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in reply to: My TSH will not go down #1065931
TSH is always slower to respond ~ when you’re initially going through this (ablation, going hypo, and beginning replacement hormone), T4 is the better measurement. Later on, when you’ve been stable a long time, TSH is more sensitive and overall a better measurement to use for keeping things regulated.
T4/TSH measurements do not predict anything regarding Thyroid Eye Disease though. That has its own disease course, and nothing you do for your thyroid will change the course of TED.
in reply to: Need Advice #1066061by graves mom on Sat Mar 27, 2010 6:41 am
Does anyone know if there is evidence that prolonged GD causes learning deficiencies. My daughter was uncontrolled for 5-6 years. We finally had her thyroid removed. Although the emotional issues have improved (just about disappeared), she is still having difficulties in college (academically). She also has type 1 diabetes which was out of control until her thyroid was removed. Anyone have any info?Hi graves mom,
This is the kind of thing that hasn’t been quantified scientifically, but I can tell you that many of my GD friends report continuing issues with "brain power," for lack of a better word ~ we still get some of the "GD fog" and continue to experience issues with memory. They DO improve over time, as our levels remain stable, but I haven’t heard anything about studies proving such a thing. The diabetes can’t have helped, and I can’t speak at all to what longterm effects that could have. It’s a good thing she’s finally seen such an improvement with the emotional issues, and it’s a good sign that she’s been able to heal so well. Just figure out what she can do to bolster her academic performance through small things ~ taking more complex notes, or even taking a tape recorder to class so she can review exactly what was said while she’s studying. I believe she can get there, based on my experience. It might be harder than it would’ve been if she never had Graves’, but it’s definitely possible.
in reply to: Driving a car #1066105I’ve seen photos of severe cases, you’d be completely shocked. I lose my breath sometimes when I think of how bad it gets for some people. And when the symptoms are something you can manage by doing something simple, it’s always better than the temporary fixes you can take advantage of while in the "hot phase." Most everyone comes out the other end of all their symptoms within about three years (most in far less time, some as little at 18 months), and mild symptoms tend to self-correct when everything cools down, so doing anything drastic to fix it can go wrong when things go back. The other complication is that, while your symptoms are "hot," they change frequently, so it’s hard to get a complete handle on any one symptom before it moves on ~ double vision can move around as different muscles are affected, etc. etc. ~ and that ends up making it a little more reasonable that all you’re asked to do is wait and see.
in reply to: Hysterectomy & Graves disease #1065956I’ve never heard any facts on this one, but I do know that changing levels of estrogen/progesterone during times like menopause and puberty can throw your levels OFF ~ which is slightly different than throwing you out of remission. If your TSH/thyroid feedback loop is working right, that shouldn’t be a problem, and that’s thanks to your pituitary, not your thyroid. It’d be a good time to have more frequent monitoring, just in case.
in reply to: Question about Grave’s Eye Disease #1065959Just a couple of things to mention.
First, while a very small population of Graves’ thyroid disease patients end up with the very worst symptoms of TED, there has been one study (a little morbid, they studied GD patients in autopsy), where they found that just about 100% of us have *some* evident TED changes. They aren’t sure yet whether the TED antibodies are completely separate from the Graves’ thyroid antibodies, or whether they’re incredibly versatile and can attack several tissue types (that’s unheard of, but lots of things were unheard of until they were proven). In any event, we DO know that it’s antibody action on the muscle or fatty tissue behind the eye (younger people tend to get more antibody action on the fatty tissue, older people tend to get more antibody action in the muscle tissue, and people "in between" get some of each), which expands the area taken up by those tissues and causes the bulging. The pressure you feel behind your eyes may well be a minor form of antibody action that just isn’t "enough" to push your eyes out. It may NEVER push your eyes out. You may just have a very mild form of TED.
Second, the doctor to evaluate your TED status is the ophthalmologist, not the endocrinologist. The disease path of TED is completely separate from the disease path of Graves’ thyroid disease, and nothing you do for your thyroid will change things related to your eyes (except, as you mention, the small chance of increased symptoms after RAI). The ophthalmologist is the expert (not the optician, not the optometrist). We recommend seeing an ophthalmologist affiliated with ASOPRS (http://www.asoprs.org) because they receive additional schooling related to TED symptoms and treatment. It IS possible to have compression of the optic nerve without bulging, but it is VERY rare. You can do your own little "test" by looking at something that’s very, very red (a Coke can is a good choice). Look at the object separately with each eye. If one eye sees the color as more "pink" than bright red, get thee to an ophthalmologist, and quickly. As I said though, it is VERY RARE, and you would likely be suffering extreme discomfort if this were the case for you.
