[Ski]

in reply to: Switched Endo’s- very new treament plan…OPINIONS NEEDED! #1065704

Well, I can give a little input ~ ultimately, your treatment choice is YOURS, not your doctor’s, that’s the first thing. We were told at October’s conference that there is no reason to avoid longterm treatment with ATDs, if it’s working for you. Some doctors don’t "like" doing it, but they’re not the patient, you are. As long as you are having no severe complications (liver damage or lowered white blood cell count), there is no good science to discourage long term ATD use. The "old school" was treatment as follows: ATDs for 1-2 years, attempt remission, if unsuccessful, surgery or RAI. So, doctors who have not had updated information do continue to treat Graves’ patients with this strategy, and they believe they’re doing the right thing. I think when a doctor, looking at a patient that’s feeling overall pretty well, says "we must change everything about what you are doing," well, that doctor is perhaps a little on the bossy side, and not necessarily what we would call a "team member."

Your concern of treating to lab values is VERY important. As you’ve seen us write a million times (or more, probably), it is important to find OUR normal POINT, not just get our labs into the "green." If you continue to have symptoms, an attempt should be made to adjust meds slightly in order to see if that provides relief. It’s true, not every symptom IS thyroid-related, but since that’s what you’re managing, no harm in checking to see if slight adjustments help. It’s going to be tough for you to have a good relationship with someone who is resistant to that. I think dismissing your concerns by saying you may need treatment for anxiety is pretty flippant.

I hate to say it so soon, but it may be that you still need to find another endocrinologist. I know they’re hard to come by, even harder to find one who is taking on new patients ~ and in the end, perhaps your old endocrinologist, bad bedside manner and all, is the best one to treat YOU. It’s very individual, but it is SO worth the search when you find someone you can truly work WITH.

[Ski]

in reply to: Tendonitis/bursitis #1065730

Not that I know of, but sometimes the muscle weakness can lead to those injuries, I think.

[Ski]

in reply to: being weaned from methimazole #1065741

I’m sure you’ll get some great advice from people in successful remission ~ the only think I know to say is that you may want to have your antibody levels tested just before you stop taking it completely. Your odds for success are better if those antibody levels are low at the time. They don’t equate with your thyroid hormone levels, necessarily, but they CAN be a predictor of a potential relapse, so give yourself the best possible shot.

[Ski]

in reply to: Iodine and no thryoid #1065763

To be honest, so many packaged foods contain iodized salt that it probably makes no difference. If you’re trying to avoid iodine completely, you may have to take that into consideration, but if you’re worried that you’re not getting enough naturally without iodized salt, I’ll bet you’re getting plenty in other foods. Keep in mind, too, that as long as you are getting your thyroid hormone levels tested and they remain in the normal range, everything’s working fine.

[Ski]

in reply to: Why arent their ever any resources in my area? #1065747

There is also a method for types of "scholarships" available to people without means to pay for their trip ~ as well as a method for people on the other side of the equation to give extra to allow for those scholarships to exist. Don’t lose hope ~ check with the Foundation when the registration goes live. We’d love to see you there.

[Ski]

in reply to: Iodine and no thryoid #1065759

The only place iodine is used in the body is in the thyroid, to make thyroid hormone, so if you don’t have a thyroid, you don’t need to worry about your iodine intake. I still get salt without iodine though ~ the only reason it was ever put into salt was because in states far from the ocean, people had chronic thyroid hormone deficiencies. It’s odd, because sea salt actually does NOT contain iodine naturally, but being near the ocean seems to help us absorb more iodine without having it in our diet, so they added iodine to salt in an effort to curb the chronic deficiencies in the American mid-west. I had RAI too, so at this point, I figure if I don’t need it, why ingest it?

[Ski]

in reply to: EYE LUBRIDANT, EYE DROPS #1065782

Oh, and you can also look into tear duct plugs ~ some are removable, some are dissolvable, and they can help the tears stay on your eye longer so you don’t need so many drops. If your condition is more chronic, they can actually cauterize them shut if the plugs turn out to help you a lot.

[Ski]

in reply to: EYE LUBRIDANT, EYE DROPS #1065780

I completely agree with Bobbi ~ if it’s a question of your money or your sight, your sight wins. You may be able to get some cheaper prices buying online, check Amazon or Drugstore.com, they may have extra discounts or free shipping or bulk rates. If you are working and have access to a medical expenses account (money taken pre-tax and then spent only for medical expenses), the drops qualify as this type of expense, so you can at least take SOME benefit in the form of reducing your taxable income overall and having the money set aside. The way our fund works is that you commit a certain amount annually and a portion is taken out of each paycheck, but you can take reimbursement *before* you have accumulated as much as you’re being reimbursed, so there’s a tiny advantage there as well.

