[Ski]

in reply to: rai and BB #1068124

Beta blockers shouldn’t affect RAI, they don’t actually do anything for our thyroid, they just help cover up the symptoms and protect our heart. ATDs might affect the RAI, but you’re past that now, so best to cross your fingers and hope for the best. It takes a while for RAI to take effect ~ as a matter of fact, up to six weeks just for your body to flush out the excess thyroid hormone that was in the bloodstream on the day of RAI ~ so late October shouldn’t be too far away for a follow up.

If you don’t like your doctor, you have some time to find a new one. ” title=”Very Happy” />

[Ski]

in reply to: I could use some help… #1068129

Mamabear always gives such good info! I just wanted to add a couple of things. First, pictures with sunglasses are still good pictures ~ and some sunglasses are tinted less than others, if that makes you feel better. Just be outdoors and no one will question why you’ve got sunglasses on. Second, you will ALWAYS look better if you’re smiling, it’s a fact! So smile big and don’t be shy ~ unless of course you’re doing the kissing pictures mamabear suggested, in which case smiling would be out of place. ” title=”Very Happy” />

And just to address the OVERALL emotional impact of this ~ you are NOT alone. The eye doctors tell us that this is harder emotionally than almost any other condition they can name. Our eyes are so precious, in so many ways, and feeling as if we don’t look like "ourselves" can cause some deep upset. Forgive yourself for feeling that, because it’s really not something you can help.

Your eyes, once they settle down, CAN be corrected, so take heart. Once you are diagnosed to be in the cold phase (it’s diagnosed in retrospect, after at least six months have passed with no changes), surgical corrections can be explored, and they are getting better and better at accomplishing miracles. In any event, you are definitely not stuck with the way you look forever. Promise.

[Ski]

in reply to: New Research in Graves Disease #1068156

Just a quick clarification: these are just for Graves’ EYE Disease, or TED.

[Ski]

in reply to: Shameless Plug for the Conference #1068171

I’ll take that on ~ everyone who is flying in, send me your info by private message. I’ll gather all the info and try to coordinate groups to share a ride. Send me also regular e-mail addresses I can use to contact you, and cell phone numbers so you can reach each other at the last minute ~ for each group of three, we’ll probably need to have at least one person who can be the main contact in case something happens (flight delays, etc.). They may require a credit card to reserve, so we’d have to coordinate that separately for each group as well.

Nancy’s guess is perfect ~ send me
Name
Airline
Flight number
arriving from (city)
arrival date
time of arrival
e-mail address
cell phone #

[Ski]

in reply to: Treatment Suggestion: Rad. Iodine vs. Anti Thyroid Drugs #1068218

Hi Trey,

You probably will have found this info already, if you’ve been wandering around the bulletin board, but I just wanted you to know that the theory that we can take "just enough" RAI to "control" the thyroid hormone levels has been tried and has consistently failed. The reason is that any surviving thyroid tissue has the potential to react to the antibodies and cause hyperthyroidism again, given the proper "request" from the antibodies. The antibodies mimic TSH and trick the thyroid into believing the body needs more, more, more thyroid hormone, so the thyroid cells work as hard as they possibly can to follow those instructions, and ultimately that results in hyperthyroidism again. In addition, a dose of RAI insufficient to destroy the entire thyroid has the potential to damage, but not destroy, thyroid tissue, which can be dangerous in and of itself. Damaged cells behave irrationally, so it can be tough to manage thyroid hormone levels when *some* cells remain active.

I had too little RAI on my first dose (10 years ago ~ thought it’d be my ONLY dose, but no), because the dosing doctor still felt it was possible to do "just enough." Instead, I ended up with my endo recommending ATDs in the same protocol as if I’d chosen them in the first place (1-2 years to attempt remission), which was what I was trying to avoid by doing RAI. Ultimately I did a second RAI that did the full destruction, but I suffered for a couple of YEARS trying to "wait it out, let the thyroid die on its own," when I could’ve been healthy instead for most of that time.

If you’re going to try the medication, you can "undo" that decision, so that’s typically what we recommend, at least to start. Some people react badly to the medication, or have a tough time maintaining normal thyroid hormone levels, and so eventually those people must choose another treatment method. Some just decide they don’t like how they feel, or don’t want to deal with the process required to make ATD treatment work for them. Some have a VERY easy time of it on ATDs and continue taking them very long term. Some attain remission and can stop worrying for a while ~ of course, that’s after at least 1-2 years of taking the ATDs, but remission is remission. If you try ATDs and decide they’re not for you, the best choice is to get rid of the thyroid completely, whether it’s by surgical removal or RAI destruction.

Remember that you’ll need at least six weeks after you begin ANY treatment in order to start feeling much better, because it takes our bloodstream that long to flush out excess thyroid hormone. Patience is required in all things Graves’, that’s a fact.

We’re so glad you found us! Let us know how it’s going, and feel free to ask any questions you may have. We’re here to help.

