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in reply to: How long on Methimazole? #1073955
Skinny_chic, what have you been doing to treat your hyperthyroidism since 1992?
in reply to: Home from the hospital 2/7/09 #1073855Hi Karen,
From what I’ve heard it’s not at all uncommon to have early hoarseness and need for calcium, and these nearly always turn out okay. I’m sorry you had a difficult time though, and as Carole said, how fortunate the cancer was found and removed!!
Hang in there and feel better fast, and keep the updates coming! I hope you have a very fast thyroid replacement adjustment.
Best wishes,
in reply to: NGDF membership? #1073851Peter is working diligently with the people who are constructing the new web page and it’s not too far from going online. I’ve seen a test version and it’s going to be great! In the meantime, I’m sure if you call the phone number given on the web page http://www.ngdf.org someone will be happy to send you a membership form.
in reply to: I officially have TED #1073847Was this your first CT scan? Do I understand correctly that you’ve had TED symptoms for over a year, but just now are receiving the official diagnosis?
If that is the case, then you may not have to worry too much about deterioration. Most of the time, eye changes occur for anywhere from 6-18 months and then stabilize into what’s known as the "cold phase". Stabilization of TED is more likely to occur if thyroid levels remain in the normal range, especially if hypothyroidism is avoided.
Other than keeping thyroid levels as normal as possible and avoiding all cigarette smoke, there’s nothing a person can do to affect the outcome of TED. It’s a disease with a life of its own. I understand how helpless this knowledge makes one feel. I handled it by deciding to cope with today’s trouble’s today, and not worrying about tomorrow’s (over which I have no control anyway).
There aren’t a lot of ways the ophthalmologists can tell when the hot phase is over except in retrospect, noticing that the eyes haven’t changed for six months or more. After that, for most people there is some degree of improvement over a period of time, but seldom a complete return to normal, except in very mild cases.
Some of the TED manifestations are more likely to improve without surgery than others are. Your doctors can give you an idea what to hope for in your case. It’s usually possible to reverse most of the problems one way or another, even if it takes surgery to do it.
in reply to: Heartburn and Hyperthyroidism? #1073913I believe BOTH of you!!!
” title=”Smile” />in reply to: Graves’ Diet for young child? #1073845At present there is no scientific evidence that any "natural" cures are effective for Graves’ Disease, or that there is any specific diet that will help.
That said, at the last GDF conference in San Diego, one of the doctors who researches the cause of Graves’ Disease was asked whether food allergies could play a role in triggering the antibodies for Graves’ Disease. His opinion was that food may play a role in provoking autoimmune diseases since the gut is part of the immune system. He said there are no good studies on this so far, however.
There are many other possible triggers for autoimmunity in people who have the genetic susceptibility, and so far no single one has been identified. On the list include viruses, hormones, severe stress, cigarette smoke (both first and second-hand), iodine levels, etc. Since it’s not known what triggered it in your daughter’s case, there’s no way to tell whether changes in her diet would make even a tiny bit of difference.
Regardless, eating healthier is a good idea for the whole family, as you said. For your 3-year-old, in the possibility that some kind of additive, preservative, pesticide, hormone, or allergen in her food has triggered the disease for her, eliminating it may or may not help even so. If this is the direction you wish to go, you can try the organic route or consult a specialist in food allergies or a nutritionist to help you decide on an appropriate diet. Be sure you do this (and everything) with the approval of her doctor, of course.
Is your daughter having trouble with her stomach? Not everyone who is hyperthyroid has stomach issues, although most have frequent bowel movements and some discomfort in that area. This varies from one patient to the next, and may be different in young children. You may be aware that this is relatively unusual (but not at all unheard of) in a child of her age. We met a girl who just turned 3 at the 2008 Conference in San Diego. If you want to get in touch with her mom, I could help you do that. Let me know.
Best wishes,
in reply to: Help me understand Me…. #1073863You’re right, not too many people understand what we’re going through, and it really is difficult! Give yourself a lot of credit whenever you are able to control yourself, because you deserve it!
I understand what you’re talking about, using fantasies to release some of your rage rather than actually doing the behaviors you feel like doing. I used that one a lot too when I was hyperthyroid. I also tried telling myself that it was only chemicals in my brain causing me to feel that way and I didn’t have to let them take control of me.
Once you get through this you’ll have a major advantage over most men: you’ll have some idea what women go through when they have PMS. The "Graves’ Rage’ is kind of like PMS, only worse. You should be very understanding of the women in your life, now that you know what it’s like.
I know it’s difficult to talk about how you’re feeling, but Graves’ Disease is a difficult illness for a teenager to live with and you shouldn’t have to deal with it alone. Even adults need a lot of emotional and psychological support. If you’re still in school, it’s normal for grades to be affected and for your friendships to suffer, and of course this also will affect your family. It’s important that your family understands the effect this has on you so they can be as much help to you as possible.
We have an informational bulletin called "Students and Graves’ Disease that I’d like to send you to give to your parents. Send me your email address by private message and I’ll send you a copy, okay?
Please hang in there and trust that better days are ahead.
Dianne
in reply to: How do I find the right DR?? #1073858Just for the record, if the endocrinologist is a good one, it’s really normal to have to wait months to get in to see him/her for the first visit, but usually worth it. I wouldn’t let that alone discourage you, because you may be eliminating the only good endos if you do that.
After that first visit, it gets easier.
