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in reply to: Kimberly is our newest BB Facilitator #1066637

How great is that!?? ” title=”Cool” />
Kimberly ~ thanks for everything you’ve been doing all along, and thanks for taking this on!
It’s GREAT having you here! We’re all very lucky to have you. ” title=”Wink” />

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in reply to: Dear Thyroid #1066844

Couldn’t get the word "limerick" out of my mind, what IS it about that form of poetry??? ” title=”Very Happy” />

Here’s one for y’all:

A person who has Graves’ can seem revved up,
They’ll be hot, anxious and messed up.
Once they find GDF,
And choose their treatment pref,
They come back to give the next guy a heads up!

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in reply to: Dear Thyroid #1066843

But I’m definitely laughing! That’s gotta count for something.

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in reply to: Lots of tears #1066649

So sorry to hear you’re going through this ~ as far as whether to call it Graves’, I think that’s just a misunderstanding among doctors. The eye disease is actually a separate disease ~ once upon a time it was routinely referred to as Graves’ Eye Disease, but lately it’s more commonly called Thyroid Eye Disease (we refer to it as "TED"). It may come from the same antibodies, or just similar antibodies, but it commonly occurs in people who have had Graves’ thyroid disease at some point. Your ophthalmologist is the right doctor to treat TED. The one you’re seeing sounds like they know what they’re talking about.

TED antibodies invade the tissues (fat and muscles) behind your eyes and cause swelling, which then causes the discomfort and difficulty of movement and bulging. It’s very common to have one eye more affected than the other.

Radiation can help keep your swelling down. Typically the effect lasts as long as you are still doing radiation, though you can also use prednisone (oral steroids) to reduce swelling. Steroids and radiation do carry some risk, so you should have a frank discussion with your doctor about the risks and benefits, and make some decisions together. TED has a pretty standard disease curve where you have a period of changes, followed by some stability, then a bit of improvement, and finally everything quiets down. At the very end (cold phase) you can pursue surgical remedies to the symptoms that remain. That can take time, and it’s hard to wait. Until then, it’s wisest to avoid surgery, because it can cause a re-invigoration of all the worst symptoms. During that period of time, if your vision is threatened, radiation and steroids are the most common remedies.

Search on the board for "TED" and I’ll bet you find a GREAT deal of information. Glad you found us. ” title=”Wink” />

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in reply to: How long did it take you to go hypo after ablation? #1067065

Cytomel can be very potent ~ recent studies find that patients see improvement immediately, but over time begin to suffer from hyperthyroid symptoms again, for the most part. Very rarely, someone’s body has trouble converting the T4 (Synthroid) to T3, but most of us are better off without T3 supplements.

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in reply to: Need some encourgement please! #1066693

Hyperm ~

Thyroxine isn’t really a "medication" per se, it’s chemically identical to thyroid hormone, so it’s much more likely that your continuing issues have to do with the fact that you have not stabilized at a good thyroid hormone level for you yet. The fact that you were on it before through block-and-replace would create a different set of circumstances, chemically, in your body, so it’s hard to draw parallels from then to now.

Just my two cents, gotta go! ” title=”Very Happy” />

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in reply to: Ignorance or Arrogance? #1066677

Hi hubb,

If you’re looking for things that will help you be healthier while you pursue ATD treatment, then look to a nutritionist, find out what is lacking in YOUR system, and supplement that. It’s best to target your own specific deficiencies than to take what everyone else takes, if you know what I mean.

Remember that Graves’ Disease is an autoimmune disease, which means your body has developed antibodies that see your thyroid as foreign tissue, and they are bent on destroying it by causing it to overproduce and, ultimately, burn out. Your immune system is "triggered," or "activated" by stress. When your immune system is activated, the antibodies that attack your thyroid are also activated. This means that controlling stress can help to minimize the antibody attack. We cannot live without stress, but we can do things to limit it’s effects on us. Whatever works FOR YOU, again, is the most important thing. What others do for themselves can be helpful input, but the important thing is to find those things that work for you, and take advantage of them. Yoga, meditation, hot baths, funny movies ~ all of these things can, theoretically, work to bring your stress levels down. In addition to that, be good to yourself in all ways. Do not accept invitations that stress you out. Do not sign up to be a "point person" for some activity that promises to elevate your stress level. Get your rest. Learn how to let things roll off your back. ALL of this can help the ATDs be successful for you.

