[Ski]

in reply to: I want my pre-graves edge back #1062081

You can get your edge back ~ just take steps toward that goal, and you’ll find it! Some of the wasting of the muscles during the hyperthyroid state can "set you back" until your levels are normal, and stable, at which point your body can *begin* to heal from the onslaught. Once you find a good level and remain stable there, go back to those things you love, to the extent that you can without hurting yourself. You may even want to see a physical therapist to get a good idea of which muscles you need to work, and how best to bring the strength back, because we all react differently, but hyperthyroidism can cause severe damage to the large muscle groups (upper arms, chest, upper legs). Some of the weight we lose while hyperthyroid is that muscle, and some of the weight gain we experience is that muscle returning, but when it comes back it is soft, "baby" muscle that needs to be worked more gently than you are used to, in order to get that strength back. That can do a LOT to bring back your edge.

There was a Graves’ patient who spoke at a conference in San Diego several years ago ~ he was a mountain climber, and climbed Everest *after* successful Graves’ treatment. It can be done. He did say it was the hardest training he ever did, but he did it, and he got there. You can too.

[Ski]

in reply to: it hasnt gone away #1062086

Not sure where you stand with your treatment ~ are you still hyperthyroid, or no? There are different things you can do, but the most important thing is knowing your current status, so you can direct your care in the best (and most cost-effective) way.

[Ski]

in reply to: Searching pictures for use in Wikipedia article about Graves #1062056

I would recommend contacting the Shiley Eye Center in San Diego, they’ve spoken at many of our conferences and have some excellent photos for Thyroid Eye Disease. Let me think about the others, I’m sure someone at the GDF can connect you with someone.

[Ski]

in reply to: Shingles Question #1062093

Are you talking about true shingles (caused by the same root virus as chicken pox), or pretibial myxedema (the autoimmune disease that is closely associated with Graves’ and occurs in a small percentage of patients, on their lower legs and/or feet)?

[Ski]

in reply to: Cousin’s have Grave’s Disease #1062114

If your cousin is only 5 months from her diagnosis, she is VERY early in her treatment. Everything thyroid takes time to treat and solve. That’s just the way it is.

There are some who experience an allergic reaction to the ATD (anti-thyroid drug), but there is nothing in the RAI that is remotely similar to the ATD or that would produce the same effect for the same reason. You may want to discuss that with your cousin again ~ if that’s what your cousin believes, then perhaps you’d be a good advocate for going along to doctor’s appointments. Hyperthyroidism can result in confusion and shortened attention span, so we often recommend having someone go along with the patient to early doctor’s appointments, and perhaps even taking notes. The doctors don’t have a lot of time for us, and anything we can do to get the most out of the time we do get with the doctor is worth it.

All that said, surgery is a valid third option for treating Graves’ Disease that your cousin could use in order to get well, if ATDs aren’t working and RAI doesn’t seem like a good choice for her. Count her lucky for having the correct diagnosis ~ the most severe problems are reported in patients who have long periods of hyperthyroidism before getting the right diagnosis.

We’d love to meet both of your cousins here, please do suggest that they drop by!

[Ski]

in reply to: New Graves Diagnosis #1062118

We’ve heard at our conferences that autoimmune diseases have at their heart a genetic defect that every patient with autoimmune diseases shares ~ not everyone with the defect has an autoimmune disease, but every patient with an autoimmune disease has the defect, so we could say that those with the defect who don’t have an autoimmune disease, don’t have one … yet.

The theory right now is that we carry this defect, and then something triggers the autoimmune condition, whichever our body "chooses" to get. For that reason, it is rather common for people to have more than one autoimmune condition or, put more fairly, we are slightly more likely to get a second autoimmune disease once we’ve been diagnosed with one autoimmune disease.

Just to provide a bit more clarity ~ it’s not your immune system that is sick. Your body is creating antibodies to healthy tissue, which is a bit more like an overactive immune system, if you take my meaning. We don’t have "compromised" immune systems in the way that an AIDS patient would have. As a matter of fact, if we pursue things that "boost" the immune system, we’re more likely to increase our damaging symptoms, since the antibodies reside in the immune system, and boosting the good antibodies also boosts the bad.

[Ski]

in reply to: New and have many questions #1062158

If you are actively hyperthyroid, then yes, that can cause dry skin and resulting itch. If you have begun treatment and your levels are normalizing, it’s rare to have the same issue occurring, and even rarer to have it intermittently.

