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I am supposed to be facilitating the bb tonight, but Rachel has graciously responded to a plea for help. I am posting something from almost two years ago. It is almost as timely now as it was then.
I had originally sent it to Dr. Bucher, one of the two doctors that helped me start the foundation. His reply is attatched, too.~~~~ Original Multi-part post ~~~~~~
Nancy H Patterson wrote:
This is what the bulletin board used to be like. It is getting a little loose right now.
~^*Posted by : Nancy Patterson on 01/31/97 at 23:41:00
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 (debatable 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 with our 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 reports. 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 of them 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 a SASE
2 Tsitsi Court, Brevard, NC 28712) and write “#39” 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 doctor can usually get you 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 Mt. Sinai in Baltimore (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 surgeons 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 the lookout 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, because 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 is working really well, don’t take it for more than three months at a time, and have a LONG talk with your doctor about the side effects. 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 cheekIt feels pretty tight, and your eye is held shut by your cheek and the
tissue beneath your eyebrow. It takes about five minutes to get used to the feeling and then it is fine. Your eye(s) should stay shut, and the goop should stay inside. If the goop oozes out, you used too much.
The point is that there should not be much goop on the tape, but there
will be enough to 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 “gatekeepers” 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. Askto speak to the nurse, 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.
~~~~~Dr. Bucher’s response~~~~~~~~~~~
Some of Bucher’s Rules. Feel free to pass on:
1. RAI: Three strikes you’re out! Still hot, we talk to the surgeon. Rarely happens.
2. Weight: Once euthyroid you will assume your genetically predetermined weight. Just ask about the size of parents and grandparents. The patient always quits complaining.
3. Redux: Off the market, thank God.
4. Receptionist: Everyone (hospitals, doctors, businesses) always puts the puts the youngest, least experienced, poorest paid person they can find at the front desk. Think about it. They answer the phone and greet people like they are imposing. They don’t have a clue and don’t care about people-problems, what is urgent and what is not, what kind of customer they are (deadbeat or cash cow), who(m) may be suing who(m), who’s divorced from who and shouldn’t be given appointments the same day, and they don’t know how much time to schedule for what kind of
appointment even if they could figure out what kind of appointment to schedule. Disaster. The Office Manager should be running the front desk with a tight fist. Good article on this a couple of Medical Economics ago.You can’t run a business and not be there. You have to be into every part of it all the time. As one half of Mon & Pop Endocrinology I know. If Mom isn’t at the front desk, Pop’s life would be total chaos – not to mention that Pop would starve to death, & look shabby. Speaking of Mom, it is Valentines Eve and I have to go to a party with Mom.
Bye!
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