We all wish you luck! ” title=”Very Happy” />

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in reply to: Please help… #1066743

The rash we can get on our legs is called pretibial myxedema, and it is one of the rarer manifestations of Graves’ Disease, but it only occurs on the shins, ankles and feet, so a rash elsewhere on the body would not be the same thing and could well signal a severe allergic reaction to the ATDs. SOME people are able to take Benadryl along with the ATD, and after a while their body becomes somewhat acclimated to the ATD and they can continue to take it. Others find progressively worsening allergic reactions, which can lead to anaphylactic (sp?) shock, so keep your doctor well informed about what’s going on, for your own safety.

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in reply to: A Confusion about Graves’ disease #1066704

A simple blood test can confirm hyperthyroidism, and a thyroid uptake/scan can confirm Graves’ Disease. If you are not confident in your doctor, definitely seek a second opinion.

Unfortunately, if you have Graves’ Disease, your thyroid is not going to just "go back to normal" on its own, this is far more complicated than that. SImply put, Graves’ Disease is a chronic autoimmune disease in which your body makes antibodies against your thyroid. The way the antibodies work is that they attack the thyroid and trick it into making too much thyroid hormone. There is, at present, no way to "deactivate" these antibodies without destroying the entire immune system, and of course we wouldn’t want to do that. So you have some options ~ you can take anti-thyroid drugs (ATDs), or you can remove your thyroid through RAI or surgery.

If you can take ATDs successfully, they can keep your thyroid hormone levels in the normal range, but you should make sure you are vigilant about taking them correctly and also get tested regularly so that you can reach some level of stability. There is a 30-40% chance that you can achieve and maintain a remission (defined as a period of one year or longer with normal thyroid hormone levels while taking NO medication), but you should take ATDs for a year or two before you attempt that. Still, even if you do not achieve remission, you can choose to remain on ATDs longterm in order to manage your thyroid hormone levels. Some doctors would prefer you don’t choose that, but it is YOUR choice. ATDs have a couple of rather scary potential side effects, but those usually appear quickly and they will disappear once you stop taking the meds. If you experience one of these very scary side effects, you’d have to choose something else for treatment, so it’s always good to get information about the other options, even if you’d prefer to use ATDs. They can be dangerous to a fetus, but one is preferred over the other during pregnancy, and with successful management at small dose levels, those dangers are minimized.

If you choose RAI or surgery for treatment, you’ll need thyroid hormone replacement afterward, in order to replace the thyroid hormone that your thyroid can no longer deliver. It’s one pill a day, and it’s exactly the same thing as your body would make, chemically, so there are no side effect issues with replacement hormone. The only dangers of replacement hormone are getting too much (which would make you hyperthyroid again), or too little (which would leave you hypothyroid), and the "cure" for those things is to take the right amount, which is maintained through regular blood tests to make sure your levels are stable. Initially, just after the thyroid is gone, it can take a while finding the right dose, but after you’ve gone through the process, things remain pretty even-keeled and you can rely on tests annually just to make sure everything’s fine.

This is a tough disease to have, for many reasons ~ hyperthyroidism causes loss of bone mass, muscle mass, and emotional changes, among other things. Education is power, for a Graves’ patient. There is a book called Graves’ Disease: In Our Own Words, put together by our very own founder, Nancy Patterson, and beloved BB founder, Jake George, that includes a LOT of great, basic information on your options, pros and cons, and also includes many former posts from this very board, along with answers from our medical board. I have found that an informed patient is usually a happier patient, no matter which treatment they choose.

Good luck! Come back often, we’re happy to help you. ” title=”Very Happy” />

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in reply to: Went hypo..on levoxyl..when does it kick in? #1066708

I am glad you’re moving along in the process! It’s impossible to say what is "full replacement" for anyone, so just keep getting monitored and dial in your best point on the normal scale. Even after you’ve reached that, and your levels are stable, you should continue being tested at least annually, because many things can change our body’s need for thyroid hormone replacement (age, weight, activity level, hormonal status, just to name a few), and since our thyroid no longer operates with the pituitary feedback loop in adjusting our levels as necessary, we need to keep our own eyes on it.

