[Ski]

in reply to: Just found out I have Graves 3 weeks ago – Help #1064764

Hi Jules,

Sorry to hear you’re having such trouble ~ I’m glad you have an appointment tomorrow, that’s great. It sounds as if your endo has already put you on anti-thyroid drugs (ATDs, we call them), but you don’t say exactly what the prescription is, so I’m not sure. Sometimes they will prescribe beta blockers (typically heart meds, but they can help with our symptoms ~ don’t correct the problem, but they address the heart rate and tremors), so I wouldn’t be surprised if that’s what you were given, or if you were given those in addition to the ATDs.

In any event, once they’ve seen you and evaluated your condition, it’s not surprising that they would want to wait for those diagnostic test results before seeing you again. There’s not much they can do without new information, so the likelihood is that your endo will simply reiterate these points in defense of their staff.

Hyperthyroidism definitely produces all of these symptoms, and in addition makes us CRAZY with worry, so I understand where you’re coming from, and with your family’s history of heart problems, I can empathize with your desire to be seen ASAP. Hopefully the doctor already had some sense of your current condition, felt that they had provided medication to get your levels to begin dropping, and will reassure you at tomorrow’s appointment. Throat/voice issues can be caused by the swelling of an overactive thyroid (underactive also makes it swell, just so you know), and the heart rate is a direct result of hyperthyroidism, as are the tremors in your hands. *Typically* these things do not escalate into something that will cause a heart attack, though there is one very rare condition, called a "thyroid storm" that can occur when hyperthyroidism has gone completely untreated. The doctor probably does not consider you to be at risk for this, but do ask the doctor tomorrow what you should look for and what you should be extremely concerned about, so that you’ll know when it’s appropriate to push for an appointment or go to an ER. If you truly find yourself in thyroid storm, that is an ER event. I hesitate to mention it because it is so rare and you are so very worried, but I felt you should know it exists. You shouldn’t be mistakenly pacified that "nothing can happen," but you are currently under treatment and your doctor would have given you specific instructions if they felt you were at a particularly high risk of this rare event.

The thing you need to understand is that nothing resolves quickly with Graves’ Disease. Things will get progressively better as you go through the treatment process, but it’s not something that gets better immediately upon taking the first pill. It took time for us to get sick, and it takes time for us to heal. Months is the scale we work with, not days, not weeks. Try to find a way to calm yourself ~ I know it seems nearly impossible. Your heart rate will likely continue to be high, and the things you are experiencing are *chemical*, so don’t feel as if you are some kind of a "failure" if you are unable to relax completely, but do anything you can to find some peace, and you will feel better for it.

[Ski]

in reply to: HypER to HypO almost overnight? What is going on?!?! #1064782

If you have been taking ATDs, they actually can create these kinds of dramatic fluctuations in your blood levels (with a large enough dose), and you can correct the slide with a lower dose of ATDs.

If that’s not what’s going on with you, then you may want to look into whether you also have Hashimoto’s Disease ~ it’s a separate autoimmune disease in which the antibodies force your body to go hypo, and several people we’ve met here have both Hashimoto’s and Graves’. When a patient has both conditions, thyroid hormone levels depend on which antibodies are dominant "that day," if the patient’s thyroid is still functioning. Once the thyroid is destroyed, neither set of antibodies can affect levels, it’s all synthetic replacement hormone.

I hope you get this figured out soon! That particular roller coaster is NO fun.

[Ski]

in reply to: Tired of being tired #1064821

It is possible that you’re beginning to show symptoms of pretibial myxedema, which is a kind of "orange rind" rash we can get on our shins (and/or upper part of the feet, I think), and it represents the third known condition in what some doctors are now suggesting may be the "syndrome" of Graves’ (the other two being the thyroid condition and TED). It itches like the dickens, and can be treated with steroid creams. A dermatologist can do a biopsy to find out for certain. Symptoms can come and go randomly.

[Ski]

in reply to: New to the site, Diagnosed with Graves in March. #1064816

Hi there,

If by "aging," you mean that your skin is very dry, that’s pretty common with hyperthyroidism, and yes, it resolves with successful treatment.

The issue with your eye is likely Thyroid Eye Disease, which comes along with Graves’, but is not caused by the thyroid disease (or affected by thyroid treatment). You should see an ophthalmologist for a consultation ~ TED has a "hot phase" in which symptoms change often, and during that time the potential treatments/surgeries are not recommended, as they can complicate matters while things are in flux. Still, it’s a good idea to develop a relationship with an ophthalmologist so that you are absolutely certain your vision is not at risk.