There was one study done a long time ago which showed that 16% of RAI patients experienced "temporary worsening" of TED symptoms following RAI. It has not been replicated, but it is useful to know in case you have VERY bad TED symptoms prior to treatment for thyroid disease. For some people, they will choose another treatment option for fear of the possibility of increasing their symptoms even a little. For others, they will choose a concurrent course of oral steroids, which was shown to completely negate the temporary worsening effect (but of course steroids carry their own risks). That’s a discussion for you to have with the ophthalmologist. I had some gritty feelings in my eyes for a few months after RAI, but that was it. I have never progressed to "full on TED," though you could see some changes in my eyes "back when." Everything has since returned almost completely to normal for me.
Seeing an ophthalmologist should be your next course of action, since you’re so concerned. As with anything autoimmune, keeping your stress reactions to a minimum will be helpful. It’s not possible to remove all stress, OR stress reactions, but do what you can. It’ll help.
In the meantime, using artificial tears (NOT get-the-red-out drops) can help with the grittiness and discomfort. The drops you use today will help you tomorrow, so just get in the habit of using them occasionally and I’ll bet you find some relief. Things that are particularly bad on your eyes are breezy conditions, forced-air (like in an office building), flourescent lighting, and bright sunlight. Anything you can do to protect your eyes from these things will be helpful.
I hope that helps! Feel free to ask any follow up questions, that’s what we’re here for!
in reply to: Graves eye disease and decompression surgery #1066453The only reason I can think of is that it would create difficulties given the other surgeries you’ve had to date ~ in other words, now your eyelids would be "too big." I would advise finding an ophthalmologist associated with ASOPRS (http://www.asoprs.org), because they are specifically trained in issues related to TED. It may not be too late for you, but you may have to do some extra procedures in order to get everything lined back up. There are several ways to do decompression, so make sure you’re dealing with a doctor who knows it ALL.
in reply to: what else can happen? #1065971There is a condition related to Graves’ that is called pretibial myxedema ~ it presents kind of like a thickening of the skin on the shins, it ends up looking a little like an orange rind, and it itches like crazy. It’s another autoimmune condition that some patients get (a really small group), but it can be truly miserable. I’d push for a sooner appointment, if you can get it. If that’s what you’re dealing with, there are steroid creams that can help a lot with the itching, and I would think you’d be better off getting connected to those sooner than later. I think it ebbs and flows like most autoimmune diseases, so there are times when it may crop up, and times that it may go away (IF that’s what you’re dealing with). It’s caused by antibody action (antibodies our body has mistakenly built against its own healthy tissue), so keeping your immune system relatively "quiet" can help the symptoms settle down as well. Stress and stress reactions can "amp up" the immune system, which would usually be protective, but in our case it also stimulates the antibodies that are attacking our tissues. Any way you can keep your stress level down may help. Remember that no one has a life completely without stress, so it’s partly how we deal with it and partly keeping it at bay. Again, IF that’s what you’re dealing with, with this rash.
in reply to: Great news…I’m pregnant..nervous though #1065976Thanks for the update, I’m happy for you! I’ll be thinking of you, let us know (when you can) how it’s going! ” title=”Very Happy” />
My goodness, what a tough time this is for you! It’s REALLY impossible for us to say what might happen next, considering your path, but it sounds as though your doctor is very responsive, and that’s definitely helpful.
Since you’ve been mostly unregulated, all of this may be predictable, I guess, but since it happens differently to each of us, sometimes we just have to take the ride and see what it’s like, if you know what I mean. Do the best you can, make sure your doctors know what’s going on, and go easy on yourself. Sounds like you are doing that.
You are SMART to check with the doctor when scary stuff happens (I’m sure you’re up on Thyroid Storm and its symptoms?), so keep doing that ~ don’t be afraid to "pester" them, it’s their job to monitor your health and give you advice. Hopefully the PTU will give you some relief until your surgery.
I’ve heard that when a patient has both Graves’ and Hashimoto’s, the typical treatment is ablation (either RAI or surgery), simply because it is so hard on a body to be constantly out of balance AND moving to extremes in opposite directions. I hope you are feeling better VERY soon, and please keep us updated on your treatment and how you’re doing!
in reply to: Newly Hypo..help with fatigue #1065993Since it’s truly, at its root, a chemical deficiency of thyroid hormone, it’s hard to do anything that will make you feel as if that’s balanced. You won’t really feel balanced until it IS truly balanced. A little stretching may help, but watch for muscle cramps, because lack of thyroid hormone can bring that on. For the most part, I would suggest that you go easy on yourself. Don’t overbook ~ know that you’ll be feeling this way for a while, so limit your commitments until you DO start to feel better.
in reply to: Being hypo and bloating #1066006Just jumping in briefly to say that diuretics would NOT have any effect on Thyroid Eye Disease bulging, because that’s not the cause of that particular symptom ~ that issue is caused by antibodies attacking the fat and/or muscle tissue behind the eye.