[Ski]

in reply to: Tsh #1062148

Once we are hypothyroid, there’s a certain point beyond which it’s literally impossible to be "more" hypo ~ in other words, the high levels of TSH are a chemical sent into the bloodstream from the pituitary gland which is supposed to "talk" to your thyroid to tell it to release more thyroid hormone. Since we have no thyroid after RAI, it doesn’t respond, and if our levels go uncorrected for a while, then the pituitary continues increasing the TSH in order to try and get through to the thyroid which is not responding. If you ever get to a point where there is NO thyroid hormone in your bloodstream (not very likely, especially when we anticipate this after RAI), the TSH may continue to rise, but it doesn’t mean you have "less than no" thyroid hormone, if you see what I mean.

Whenever you start taking thyroid hormone replacement, the TSH should begin to drop fairly quickly. Keep in mind that your body needs at least six weeks on a new dose of thyroid hormone replacement before your TSH levels will give you an accurate read on how you are responding to it, so wait that amount of time before having labs done in order to make sure the journey to YOUR best dose is as short as possible.

You should know that, when you either begin taking thyroid hormone replacement OR when you change a dose level (up or down), you will likely feel a bit up/down/all around for a couple of weeks, then your body will begin to settle into the dose, so it’s impossible to make determinations about the effectiveness of your dose by the way you feel the next day, or two days later.

That said, some people have reactions to the fillers that make thyroid hormone replacement into a pill, and there are different types you can try if that happens to you. Talk with your doctor about what to look for and what the options are.

It is literally impossible to "react" negatively to the actual thyroid hormone replacement, because it is chemically identical to the thyroid hormone that your body would generate, if your thyroid still functioned. Any negative reactions would be due to a dose that is incorrect ~ a dose too low will result in hypothyroidism, and a dose too high will result in hyperthyroidism, but it’s not a "fault" of the thyroid hormone, it’s a problem with the amount the patient is taking.

Pay very close attention to the rules for taking thyroid hormone replacement ~ take it with 8 oz. of water on an empty stomach (at least 3 hours after eating), and don’t eat for 30-45 minutes after you take it. Also, don’t take mineral supplements for at least 4 hours afterward. That’ll help you get through this smoothly too.

[Ski]

in reply to: New and have many questions #1062156

TED is Thyroid Eye Disease, and pretibial myxedema affects only the skin on our shins, and sometimes the feet. If the itching you are experiencing comes from extremely dry skin, then that could be related to hyperthyroidism, but that’s a pretty big stretch, especially in the way you describe it. It’d be pretty constant if it were related to your thyroid hormone levels.

[Ski]

in reply to: New member #1062195

Hi Ryan,

You’ve sure been through it! Have you tried keeping a symptom diary, and adjusting your levels within the normal range, to see if that makes you feel better? Some doctors don’t support that, but you have a right to find YOUR level, not just to find yourself within the (enormous) normal range.

We find that many of us continue to feel some type of mental effects, though it does seem to get better over time. Remember that the onslaught of hyperthyroidism can damage a lot, and healing can take a long time as well.

Still, sometimes we do tend to believe that any discomfort/symptom is due to thyroid issues, when that’s not always true, so it may be a good idea to get an autoimmune screening for other autoimmune conditions ~ we are statistically slightly more likely to end up with a second autoimmune disease after we have one, so it’s not a bad idea to just check things out.

I hope you find a way to return your health! Do let us know how it’s going, we’re finding out more and more all the time, and some of the very best info we get is from patients, so just telling us your story can help the next patient. ” title=”Very Happy” />

[Ski]

in reply to: Two months post RAI, all sorts of GI problems #1062199

I’m not sure how common this is (I haven’t seen too many people complain of it, but definitely some), but I know I had a severe abdominal episode in about the same timeframe after my RAI ~ it was awful, I felt terrible, had to go on a liquid diet for a few days, had a mountain of tests that proved NOTHING, and within a week I was on the mend. I can’t say for a certainty that it was related to the RAI, but my GUESS has always been that the rapid change in thyroid hormone had something to do with it.

Since you’ve already been run through the full panel of tests and your doctors are aware of what’s going on, I would pay attention to anything they’ve said when it comes to "if xx happens, please do come back and see us," and leave it at that.

Sorry you’re feeling so awful!! I do hope it resolves quickly.

[Ski]

in reply to: lab results from yesterday #1062229

DEFINITELY there’s a chance you’ll still go hypo from the RAI. Believe it or not, you’re early on in the process. Everything Graves’ takes a while, it’s frustrating, but there it is…

Remember that the TSH level can lag WAY behind T4 levels. It takes time to "catch up," weeks, because it gives a response to a kind of "running average" of thyroid hormone it senses in the bloodstream. In addition, long periods of hyperthyroidism can make the pituitary kind of "fall asleep," so it can take a while to kick start after the thyroid hormone levels begin to drop out of the hyperthyroid range.

