me, I improved once I leveled out. I’m so hoping that this was my last increase for awhile because if my eyes improve even slightly from here then I know that I won’t need any eye surgeries. Time will tell.
Anyway, for now, my eyes have no upper swelling, just a tiny bit of lower swelling on the left and even less on the right. No dryness or irritation. Good thing I didn’t have any surgery to remove anything from them yet. If I had they’d be sunken now!
When my eyes swell they SWELL! I can actually see my upper and lower lids as I look out into the room!!! It still amazes me that they can go that far up and then that far down in just 6 weeks.My eyes, hair and muscle/joint areas are my first signs that my levels may be off – no matter what med I’ve been on. So I pay attention, but I try not to panic anymore. I’m convinced these are not permanent symptoms but just signs that my levels are either moving or too low (and in the beginning, too high). I guess that’s why my dr’s have told me that this is not likely Graves’ Eye Disease in my case, but Thyroid Eye Disease associated w/ abnormal levels. Especially since the swelling is unrelated to antibody levels in my case. I know the waiting is miserable – I’ve hated it – but it really is important. The old saying, “time will tell” applies here.
I think you’ve made a good decision in putting off any eye surgeries for later & to continue being monitored by specialists. Based on my own experience, the most important thing you can do now is work to stabilize those thyroid levels as soon as possible so that “6 month to a year” clock can begin ticking!!! Hopefully neither of us will need any eye surgeries, but if we do I hear there are some amazing surgeons out there.
This is one of my 1st symptoms when I’m hypo. The more hypo, the more aches.
I’ve never experienced this while hyper, although I’ve heard of others who have.Sue, this happens to me with every dose change! I attribute the “PMS on steroids” feeling (I’ve used that exact term w/ my family!) w/ the level MOVING versus the level itself. I’ve always been very sensitive to hormone shifts of any kind – so I guess the thyroid is no different for me.
But whether hyper or hypo or even normal – I’ve experienced crying, social withdrawal, “woe is me”, “am I ever going to be ok again”, “how much more can I take” mood issues w/ every med change. I get a whole host of other hormonal issues as well. Sometimes they last a week or so, and at their very worst for nearly a month. I so expect them now that I actually try to clear my calendar a bit for any dose changes. All the optional stuff anyway.
On the flip side, I have an acquaintance who has NEVER had this happen – in fact, he can’t even tell whether he’s hypo or hyper, it’s always told to him after routine labs are done, never cuz he had a complaint. He once had a TSH of 56 and felt perfectly fine & had NO issues w/ his dose increase. Me? A TSH of 3.2 and I feel sluggish, a minor adjustment in Synthroid & I get all hormonal. Go figure! But until you know whether this is your natural reaction to moving levels or whether this is your natural reaction to just being a bit hypo (& trust me, one day you’ll know
), probably wouldn’t hurt to check in w/ your doc to see about getting some early labs. I did it about 3 1/2 wks into my 1st Synthroid change to help me figure out what I was dealing with. Now I can tell my version of hypo symptoms vs my version of hormone shifts pretty well w/o labs.Hope you settle in soon!
