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  • Anonymous
      Post count: 93172

      This is going to be lengthy, so you may want to print it out. I am caught up with all the January postings, including the 50 that have posted today (and the West Coast is just getting off work!) and have tried to summarize by topic. They are in no particluar order.

      1. RAI – There was an excellent dialogue earlier in the month about how, and more importantly why, many of us chose to take RAI as our treatment. Education is power, and that is one of the purposes of this bb–to educate. Most important, remember that it is not dangerous (debateble by many of us, I know), does not cause cancer, and most important, WORKS WELL AND WITHOUT OTHER PROBLEMS for ALMOST ALL patients. We all have heard it, but here it is again: this bulletin board is primarily comprised of the approximately ten percent of Graves’ patients that have had continued difficulty adjusting to their illness. For those few people that have had to have a repeated dose of RAI: this is not common, but neither is it rare. However, if you are facing yet a third dose, I would urge you to seek a couple of different opinions, and one of these should be from a COMPETENT surgeon.We are here to support each other, and are doing a really good job of that! According to an e-mail I got from Annette today, all the “support-group.com” page got over 100,000 “hits” in January (and January isn’t quite over yet). Most of those are this bb. I have personally chosen not to post very often to the bb, but over the past two weeks have sent about 150 e-mails, and have quit counting the ones I have received! There are many excellent people out there who are responding on the board, so I’m not needed there. Thanks to all of you who have been giving such well thought out and accurate answers. I have enjoyed reading your posts, and I think I have been in touch with most of you. Keep up the good work.

      2. e-mail addresses – PLEASE, include your e-mail address so that people can write to you personally. There have been some people that I wanted to respond to, but there was no e-mail, so I didn’t. I say this every time, and will continue to ask you to so. Thanks.

      3. Weight – An on-going discussion. Remember that 90%? They are usually doing fine with their weight, too! [Hate ’em!] Yes, we truly have a problem without weight. There is only one solution and that is to get your level stable, eat less and exercise more. I KNOW we don’ feel like exercising, but this is one time I like to use Gail Devers as a role model. Also Pat Bradley, Ben Crenshaw [both golf champions] and many of us who have finally gotten serious about weight loss. Five years into my graves’ I put on about eighty pounds–30 of it was from the month on large doses of Prednisone, and the other 50 was from a year of being hypothyroid (TSH = high 30’s) My doctor was very supportive, and kept encouraging me. I still gasp when I see the videos of the 1995 Conference in Pittsburgh! Anyway, over the past year and a half, I have lost about sixty pounds. The point is: I have never changed the way I eat. I ate healthy then, and I still eat healthy food most of the time. Exercise is still a challenge, but that is what it is going to take to get the last twenty pounds off. Hang in there, keep being healthy, and remember that who you are does not necessarily equal what you look like.

      4. Anecdotal self-reports – Please participate in this. It will be both interesting and useful. I have another self-report to request: Please E-MAIL me the following information: Name, Nickname, e-mail address, geographic location, occupation, and NGDF member (Y or N), and Permission to use posts (Y or N). I will NOT use that information in any way (like bug you on your e-mail). There may be times that we would like to print some of the postings in the newsletter, and this bb is covered by the same copyright laws as anything else. It would give me an idea of what kinds of people are reading (or watching) the bb. My e-mail is “ngdf@citcom.net”. MANY THANKS.

      5. Purpose of RAI scans – Usually the scan gives sufficient information to go with the “clinical picture” (suppressed TSH, all our symptoms, history, etc.) to make a definite diagnosis of Graves’. It actually is what Bobbi pointed out: a measurement of the size, density, activity and location of the thyroid gland. It would indicate if there were hot nodules rather than diffuse nodularity, which would be the “differential diagnosis” (how to tell the difference between one hyperthyroid condition and another). The definitive test is the antibody measurement (TSI) but it is quite expensive, and in most cases, academic. In Catherine’s case, I suspect that an antibody test would be very appropriate. I just realized as I was typing this that perhaps it would help to keep track of the post number for some of these answers. I’ll do better next time. I have asked Annette about doing something about the particularily informative posts. We could call them “posts to ponder”, or the “best of the board”. E-MAIL me the number of YOUR favorite post.

