[Ski]

in reply to: Low Light and Balance #1066183

There is another autoimmune disease that gives a patient vertigo ~ you may want to be tested for that. Once we have one autoimmune disease, we have a slightly higher likelihood of ending up with another.

[Ski]

in reply to: the long haul #1066219

TSH can definitely lag ~ it operates in response to a "running average" of your thyroid hormone level over several weeks, so as you move forward in the process, it catches up. Typically our thyroid hormone levels don’t fluctuate so dramatically, so TSH is very reliable when you’ve been stable, but it can take a while to catch up when we’re in active treatment.

[Ski]

in reply to: OD surgery date set ! yee haw! #1066226

OD is more commonly used for repair, in the cold phase, than for optic nerve compression in the hot phase ~ just so you know it’s not all that rare, and it is absolutely NOT cosmetic. I know it feels as if it’s vanity driving the decision, but there are so many other considerations involved, not the least of which is simply the safety of the cornea. Our eyes should not be so exposed.

And if what you really, truly need is OD (for proptosis), fixing the lid is bound to be a disappointment ~ plus it could make it more difficult to do the right thing later. Any issues created by the OD can easily be solved with strabismus surgery afterward, but the surgeons are getting more and more experience with this, so the risks of additional difficulty are definitely minimized.

[Ski]

in reply to: Eye Floaters #1066301

Please let us know what your doctors have to say about this. I’d be interested to hear.

As I said before, I’ve had floaters pretty much forever (LONG before Graves’ diagnosis), my doctors have said it’s due to my nearsightedness, and it’s not a dangerous development, they don’t infringe upon my ability to see. I haven’t necessarily noticed more since GD, but who’s to say ~ I’m so used to them, I kind of look "through" them and it doesn’t worry me. Sometimes when I need to get to sleep, I’ll try to "follow" them. My version of counting sheep. ” title=”Very Happy” />

If any of your doctors indicate there IS conclusively a connection to GD, I’d be interested to hear the details, for future reference.

[Ski]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067496

Just a quick comment on this:

From my understanding your eyes can changed after RAI because for several months your body is adjusting to not having a thyroid and it is still producing TSH T3 and T4. Your body tries to send it to your thyroid but thats a no go after RAI so it goes to the next closet part of your body that has similar traits which is your eyes and your knees I heard. So your eyes get wacky and you can have joint problems. This can last for 2 years or so. That is why your eyes get pushed out from this "fat " that has been put there and has attached itself to nerves and blood vessles.

First ~ if we have no thyroid, we are NOT producing T4. The thyroid doesn’t "receive" thyroid hormone, it produces, stores and releases it, so once the thyroid is gone, there is none to be had until we start taking replacement hormone. The pituitary always produces TSH, that’s how we can regulate our dose of thyroid hormone replacement.

If it were true that the body were adjusting to "not having a thyroid," the same phenomenon would occur after thyroidectomy, and it does not. The best theory is that escalated TED symptoms following RAI has something to do with escalating antibody activity due to the action of RAI. TED is a separate autoimmune disease in which antibodies attack the fat and/or muscle tissue behind the eyes and causes it to swell. The antibodies create new cells between the muscle fibers or within the fat, and the resultant swelling creates a condition where the eyes have nowhere to go but forward, since they sit in a cone-shaped cavity of bone.

Hope that helps a little ~ just had to clarify.

[Ski]

in reply to: Retracted eye lid #1066203

The eye issue is not just a symptom of Graves’ thyroid disease, it is a symptom of Thyroid Eye Disease, which is a separate condition but related very closely to Graves’. Treating your thyroid will not affect the condition of your eye ~ in fact, for some, they find that RAI (the actual treatment, not the uptake scan you speak of) can worsen the symptoms temporarily, so it’s a good idea to discuss these possibilities with your doctor as you proceed to a decision on how to treat your hyperthyroidism. There are two other options, besides RAI. There are medications (anti-thyroid drugs, we call them ATDs), or there is surgical removal of the thyroid. All three treatment options are valid, and can return us to health. It’s a decision you need to make for yourself.