[Ski]

in reply to: went to new endo #1068237

I’m glad you found a different doctor ~ it’s sad that so many doctors feel they know everything, and can make our treatment choices without even involving us. RAI may be ONE quick way to get your thyroid hormone levels back in check, but all three treatment choices are valid and effective (technically, surgery might be quicker), and it’s not your doctor’s body, is it? ALL doctors should allow their patients the freedom of choice. I wish they’d say things more like "IN MY OPINION, RAI is the quickest way to get back to normal thyroid hormone levels, but there are two other choices ~ here’s some paperwork on all three options, let me know how you’d like to proceed." Wouldn’t that be nice???

Living in a fantasy-world, I am. ” title=”Very Happy” />

[Ski]

in reply to: RAI #1068231

Well, one day is certainly too early to be feeling better ~ unfortunately, one week, or even one month, is too early to be feeling completely better. The excess thyroid hormone that was causing you such trouble before the RAI takes up to six weeks just to flush out of your bloodstream, so you may feel slight improvements between now and then, but definitely not "all better." Some people do experience tenderness in their neck, and that’s usually responsive to an over-the-counter pain reliever, whichever you prefer. The pain shouldn’t last long.

Now that you’ve had RAI, it’s not possible to go back and "undo it," so try to remember that it WILL return you to health, but (like all treatment choices for Graves’) it takes time.

There may be a point, about two weeks out, when you feel even more hyper, for a few days. It’s wise to get in touch with your doctor ahead of that and talk about it ~ some patients get through it with slightly higher doses of beta blockers, but you need to discuss the process, how and when the doctor would advise doing that. It happens because the thyroid cells that are being destroyed have been storing thyroid hormone, so that stored hormone gets "dumped" into our bloodstream all at once and can cause this effect. Since more cells are dying all the time, it’s typically just a few days’ worth of symptoms, then there are too few cells to cause the hyper feelings any more.

EVERYTHING about Graves’ takes time. It took time for you to become ill. It took time for the symptoms to build up to the point that you went to see a doctor. It took time before you got the right diagnosis, and it took more time before you were treated. Now it’s going to take time to go back down that road, it doesn’t happen overnight. In addition to that, some of the damage that is done while we are hyper takes even longer to resolve, because it requires us to get back to normal thyroid hormone levels *and stay there* before the healing can begin. That is definitely months away, for you. We all hated it, believe me, but it’s just something you have to go through to get well. I guarantee it’s worth it. You WILL get well. Keep visiting and asking questions, we’ll get you through!

[Ski]

in reply to: So, why can’t I start replacement thyroid? #1068252

Lacie this sounds really weird to me ~ it takes a while for your body even to register the replacement hormone, so you need to start getting your T4 levels back up to avoid a long period of feeling horrible and gaining weight.

I find it tough to understand why a doctor would think you have any chance of remaining euthyroid, when your T4 and T3 levels are in the basement already. You took RAI to destroy your thyroid, there shouldn’t be anything remaining at the end of this road (if it was done right), and delaying your replacement hormone CAN be dangerous. Long periods of hypothyroidism actually contribute to hardening of the arteries.

If it were me, I would call your doctor back and get at least a prescription for the lowest possible dose, just so you can begin on the road. Once you start, you’ll still have to rise only one dose level at a time, as well as waiting six weeks between blood draws and lab work ~ so you can see how long a road you have ahead of you, and how much longer it may be if you wait to start.

[Ski]

in reply to: Graves Eye Disease #1075504

Since you’re concerned about your ability to see a doctor, I would first suggest getting preservative-free artificial tears (not "get-the-red-out" drops), and use them whenever you notice the "blurring." Dry eyes are a symptom of Graves’ Disease, separate from TED symptoms, so it’s always good to keep the moisture level up. Dry eyes can make your vision poor, so that you think you need glasses, but just having the proper moisture might solve everything.

About the puffy eyes, tired eyes ~ I don’t remember exactly where you are in your treatment, is it possible you’ve gone hypo? That can be a symptom of hypo.

If you definitely want to see a doctor about the potential of having TED, you should get a referral to an ophthalmologist ~ that is medical care, not vision care, and you should be covered for eye diseases.

[Ski]

in reply to: 6 weeks post RAI and all better?!? #1068405

It does my heart good to know you’re doing so much better, Lacie! Glad you can get back to running, that’s so important for your own emotional health, to know you can do what you WANT. Just a quick note though ~ what you think is coming back as "fat" may well be muscle tissue. It’s just that when the tissue returns, it’s not strong, it’s just like what’s on a baby’s body. LOOKS fatty, but isn’t. Go easy on areas you don’t routinely work out, because that "baby muscle" is extremely fragile. You need to work it up slowly.

[Ski]

in reply to: overly paranoid?? #1068268

No harm in having your levels tested, especially with those symptoms. The test is relatively cheap, and if it’s true that you have Graves’, treatment sooner than later could improve your outcome a lot. If it’s NOT Graves’, I’d keep pursuing it to find out what it really IS, because those are not symptoms you should be experiencing. Someone needs to focus on the root cause for you.

