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in reply to: Things that inhibit t4 to t3 converstion #1066385
I’m not sure you have to separate it from your ATD dose, but best to separate it from any thyroid hormone replacement. Also, the most important thing is to know that it may cause a fluctuation in your thyroid hormone levels (no matter when you take it), so if you’re just starting to take the pill, or going off it, that’s a signal to monitor your thyroid hormone levels for the next few months and adjust thyroid meds as necessary to keep your hormone levels stable.
in reply to: Graves’ Eye Disease #1066477Sorry, just stepping in quickly to say that when Thyroid Eye Disease rears its head, it is in no way a "thyroid storm." Thyroid storm is a separate condition that comes on due to uncontrolled hyperthyroidism, it is life threatening, and it has ONLY to do with your thyroid. TED symptoms can come on rapidly, but they are not related to the condition of your thyroid. It’s a separate disease process.
MANY people here have had the corrective surgeries associated with TED, so you will surely get lots of responses on that. The good news is that a majority of patients never need the surgery, as their eyes improve somewhat at the end of the disease process, removing the need for surgery. While your disease is active, see an ophthalmologist (not an optometrist). They are the real experts in this field.
in reply to: Eye Floaters #1066293First, the best person to talk to about your potential thyroid eye disease is an ophthalmologist, not an optometrist. We had several very good stories about the difference during the conference in October, but I won’t go into them here ~ the real authority on anything that may occur due to TED is an ophthalmologist.
I have had floaters since I was a child, because my myopia is so severe. I have not seen anything connecting floaters to TED since I’ve been diagnosed, and that’s more than 10 years now. I suppose there’s a chance that swelling in the orbits can either make the floaters more pronounced, or put them in the right place to be seen more frequently, so I’m interested to hear what you find out.
Ironically, optometrists MAY know this part of the equation, but I don’t know for sure. If you really have symptoms of TED, you should find an ophthalmologist. We typically recommend those affiliates with ASOPRS (http://www.asoprs.org) because they have received additional training in the treatments available to patients with TED, which have been rapidly developing in the past few years. You really should be talking with the experts on this one.
in reply to: HypEr vs. HypO #1066425I forgot to address your eyes being open as you sleep ~ you need to go see an ophthalmologist ASAP about this, but in the meantime please look up some posts about how to fashion a mask to protect your eyes at night. The fact that your eyelids are not closing as you sleep may be due to TED (Thyroid Eye Disease), which is a separate condition that can come along with Graves’ thyroid disease, in which the antibodies (not sure if they’re exactly the same or slightly different than the thyroid antibodies) attack the tissues behind the eyes and cause them to swell, which pushes the eye forward. It has a defined disease cycle ~ comes on, gets worse and causes frequent changes in your eye bulging and/or alignments, which can lead to double vision, then it stays the same for a while, then it gets a little better, then it stops completely. A lot of people have their eyes return near their normal point, but some people have issues remaining at that point that can be corrected with surgery. If your eyes aren’t closing at night, there are several issues that come up, because you can hurt your eyes if they’re not protected, and you can scar the corneas. TED won’t typically risk your sight (unless the pressure gets so bad that it compresses the optic nerve), but damage to your cornea CAN take your sight, so you must protect your eyes. Artificial tears, used liberally through the day, can do some good stuff, but at night you should be using a thicker gel substance, AND covering your eyes with something that’s safe, to protect the corneas from your sheets and blankets and pillows.
in reply to: HypEr vs. HypO #1066424Hi Bonnie,
The bottom line with Graves’ is that you need to choose some form of treatment, and you need to achieve normal, STABLE, thyroid hormone levels before your body will even begin to heal from the hyperthyroidism. It can be hard to know exactly how long you’ve been hyperthyroid, but in the end we didn’t catch it overnight, and we won’t recover overnight.
All three treatment choices have pros and cons, but all three can bring you back to health. What you need to do is research each treatment option and in this way you will ultimately come to a point of decision, where one seems remarkably better to you than another. It seems to me that when patients have had an active role in their choice, they are much more likely to feel well at the end of the process. It could just be that they know what to expect.
ATDs (anti-thyroid drugs) can bring your levels down quickly so that you can think clearly. It is really hard to come to terms with all of this AND learn about it when you’re feeling ill, so our recommendation is usually to use ATDs to bring your levels to a more normal point and allow your body to begin to heal, and your mind to begin to function correctly again. It’s all pretty overwhelming, we know.
Some people have dramatic reactions to ATDs, and there are a couple of rare, very dangerous side effects that can occur, so keep your eye on that stuff (rare, but you should understand them), so if any of that happens to you, you may be forced to make another decision before you feel truly well. That’s why you should learn about it even if you feel you don’t want to use it.
Bottom line, hyperthyroidism cannot be left unchecked, and there are only three proven ways to reduce thyroid hormone levels. ATDs, RAI, or surgery to remove the thyroid. That’s it. Remember please that when you use RAI or thyroidectomy, your thyroid hormone is replaced with synthetic hormone, so it doesn’t leave you hypo forever. You just need to always take, and monitor (at least annually, once you’ve stabilized), your synthetic thyroid hormone. Either way (ATDs to reduce hormone levels, or replacement to elevate hormone levels), you’re MANAGING an imbalance in your body with substances that bring you back into balance.
Not sure what to say about sweets ~ there certainly may be a nutritional imbalance during hyperthyroidism, LOTS of things go out of whack. Keep your attention on these things and ask your doctor about them. We’re all very individual as to the "weird" symptoms we can experience ~ in addition to that, Graves’ may not be the ONLY thing we’re dealing with, so try not to point to it for every thing that goes nuts in your body right now. You could do yourself a disservice by not getting help if it’s not caused by the thyroid issue.