I had no water retention after RAI, or while I was hypo, or at any point along the process, so I can’t speak to its causes. I can say that being hyperthyroid messes up a LOT of things within our body, and again, that’s different for each person.
Keep looking into it, because even if it’s NOT caused by thyroid imbalance, it needs to be corrected. Too many doctors will look into our eyes and say "your thyroid levels are fine, so go home." The conversation CANNOT end there. We need to reply, "yes, but this is not normal, and we need to investigate it, and fix it."
in reply to: Being hypo and bloating #1066002It’s quite possible that he will feel rather hypothyroid for a little while longer, though it should be getting better daily, even if only by small degrees. He may also feel a little hyperthyroid, at alternating moments, which is a little disconcerting but is kind of the norm, while our body is adjusting to a new dose of thyroid hormone. Be gentle. ” title=”Wink” />
in reply to: newby and questions about methimazole #1066079For supplements, there are two important things to remember ~ first, do try to keep track and see if they’re actually giving you some benefit. Supplements don’t have to prove what they say, but if it does make you feel better, that’s some kind of proof that at least it gives YOU a benefit. Secondly, make sure your endo and general practitioner know what supplements you are taking. They can interact in ways you wouldn’t expect with other meds you may be taking. Oh, mention it to your pharmacist too. Just find out all you can about it, and make sure all your professionals know everything you’re doing. Then do what gives you a benefit in your healing process. You will get there!
The hair loss has more to do with fluctuating thyroid hormone levels than anything else ~ it’s just not typical for our body to go through such radical shifts in thyroid hormone levels in the "normal world," so our body is programmed to sense that as a major emergency, and it removes resources from "non-essential" parts of our body, like our hair and nails (I know ~ non-essential to whom?? ” title=”Very Happy” />). Fluctuating from abnormal into normal ranges doesn’t make it different to our body ~ still an emergency ~ so until levels stabilize, we can suffer some hair loss. It is typically transient and minor, so in the meantime, the advice we usually give is to make sure you are not "messing with" your hair a great deal (no perms, color, hot appliances, hard brushing), and if you’re looking at a fairly long period of adjustment, just find a nice short haircut you like. Losing short pieces of hair isn’t quite as emotionally devastating. After you stabilize, you can grow your hair long again. In any case, it’ll end, that’s for sure.
in reply to: About to go off meds #1066036We have recently heard that your chance of attaining remission is better if your antibody levels are low ~ typically we don’t need to test antibody levels since they tend to fluctuate with no well-understood pattern, but when you’re initially going off the meds, it turns out that’s a really good time to check them. If the antibody levels are low, you’ll be more likely to achieve and maintain a remission. If they’re high, you may want to stay on the methimazole until they are lower. As I said, no one understands precisely why they fluctuate, so it’d be hard to know exactly when to check, but since I’m sure you want the best chance of success, you may want to ask the doctor to check them now and see what result you get.
A *true* remission is defined as a period longer than one year where your thyroid hormone levels remain normal without any intervention (no ATDs, no replacement hormone), and if you want to believe the statistics, only about 40% of ATD patients achieve remission. There is (as always) some argument as to the population that was tested in order to reach this conclusion, but that’s the best info we have for now. That means 60% of ATD patients will attempt remission and will not reach it, which means that those patients experience another episode of hyperthyroidism within one year of going off the meds.
Remember what it feels like to be hyper? Well, if you start feeling that way again, make sure you have a way to get your labs run. You don’t want to let it get out of hand. A standing order at the lab is the very best way to handle that, but make sure you let your doctor know that you will have some "check" system so they feel comfortable giving you an open order. Perhaps you can tell the doctor that you’ll call to discuss your symptoms before having the labs done, something like that ~ some doctors are VERY hesitant to leave standing orders because patients end up running to the lab every few days, which is expensive, and also not productive.
If you end up going back on ATDs because you fail to reach remission, the odds are even smaller that you’ll reach remission a second time, but we have been told that a longterm, low dose regimen of ATDs should be no problem for most people. Just know that the side effect issues come up again when you start taking them after you’ve stopped for a while ~ the dangerous, rare side effects can still come up for you the second time you take ATDs, even though you’ve had one successful round with them. They usually come up early in the process (the first couple of months), so just keep your head about you and watch for them, if that ends up being your path.
I wish you luck! Come by and let us know how it’s going!
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