[Ski]

in reply to: Finding Opthamologist who works with TED #1068273

Opticians are not the right doctor, you need an ophthalmologist. The best ones are those affiliated with the ASOPRS, the American Society of Ophthalmic Plastic and Reconstructive Surgery ~ website http://www.asoprs.org. These are ophthalmologists with special training in the treatment of TED. If none of them are affiliated with your insurance, then you may want to ask your endocrinologist or even your internal med doctor for a referral to another ophthalmologist. Opticians just deal with prescription lenses, they don’t "do" eye disease.

[Ski]

in reply to: 1 Day After RAI #1068288

Some patients do take methimazole after the RAI and before they go hypo, so that’s definitely an option if it’s worked for you in the past. Once you’ve taken the RAI and the first two days have passed, the methimazole won’t prevent the RAI from working any more. If you were taking it at the same time as the RAI (literally, same day), you could compromise the effectiveness of the RAI, but that’s not an issue now.

[Ski]

in reply to: New to Forum and Recently Diagnosed #1068302

Hi Jaz,

Well, I hope it helps to know that I’ve heard these words from nearly every GD patient I know! ” title=”Very Happy” /> I’m not sure if it contributes to ending up with Graves’, but we all seem to be the "go to," the "yes person," the one in control of everything, so one of our first and biggest lessons is how to manage that while we don’t feel well.

First things first ~ the symptoms you’re experiencing now will likely be transient. It shouldn’t go on for much longer, but that certainly doesn’t mean they’ll stop in the next few hours, so you still need some help to get through, I understand.

There is a LOT going on in your body right now, and it’s hard to manage that, because it’s tough to know exactly where you’ll be at any given point in the day. Sometimes up, sometimes down. We know, we’ve definitely been there! ” title=”Wink” />

There are a couple of things you can do right away. First, pare down your day so that you are only committed to doing THE MOST IMPORTANT things. Take projects that can be put off, and put them off, just for now. Put them off or give them to someone else to handle. When you’re not at work, do only those things that give you personal satisfaction, that ADD to your sense of well-being. Dump everything that sucks your energy away and gives nothing back. (This part might be permanent, after you see how good it feels!) Save your energy during the day so you are able to work at some rational pace. You may want to discuss the fact that you are currently recovering from a hyperthyroid condition ~ no one will understand, I’m sure, but you can at least broach the subject that you are not feeling 100% right now. The recovery is typically slow going, so it’s best to give a heads up as soon as you can.

There is a period of time after RAI when we can feel "extra hyper" ~ a few days’ worth ~ but I’m not sure whether that’s what you’re going through, just because it usually hits around two weeks after RAI, not just a few days. Still, it’s POSSIBLE that’s what’s happening with you right now. What happens is that the thyroid cells "dump" all the thyroid hormone they’ve been storing, when they are fully destroyed. This is a self-limiting event, because eventually ALL the thyroid cells will be gone and all the stored hormone will also be gone, but it can take a few days before you feel normal again. After that, you should be steadily feeling better. It’s "better by baby steps," don’t get me wrong, but try to look for small ways in which you feel better today than you did yesterday, and that points your mind in the right direction ~ toward gratitude, toward noticing how things are better, rather than grieving for the way things were before. That ship has sailed.

For small ways to get through a work day ~ get yourself a notepad and pencil, that was my favorite weapon. My mind couldn’t hold onto things, couldn’t remember everything I needed to be on top of, so I had to "resort" to writing on my calendar, putting reminders on the calendar in my cell phone and my computer, keeping post-it notes around ~ all kinds of mechanisms to make sure I stayed on top of things that used to be effortless. Again, try to just be grateful that you have these means to help you through this time. You’ll come through it, but for now it’ll be a little tougher.

Welcome to the club. ” title=”Very Happy” /> Glad you found us! Ask any questions you may have, we’ll try to get the best possible answers for you.

[Ski]

in reply to: Question re: hot spells and sweating #1068309

It’s hard to say where these could be coming from ~ you’re so early on in the process, it’s quite possible that your hot spells may continue to some degree (far less than before, certainly) until you are confirmed hypo. Another possibility is that you are perimenopausal (not sure of your age, my apologies if that’s WAY off), and the changes in your thyroid hormone have thrown a proverbial wrench into THAT process, causing more flashes than usual.

I’m not sure anyone will be able to tell you exactly, right this minute. You could ask your endo and see if they have an opinion. If they don’t, go to your ob/gyn and see what they say.

As for travelling, not sure what to say about that either. Perhaps your doctor can send you with a filled prescription for a "beginner’s dose" of thyroid hormone replacement, with instructions NOT to take it unless and until you have been instructed to do so. That removes the question of "how do I get the replacement hormone while I’m out of town" but of course you still need someone to order and evaluate your lab tests, to determine when you have gone hypo and need to begin taking replacement. You’d be wise to contact a lab local to where you intend to travel and see what they would need in terms of authority ~ perhaps you can even take a lab slip (or five) from your own doctor, then use them as needed.

[Author]

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