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in reply to: Eye Disease #1069722
It can depend on exactly what’s going on ~ sometimes it’s fluid, sometimes it’s fat. Sometimes being hypothyroid leads to accumulation of fluids, or TED can result in fatty tissue being pushed forward into the tissues surrounding the eyes. I think an ophthalmologist can probably sort it out after knowing your specific issues.
in reply to: And the verdict is. Drum roll please…… #1069512It’s really hard to say ~ your doctor probably has the best perspective and history to decide the dose. Anything’s a start!
” title=”Very Happy” />in reply to: Unemployed, no insurance – meds running low… #1069490You can easily go get your Synthroid at rack rate ~ it’s VERY inexpensive. Do check your local Costco, they are required to provide medications (at lower, Costco costs) to anyone who comes in, they are not allowed to require membership for that particular function. The only thing you should NOT do is change brand ~ do not go to generic or another brand from Synthroid, do not go to Synthroid from generic or any other brand. Our bodies metabolize these different brands in unpredictable ways (who knows why, but it’s true), and the same dose on one type does NOT always equal the effective dose of another, necessarily, in each of us. The last thing you need to do is trigger another period of imbalance.
But you must keep taking them if your body no longer produces thyroid hormone. Typically larger amounts (100 pills) are cheaper per pill, because they can take an unopened bottle, label it with your name and hand it over. Do your research to make sure you’re getting the best possible deal.
in reply to: And the verdict is. Drum roll please…… #1069510Even if your levels are tough to "dial in," you will put in the time to get them right, I know you will! And at least from this end (from zero, or less than zero!), you will no longer have fluctuations due to antibody activity, so things will be more stable in general. You’re well on the way ~ take heart! For now, it may take a couple of weeks before you feel the real effect of the dose your doctor has chosen ~ in between you may feel a little bit like a seesaw, but getting more and more level all the time. You’ll need to wait at least 3 or 4 weeks to test your levels again ~ typically they say 6 weeks between doses, but right now since you went SO hypo, the doctor may recommend tests a little closer together to make sure you don’t remain SO hypo for long.
And in the meantime ~ continue being good to yourself, you are still in battle with this, and your body is being taxed.
in reply to: My big day! RAI tomorrow #1069598If the "dumping" occurs, it is usually around the two-week mark, for a few days at most.
If you’re still reading hyper after many weeks, it’s possible you just didn’t get enough RAI to stop the thyroid from reacting to the antibodies. As long as any tissue remains active, it can overproduce.
The dosage for RAI is a little science, and a little magic ~ they figure it out by means of several pieces of input, I believe, but one of the more important factors is your uptake percentage, as that determines how much ultimately remains in the thyroid after the first 72 hours. I’m not sure it has anything to do with height/weight, but I never asked that specifically. All I know is that they cannot say that, at your height/weight, with your uptake percentage, and your thyroid hormone levels, the RIGHT dose is "xxx." It’s not that easy.
in reply to: Orbital Decompression DONE! #1071452Just sent you a private message to answer your questions ~ we should take this discussion away from the public board now….
in reply to: Orbital Decompression DONE! #1071450Hi reginab,
You know what, my son is looking into the Academy of the Arts in SF for next fall! San Francisco can be very different from neighborhood to neighborhood, but no matter where you are in the city, I think everything’s pretty safe in the daytime. I get most nervous after night falls, but even then it’s only a very few parts of the City that make me feel that way ~ we go up for evening events quite a lot. For the most part, there are lots of people around, and that can be protective in and of itself. Your daughter should have classmates that will already know quite a bit about the area, so try not to worry (easier said than done, I know).
in reply to: personal question #1069671All my prayers are with you!
” title=”Very Happy” />in reply to: What happened to Diane? #1069700Dianne’s been going through some complex surgeries on her eyes, so moderating is difficult for her right now. She’ll be back, I promise!
” title=”Very Happy” />in reply to: Orbital Decompression DONE! #1071447Once you are ready to consider orbital decompression, you and your doctor will evaluate the seriousness of your remaining condition. It may seem that it’s for cosmetic reasons (and truthfully, the insurance companies will try to deny based on that), but if you need decompression surgery, your doctor just needs to code your procedure correctly. If you are still experiencing chronic dryness due to the proptosis at that time, this is not cosmetic. This is saving your sight.
