[Ski]

in reply to: Doctor Search #1071491

It’s best to search through the American Thyroid Association ~ it is hidden a little, so I’m putting the link here:
http://thyroid.org/patients/specialists.php

Direction for another time: On the main website, click "Publications & Links." The top link is to the American Thyroid Association. On the lower left side of the ATA main page there is a link under Patient Resources that says "Find a Specialist." That’s where this URL will take you.

[Ski]

in reply to: Graves and eye problems #1071493

With Graves’ thyroid disease, our tears become thinner, less able to provide the right moisture to our eyes, so it’s important to use artificial tears to make up the difference. Use the kind without preservatives, just in case you find yourself in a particularly difficult environment (lots of wind, unprotected from sunlight, long periods on the computer, things like that). Some people have too much trouble to wear contacts, but I still wear mine and I do all right. It’s difficult for me to wear them from early morning until late night, but I can still get through a respectable day.

Thyroid Eye Disease is something else entirely, and unfortunately there is no absolute time period where you can say "okay, if it didn’t happen yet, it won’t." The most typical occurrence of TED comes on within a year of the thyroid condition (before or after), but sometimes it happens without the thyroid disease at all, sometimes it’s 10 years out from successful treatment of the thyroid. It’s extremely random. I know that’s not easy to hear, but remember that the very worst symptoms of TED only happen to a tiny percentage of patients overall. Try not to worry too much about that.

From our perspective, any time spent hyperthyroid without treatment is dangerous. Even subclinical hyperthyroidism can be harmful to the body over time (subclinical hyperthyroidism is when your T4 seems normal, but your TSH is too low, for an extended period of time ~ think months). Once you know your levels have gone outside the normal range, you really need to do something to correct it. The damage can be stealthy, and by the time you know you’ve got issues, you can be facing far more than is necessary.

[Ski]

in reply to: Connection between GD and Pulmonary Hypertension? #1071504

The first thing you need is an endocrinologist to help you through this. The cardiologist might think it’s a simple fix, but it’s not. I can’t say for a certainty whether the pulmonary hypertension will resolve once your thyroid hormone levels are stabilized, but I can say it’s not going to happen in 30 days ~ neither hormone levels correcting, nor cardiac symptoms resolving as a result. It does sound like you’ve been suffering with this for a while (unfortunately, your story is not a rare one, in that many Graves’ patients suffer a long time before someone finally does a cheap, easy thyroid hormone test and finds the truth), and if so, then it will take your body a while to heal as well. Things happen rather slowly with thyroid conditions, in terms of coming on, and also in terms of correcting, and you definitely need someone who is more informed about the intricacies of your condition, its treatment, and your recovery.

As far as nutrition, the only thing you should absolutely avoid while you are hyperthyroid is seaweed. Some doctors recommend low-iodine diets for various reasons, but the only food that really has enough iodine to be damaging is seaweed (kelp).

Other than that, just eat smart ~ low fat, high fiber, lots of fresh fruits and vegetables, minimize empty calories. That’s the best way to have a good foundation inside your body to promote healing.

[Ski]

in reply to: sed rate? #1071506

It’s easy to look those up on Wikipedia or even just do a Yahoo/Google search. I don’t know offhand (I’ll bet someone does!), but that’s the way I look up tests I don’t know about.

[Ski]

in reply to: Stronger Immune System with RAI?? #1071517

I used to be a magnet for strep throat ~ and when my kids got to be school age, I would catch it, they would not. Truly unfair! I know how you feel.

I need to word this carefully ~ having an autoimmune disease doesn’t mean our immune system can be called "weak." It is more likely that your body is run down from being hyperthyroid, you aren’t fully recovered (levels should be normal, and stable for at least a few weeks before your body even begins to heal), and that makes you more susceptible. Having RAI won’t change your current status. Once your levels normalize, and stabilize, AND you’ve had some time to heal, you’ll be stronger against diseases, no matter how you get there.

[Ski]

in reply to: And so it begins… #1071543

Hi Blessed,

If you have tested hyperthyroid again, you really need to address it somehow. If you want to use Tapazole again to get your levels back into the normal range, that’s a perfectly valid decision, and even if the chances for a second remission are small, if you are IN that group of success stories, it works 100% for you. It’s just too dangerous to continue being hyperthyroid ~ by the time you start feeling really badly, the damage your body has suffered could be severe.

I’m so glad you found us, and I’m glad that reading our posts has taught you so much! ” title=”Very Happy” /> Welcome.

[Ski]

in reply to: Recurrence of TED after orbital decompression surgery?? #1071525

Hi Lisa,

The "cold phase" of TED can be tricky to determine ~ the doctors who spoke with us in October told us that it is only effectively diagnosed in retrospect, because you can’t always tell where you stand in the cycle of TED until you have a good, long period without changes. Surgery done before you hit the cold phase can risk the issues you’re experiencing ~ I know you felt as if you waited long enough, but everyone’s different (should be our mantra here ” title=”Wink” />) and so there really are no absolute timelines.

