[npatterson]

in reply to: blepharotomy #1074274

Dear Kathy,

Did you see a plastic surgeon, or a reconstructive plastic surgeon? The difference is VAST! The various surgeries that are done for our eyes are NOT cosmetic, but are done to protect our vision. While the results may have us looking better (and most anything is better than looking like a bug eyed from that is hung over), that is not the reason for the surgery.

Be sure to ask questions to that effect. Ask if the doctor is a reconstructive surgeon. He/she will know and understand the difference.

I know of one woman who went to a plastic surgeon, neither of them iknowing that she had Graves’. Some of the tissue of her upper eyelids was removed for cosmetic purposes. Months later, when her eye disease became prominent, there was not enough tissue left to do the reconstructive surgery she needed. There was some solution, but it was extensive, painful, and NOT cosmetic at all.

[npatterson]

in reply to: Overall this board is mostly for surgery #1074254

Dear Grekson

You make me smile! Yes, we are all real people, real patients, with real Graves’ disease. Would the medical community take this much time? If it seems like this is all about surgery, it may be that it is one of the most-read posts. There are three treatments. None are quick, none are easy. Being on medication two weeks is not very long. You ought be be feeling at least a little better by now,m but certainly not "well" as in things are all better now.

You might want to specd some time searching all the archived messages, of which there are thousands–covering more than ten years. Search by key words – antithyroid drugs, PTU, methimazole.

Take care, and stay here for good support,

[npatterson]

in reply to: THROID – STORM #1074247

Judy,

You sound miserable and scared. Are your thyroid levels at all stabalized? You are talking about a number of things that could be thyroid-related, and if they aren’t, they need to be looked in to.

What you described is truly a thyroid storm, although they usually don’t occur AFTER you were treated, but before, and perhaps even undiagnosed. Those are really medical emergencies, as you now know ony too well.

If you are worried about your eye surgery, let us know what kind. There are lots of people here that have had eye surgery, and can give you lots of support and help you know what to expect.

[npatterson]

in reply to: anyone have Pretibial Myxedema? #1074912

You are right, antibiotics don’t work–because it is not an infection. Now that it has been "diagnosed", ask the doctor, nurse practitioner, physician’s assistant, to find out what type of hydrocortisone will help. There are different types and different strengths. Sometimes it is given as an injection, sometimes as decreasing doses of tablets–it depends on yhour case.
I was sort of laughing when I saw this post–misery loves company! Mine is trying to come back just this week.

[npatterson]

in reply to: Surgery, Change of heart :( #1074563

It is hard, no, impossible, to ever be totally sure that you select the treatment that is "right" for you. If you will e-mail me, I can send you a REALLY good article on thyroid surgery. nancyngdf@bellsouth.net.

[npatterson]

in reply to: How do you to find a great endo? #1074736

You have gotten some great answers! Primarily, I have found that good doctors refer to good doctors, asnd are not upset by you seeking a second opinion. NGDF knows many, but certainly not all, superio rthyroid specialists. One piece of advice I frequently give is to call the office of one who has been recommended, even if it is not feasible to go there. Tell them yhou have Graves’, the Graves’ Foundation suggested that yhou call them to get the name of a specialist in your area. They reequently know doctors in very small places, who are verty good dovctors but may not have the luxury of being members of the prestigious groups.

On the web, you can go to "www.thyroid,org". This is the website of the American Thyroid Assocviation. They are listed by state, and ALL are thyroid specialists. That is what makes them such a great reference. There is also the American Association of Clinical Endocrinologists
"www.AACE.com". On that site you scroll down (below the screen) to "Thyroid Disorders", and then list city and state. They6 are supposed to pick the three fields they treat the most. If you find one that then lists everything in the book, you will probably not find that one to do a lot of Graves’–but you can always call and ask. If the person has, indeed, listed three areas of specialization, you likely have one who does see Graves’ patients.

A couple of imnportant questions include: How many new Graves’ patients does the doctor see?, and how many Graves’ patients in all. Answers will range from several new ones every week, and 3-40 a week (You have a WINNER), to a few every year.

You can call the office for names of doctors who are members of NGDF, meaning they have enough interest in patients to support patient organizations. Again, feel free to contact us for names for referrals. We will help in any way we can.

Thanks to all of you for NOT posting specific names of doctors.

[npatterson]

in reply to: I’d like to start a support group in Alameda County, Calif. #1074609

Wow! It sounds like you are highly qualified to run a support group! The NGDF Support Groups have training, workbooks, etc. These are provided to you at no charge. IF you will e-mail me at "nancyngdf@bellsouth.net", I will send you the information. You sound as if you have done much of the work already. I can put you in touch with the former support group leader in Berkeley (one of our earliest support groups).