TED is treated/managed by an ophthalmologist, not an optometrist or optician ~ we recommend ophthalmologists that are affiliated with ASOPRS (http://www.asoprs.org), because they have had additional, specific training to deal with TED patients. In most cases, TED is a "wait and see" thing until you reach the "cold phase" (search this forum for a TON of info on just this topic), but it’s best to connect with a physician ASAP.

Not sure what to say about your pain ~ could be related to a goiter, could be something else. Best to get it checked out.

[Ski]

in reply to: the long haul #1066210

Sure glad you found us, Antony. ” title=”Wink” />

We all understand the frustration ~ I find that mostly, we’re the absolute definition of those who do all for everyone, and it’s really difficult not to be able to "fix it" quickly so we can get back to that.

Hang in, you WILL get there!

[Ski]

in reply to: Eye Floaters #1066298

Just FYI ~ I’ve continued to wear my contacts throughout my disease and treatment process. I had a brief period after RAI when my eyes were more gritty, but nothing severe, and that was over in a few months. Other than that, I’ve had a little TINY bit of bulging (watch out when I’m feeling stressed), and most of that has disappeared over time. Oddly, it’s just in the past few years that my eyes really dropped back into my head so that they look much more normal (I’ve had GD since 1998, never had severe TED symptoms).

My contact lenses haven’t been a problem at all. I do wear soft lenses, I don’t believe I could ever go back to gas permeables, though I wore them for a long time prior to GD. I can’t wear the lenses quite as long as I used to, comfortably, but a good 10-hour day covers most everything I do, and I don’t even use a lot of artificial tears. Just sometimes when I’m working under flourescent lights on the computer with forced air ventilation (like at the GDF conferences, ha ha). ” title=”Very Happy” />

If you REALLY want to wear your contacts again, I’d get a trial pair and see how you do with them. If your doctor is "presuming" something "might" happen, well, be the guinea pig for him, rather than bowing to the presumption. If you’re interested, that is. I understand the fear of triggering something ~ I keep refusing Lasix surgery for that very reason ~ so of course the decision is yours. I just wanted to pass on my experience.

[Ski]

in reply to: TED surgery complications #1066252

At least know this: IT DOES END. Definitely. You’ll get there, it’s a slog in the meantime, but you WILL get there.

The plugs in your tear ducts can help a lot, I know a lot of people who have been thrilled with the results.

I wish you well, and I’ll pray for peace and comfort for you!

[Ski]

in reply to: TED surgery complications #1066250

The doctors are the best sources to say what may have happened that now keeps you from closing your eye ~ each case of TED is SO individual, they need to know absolutely everything before they can even surmise what may have happened.

I’ve heard from others that if they get a prescription from their ophthalmologist for eye drops and gel, they can then buy them from the pharmacy at their insurance co-pay rates. You may want to look into that, since it is absolutely essential you use them, and a prescription for a sufficient amount of the drops and gel could keep your costs down. In the alternative, keep track of the costs and claim them on your taxes, it’s a long shot but it may be helpful.

[Ski]

in reply to: Understanding Grave’s Disease #1066243

You could well have continued symptoms because of the length of time that your body was under "attack" by thyroid hormone. You may also be within the normal RANGE of thyroid hormone levels, but you may not have found your normal POINT within the normal range. Both of these things could be contributing to your continued symptoms.

The healing will continue as long as your levels are normal, and relatively stable. Some parts of your body may never return completely to normal, others may eventually get there. It’s impossible for us to say with certainty what your outcome will be exactly. You may want to check in with a physical therapist, at least to evaluate your muscle strength, and develop an exercise plan that is sensible and will help you get your body back into condition. Some people come out of hyperthyroidism at only a fraction of the strength they should have, and it’s easy to overdo when that’s the case.