      6. Lag in Lab Results – We may FEEL bad before it shows up on laboratory repots. This is a good reason to maintain an on-going relationship with your doctor [who knows your history] that will LISTEN to you. Have lab work done, adjust doseage, and read results when they get there. Meds can then be fine-tuned.

      7. Pituitary – It still “reads” our hormone level. It doesn’t know whether the hormone is ingested, self-produced or stimulated from the antibodies. TSH is now our primary mirror of the hormone level. It does not control the conversion or use of the hormones in our body.

      8. “S.O.” does not always mean Significant Other! There are many times we may need a Second Opinion – doctors, lawyers, therapists, etc.

      9. Yes, Graves’ builds character. Some of us have enough character to clean up Washington DC!

      10. The “Quotes from the Clueless” are very entertaining. Would someone volunteer to keep track of them, and perhaps we can put them in the Newsletter (see comment #4). E-MAIL me if you are willing to keep track. My personal favorite is one many of you have heard: “Are you sure you are taking your medicine?” DUH!

      11. Endocrinologists via the Internet – The American Association of Clinical Endocrinologists (listed on our Home Page) lists MD’s bystate. It is very simple to use. Go to “aace.com/directory/”, click on your state, and the whole list comes up. Some ofthem give their E-MAIL address. You can E-MAIL them and ask if they particularly see thyroid patients, and ask how many Graves’ patients. I do not know if the American Thyroid Association does the same thing, but will check and post to the BB.

      12. Listserv – Please remember that most of us are not computer specialists. It is all I can do to find the bb and e-mail, especially when it gets fine-tuned and adjusted. Please don’t change it until we figure out a way to do on-line continuing education.

      13. Hashimoto’s and Graves’ – It IS possible, but rare, to have both diseases simultaneously. They are essentially first cousins, bothing being auto-immune mediated thyroid disorders. The Graves’ MUST be treated first, then the Hashimotos treated, then the hypothyroidism managed–just like everyone else. If anyone has this, send me SASE (2 Tsitsi Court, Brevard, NC 28712) and write “339” in the lower left corner and I will mail that bulletin to you. It is written by Dr. Gorman (Debby Jass’ doctor at Mayo). Basically, a person with Hashimotos and Graves’ tests positively to both sets of antibodies, and feels REALLY crummy!

      14. Several of you have asked about starting Graves’ Disease Support groups in your area. The initial requirements are TWO stable Graves’ patients, and one physician who will sign off as back-up/resource. The do tor can usually getyou a room in the education department of the hospital where s/he admits, and the hospital will usually provide not only the room, but the monthly reminders, light refreshments, and have A/V equipment available. If you are interested, E-MAIL me your name and address, and I will ground-mail you an introductory packet. Membership in the NGDF is necessary, but after the first year, your membership fees are waived.

      15. CONFERENCE INFORMATION – The Sixth Annual Patient/Family Conference of the NGDF will be held in Colorado Springs, Colorado, August 8-11, 1997. It will be held at the Antlers Doubletree Inn, and the room rate is $95, single or double. The cost for non-NGDF members is $125, and for NGDF members is $95. For family members to attend there is a 50% discount for the family member. The speakers so far include Dr. David Cooper, Endocrinologist from Harvard (he has Graves’); Dr. Harvey Cohen and Karen Levanduskie, MA (Endocrinologist and Family Therapist, respectively), Dr. Harvey Walkov (Radiologist), Sherly Aycock, MA (Family therapist), and Dr. Codner, one of the surgeon that did the bone implants. I still have to contact a psychiatrist (I have a name). If any of you have any suggestions, E-MAIL names, addresses, phone numbers, and e-mail addresses. This will be the biggest meeting we have had, and I am looking forward to meeting lots of you in person. Call a travel agent and ask them to be on thelookout for good plane rates. It will take some flexibility in travel, but I can get there for $114.00 each way. When there are good prices, sign up, becausde there always a limited number of seats at the special prices. There will be a registration form on the Home Page soon, and you will send it to: NGDF COnference Registration, c/o Leslie Gustason, 51 Blue Sage, Littleton, CO 80127. If you want to get on a list to room share, contact Eloisa Crosby, 76 Road 5285, Bloomfield, NM 87413. Each person is responsible for making their own travel and room reservations, but Eloisa (pronounced e-loy-sa) will serve as a match-up coordinator. Anyone who has ever attended will guarantee that you will learn more (yes, even MORE than you learn on the BB), and have a great time. PLEASE COME!