I hope that helps!
in reply to: Things that inhibit t4 to t3 converstion #1066383The link I have heard of between estrogen and thyroid hormone is that, if our levels of estrogen are fluctuating (as they do in puberty, menopause, and during pregnancy), they can "bind" the thyroid hormone in odd ways and ultimately result in a need for adjustment of replacement hormone dose or ATD dose. If our thyroid were working correctly, it would adjust itself through the TSH/T4 feedback loop, but since we have issues, we need to manage it ourselves. I don’t think there’s anything specific within the pill that *causes* thyroid issues, but more likely that it *impacts* thyroid issues.
Just a quick comment ~ when you’re hyperthyroid, your TSH values are suppressed, T4/T3 levels are elevated. No big deal, just want to make sure it doesn’t mislead anyone coming in as a new reader.
It’s really interesting that your GD symptoms began shortly after you quit smoking ~ my experience was similar, I quit in May 1997 and became symptomatic in November of that year. I’ve been to lots of conferences and never seen anything to say the two are connected, but I do think it’s interesting. Looking back, I believe there were times when I may have had minor symptoms, but nothing that caused me to see the doctor until 1997.
This is a very complex disease, and recovering is equally complex, so I would just urge you to find out all you can, and also to go easy on yourself while you go through the healing process. The whole thing isn’t "solved" when your thyroid hormone levels are normal. We have some healing to do even after we reach normal levels and remain stable. Still, you can anticipate a return to health ~ all of our treatment options are capable of bringing a successful result.
You can do searches of the BB for topics of interest to you, and please always feel free to drop in with any questions you have. We’re here to help!
in reply to: strabismus surgery #1066401TED patients usually need strabismus surgery because the scarred muscle tissue remains larger than it should naturally be, which makes the muscles pull incorrectly and so one eye typically either moves slower than the other eye, or simply can’t make the full range of motion to get to certain points of view. I haven’t needed to have it, but people I’ve spoken to have been pleased with the results. There are different ways to correct the mis-alignment, and it is very individual, depending on exactly what’s happening with your eyes. I don’t recall each and every one, off the top of my head. I understand that the progression of surgeries, in order to end up with the best possible result, is (1) orbital decompression, if necessary, (2) strabismus, and then finally (3) eyelids.
in reply to: Afraid of RAI #1066430It’s true that you need to stop taking ATDs prior to RAI, because they can limit the absorption of iodine into the thyroid, and of course if you’re taking iodine for this specific purpose, you wouldn’t want the absorption hindered in any way. If you’ve been somewhat regulated on ATDs prior to stopping them for RAI, it is less likely that thyroid hormone levels will spike dramatically in their absence, but it’s always something to watch for ~ thyroid storm can be extremely dangerous, and even a remote chance is important to know about.
They are, however, VERY rare. Know the symptoms well, go over it with your doctor, watch for the symptoms and react appropriately (go to the ER) if you experience symptoms the doctor has identified for you as those that could signal a possible storm.
in reply to: Prism glasses #1066392These can be really wonderful for relieving double vision, which is SO disturbing. I just wanted to make a comment that they can be difficult to use for people who are new to the eye disease, because typically their eyes are changing frequently, so it can be a frustrating exercise to try and keep the prisms in exactly the right place. There are stick-on versions that can at least be removed if they no longer match your particular mis-alignment, but again, if things change almost daily, you can end up just chasing the sweet spot. For those particular people, it can be simpler to use eye patches when you need to, switching eyes every so often to ensure that one eye doesn’t become weak from lack of use.
in reply to: Things that inhibit t4 to t3 converstion #1066377I have never seen any list like this defining items that inhibit T4 to T3 conversion and, truthfully, I wonder about it. It stands to reason that if these substances inhibited T4 to T3 conversion, it would be so for 100% of the population (since we all do that, thyroid or not, Graves’ or not), and literally every person I know would be suffering from functional hypothyroidism as a result.
in reply to: Graves’ Eye Disease #1066469One thing to remember about steroids and radiation ~ they are temporary fixes. If you are in the active phase of TED, they will help only so long as you are using them. The radiation does take some time to show its full effect, but if you do not continue treatments, the swelling is likely to return. Another thing to remember is that steroids and radiation have not been proven to have any effect if you have moved into the cold phase, where no active changes are occurring.
I don’t think there’s much chance that decompression surgery could make it worse. It’s pretty common for us to minimize our issues ~ half in, half out, that’s not normal, and I’m sure it creates other complications for you. For the most part, while decompression SOUNDS really drastic, there are different ways they can do it, and they have come up with some really interesting variations on the theme (removing less bone, removing only fatty tissue from behind the eye, things like that), so I definitely think you should explore your possibilities. Talk frankly with your doctor about ALL of your concerns.
in reply to: Scared and Frustrated #1066626ALL of our treatment choices can return us to health. Any choice we make will be second-guessed by those around us, but we’re the ones who have to live with it, so we get to make the choice for ourselves. I’m glad you feel good about your decision!
in reply to: Graves eye disease and decompression surgery #1066449I wanted to say welcome ~ I apologize that I don’t know the answer to your question, but we have several facilitators who can probably give you some assistance. I just approved the message so the post can be seen by everyone, so an answer will hopefully be forthcoming.
It is NOT typical for the eye disease to recur, in terms of additional swelling, so I hope that provides some relief for you. He’s early on in the healing process, and I’m not really certain of the additional complications brought on by the second condition. If you’re VERY concerned, please feel free to contact the doctor in order to get an answer for all of your questions. I’m sure you both want the healing to be as quick as possible.
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