Pay closer attention to the T4 levels at this stage to determine hypo/hyper ~ once you’ve GONE hypo and you’re looking for results about taking thyroid hormone replacement, pay more attention to TSH.

[Ski]

in reply to: New here. My journey with Graves #1062201

Don’t worry about long posts ~ sometimes we get carried away! ” title=”Very Happy” />

I don’t have a lot of time to respond right now, but I wanted to let you know that it’s very common for RAI to take a while to work ~ it takes at least six weeks just to flush out the excess thyroid hormone that existed in your bloodstream on the day of RAI, so try to be patient. Please don’t worry that you’ll need a second dose, not yet.

When I had my RAI, the radiologist told me that it would do the bulk of the work in the first six weeks, but that it can continue to have an effect on your thyroid for up to six months.

I hope that helps! I’ll check back in when I get home and try to fill in some more info for you…

[Ski]

in reply to: Recently diagnosed with hyperthyroidism #1062248

Hi Nina,

First you should know that you are SO lucky to have been correctly diagnosed, at last ~ you will be amazed at the difference when you have fully healed. We do tend to dismiss the symptoms of hyperthyroidism, and we find that even doctors behave that way at times, which complicates diagnosis and successful treatment for many.

Remember that you have been ill, and you will now be getting WELL. You have a process to go through, but you’re headed in the right direction. Continued hyperthyroidism could truly have been debilitating. TT has one big advantage for the GD patient ~ you know exactly when your thyroid stops functioning, because it is gone. For that reason, the initial dose of replacement hormone is given rather soon, so the route to your perfect dose of replacement hormone may be quicker.

Still, it takes some time to zero in on just the right replacement dose, so remember to be patient. You must wait at least six weeks after beginning a new dose of thyroid hormone replacement before your blood tests can accurately represent your body’s reaction to that dose ~ it has to do with the pituitary feedback loop, and the life of thyroid hormone in the bloodstream, but it’s more important just to know that you need to wait that amount of time. If, after that time, your blood test shows imbalance once way or another, then you need to move doses SLOWLY, usually one dose level at a time. You can see how just a few adjustments can take a while, and it can be frustrating, but it is what it is, and there’s no changing it. In the meantime, look for small improvements, things that are better (slightly) today than they were yesterday, rather than looking to feel "right." Your body needs to heal from the hyperthyroidism before it can start to get back to "right," and you need to find the correct dose of thyroid hormone replacement before your body can heal from the hyperthyroidism.

Everything you can do at this point to put a smile on your face will be worth it, trust me! We find that many GD patients turn out to be "Type A," do-everything-for-everyone kind of people, so you may need to dial that back a little, for a while ~ and believe me, we all know that is difficult! Try to evaluate your daily tasks, and cut out the things that don’t "feed your soul," that seem to only drain you and are not essential to running your household. In addition, you should ADD things to your day that DO "feed your soul," because it’ll really help you get through the healing process (I promise). Finally, NO GUILT ALLOWED! ” title=”Very Happy” /> Others may not understand (though it sounds as if your family truly does), so you need to be good to yourself until you feel you can go back to everything you "used to" do all the time.

I hope that helps! We’re glad you found us too!

[Ski]

in reply to: Recently Diagnosed! #1062260

Hi Sher,

Welcome! I just wanted to jump in and mention that we cannot help you interpret your labs (we must leave that to the medical professionals), but just take a look at them to see what the normal range is (the test results will spell that out), and where your levels fall in relationship to that range. As you have blood tests done again and again, you’ll start to familiarize yourself with where you’ve been, and where you’re headed, and it’ll definitely help you navigate.

Typically our labs include TSH, which is Thyroid Stimulating Hormone, and it comes from the pituitary gland in response to its "reading" of the thyroid hormones in our bloodstream (primarily "T4" thyroid hormone). Because of that, the relationship to our thyroid hormones is inverse, meaning that when you have HIGH levels of TSH, you should have LOW levels of thyroid hormone (that’d be the T4 reading), and vice versa. So, a TSH level higher than the normal range points to hyPOthyroidism, and a TSH level lower than the normal range points to hyPERthyroidism. At first your doctor should hopefully be getting both TSH and T4 levels, especially as you navigate the ATD dose that’s best for you (that’s the methimazole).

I see you’ve gotten great advice already, so I just wanted to point out that one thing for you ~ and I am with everyone else, teleconferencing is a PERFECT solution to driving the distances, we have got to get that idea going worldwide! Brilliant! ” title=”Very Happy” />

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