[Ski]

in reply to: Nothing seems to get better.. #1065103

Short answer ~ this is common, it definitely takes time to come back (especially after having been ill for a year), and it seems to take FOREVER, but you will get to feeling better, I promise, and when it’s in your rearview mirror, it won’t even seem that bad. PROMISE. For now, though, just know that’s the path we all take. "Normal" may only get an inch closer today, but it’s still closer. Try to find the small improvements, and someday you’ll find yourself forgetting to check, because you do feel good.

Check out the other posts on this board, you’ll probably find some that describe what you’re going through. Sometimes it helps just to know you’re not alone, right?

[Ski]

in reply to: So curious about how GD affects eyes. #1065092

Thyroid Eye Disease appears to have a completely separate disease course from Graves’ Thyroid Disease. Treatment for GD has no effect on the potential for having TED or having more severe TED. We do know a few things about TED, but there are a lot of things we do not know. At the last conference, there was some talk of the antibodies being closely related, but up until then the conventional wisdom was that the antibodies were separate. In other words, things are still being proven as far as that goes. Still, there appears to be no connection whatsoever between GD and TED other than that they commonly happen together. We know that smokers experience the worst symptoms of TED and the longer disease curves, but other than that, I’ve seen nothing that suggests any particular treatment or behavior can affect your chances of ending up with TED, no obvious commonalities between those with TED. I should actually say "severe TED," because they say that all of us, examined closely, will show some symptoms of TED.

[Ski]

in reply to: Newly dx with Graves/goiter #1065144

Hi and welcome ~ I know no one wanted to find themselves here, but here we are. ” title=”Very Happy” />

Diet can’t help your thyroid hormone levels, except that avoiding kelp/seaweed products is wise, because kelp is extremely high in iodine, which the body uses to make thyroid hormone, so it has a similar effect to pouring gasoline on a raging fire. Otherwise, food won’t make a difference in thyroid hormone levels. Eating healthier will always be a good thing, and it can help you feel the best you can.

ATDs can be a good way to get your thyroid hormone levels back to normal so that you can collect yourself and decide what your path may be if ATDs don’t end up working well for you. One thing you should know is that removing only part of the thyroid has not been proven a successful strategy in treatment. Any thyroid tissue that remains active has the potential to be "goaded" into excessive release of thyroid hormone by the Graves’ antibodies.

Still, for now, try to focus on the task at hand ~ I’m sure you aren’t feeling very well, and it may be quite a while before you regain yourself. Things happen slowly with thyroid disease, changes come gradually, so be patient, be gentle on yourself, and keep doing what you’re doing ~ learn all you can about GD and its treatments. It’s so important to your state of mind.

[Ski]

in reply to: Benefit of a research hosp after treatment for a 2 opinion #1065187

Hi Soni,

I want to respond to this part of your post:

They also feel that a research hospital could help me to find out if I have other autoimmune disorders/issues and could possibly do something to prevent any thyroid eye disease that I may encounter in the future (had gone to opthamologist in Oct of last year and they did not diagnose Graves at that time. Endo says to hold off going again because eyes are changing as we speak).

First, your endo can test for other autoimmune conditions (don’t need a research hospital for that), but more importantly, there is absolutely no way to prevent Thyroid Eye Disease, if that is your path. The encouraging part is that only a very small percentage of GD patients end up with the worst of TED. Most of us have *some* TED symptoms.

Also, I would suggest that, if your eyes are changing NOW, then NOW is the time to see the ophthalmologist, so that they can establish the rate of change and the severity of your symptoms. For the most part, we are all told to wait and see with TED (unless the optic nerve is being compressed, which is VERY VERY RARE), but it’s definitely a good idea to build a relationship with an ophthalmologist as changes progress.

