[Ski]

in reply to: and it begins #1071308

The uptake/scan is usually conclusive for Graves’ ~ between the pattern of uptake in the scan, and the percentage of uptake, Graves’ can be conclusively diagnosed. A Graves’ thyroid will have a consistent pattern of uptake across the thyroid gland, and a high percentage of uptake. Hot nodules will take up ALL the iodine into themselves, so there is one big bright ball of uptake within the thyroid in a defined spot. Cold nodules will take up NO iodine, so they are a big black spot on the uptake. You can also test the bloodstream for Graves’ antibodies, but that isn’t done very often, probably because the uptake/scan is conclusive if the pattern and percentage are very obvious. It’s also possible to have a false negative for Graves’ antibodies, if you test during a "low" period of antibody action.

There is also one more cause of hyperthyroidism, which is transient thyroiditis following a virus, but that typically ends in six weeks or less. If your symptoms have gone on longer than six weeks, you can say that’s not the cause for you. Oh, and one more thing the doctors need to consider ~ some people buy thyroid hormone replacement pills on the black market and take them as a weight loss pill. If only they understood….

A very high percentage of hyperthyroid patients are hyperthyroid due to Graves’.

[Ski]

in reply to: Synthroid -questions…. #1072458

Just a quick note ~ I now understand that, in addition to the Graves’ antibodies that mimic TSH and stimulate the thyroid to produce hormone, Graves’ patients are also known to have antibodies that can suppress TSH. People who have low levels of these antibodies typically do not experience a suppressed TSH level. People who have high levels of these particular antibodies can have an artificially suppressed TSH, so that result is not always reliable all by itself for those patients. There is, apparently, very little testing of these particular antibodies in the medical community. In the end, asking the doctor to make sure they’re testing TSH and T4/T3 will give you a better shot at correct dosing, even if you don’t have specific knowledge about your levels of these particular antibodies. I think anytime you’re having symptoms and suspect an imbalance, it makes sense to try and have all levels tested so the doctor can see the whole picture.

[Ski]

in reply to: and it begins #1071305

TRY to put it out of your mind ~ you’ve come to a decision, and you’ll be further along the road SOON. It sounds like you’ve got a really good attitude, given the circumstances! I know the anxiety is tough, and I know you’re impatient AND lots of your feelings are due to chemical imbalance, so it’s nearly impossible to just "talk yourself out of it." Do your best to celebrate your bf’s birthday. Laugh! That can dissipate all kinds of negativity. ” title=”Very Happy” />

We’ll be thinking of you on Tuesday!

[Ski]

in reply to: GED #1071374

They send you home to wait it out because they’ve seen the problems that can occur by surgically correcting too soon. Until things are stable, there is no way to know if they’re taking the right amount of tissue, plus surgery can stimulate the antibodies to begin yet another attack, which would result in another phase of swelling with no bone left to remove. Then the proptosis would be pretty much lifelong. The natural progression of the disease takes anywhere from 1 year to 3 years, and after it’s all over, many patients have seen improvements naturally. Not "back to normal" improvements, but if surgery were performed prior to this stage, they may either have eyes that sink INTO their head, or they can lack the skin necessary to look right, or another attack could create circumstances that are literally impossible to correct.

The only reason surgery is ever done prior to stabilization is if the optic nerve is in danger, and then (as you know) they do enough to save the optic nerve (and with it, your sight), then you must wait.

I know it’s hard. Many here have been through it. Everyone who has experienced proptosis due to TED is given the same advice. We also know some people who have had surgery too early, and now are paying the price. It can mean many more surgeries, grafts from elsewhere in the body, etc. etc., when just waiting a little while could have made all of the corrections far simpler.

