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in reply to: eye problem and headache #1075521
I think Ski is on the right track. IT is probably coincidental. The eye disease can cause headaches due to the swelling taking place inside the orbits. Some people like cold packs, and others prefer warm packs, but either make give you some temporary comfort. You do need to see an ophthalmologist or neuro-ophthalmalogist. Just ask if the person deals with Graves’ eye disease.
Keep us informed, and good luck.in reply to: Can Thyroid Supplementation Cause Graves’? #1075477Actually, we are in the process of getting a support group there in Los Angeles, so don’t give up. Send your name and address to the President so we can keep you in that loop. pjf804@hotmail.com
in reply to: Information for ALL stages! #1075518It is called "spontaneous globe subluxation", and means the turning inward of the lower eyelid (it can be the upper eyelid), such that it positions itself behind and/or below your eye rather that in front of your eye. It is a strange feeling at best, and frightening at worse. When it happened to me, it was the only time I have called my eye surgeon at home! Like you, I was just rubbing my eye. Lots of warm compresses, and stretching the lower eyelid while it was "relaxed" got it back in place. I don’t think I touched my eyes for a month. It doesn’t actually come out of your head, because it is attached to all the muscles and your optic nerve. BTW, I don’t have that phrase at the tip of my tongue. I had to contact Jake to get it!
Does anyone else hate all the "eyes" that we have to see at Hallowe’en?
in reply to: Can Thyroid Supplementation Cause Graves’? #1075475Welcome to our community. I honestly don’t know the answer to this, but will send it to our Medical Director and get an answer for you. In the meantime, please read as much as you have time for, and get a good background on Graves’.
in reply to: Thank You for the Validation #1075530Cathy,
The end of your post asked about lipids returning to normal after stabalization? As far as I know, the answer is "no one knows". Maybe a better question to ask is something along the lines of: Am I doing everything I can to bring them down? Exercise? Nutrition? Habits? Is now a time to consider medication? Are they high enough that you are concerned about your heart? The other things to ask yourself include: What do I not have any control over? My gender? My age? My genes?
It seems to me that when you have as many checks as possible in the Control list, and understand the checks in the No Control list, that it is time to have a dialogue with your physician. For me, it was about five years ago, and I have done very well on a low dose of a generic statin medication. That part is between you and your doctor.
in reply to: Just diagnosed with graves. #1075511You will meet many people here who will be able to validate your present symptoms, fear of the unknown, and that feeling of "un-me". We have all been there–and it was awful! They will also give yhou a great deal of HOPE. Things WILL get better. You are probably being faced with treatment decisions, among other things. Let us know what information you need, and we will see to it that you get it.
in reply to: Information for ALL stages! #1075516Dear Candace,
You have learned some things the hard way, and you are quite correct: Graves’ eye disease is completely unrelated to one’s thyroid status. This is confusing, because most of the time, they occur simultaneously. A person can have only thyroid eye disease (a very confusing name), and may develop Graves’ many years later; or the other way around, Graves’ first, and years later the eye disease.
"Your levels are fine” is a perfectly valid statement, but wouldn’t it be nice if it were followed with "Let’s see what else may be going on" OR "I don’t know what is wrong, but let me refer you to a thyroid specialist, or someone with more experience".
The standard of care for Graves’ Disease is TSH, Free T3 and Free T4. You may not get a lot of cooperation with having antibodies monitored (but having them measured is reasonable). Two reasons: one is financial (insurance companies will not be willing to reimburse for them), and the other is practical (you are working with the results of higher antibodies, as opposed to the effects of them).
Neuro Ophthalmologists probably have the most experience with the problems that thyroid eye disease presents, although there are good Ophthalmologists that can take care of us quite well. Probably the main factor there is experience.
I hope you find folks here that do care, and understand, and empathize with you. In fact, I know you will be hearing from them.
in reply to: Radioactive Iodine Treatment on Teenage Girls #1075612Thank you for sharing about your daughter. I am sure we would all like to know how she is doing as she goes through her recovery. To any parents reading this: If you do not have a copy of the bulletin "Students and Graves", please e-mail me, and I can send you a copy as an attachment. "nancyngdf@bellsouth.net". The other parents will attest to its usefullness.