If you wanted decompression now, while you’re still in the hot phase, your vision would need to be in danger, because otherwise it’s not worth the risk. In addition to that, you wouldn’t be finished with the disease process, so they could deny coverage based on the fact that your condition may improve even without the surgery. After you’re safely in the cold phase, no one can say you have the potential for spontaneous improvement, and the surgery would be your only means of relief.
The lid surgery at the end is sometimes required, sometimes not. It depends on a lot of factors, and that’s why they leave it for last. You only want to do small work to the lids, if you have to do anything. Some patients don’t need the muscle surgery either.
The only diet change that has any impact on thyroid hormone is the low iodine portion, and even that is negligible, but it can help some people ~ the others may make you feel better, but neither sodium intake nor gluten have shown any indication of affecting thyroid hormone levels. If you’re feeling better having that diet, stick with it.
As long as you use preservative-free artificial tears, you can use as many as you need for comfort and vision’s sake. Sometimes that means every 15 minutes. Your comfort is worth it, as is your vision. Keep in mind that the drops you use today will keep you more comfortable tomorrow, so if you are in a situation that’s traditionally difficult (windy, very sunny, or working on the computer) just use them because you know they help, and you’ll find that your overall comfort and vision improve. Dryness can actually reduce your clarity of vision, so just keeping them as moist as possible (without preservatives, that’s VERY important, because those are irritants in and of themselves) will go a long way for you.
in reply to: Anxiety/Panic Thread….. #1069944If her levels aren’t controlled well with the methimazole, it could definitely lead to constant imbalances. I don’t know whether it could be directly attributed to the actual chemical substance of the medication, but I do know that a patient with antibodies that are very active could have a tough time being successfully managed with methimazole. It’s obviously impossible for you to step between her and her doctor to find out how that process is going, especially in the state your relationship is in, so I’m not sure you will be able to get confirmation, or relief, from knowing this. I know a lot of Graves’ patients who have finally come out the other side to health and found themselves utterly horrified at the way they behaved before they were truly well. The symptoms can be so subtle, we just think we’re either (a) crazy, (b) an entirely new person, or (c) always been this way and finally "revealed." Until you get to the other side, it’s tough to see that it’s chemical, and that the genesis of this behavior and attitude is not IN you.
Certainly, the journey to getting Graves’ involves some hereditary connection, but since the actual trigger is not understood yet, she can get away with saying just about anything with regard to how this disease began for her. Arguing that point is probably not going to get you anywhere. You can believe what you believe, she can believe what she believes, and neither can prove anything.
So I wish you luck, but I’m not sure how far you can go to help HER understand this. Try doing something really sentimental and sweet, see if that breaks through the wall. Let us know how it’s going, I’m so sorry you’re in this position.
in reply to: Orbital Decompression DONE! #1071445Hi there,
I know the eye disease is incredibly emotional to deal with ~ doctors say it is one of the most difficult conditions to handle emotionally. Our eyes are integral to our self-image, literally. It’s how people see us, it’s how we see them, it’s important in all of our interactions.
You won’t have to spend the rest of your life looking like this, but you may not be able to correct it quite yet. Let me explain. Thyroid Eye Disease (TED) is what you’re dealing with ~ it’s connected to Graves’ thyroid disease, but they are not the same condition, and they are treated completely separately. You should be seeing an ophthalmologist for TED, an endocrinologist (or internal med doctor) for Graves’.