      16. Redux and Phen-Phen – This is important enough to get its own separate posting. I just got the updated patient information from the manufacturer of Redux, and will type it in when I find it again. It is a potentially dangerous drug. If you are taking it, and it isn’t working very well, STOP TAKING IT> If you are taking it, and it isworking eallywell, don’t take it for moe than three months at a time, and have a LONG talk with your doctor about the sideeffects. It simply isn’t worth it for fifteen pounds. I know a lot of us are, or have been, taking it. Please be well informed. This is not a “get-skinny-quick” drug. More later.

      17. How to tape your eyes. There is a lot of confusion about this, so here are the step-by-step instructions. This was cleared with my eye dr. today, and tested by several people at my job.]
      1. Take MICROPORE tape, about 2 or 2 & 1/2 inches long
      2. Tear the tape in half LONGWAYS (now you have two pieces of long tape)
      3. Put the GOOP (DuraLube, LacriLube, etc.) on your lower lid
      4. Close your eye
      5. Place the tape above your eyebrow, approximately in the middle
      6. Push your cheeck up, to close your eye
      7. Put the other half of the tape in the middle of your cheek

      It feels pretty tight, and your eye is held shut by your cheek and the tissue beneath your eyebrow. It takes about fiveminutes to get used to the feeling and then it is fine. Your eye(s) should stay shut, and the good should stay inside. If the goop oozes out, youused too much. The point is that there should not bee much goop on the tape, but there will be enoughto protect your eyelashes when you remove the tape, from top to bottom, in the morning. I have been doing this for almost ten years, so am really used to it. The kind of tape (MICROPORE) is VERY IMPORTANT. Regular adhesive tape & silk tape is too sticky, and will pull off skin. Paper tape isn’t stickie enough. MICROPORE tape is semi-transparent, has tiny holes in it, and tears easily. Ask your pharmacist to help you find it, or order a roll. One roll will last for years. I used a bandaid once in an emergency, and still have a mark on my face where I pulled it off!

      18. Doctors office staff (nurses, receptionists, billing department, etc) are the “gatekeepes” to the doctor. It usually won’t do you any good to ask to speak to the doctor, because they ARE busy with office patients. The staff is usually polite, but concise. Ask to speak to thenurse, or whoever can get a message to the doctor, and ask that person to call you back with the doctor’s answer, or get a time when you can call back. Be specific with your question, so that there is an answer to be found. “Tell Dr. X that I feel terrible” is not very specific. “My pulse is 45 – 50, I have slept for 18 hours every day for the past three days, and haven’t gone to the bathroom for four days” gives them some information with which to work.

      19. Any of you can contact anyone else (via E-MAIL!) and go into the CHAT ROOM any time. Thanks to all of you who are registering for the chat room using your real name as your “name” and your nickname in that space. It makes it easier to have some idea of who you are. :-)

      You have been real champs to put up with all this reading. I have tried to correct all my typing errors, and as soon as I post this, am downloading a trial version of “www.spellchecker.com”. It won’t help with the bb, but it should clean up my E-MAIL :-)! I have been typing this for four hours. My eyes hurt :-(. Say goodnight, Nancy. (Assistant to the assistant to the assistant to the on-line facilitator, and the founder of the NGDF) ‘nite, all.

      Anonymous
        Post count: 93172

        Thanks, Nancy. I found this whole post very, very helpful. It’s in hard copy now, and going into my permanent file.

        Take care,

        Bobbi

        Anonymous
          Post count: 93172

          Thanks for the January summary – it was very informative.

          I’m new to this, and have been reading the postings.

          I understand there’s some sort of database you’re keeping of people with
          Graves. I’d like to answer, but don’t know how!

          Could you help?

          Thanks,

          Jeanne

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