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in reply to: Armour Thyroid vs. Synthroid #1066773

Recent studies using T3 replacement along with T4 (which is what Armour does) have shown that many people feel better taking Armour AT FIRST, but the effects either subside or the potency of the T3 begins to cause problems that feel very much like hyperthyroidism. A very tiny percentage of patients may actually need additional T3 due to problems converting T4 to T3, but it is uncommon.

For most people, taking T4 and relying on the body to convert it to T3 is sufficient.

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in reply to: Taken off methimazole in Dec. back on in Jan. #1066755

Bobbi gave you great information ~ I just thought I’d pop in to say that the conventional wisdom is that we should be on ATDs (methimazole or PTU) for at least a year, preferably two years, before going off them and attempting remission.

It’s true that longterm ATD use can be effective, and some patients find that, once they’ve arrived at a good level, they can take truly infinitesimal doses of ATD to remain stable.

These are tough choices, but we are fortunate that we have three options to return us to health. There are some autoimmune diseases that leave the patient with no options but symptom control, and only one option at that. While none of our choices are perfect, it’s still a good thing that we have a choice.

And one more Little Mary Sunshine comment from me, the Perpetual Pollyanna ~ at least you know what you’re dealing with. I think the hardest part for most GD patients is the time after symptoms have begun, and before the correct diagnosis is made. After diagnosis is made, it’s a process to health, but you’re closer all the time.

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in reply to: Living through Graves disease #1067094

The mood changes are classic Graves’ ~ it has to do with the hyperthyroidism, and as that abates, you’ll notice the mood changes get less severe, and finally stop. One thing that helped me was to make sure that I took care of ME, because when I felt as if I was getting enough rest, doing the kinds of things I wanted to do, and taking good care of my soul (laughing a lot, looking at beautiful things, doing soothing activities), the mood swings wouldn’t be so bad, I could let more things roll off my back. That’s not to say I didn’t snap occasionally, over what I would have first thought to be something VERY minor. In those moments it can help to take a step back ~ give yourself a time out, and take a look at what’s really going on. It’s not that NOTHING can upset us, but we sometimes need to check ourselves and make sure we’re not blowing things out of proportion.

Here’s one thing to remember about them though ~ I’ve found that most of us have been somewhat non-confrontational people prior to our diagnosis, and having the extreme mood changes has led to certain … episodes, let’s say, where we’ve FINALLY "broken through" and spoken our mind, and the world has not ended. These particular episodes may lead to more, similar episodes, even after your mood swings are corrected, which would be more correctly attributed to the fact that we’ve learned we CAN do those things safely, rather than to say that the "condition" persists, if you know what I mean.

Just do all you can to keep yourself balanced, emotionally, and I think you’ll notice improvement. SMALL improvements to be sure, and it doesn’t happen all at once, but knowing what’s going on, and NOT BLAMING YOURSELF, is important.

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in reply to: Is My Partner getting Meds ? #1066776

Thyroid hormone replacement cannot be transmitted to your spouse through any kind of contact ~ it just doesn’t work that way. Have your wife see a dermatologist and see what’s going on, it sounds extremely painful!

The truth with thyroid hormone replacement is that we take a pill today so that we build up stores of thyroid hormone and make them available for use on a consistent basis, but it doesn’t act like pain meds or anything else we’re used to, where you taking it incrementally helps maintain a consistent level in your blood, so taking half in the morning and half at night shouldn’t make any difference at all in how you feel or behave. It might just be that you’d come to a level of consistency right around the time you made that decision, so it seems as if the two things are connected. Still, it won’t hurt you to do it this way, it’s just more complicated and more to remember.

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in reply to: strengths of levothyroxine #1066811

There’s another option too ~ I believe if you can find a compounding pharmacy (one that does their own "pill making"), you can dial in doses at smaller increments. The doctors would certainly prefer finding us a "regular," commonly-available dose, but if that fails, there are several options, including taking two doses on alternating days. My doctor suggested I take half a pill on Sundays only, and that works for me.

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