The fact that you’ve lost your insurance is a tough blow, but please don’t allow it to stop you from seeking treatment. The medications for the thyroid disease (ATDs) are relatively inexpensive, and they can allow your body to start the healing sooner rather than later, which can save you a lot of difficult times.

You will need to see an endo for the thyroid disease, and preferably one who specializes in thyroid disease. You will also need to see an ophthalmologist for the eye disease, again, preferably one who has a lot of experience with TED patients (check http://www.asoprs.org for doctors who have specific training in this condition).

You may be able to find a program that will assist you with paying the doctors, or you may be near a teaching college that offers treatment at lower rates. Please look into all your possibilities, because hyperthyroidism left unchecked can be very dangerous.

[Ski]

in reply to: Grave’s afteeer treatment? #1064838

If your levels have only been normal "off and on," then you’ve never reached stability and your body has not begun to completely heal. Once you can maintain normal levels that are right for you, you should begin to feel better, bit by bit. It’s not the end of your improvement yet.

[Ski]

in reply to: Grave’s afteeer treatment? #1064836

Euthyroid is the state of being at normal thyroid hormone levels (the third in the set of hypothyroid, hyperthyroid, and euthyroid).

Remission is defined as any period of time longer than one year when you remain euthyroid without having to take anything at all ~ no ATDs, no replacement hormone.

Typically we are all aiming for a euthyroid condition, no matter how we get there. If we are taking ATDs and remain euthyroid, great. If we are taking replacement hormone and remain euthyroid, great. All are euthyroid, so that’s a normal condition for the body.

We are not really sure what part of Graves’ exists after the thyroid condition has been successfully treated. They’re still trying to work out whether TED is actually a piece of Graves’, or whether it is its own separate entity that just happens to occur in almost 100% of Graves’ patients (but also occurs in patients with other thyroid conditions). Pre-tibial myxedema seems to be one element in the "syndrome" of Graves’, and like TED, can occur and go into remission on its own, without any relation to our thyroid status. So again, some relationship, but it’s uncertain what exactly that is.

We do know that some people here appear to be having continuing difficulties of one sort or another, separate from TED or PTM, even after having reached a euthyroid state. That is currently being researched, and we’ll probably learn where that stands at the conference.

Hyperthyroidism is extremely dangerous. Before treatment was available, it proved fatal about 50% of the time. That’s why we get treated. Once that problem is addressed, the other conditions (if any ~ as I said, no one’s sure of the connections) are not life threatening, so they get less attention in the research community.

[Ski]

in reply to: more use of this site family please post #1064911

If you’re already a member of Facebook, you can just search for "Graves’ Disease Foundation" and it’ll pop up so you can become a member.

[Ski]

in reply to: hair loss help #1064850

As Kimberly mentions, our hair loss issues are typically transient ~ the body removes resources from our hair and nails while our thyroid hormone levels are abnormal OR while they are "traveling" rapidly ~ so such a hairpiece might actually be more than a patient would need. In addition to that, it "stresses" the hair by being woven within it, so might actually cause more hair loss than would typically occur. Just an FYI.

Our usual recommendation is to do something with your hair that requires VERY little fussing (short cut, no color, nothing you need to tug, blow dry, chemically treat or use heat) until levels stabilize within the normal range. At that point, good, strong hair will return and you can go back to whatever you used to do.

[Ski]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064863

Believe me, I’ve been hanging around this BB for more than ten years, and I have never heard numbers in that range following RAI. A lot of people experience some gain, and the reasons for that are complicated, but most can return to normal activity (with some REAL willpower to continue), and get their weight back into or near their comfort zone. I think we also need to remember that because it takes so long to get completely well, we have also aged by the time we feel our best, and that comes with some weight issues all by itself.

Those who pay close attention to taking care of themselves typically have success with their weight issues, though no one escapes SOME weight gain because you lose muscle mass when hyperthyroid, and when it returns it adds weight. It is very necessary. The issue after that is the condition of that muscle tissue ~ it’s new, weak, and needs to be gently and carefully strengthened before it will act like the muscle tissue you initially lost.

[Ski]

in reply to: I’m pregnant! #1064916

Emily, how exciting! I can’t really add anything to the conversation right now, but I wanted to send congratulations! ” title=”Very Happy” />

[Ski]

in reply to: Help #1064938

Hyper’s very weird ~ it gives you energy but it’s CONSTANT, so it wears you out. Imagine your car with a brick on the gas pedal. Push the doctor’s office staff to make sure *someone* reaches you, even if the doctor gives instructions to a nurse to pass along information to you ~ you need to talk with someone and find out what your next steps are.