[npatterson]

in reply to: finding it hard to cope #1074688

I am guessing that you are from England? There is an excellent organization over there, The British Thyroid Foundation (BTF). Janis Hickey is their President. If you can’t locate them, here is her e-mail address: j.l.hickey@btf-thyroid.org. Their website is btf-thyroid.org. They have meetings in many places, on a regular basis.

[npatterson]

in reply to: Night-time eye closure bandage/mask #1074873

Dear Carollast,

I have been taping my eyes for years–too many to count. I have been through the micropore tape, patches, saran wrap, and anything else I can think of. Everything worked–for a while. When I began looking like a racoon with the eye patches, I was absolutely convinced the manufacturer had changed the formula for the adhesive and made it too strong. I finally figured out that my skin was getting older and thinner (another of life’s little wake-up calls!)
About three years ago, I was sitting in on a wound management class (yawn!), when the presentor began talking about a silicone tape that was used on infants and the truly elderly, and did not cause irritation. I really perked up at that point. I met with her after the presentation, and explained what I needed tape for. She gave me some, I tried it, and have become a convert! Another nice thing about it is that it can be repositioned, and actually re-used for several nights.
The product is called MEPITAC, and is distributed by Molnlycke Corp. I think it is made in Sweden. I believe their website is "www.molnlyckeus.com". I will e-mail the person I know, and ask how we can get the purchasing information.
I now take samples of the tape, and literature, to everything I attend. The doctors that now know about it and saying really good things about it.
I tried to search the archives for a longthy post I once did about taping eyes, but couldn’t find it. I will keep trying.

[npatterson]

in reply to: Lost Post – Question About Causal Link #1075226

Finally, the response from our Medical Director! I am sorry this took so long. He said that it would not cause Graves’ (meaning the autoimmune thyroid disorder). It obviously did cause you to be hyperthyroid, but without the antibodies.

[npatterson]

in reply to: TED Triggers? #1074884

Amanda,
I don’t think there would have been any way to "warn" you. You apparantly didn’t have enough eye signs for the surgeon to suspect TED. Did he/she do a pre-screening on you and did they know you have Graves’? One point I frequently try to make is that once we have Graves’, we always have it, even if we think we are in complete remission. If you wrote that you take thyroid hormone (that is usually an anesthesia question), but didn’t say that you have Graves’, no one would suspect any problems.
Stay involved, and keep us posted.

[npatterson]

in reply to: Comfort and Joy #1074962

I watch SISTER ACT! I really enjoy wrapping gifts, so I do it a lot. What’s inside may not be much, but the package is usually very pretty and interesting. People have learned to appreciate the wrapping, because no telling what’s inside. I’m from the era that got apples and oranges in your stocking, and socks and underpants for presents! Also, I like Christmas music. I am in the choir, and play lots of sing-along music in the car. Happy Holidays.
That doesn’t mean I don’t get down, but I try to work really hard at staying upbeat. My biggest pitfall is not getting enough rest. That will ruin just about anything, and keep me in tears.

[npatterson]

in reply to: Symptoms of Graves in Children? #1074981

Dear Cath,

We have an excellent paper of Students and Graves’ Disease. It talks about the symptoms in young children. Send me an e-mail (nancyngdf@bellsouth.net) and I will send it to you. As everyone else has said: Check with her Pediatrician, remember that your health is a part of her health history.

[npatterson]

in reply to: Surgery #1074927

Dear Hopeful,
If you will e-mail me (nancyngdf@bellsouth.net) I will send you some good, accurate information about surgery, as well as a brief review of all the treatments. Of course there are risks, but I think you will be relieved to read the information.

[npatterson]

in reply to: Post Surg – still have Graves? #1075301

Dear Lyn,
Pretibial Myxedema is relatively hard to miss, if it is fully developed. It is caused by the same antibody that attacks the eye tissues, which might explain some eye problems. As Ski said, it is separate from the thyroid portion of our Graves’, and can occur whether your treatment was ATD’s, RAI or surgery.
Usually it itches (alot!), is reddened, and feels somewhat like the skin of an orange. Go pick up a hefty naval orange, close your eyes, and run your fingers over the surface. "Swelling" (as in edema) may or may not be present. Two things that might help identify it are an antibody test, or a round of one of the steriods (obviouusly prescribed by your doctor).
There is not a lot written about it, and what usually is written is found in dermatology journals with a great deal of histological information.
My guess is that if you start a new thread on this forum with a title like "anyone have Pretibial Myxedema?" you will hear from those of us who have had it. It makes my legs itch just to type about it. Good luck!

[Author]

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