[Ski]

in reply to: ted #1071310

TED and Graves’ Disease are two separate conditions, so you need to separate the two in terms of some of the questions you’re asking. Exercise should be okay as long as your thyroid hormone levels are good ~ antibody levels show the level of attack your thyroid is experiencing, but if the Tapazole is keeping your levels within range, that’s the most important thing. There is no worry about exercising with TED. Drinking, within reason of course, is not precluded due to having Graves’, having TED, or taking Tapazole, as far as I know. If you feel markedly unusual afterward, check with your doctor to see if it’s something you need to limit. It can be different for each of us. Seafood is NOT a bad thing to eat, only seaweed has enough iodine to avoid. Again, though, if you feel unusual after eating it, talk with your doctor. Unless you eat pounds and pounds of seafood at one sitting, it shouldn’t affect you negatively. And that’s only related to your thyroid condition, not TED. No food restrictions for TED. Cigar=smoking, and smokers have a harder time with TED. To be VERY cautious, I would avoid that part, even the second-hand smoke, and even once in a while. I don’t know whether smoking that infrequently could actually have an effect on the TED’s severity or length of time you end up having to deal with it, but the condition is miserable enough that I would recommend an abundance of caution when it comes to things like smoking.

I hope that helps!

[Ski]

in reply to: Any connection #1071313

I’ve never heard anyone refer to that connection, and I don’t think the device could cause Graves’. Autoimmune diseases run in families ~ not necessarily thyroid disease, but more generally autoimmune, so lupus, rheumatoid arthritis, diabetes, psoriasis, or any of 80 autoimmune diseases in your family could indicate your chance of ending up with an autoimmune disease. They have recently found that there is one specific genetic defect in every patient with an autoimmune disease. It is found in people without autoimmune diseases, but 100% of patients with autoimmune diseases have it, so perhaps this is the "genesis." It appears that this piece must be in place for any autoimmune condition to occur.

The conventional wisdom is that Graves’ Disease begins with a genetic likelihood for autoimmune disease, and then something triggers Graves’. The likelihood is that there are several triggers, not just one. Changes in female hormones may contribute somehow ~ onset or recurrence of GD following pregnancy is pretty common ~ so perhaps that’s one way the device may have contributed to your GD, but right now, the overall causes are not well enough understood to come to a conclusion about any one particular thing.

[Ski]

in reply to: Graves #1071350

You should definitely feel better by then, but don’t overbook yourself. The travel itself will be stressful, so make sure you leave yourself room to sit and recover at each step along the way. Enjoy your trip of a lifetime! Let us know how it goes! ” title=”Very Happy” />

[Ski]

in reply to: Finding current research on TED=graves eye disease #1071323

There is a great deal of research going on for TED, I promise you. If studies have not been completed and peer-reviewed, you won’t see any info in the public domain, but there are plenty of brilliant scientific minds focusing on this. There is an eye center in San Diego that has given us presentations at two separate conferences, and believe me, they are 1000% dedicated to finding a way to help TED patients. They are not alone, there are research centers worldwide.

One thing that we need to make absolutely clear is that Graves’ and Thyroid Eye Disease are both autoimmune diseases. We aren’t talking about something caused by a virus or bacteria that we can isolate and destroy. Autoimmune diseases are conditions in which our body has developed antibodies against itself, and these antibodies work side-by-side with the antibodies we know to be beneficial. So turning off all the antibodies is a bad idea. The research must be far more intricate.

In addition to the specific TED research being done, all research on autoimmunity will provide a benefit to GD and TED patients, and there is plenty of that going on now as well. In our high-tech society, I know it’s hard to understand why we have not solved this puzzle yet. But we haven’t. Only recently they have discovered one genetic defect that all autoimmune patients share. People without autoimmune diseases have been found to have this defect as well, but 100% of autoimmune patients have it. Step one. We have no idea how long it will take, but know that it is a passion for many to find success along this path.

I don’t believe we are permitted to distribute conference notes online. For that reason, we facilitators attend and take our own notes, so we can help you based on the information we were given.