TED has a rather predictable disease curve. It starts with a "hot phase," where your eyes bulge and recede, seemingly at random, for a period of time. That is followed by a period of relative stability, where nothing changes. After that, there is a short period of improvement, followed by another period with no changes. The initial phase is called the "hot phase," and it is diagnosed by the frequent changes. The final phase is called the "cold phase," and that is where you are able to make surgical corrections to improve your appearance. Surgical corrections attempted during the hot phase can result in a re-excitement of the antibodies that are causing your condition, so they could erase all the benefit of the surgery and reduce your ability to correct the appearance in the cold phase. The whole disease curve can last anywhere from one year to three years (people who smoke cigarettes typically experience a longer disease curve, and worse symptoms). Once you’ve arrived at the cold phase (typically diagnosed in hindsight, after months and months have passed with no changes at all), you can start talking about the surgery you will need to get your eyes closer to where they started. At that point you’re dealing mostly with the remaining scar tissue from the hot phase. If your eyes still bulge uncomfortably or in an unsightly way (in some cases, our eyes return almost to normal and we need no intervention at the end), then the most common solution is decompression surgery. In this surgery, pieces of bone are removed from your eye socket in order to give your eyes room to "settle back" where they belong. Afterwards, you may need to have additional corrections for double vision that may arise, and finally you can have surgery to bring the eyelids to the right position. After decompression, the other surgeries are not very invasive and all together they come with a very reliable history of returning your eyes closer to normal. If you have pictures of yourself before this all started, you should share those with the surgeon who is trying to correct your vision when it’s time. It can be really hard for them to just imagine where your eyes started.
While you’re in the hot phase, some people use steroids or directed radiation (a beam of radiation to the eye socket) to keep the swelling down. These both come with risks, though, so it’s something you and your doctor need to consider carefully. You may think your eyes are bad, but believe me I’ve seen some doozies. Your doctor has that perspective, so try to forgive the doctor for minimizing your condition. They may not recommend steroids or radiation because the benefit may not outweigh the risks, and they may use the phrase "your eyes aren’t that bad." I know it’s hard for you ~ any changes are difficult, TED changes can be really devastating ~ but try to remember there’s a predictable end to this, and there are options for correction when you get there. In the meantime, take good care of your corneas. Damage to the cornea can be permanent, if it gets bad enough. It typically occurs when your eyes get too dry, so stock up on preservative-free artificial tears and use them liberally. If your eyes don’t close all the way at night, look into nighttime gels and perhaps even face masks to keep your eyes moist while you sleep. Raising the head of your bed can at least keep fluids from settling in your tissues at night ~ sleeping on a stack of pillows is okay, but raising the head of your bed removes any risk of you ending up NOT elevated during the night.
And lastly, for your own comfort and emotional well-being, look into lightly tinted glasses for indoors, and darkly tinted glasses for outdoors. It can help your self-esteem to "hide" your eyes most of the time, and it can keep people from focusing on what’s different when they’re speaking with you.
We all wish you luck. I didn’t experience the worst of the eye symptoms, so I never had decompression, and I can’t answer your specific questions about how it was, but you can do a search here for people’s stories, there are a lot. Recently there was someone who posted a video of before/after, I’m sure you’ll find it uplifting.
in reply to: GD vs Hyperthyroidism #1069760This can be an area of confusion. First, most scans will refer to Graves’ results as "toxic multinodular goiter," which basically means the entire thyroid is involved in making thyroid, and QUICK. The scan looks like a picture of a thyroid, all bright, everywhere in the gland.
That is not the same thing as having nodules, which are specific areas of either activity or inactivity. I realize it’s made extra confusing because the word "nodule" appears in both cases.
Graves’ CAN occur along with nodules, though it is rare. They are just typically not the reason behind the hyperthyroidism.
"Hot" nodules, nodules that suck in ALL the iodine you ingest and creating much too much thyroid hormone would indicate that you probably do NOT have Graves’. That kind of nodule can be treated by RAI and you can be left with your normally functioning thyroid, because the iodine is being "hogged" by the nodule, which will then be its undoing when you take RAI. Once that hot nodule is gone, the thyroid typically goes back to acting normal. The scan would look like a big black page, but for one BRIGHT spot.
Cold nodules take in NO iodine and do nothing. Sometimes they are just masses of inactive tissue, sometimes they are malignant tissue. That takes another test to determine conclusively. The scan would look like a scattered set of bright dots, with one big DARK spot.
Does that help?
in reply to: 6years of symptoms finally diagnosed #1070377Hi there,
Your questions sound like they are intended for a group that’s focused on menopause issues ~ you don’t speak of any thyroid issues, are you a Graves’ Disease patient?
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