[Ski]

in reply to: Overwhelmed #1064918

Hi Mish,

First let me say welcome to the group ~ I’m so glad you finally got the right diagnosis, you are a living example of how hard it can be! One of our main challenges is HOW to find people like you before they’ve had the right bloodwork done ~ it’s impossible, right? Would you have looked for Graves’ Disease before someone put the name in front of you? That’s just my own personal rant against "the system" ~ again, welcome, and we’re so glad you found us!

We’ve been there, the symptoms are horrid, it does help to vent, so feel free to do it here. Often, family members are not particularly supportive, especially if none of them has had any sort of chronic disorder, so we’re the right audience, we understand! Maybe we can even give you a hand with feeling well again, or at least learning how to deal with your new reality.

Let me just say that you WILL get back to something you know as normal, but it will be a while, especially since it’s been so long just getting the diagnosis. All of that time, your body was under assault. So bringing your levels back into the normal range will signal the *start* of your body’s ability to heal itself, not the end of the process. In the meantime, you will need to close ranks and do only those things that are critically important to feeding your body and your soul. We usually start to feel better pretty quickly, but getting back to "normal" is something else entirely.

Your doctor also sounds typically perfunctory ~ check, no can’t do that; check, no can’t do that; okay here’s the answer for you, take these and call me later. ” title=”Very Happy” /> Sorry about that ~ endos are the busiest doctors there are, and many of them take to this particular style of treating patients. In truth, you can bring your levels down with ATDs (that’s the methimazole), and then you can start to feel better, then you can choose between the three options for treatment. Once your levels are normalized, you can be a candidate for surgery, and RAI may not be "out" for you. ATDs are a valid option as well, I’m just saying that it’s your choice, barring any other sort of conditions that would preclude using any of the potential treatments. Listen to your doctor and sort it out yourself. It’s hard to get used to the concept of treating our doctor as an advisor, rather than the boss, but it’s better for GD patients especially. This is complex, and dealing with it is difficult. Having just a little power over our treatment can help immensely, and I have noticed that patients who have actively chosen one treatment over another have better outcomes ~ no matter which treatment they chose.

Now, about Thyroid Eye Disease ~ it has been found that almost all of us have *some* level of TED symptoms. A very small percentage end up with the worst symptoms, and smoking has been conclusively tied as a contributor to those with the worst symptoms, but of course there are always variations (it isn’t that 100% of people with the worst symptoms are smokers, in other words). An ophthalmologist is the best doctor to evaluate your condition, and it’s good to see one before the symptoms get very bad so they know how you looked "before," in case there’s an "after." For many, there is no leap into the worst symptoms, or even much that people would notice. TED is another autoimmune condition, so stress (or, more accurately, our response to stress) can cause the symptoms to worsen. A zen-like attitude definitely helps with both TED and GD.

RAI has been shown, in one study, to have the potential for temporarily worsening TED symptoms in the months immediately following treatment. For someone with extreme issues, this is a good reason not to use RAI for GD treatment. For people with minor to moderate TED symptoms, you can eliminate the potential worsening with a short course of steroids (which, of course, have their own side effect issues). RAI does not cause TED, does not permanently worsen TED.

I know this seems like a lot of information, but it’s just skimming the surface. Search around the BB and you’ll find MUCH much more stuff that you’ll find extremely helpful. I just wanted to make sure you got some response rapidly.

Wishing you luck in your treatment, and I hope you feel better SOON!!

[Ski]

in reply to: Help #1064935

Look at the normal ranges given on your test results (each lab’s normal can be different, due to their testing methods) ~ if your TSH results are lower than the normal range, and your T4 level results are higher than the normal range, those two pieces put together would mean that you are hyperthyroid right now. Check with your doctor to get clarity on what they’ve discovered and what the next steps might be.

[Ski]

in reply to: TED sufferers PLEASE STOP SMOKING!!! #1064964

Thanks so much for posting your personal experience ~ it speaks louder than a hundred studies. ” title=”Very Happy” /> If you help even one person get through the experience of TED with less symptoms, you’ve done a very good thing!

[Ski]

in reply to: Lost…. #1064977

We’re so glad you found us! Sorry you need to join the club, but it’s good to have a community of supporters!

I can’t give you much of a response right now, running to the next thing for today, but I wanted to make sure your post got approved/posted so you could gather some responses.

Things WILL get better!

I notice you posted twice, I’m going to delete the other message ~ it’s not a "bad" message, just a repeat. ” title=”Very Happy” />

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