At the most recent conference, the final presentation was on the most current science in treating Graves’ and TED, the "beat the curve" kind of science. In other words, they are trying to determine the steps in the disease process ~ what happens first to start the dominoes falling ~ so they can interrupt the process, given the opportunity. This is the research that will be the most helpful to future generations, but they will still face the complication of finding the right point at which to intervene ~ once the disease process has begun, the horse is out of the barn and you have to shift gears and treat the disease instead.

[Ski]

in reply to: untreated graves disease #1071335

Hi Patti,

Untreated hyperthyroidism is extremely dangerous, and there’s no way to know when it will hit a critical point that is life threatening. If he understood the disease and its effects, he wouldn’t be so flippant about it, but helping him understand is really the hardest part. Tell him to think of thyroid hormone as "gasoline" his body uses to work. Every single cell uses thyroid hormone to function. Then tell him that right now, while hyperthyroid, his body is like a car with a brick on the gas pedal. It’s revving WAY too high, and pieces are bound to start flying off. Sure, the engine sounds good, seems like everything’s running, but there’s a nasty whine in the system, and once things begin to break down, there’s no going back. Hyperthyroidism "eats" bone mass and muscle mass (and remember, the heart is a muscle), and it also exploits any other weakness in the body, so unique problems can come up for each individual, depending on personal history. Hyperthyroidism also comes with heart arrhythmias that can get out of control, and extended periods of hyperthyroidism can result in thyroid storm, which is a very fast-moving, life-threatening condition. A few people here have experienced it, and I know they’ll tell you they’d prefer to have missed it. They’re lucky to have survived it.

Here’s the basic mechanism of Graves’. Our body has created antibodies that treat our thyroid as foreign tissue. The antibodies mimic TSH (thyroid stimulating hormone, sent by the pituitary gland), and they trick the thyroid into continually producing more and more thyroid hormone, which makes us hyperthyroid. ATDs (either PTU or methimazole) can work to bring the effect of the antibodies in check, which keeps the thyroid from producing too much thyroid hormone. Some people can take the ATDs for a few years, stop taking them, and end up in a "remission," meaning they have a period of time where they are taking no medication or supplements, and their thyroid hormone levels remain normal, and stable. Obviously, your husband is not in this group. Since he has not achieved remission and is again hyperthyroid without the meds, he has three choices to get his body healthy again. He can go back to taking the meds, or he can have the thyroid removed through RAI or surgery. Those are really his only choices to return to health. He is risking everything, including his life, by ignoring this.

The hardest part for you is that hyperthyroidism also makes us very AGITATED, and makes it difficult for us to concentrate, so you’re fighting an uphill battle. Please feel free to check in with us again and let us know how it’s going. He’s obviously spoken with the doctor, and either doesn’t understand, respect, or believe what the doctor told him, so if you know anyone in the medical field that he DOES respect and have faith in, you may want to ask them to step in. When you’re talking to him about it, you’re likely to trigger an emotional response, and that’s probably not good for either of you. It’s tough enough to keep relationships intact when we ARE treated.

[Ski]

in reply to: Graves #1071348

Hi there!

Yep, all those symptoms are very normal when you’ve gone very hypo, and it WILL start to improve, now that you’re taking the thyroid hormone replacement. It will take time to get back to feeling well. It takes 4-6 weeks for the hormone you’re taking now to build up enough in your bloodstream so you can actually tell (by blood tests) how your body is doing with it. In the first couple of weeks, you may feel a little up & down, teeter-totter style, but after that you should settle in to a new feeling that’s better than hypo. After 4-6 weeks, have your blood tested again and see how you’re doing, then go from there. The initial dose is an educated GUESS, so you will need to spend some time dialing in to a perfect dose, but every day you are taking the replacement will be an improvement, I guarantee it. At this point, since you were SO hypo, your doctor will likely test you at four weeks, because if you still read hypo then, the doctor may want to raise your dose and help you get back to normal sooner. In the meantime, go easy. Your body is lacking energy (as if you need me to tell you that). It’s possible that some activity will help you to feel better, but go about it gently. You may experience muscle cramping while you’re still hypo, so you wouldn’t want to be too far from a "soft place to fall," just in case. Wishing all the best for you!! I’m glad you found us! ” title=”Very Happy” />

[Ski]

in reply to: Matter of life or death #1071352

I’ll send you a private message with a link that may help. You can search your local area for resources so your daughter can be seen.