As for finding your normal POINT within the thyroid hormone range ~ you need an endocrinologist who will work with you to find that. If you keep a symptom diary, that can help your doctor function as a "team member" in the process. We used to have one as a bulletin, not sure if we still do, but basically keep a daily diary of your symptoms in some kind of spreadsheet format. Note their severity and frequency, and in your case I would also keep a diet diary, with the foods you eat and the exercise you get. That should probably be separate. Your doctor should be willing to adjust your thyroid hormone replacement by small bits to see how your body reacts, based on what you see in the symptom diary. The end result is that you find YOUR normal, forever, so it’s worth the time spent, but please know that it WILL take time. Everything Graves’ requires patience. When you change your thyroid hormone replacement dose, you need to wait at least six weeks before you have blood drawn again, so that your body will have had full opportunity to adjust to the dose and your TSH levels will accurately reflect your body’s reaction. During that time you will feel a little up, a little down, and after a few weeks go by you typically level out (even if it’s not "perfect").

I’m so glad you finally got a correct diagnosis, and you are well on the way to healing. Be kind to yourself. Your body has gone through a severe assault. You will need a LOT of time to heal.

[Ski]

in reply to: TED surgery complications #1066246

It sounds like your surgery may have stimulated the antibodies at the root of TED ~ if you weren’t in the established "cold phase," then there is a risk of surgery prompting a new level of activity from the antibodies, but there are also rare cases where patients suffer more than one "hot phase" during their experience with TED, so that’s possible too. Bottom line, if someone can fix it, be grateful they can. It’s true, the usual course of surgical procedures is supposed to be decompression first, strabismus (muscle) second, lids last, but apparently no one knew you would need decompression, so here you are. This is exactly why they recommend that the surgeries are done in that particular order, because once you’ve changed something surgically, you’ll have restrictions if other things happen and you need to change it. Still, as I said, if someone can fix it, be grateful they can do it, and good luck with it!

[Ski]

in reply to: TED-Second Radiation ? #1066264

The osteoporosis/bone loss in your jaw may be due to the initial hyperthyroidism you experienced ~ as far as I know, there’s nothing thyroid-related that you could do to "solve" that at this point. The best thing to do is find a bone expert to figure out your overall bone density and the steps you can take to reclaim or rebuild bone.

As for the effect of additional doses of radiation ~ that’s something to discuss with the doctor. Radiation exposure is a cumulative thing, over a lifetime, and many factors can play into your decision to continue using radiation to relieve your symptoms. At this year’s conference, one of the doctors suggested that a combination of oral steroids and radiation treatments for the eyes can limit how much you need of either, thus limiting the exposure issues that come along with radiation and the side effects that come along with steroids. It’s a good time for that discussion with your ophthalmologist.

Either way, steroids and radiation are only temporary fixes, to get you through until you’ve reached the cold phase.

[Ski]

in reply to: Post RAI -In Range TSH – Still Feel Bad? #1066283

Remember that reaching normal levels, and feeling normal, can be separated by a VERY long time, months, even. We didn’t get sick overnight, and we don’t get well overnight. Your body is still healing at this point, and as a matter of fact, it is not even capable of healing until your levels are normal, and stable, so now is the time you should look for small improvements all the time. It’s not a "poof it’s gone" kind of thing. You’re walking a long path. Each step in the right direction is something to celebrate.

This is also a perfect time to start a symptom diary, because this is the point at which you dial in YOUR normal, rather than aim for any old normal, just within the normal range. If you have empirical data to show your doctor (such as, five out of the last seven days I slept for 11 hours at night and still needed a nap during the day), it’s much more persuasive than "I’m always tired." Keep the diary daily, "rate" your symptoms, give as many specifics as you’re able, and when you have them, enter your lab results as well. In this way, you and your doctor can work together to figure out exactly where you feel best.

[Ski]

in reply to: Newby #1066369

You do need to stop taking the ATDs in order to ensure that your body will take in the RAI (ATDs inhibit iodine absorption), and it takes a while for them to flush out of your system. Ask the doctor for the rationale for an 8 week wait ~ we find that many doctors have differing opinions, and it would be helpful for you to know your own doctor’s reasoning.

[Author]

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