[Ski]

in reply to: On to the next step!!! 8wks post RAI #1065165

What a great message, thanks for posting! As you say, it’s SO helpful for those coming after. ” title=”Very Happy” /> I’m glad you’re feeling better, and your attitude is GREAT, that’ll get you through this with a smile. ” title=”Wink” />

[Ski]

in reply to: Life after RAI question #1065310

Just make sure you’re vigilant about checking your bone density if your TSH remains suppressed, because bone loss is one thing you can’t undo later, and a suppressed TSH *usually* means your body is sensing that your thyroid hormone levels are too high. I realize there are rare aberrations, but articles have been written about "subclinical hyperthyroidism," which is described exactly this way (normal T3 and T4 levels, suppressed TSH), and patients who have been this way longterm still potentially suffer the consequences of full hyperthyroidism, though slower than they might do if all levels were out of range.

[Ski]

in reply to: only sleeping 2 to 4 hours night sooo tired #1065108

Hi Cynthia,

Sorry to hear you’re feeling so wretched ~ unfortunately, having gone untreated for such a long period of time may delay your return to "normal," it’s SO hard on your body to be hyperthyroid, it affects literally every cell in your body, and since we’re all so different, it can affect each of us very differently, so damage can turn up in all kinds of areas.

For now, I would urge you to do a few things ~ first, go easy on yourself. Consider yourself in recovery, and only commit to those things that you know you can handle, and only those things that give you some sense of satisfaction. Anything that only serves to drain you, DON’T do it, and don’t apologize.

Get educated on what’s going on with your body during GD, because it will help you weather the storm. This BB is a great source of info as well as anecdotal information from people who are going through exactly the same things, so you can find some hints and tips on how to handle things as well as just give yourself an opportunity to VENT sometimes. We understand, we’ve been there, and we won’t tell you to "suck it up and put it behind you," because we know that’s not going to help.

As far as sleeplessness goes, that’s very common, and we had a very good talk on this at one of our conferences. A few things to consider. First, just laying still in a dark, quiet room is ALMOST as good as sleep, as long as you’re not laying there stressing out about not sleeping. Second, remember this is *chemical,* it’s not as if you’re just "too stressed to sleep," your body is literally on overdrive, and sleep is extremely difficult to achieve during this state. As your levels drop, sleep will come more easily, but it takes a while to find yourself at someplace you may remember as normal, so in the meantime, there are a few things you can do to encourage your body to rest. You can "prepare" your body for sleep by taking a hot bath or shower, and doing some kind of nighttime routine (perhaps reading, maybe using recordings of oceans/forests/etc.). Make sure you are laying down in a comfortable position, in a dark, quiet room. If you find yourself laying there stressing out about not having gotten to sleep yet, get up, go into another room, and do something quietly ~ read, knit, write ~ until you feel sleepy, then try again. TV is not good for relaxation, the images shift often, and the idea is to keep your attention on it, so it’s tough to relax while that’s on. If you find that you are sleeping very few hours, and yet it feels as if your sleep is complete, then perhaps head to bed later in the night so that your waking time is more closely aligned to when you’d like to get up anyway. If you need sleep aids for now, you may want to look into that ~ they’ll be temporary, I can assure you of that, but if you let yourself get into a chronic state of insomnia, it can become a mind game trap that’s hard to get out of. If naps during the day are possible for you, that’s another way to get your day’s rest and feel better, so explore that option too.

I hope some of this helps! I’m sure you have lots more questions and issues, stick around and we’ll be happy to help! ” title=”Very Happy” />

[Ski]

in reply to: What are the signs of an allergy to Methimazole? #1065197

It can show up as a rash, but you’re right, if the rash was only on your shins, it’s actually more likely pretibial myxedema. Still, did it resolve after you stopped taking the methimazole? That’s something the doctor will consider. The symptoms I’ve heard for allergic reactions are more like hives, all over, and some people have been able to minimize those by keeping the dose low. I would have a very frank discussion with the doctor and ask if they are willing to try again. If you still have the rash on your shins, see a dermatologist and they can confirm the pretibial myxedema, that would definitely help.