If your daughter has Graves’ Disease, it is NOT likely she has tumors in her thyroid. She may have a goiter (swollen thyroid) due to imbalanced thyroid hormone levels, but tumors are not a typical occurrence with Graves’. If she has just had a thyroid storm, you need to figure out some way to get her help and begin the healing. There must be some kind of hospital nearby for people in your position ~ check teaching hospitals, med schools, anything you can think of. If nothing else, park yourself at an ER with her and ALL of your questions/concerns, and tell them you’re not leaving until someone gives you a resource to help her get well, a resource that will be an ongoing relationship.

This is bound to be a long road, getting her back to health, so you will need a doctor that understands your financial position and lets the care come FIRST. Someday we’ll catch up with the rest of the world on healthcare…..

[Ski]

in reply to: Nashville Patients #1071354

If anyone has a name, please send it to Leah by private message ~ we can’t have the names posted on the Board.

It’s tough to know, based on just a list of names, and that’s why we recommend that you call the office and talk to the office staff. Whoever answers the phone can give you general info on how busy the doctor is, how often their schedule gets out of control, and the general demeanor of the person (happy, bland, anxious, that sort of thing). Then you can ask to speak with the nurse that works with the doctor most often, and ask about the doctor’s likelihood of listening when the patient has questions and/or opinions of their own. One phone call can save a LOT of time going to visit in person. And if the office staff won’t speak to you or call you back, that’s another clue.

[Ski]

in reply to: My goiter is going down hurrayyyy #1071358

I haven’t heard about any problems with it going down so quickly ~ my guess is that it’s been getting smaller by little bits, but only in the past couple of days has it effectively provided some relief for you so that you’ve noticed. As always, ask the doctor if you’re worried about it. Congratulations!

[Ski]

in reply to: GED #1071367

Wow, this came on quickly for you, and in such a severe form! I’m glad you’ve found some relief. At our most recent conference, they spoke about the steroids and also directed radiation (not like RAI, just for those reading ~ it’s directed beams into the orbit of the eye), and told us that for patients who are having success using steroids, directed radiation is likely to help, and using both together can minimize the need for either, if you see what I mean. You can use less steroids if you are also doing directed radiation, and you can limit the directed radiation if you’re also taking steroids.

There are other new ways to treat with steroids as well ~ the doctors spoke to us about a method being used experimentally (I believe) in which they inject steroids into the fluid behind the eyes. Not INTO the eyes (ohhh, scary), but into the fluid behind the eyes (they go between your eye and orbital bone, so really no injection "point"). Bathes all the tissues in steroids, and seems to provide some real relief. You may want to ask about that.

It appears as though your doctors are on top of your condition, and that’s good. I know it’s hard to wait it out, but it’s really the safest thing. Doing too much while your disease is active can remove options for correcting your issues later.

[Ski]

in reply to: So confused #1071378

So unfair of your doctor!! If you go on methimazole and you either don’t like how it makes you feel, or you decide to do RAI, all you have to do is stop taking it for a while prior to RAI. There is no special complication I know of for patients who have taken methimazole and then had RAI. You just can’t be taking methimazole one day and have RAI the next, because it would keep your thyroid from taking in the RAI. There is a second medication, PTU, and while I know it acts slightly differently to arrive at the same result as methimazole, I don’t know if it’d be any different in your doctor’s eyes for taking before RAI. Overall, I’d say it’s time to look for a new doctor.

Many patients here have had methimazole prior to RAI (I am one, actually), and the advantage is that it allows you to slow down and THINK, process the information in front of you, before you make any irreversible choices.

[Author]

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