Living in Phoenix you should have a pretty good selection of endos at Mayo. I wish I knew some, but am afraid I don’t. Good luck!
in reply to: Help me understand Me…. #1073861Hi Cherico,
Wow, what a difficult mix of hormonal complications you’ve been burdened with, at such a young age! No wonder you feel crazy! You’re not, I promise. You will get better.
Once your thyroid levels are stable you begin healing from all the damage that was done while you were hyperthyroid, but it’s not instant. Stable thyroid levels for a period of time is what it takes to achieve physical and mental well-being. I had a lot of difficulty controlling my emotions, going around in a perpetual state of inner rage even for a long time after treatment, but it’s completely gone now. I’m really mellow these days about most things, and it takes a lot to upset me now, just as I was before it all came on. You too will eventually mellow out.
If you still think about your ex-girlfriend, that’s normal too. Losses are difficult. Even though I’m happily married, I still think about the first boyfriend I lost. Being unhealthy can be a very lonely time, when you don’t have the energy to form new relationships, so it can be easier to dwell on the hurts of a loss than to move on into the future. It’s important for you now not to lose faith in that future where you will be feeling better and have the positive energy to have more rewarding relationships.
Do you think it would help for your dad to have more information about what hyperthyroidism does to the mind and emotions?
I’m very concerned that you’re feeling "like being dead". If you continue to feel that way it’s important that you talk to your counselor at school, or call a suicide prevention line. It’s not so much that this is being a coward, but it’s totally unnecessary and a really short-sighted, drastic, and final solution to a problem that has so many better answers. You’re going to feel better than you do right now. I promise.
If you can, get your parents to read what you’ve posted here and invite them to post. We can help them understand what you’re going through. If that’s too difficult, please stay around and let us know how you’re doing. We care!
in reply to: Dry eyes…driving me NUTS!!! #1073867Hi!
I too have severe dry eyes, so understand what you’re talking about. Have you tried wearing goggles that have moisture pads in them? I’m trying to think of the name. Do a Google search for the Dry Eye Zone, and you’ll find them there.
Have you tried having plugs put in your puncta (the little holes in the corners of your eyelids where the tears drain)? That can help keep the tears and drops in your eye.
Another disease that causes severe dry eyes is Sjogren’s Syndrome. Many people who have Graves’ Disease also have Sjogren’s. I’m still being tested for that, and my sister was just diagnosed with it.
You asked if the dry eyes will improve when the thyroid is treated. The eyes may improve somewhat when thyroid levels are normalized, but the eye disease is basically a separate issue. It will depend mostly on what’s causing your dry eyes. If it’s caused by eyelid elevation and other eyelid dysfunction that are a result of thyroid hormone stimulation to the muscle, then that part will improve when your levels are normalized. If it’s a result of some kind of autoimmune destruction to the tear-producing glands and you have lost some of your ability to produce tears, then you may not see much improvement. There can also lid retraction caused by scarring (fibrosis) to the lid muscles from antibody attack to the eye muscles. While that may improve somewhat in time, the eyelids may never function totally as they did before. It’s a very individual outcome.
If you haven’t seen a good ophthalmologist who treats Thyroid Eye Disease and/or severe dry eyes, that should be your next step as soon as you find out whether or not you do have Graves’ Disease.
I understand how much true suffering is involved with dry eyes, so I understand why you’re feeling desperate. Contact me if you need more help or information.
Best wishes,
in reply to: IMPORTANT QUESTION #1073903Ski is right. It takes time for all that extra hormone your body has produced to be used up, but the meds you’ve been taking are stopping what’s currently being produced from causing more problems (as long as you’re taking them), so as soon as you use up all that extra, you’ll begin to feel better. You may be only a couple of weeks away, so hang in there! I know it isn’t easy.
in reply to: Orbital Decompression Surgery #1074398Dolores, let us know how the appointment goes and how Steven is doing, and send my best wishes to him.
Dianne
in reply to: Heartburn and Hyperthyroidism? #1073910I’ve never had heartburn when hyperthyroid, but I get it immediately whenever my TSH rises and I become even a tiny bit HYPOthyroid, for what it’s worth.
in reply to: What if you do not treat? #1074028I agree with Ski. Some people who don’t feel well on Tapazole (methimazole) or PTU might feel better if they took slightly less of it (with doctor’s permission, of course), just as people on thyroid replacement sometimes need to take a little more replacement hormone to feel well (while still keeping TSH in the normal range). It’s important for people with the eye disease not to become hypothyroid while on ATD treatment, so close monitoring of levels is essential. If the TSH is suppressed (which it often is in Graves’ patients), monitoring of Free T3 and Free T4 levels both must be done.
Whenever I have blood tests taken I request that a copy of the results be mailed to me at home. That way I can keep track of how I’ve been feeling and see how it relates to my test results. For me, there has been a direct correlation.
I think the only people who feel better hyper are people who are only mildly hyperthyroid. (Those are also the only patients that a doctor would consider not treating.) "Burnout" is not the only end result of untreated hyperthyroidism. It can cause premature death, or it can simply continue indefinitely. The other possibility is a spontaneous remission.
in reply to: muscle pain #1073959CPK is Creatine phosphokinase, and is a test that if it comes back positive indicates muscle damage. "Non-cardiac" means he’s not looking for damage to your heart muscle. What’s your doctor looking for when running this test, you ask? You really would have to ask him, but you can guess that it will be related to the symptoms you’ve described to him.
It’s good that your doctor is working to find the cause of your problems. You’re wise not to stick with an endo who doesn’t take your symptoms seriously. Life is too short.
Best wishes,
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