I really hope the secondary treatments give you relief! I also hope this recurrence is short lived. I understand the blurriness has to do with recovery, that should resolve as you heal.

[Ski]

in reply to: Newly Diagnosed #1071663

Your hair will grow back, but until your thyroid hormone levels are normal, and stable, it won’t return to what you know as normal. In the meantime, go easy on it ~ no perms, no color, and look into a cute, short haircut that you can maintain without fussing too much. Less brushing, more "tousling," if you know what I mean.

It’s your body protecting itself. Rapid shifts in thyroid hormone levels trigger an emergency response in the body, so it removes resources from the areas that are not necessary for keeping you alive (like the hair and nails) in order to keep resources available for the parts of your body that ARE essential. For that reason, you’ll find that the symptom continues even when you begin treatment, because the thyroid hormone will be changing, and that triggers an emergency response as well. In a normal lifetime, thyroid hormone levels would not change that quickly. So even when you’re moving toward health, you’ll see some hair loss resulting. That’s why I say do something that will last (like a short haircut) to keep you from being dismayed at every turn. It’ll come back, and then you can grow it long and beautiful again.

Boy, the loss of sleep was absolutely my least favorite thing ~ amazing where our minds can wander when it’s dark and quiet, isn’t it?? Once your levels start to drop, you’ll find that resolving as well. It can rear its head again if you go hypo at all (lovely, isn’t it, symptoms of both extremes are the same), but we’ll be here to help you through! And we have an international group, so no matter when you’re up, someone will probably be here. ” title=”Very Happy” />

[Ski]

in reply to: question re: Graves, immunity and swine flu #1071600

I didn’t think I had many symptoms either (it was such a joy getting everything DONE in a day), but once my levels dropped into normal ranges I finally understood how sick I had really been.

Weight training can be harmful now ~ when you’re hyperthyroid, the "breakdown" process of building muscle is accelerated, and the "rebuild" process is suppressed, so all you end up doing is breaking down muscle tissue, getting nothing back.

All of the things I listed at first are possibilities for hyperthyroid patients who are not treated in any way to bring the thyroid hormone levels down. Loss of muscle mass and bone mass are a given while we are hyperthyroid, heart arrhythmias are likely and can get out of control, plus you risk thyroid storm, which is rare, but can come on rapidly and be life-threatening. At the very least, find out what the symptoms of thyroid storm are so you can get help quickly if it happens to you.

I would discuss all of this further with your doctor for clarification. If you are on either methimazole or PTU, you are being treated (these work to lower thyroid hormone levels), but you are not making an irreversible treatment choice. It’s what we recommend for everyone who wants to investigate the disease, its effects, and the treatments available. It’s difficult to do effective research when we’re hyperthyroid because it’s not easy to think in a straight line and keep focus.

[Ski]

in reply to: board going wonky???? #1071564

Odd! I have not noticed such a thing myself, but I’ll pass along the fact that you’re having issues.

[Ski]

in reply to: Will my eyes return to normal on their own? #1071620

I haven’t heard it specifically associated with Graves’ or thyroid conditions, but I do know many people who have cut out gluten and found themselves feeling much better in all respects, inflammation in their body goes down, and their weight drops. These are not people diagnosed with celiac disease, just stopping to see if it helps, and it has. There are probably more people sensitive to it than we realize ~ and (as I’m sure you’ve noticed) we live in a VERY gluten-based world. It’s in so many products, people don’t even realize they’re ingesting it. So, whatever the reason, if it works, good for you!

The only thing I would say is that you may want to have a quick blood test done for the TED antibodies prior to surgery. There is a theory that high levels of those antibodies can be associated with symptoms returning after surgery, so testing and finding low levels could be reassuring.

Sounds like you have your issues well in hand, and a good doctor too ~ good luck with your surgery!! ” title=”Very Happy” />

[Ski]

in reply to: How can I be more supportive? #1074359

I have heard of thyroid tissue regenerating, but I also understand that it is VERY rare. At least you’ll know what to look for, if symptoms begin, and you’ll also be monitoring her thyroid hormone levels so you should get a quick heads-up if that’s going to be a concern for you. Typically all thyroidectomies are "partial," just because the parathyroids are attached to the "wingtips" of the thyroid, and they regulate our calcium, so they like to leave that portion alone and have less risk of calcium issues following the surgery. I don’t think they leave any appreciable amount of thyroid tissue. Still, as they are required to tell you, it is theoretically possible for some tissue to regenerate. Magical. ” title=”Very Happy” />