[Ski]

in reply to: One year from RAI #1065524

It’s hard to guess a replacement dose of Synthroid, so no matter where you begin, it may be a little while before you find the precisely perfect dose for you. Make sure you wait 6 weeks before you get tested, after you’ve changed to a new dose. It’s very normal to FEEL up/down/all around for the first couple of weeks after beginning a new dose, but then things tend to level out, and only at the six week mark can you truly trust the blood test results you get, that’s how long it takes to reflect exactly the way your body adjusts to this particular dose. One more thing ~ whatever type of replacement hormone you’ve been started on, whether name brand or generic, try to stick with that "brand" moving forward, because slight differences in pill formation can make a big difference in how we feel, so doses are not exactly equivalent across brands. Pay close attention to the way you take your pill every day ~ must be on an empty stomach, so it can get all the way to your intestine, which is where the actual hormone is absorbed. Take it with a big glass of water, and don’t eat anything for 45 minutes to an hour. Do not take your vitamins/minerals/supplements for about four hours afterward. I take mine as soon as I wake up, then I just don’t eat for at least an hour. For me that’s pretty easy, I have a lot of little things to do in the morning and I’m also not usually hungry right away. Some people do set an alarm about an hour before they really want to get up, and take it then. That works too. I wish you luck, let us know how it’s going!

[Ski]

in reply to: small weight gain..7 months port RAI #1065230

Remember that when we are hyperthyroid, the muscle wasting changes the way our body uses calories, because muscle tissue literally goes away, and muscle tissue uses calories just sitting still, which other tissue does not. After we are treated and our levels are normal, our body begins replacing that muscle, but with soft, flabby, baby muscle that we need to work extremely gently in order to begin conditioning it back to the level we remember. All of this plays havoc with our weight as well, so consider having an evaluation by a physical therapist so you fully understand where you are now weaker than you used to be, and develop a workout strategy to specifically increase strength where you may have lost it. That can help a lot.

[Ski]

in reply to: shortness of breath? #1065204

All I can conclusively say is that it’s never happened to me in relation to thyroid hormone replacement. At this point, there’s a slight chance it’s related to aftereffects from the surgery itself, so maybe someone else who has had surgery can speak to that part of it. I’m glad it’s transient, and I’m glad you’re not too worried about it, but I’m ALSO glad you’ll be speaking to a physician soon. Must be unsettling when it’s happening.

[Ski]

in reply to: Newly diagnosed with Graves #1065207

While it’s certainly possible that you could have both Graves’ and Fibromyalgia (and people here do suffer from both), it’s also possible that you don’t. My understanding is that there is no conclusive test that can be run, so it’s hard to know for sure. If you’ve truly been hyperthyroid and untreated for that many years, it’s not surprising that things in your body have gone rather haywire, that’s an extreme assault, certainly, and the longer it goes on, the more damage can be done.

It is POSSIBLE that many of your issues could resolve after you’ve been successfully treated and brought to normal, stable levels of thyroid hormone, but that’s the point at which it can BEGIN, and you’ve been under assault for a long time, so it may take a while after that to truly heal, before you’ll know for sure whether your issues are caused by GD or fibromyalgia. Just take it easy, one day at a time ~ at LEAST you’ve begun the process with a real diagnosis. Try to look for the good news, it comes slowly but it does get better, I promise.

[Ski]

in reply to: Hi everyone, we are back! #1065210

Thanks for the update, we’ve missed you! Sorry to hear the symptoms are returning, this is not an easy path for anyone, is it? Let us know how things progress from here, and give Cat our love!

[Ski]

in reply to: small weight gain..7 months port RAI #1065225

This is all good information to give the doctor while you ask exactly this question, and use new lab tests to help with the discussion. There are lots of things that could be contributing, so look at all the facts and see if there’s any reason to presume that your thyroid hormone levels could be at the root of the change.

[Ski]

in reply to: Off methimazole again #1065236

Prayers coming from this corner of the world! ” title=”Very Happy” />

Remember though, HEALTH is the goal, and if ultimately RAI (or surgery) are your path to health, then that’s a reason to celebrate as well. I realize that we can get "attached" to treatment choices, which means we feel badly if they "fail" for us, but in the end we’re so fortunate to have options.

[Author]

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