What a lot of autoimmunity/thyroid. I guess that takes care of the genetic part?! What I have always been told is that compared to a population of people without autoimmune disorders, we will have a slightly higher number of occurances of another autoimmune disorder than the number of autoimmune disorders that the "normal" group will develop, but that number is not statistically significant.
If there are a lot of different autoimmune disorders in your family (diabetes, lupus, arthritis,…the list is quite long) your chances are obvbiously greater, because you now have an additional genetic factor influencing your health. Throw in a lack of support system, living in a huge city vs. living in a small town, health habits (smoking, nutrition, exercise…that list goes on, too). There are some things you have control over, other things that you do not (gender, age, your genetic predispositions).
Educate yourself as much as possible (get a family history when possible); learn about the illnesses that "run" in your family; change the things you can; and get a yearly physical with a doctor that will listen to your concerns and check for them. At that point, you have to give yourself a break. You will have done everything you can. You deserve to live a worry-free life (not one where you don’t pay attention, Scarlett!)
in reply to: graves eye disease #1075684Ski (as usual) gave you a great reply. It is unfortunate that what you are reading is that the muscles almost always turn to scar tissue–that is simply not true. It does have some to do with age, as Ski says. About half the people with severe eye disease simply have it "go away". However, they are NOT on the Internet telling everyone about it. They are walking in the sunshine, faces to the wind, and in many cases have forgotten about their eyes. If someone asks them, they will remember, and are very glad their eyes got better on their own.
That leaves the "other" half–of which you are not necessarily a "member". There are things that the doctors can do while you are in the active phase. They may tell you that some things have to wait–and they do. That brings us to the dreaded "P" word: PATIENCE. If there is one thing Graves’ patients are not, it is patient. That is one of the hardest things about the eye disease. While you can take medication (steroids) to see if they help at all, most of the time we are just [im-patiently] waiting. All those things Ski mentioned will help you make it through from day to day. Stay in touch with your doctor. There is a radiation treatment (focused x-ray beams) can only be done in the active phase, but they want it to almost have run its course (there’s PATIENCE again). I didn’t know about that early in my eye disease (back in the dark ages), as it had just been "invented". There was a time I would have been a perfect candidate.
Anyway, even if what seems like the worse case–your muscles do scar, you are not stuck with this forever. There are lots of procedures that do work. Again, stay in touch with your doctor, and stay in touch with us.
in reply to: my child has graves disease and more #1075704There are antibody tests that can help get a differential diagnosis. TSI – Thyroid Stimulating Immunoglobulin is one, and there are about three others. TSI is the main one. Subclinical hnyperthyroidism is sometimes hard to diagnose with just a TSH. In his book, Overcoming Thyroid Problems by Jeffrey Garber, MD, he mentions specifically that children may grow faster than is usual, and appear tall for their age. The other symptoms he mentions are behavioral changes, inability to sleep, and short attention spans.
in reply to: Choosing Thyroidectomy on Purpose #1075728Thanks for a wonderful endorsement of surgery. I like the way the board is set up. Hopefully, I will be able to refer someone back to this post when the question comes back up. Glad to hear you are doing well, and glad yhou are here with us.
in reply to: Cushings Syndrome #1075646Cathy,
Thanks for a good, sound answer. I am guessing that you are a certified nurse midwife? My certification is in Psych. I’ve been an ARNP in Florida for 30 years! I just did the math! Now I feel old! I have been doing Hospice nursing for the past 2 1/2-3 years. It is a nice shift, without totally leaving the world of psych.
Nancy
in reply to: Cushings Syndrome #1075645Good response from cathycnm! You might also find some good information on the Pituitary Network. They give excellent, accurate information. Somehow they are no longer in my favorites, but they are an approved site.
in reply to: Daughter just diagnosed #1075678Ski gave you the information we got at the conference. This is the 4th or 5th 3 y/o in about three weeks! Did the Pediatric Endo tell you more specifically WHY the recommendation of RAI? Sometimes children (as well as adults) are not able to tolerate the anti-thyroid medications, and then one of the other two treatments becomes necessary. Let us know if there is more to the story. Take care. I, too, am glad you found us.
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