There are plenty of people here who have had the surgery, and they’ll be able to answer the questions about what happens after better than I will. I think there’s usually just one night in the hospital, a restriction on lifting for a while, and other typical surgical recovery issues (being tired, pain, etc.). Since with surgery you know that the thyroid is gone completely right away, typically they’ll start the patient on thyroid hormone replacement immediately. Other than that, I’ll let those who really know weigh in. ” title=”Wink” />

[Ski]

in reply to: Just diagnosed and question about being overweight #1071596

Yep, me! ” title=”Very Happy” /> This is a tough position to be in, I know. Here’s the thing. Your elevated metabolism due to Graves’ may actually be part of the reason your workouts were not resulting in weight loss. When we are hyperthyroid, we lose muscle mass. Muscle mass is extremely important to weight loss, because it burns calories even at rest. When we lose that muscle mass, we lose that capability. Exercising while hyperthyroid actually accelerates that loss of muscle mass, putting us in an even worse position than before, and continuing to exercise will just continue that damage.

Your metabolism will definitely slow down from its elevated state right now, but since you have been correctly diagnosed, you will not be facing a long period of hypothyroidism during treatment ~ your doctors will be watching your levels to ensure that doesn’t happen to you. The goal is to attain, and maintain, NORMAL thyroid hormone levels. If you use the meds, you regulate it that way. If you use the RAI or surgery, you use replacement thyroid hormone. But you will NOT be hypothyroid every day.

Overall, after I was successfully treated (RAI being my personal choice ~ learn about your options, and choose based on your OWN preference), I think I might have gained about 20 pounds that I haven’t lost again, but again, I was overweight since I was 8 years old. I have also traversed ten years since my initial diagnosis, and most of my friends have also put on 20 pounds (or more) in that ten years, and they were not dealing with Graves’. Perspective in all things.

The most important thing is your health. Make sure you learn all you can about Graves’, its symptoms, its treatments, the pros and cons of all angles, and make sure you have a doctor that you TRUST and can work with. Those will be the critical elements in your successful treatment. You need to understand completely what’s going on, and you must have a doctor who will not dismiss your opinions out of hand, but who will talk frankly with you about everything. You will likely have some contact with your doctor forever, from now on. You need someone who has your back.

[Ski]

in reply to: I need Help ( newbie here) #1071609

We can’t say what’s going on with you ~ it sounds VERY complicated ~ but we are certainly familiar with the symptoms you describe! I can only pass along strength to get through this, and kudos for continuing the fight to figure out what the heck is going on! It’s important for us always to be our own advocate, don’t let anyone sweep you out the door because they didn’t find what they were looking for ~ the next question should be "so where do we go NEXT to find out what’s going on??"

I would suggest that you get your own copies of ALL the test results. You’re the patient, they belong to you. With your TSH reading so low, it would be interesting to see whether the T4/T3 levels were within the normal range, yet close to the very top of that normal range. The normal range is enormous, and the reason for that is there are people around the globe who have widely varying T4/T3 thyroid hormone levels, yet all are deemed "normal." If your normal is typically lower in the range, being near the top would indicate an abnormality FOR YOU. If you had T4/T3 tests done earlier in your life, it would be very interesting to compare the most recent results to those.

If you are lucky enough NOT to have Graves’, and it IS hyperthyroidism you’re experiencing, there’s a chance it is simply thyroiditis and it will resolve on its own. I’ll hope for that for you.

[Ski]

in reply to: question re: Graves, immunity and swine flu #1071598

Hi Elise,

If you are hyperthyroid, doing nothing for several months could really be dangerous ~ did your doctor mention a reason for the lack of concern over non-treatment? While hyperthyroid, our bodies lose muscle mass, bone mass, we have irregular heart rhythms that can be extremely dangerous, and we risk thyroid storm. On top of that, any part of our body that is weak for other reasons is susceptible to damage because of the excess thyroid hormone, which is literally the fuel for every cell.

Again, while you are hyperthyroid, your body may well be more susceptible to the effects of disease (like swine flu), not because you have an autoimmune disease, but because your body can be extremely run down after a period of hyperthyroidism, so you are in a weakened state prior to contracting the other illness.

An autoimmune disease doesn’t necessarily mean your immune system is weakened ~ as a matter of fact, it has created extra work for itself by creating antibodies to existing tissue in your body, and it’s doing that rather effectively. The complication for us is that when we are sick due to other things, cold or flu for instance, our autoimmune symptoms can spike because the immune system is stimulated and all antibodies will be more active.

In 60 years of dealing with Graves’, no alternative treatments have proven effective for lowering thyroid hormone levels. If any were reliable, I know that 100% of the GD patients I’m acquainted with would have opted for those instead of the three treatment choices we have. Nobody likes to hear that. There are alternative methods for healing the body that you can make use of AFTER your thyroid hormone levels have returned to normal, and those may well minimize your symptoms overall, but they have no power over the excess thyroid hormone itself, and that’s what is really making you sick.

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