I am a little concerned with this comment though:

I am using them so frequently that I probably should use preservative free at least some of the time.

Preservative-free is essential, because preservatives cause their own irritation when you use the drops as frequently as you need to, then you end up using the drops for relief, but they are causing part of the problem. You may find that you don’t need as much if you always use preservative-free. Oh, one more thing ~ you can buy preservative-free drops in a bigger dispenser bottle that costs less per use than the individual units, and if you’re truly using them that much, it’ll end up being cheaper for you.

Are you covering your eyes at night? Perhaps you could use a little less of the gel if you can get a good cover figured out.

I thought there was a way you can have your doctor prescribe OTC drops, and the pharmacist just bundles them and sells them to you under your prescription rates, but I could be wrong (Bobbi’s very much up on these things!). Just ask your pharmacist, in case. I think the only prescription drops are steroid-based, and you don’t want to use those frequently, plus they would likely end up being nearly as expensive as what you’re using now.

You can also use other methods to reduce eye strain, like the big wraparound sunglasses (I know, I know, but they help!), tinted glasses when using the computer, resting your eyes as often as you can, remembering to blink (and hold the eye shut for a moment) more than usual, things like that. Every little bit helps.

[Ski]

in reply to: Tennis elbow type pain #1065787

I haven’t heard this one specifically, but if we lose muscle mass while we’re hyperthyroid, it can affect us in all kinds of weird ways, so that’s possible. I think that’s the only way it could be related to Graves’ ~ oh, unless you’re hypo and having muscle cramps, that’s common too. You’re doing the right thing getting it checked out, always better to know than to presume.

[Ski]

in reply to: ~Follow up to my insurance mess~ #1065799

I think the suggestion of your local newspaper or TV station’s "action line" or whatever they call it is an excellent move at this point ~ let THEM call the heavy hitters, they have their personal phone numbers and they can make things happen much more quickly. Get you out of the middle and let them get you what you need. As Bobbi said, the threat of bad publicity is usually a pretty strong motivator.

Call every one of your local TV news stations, they probably ALL have people who do this, and whichever one acts first gets the job. (And if multiple organizations clamp down, all the better.)

[Ski]

in reply to: question #1065789

Check with a pharmacist, they should know about potential interactions. Check the expiration too, since it’s left over from an earlier prescription.

[Ski]

in reply to: Anyone get increased liver enzymes or testosterone w/ GD? #1065792

I’ve heard of increased liver enzymes from the ATDs (methimazole or PTU), but not from hyperthyroidism itself. I’d be interested to find out what your doctor tells you about that. The increase in testosterone is interesting ~ again, let us know what you find out. And by the way, I adore your doctor already. Anyone who gets this involved in all of your chemistry is a good find.

[Ski]

in reply to: drippy nose #1065806

I haven’t heard of this particular symptom being associated with Graves’ or hyperthyroidism. I haven’t heard anyone else complain about it here either. I wish you luck in resolving it, let us know what you find out!

[Ski]

in reply to: Question about GD #1065810

I just wanted to address your comment about feeling as if your eyes were being "pushed out." If indeed what you are dealing with is Graves’, then an associated condition is Thyroid Eye Disease (TED), which is a separate condition that should be evaluated by an ophthalmologist. TED has its own disease course, but it is also autoimmune (like Graves’ thyroid disease). The methimazole would likely not do anything to change that, but having increased stress (due to uncertainties and also hyperthyroidism) could stimulate the antibodies that do affect the eyes, and that could bring on the feeling of having your eyes "pushed out." The antibodies cause the tissues behind the eye to swell, which is what brings on that feeling. There’s not much you can do about it immediately, but it’s good to learn about. Keep in mind that most patients do not get the worst of the TED symptoms ~ once you look it up, you’ll see why I say that.

This is a time to start learning about the things you’re dealing with, and getting them conclusively diagnosed so you can move forward and see clearly your path.

I’m so glad you found us.

[Ski]

in reply to: strange question about eyes but genuinely worried #1065813

I wish I could tell you that, but in extremely rare cases, patients have had multiple "hot phases" of TED. I think Jake is one of them. The other thing to consider is that it may not be TED, it may be that you had slight proptosis, and the vomiting has "expanded" the prior damage, if you take my meaning. But of course, the most important thing is to know for sure, not to guess and presume and try to keep your eyes shut while you’re being sick (you poor dear!), so I would get to your ophthalmologist ASAP to find out for a certain fact what’s going on, and what you may be able to do to alleviate the problem.

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