[Anonymous September 22, 1998 at 12:11 am Post count: 93172]

#1148000

Hi, all!

Kudos to Archie, Annette, Jake, and Jan!!

Sure is GREAT to see the BB up and running again, especially when we
can spread the word about a letter writing campaign that could affect
our future. Now is the time to use our experience and cohesiveness
to influence important decisions regarding treatments for Graves’.

Yes, Nancy, I’ll be happy to remind fellow warriors of this mission.
Besides, it gives me a good excuse to post!

I’m back in the full swing of school activities and have a tight
schedule. I apologize for any late email replies. Just know I’m
thinking of you all.

Wishing you health and happiness, Debby

[Anonymous September 22, 1998 at 2:33 am Post count: 93172]

#1049874

Hi everybody,

I have just returned from the American Thyroid Association meeting. It was a good meting, and some
important information came up. There is about to be a new rule proposed by the Nuclear Regulatory
Commission (NRC) that would require that RAI only be given by Radiologists or hospitals, and would no
longer license Endocrinologists. Those endocrinologists who are already licensed to administer RAI
would be “grand fathered in”, but no new licenses would be issued. I spent a lot of time with Dr. Jack
Baskins from AACE, going over their materials, etc. Obviously, the doctors are writing in, but we both
thought that letters from patients would be very important. WE are the ones that use this service. As an
example (a very sad one) of how this can be to our detriment, consider the case of a man, diagnosed
with Graves’, for whom it took three more weeks to get additional scans and ultrasounds, and then three
more weeks before the RAI could be administered because the Radiologist was going away on vacation.
He died in thyroid storm before his thyroid could be treated. Had his physician been licensed to
administer RAI, he could have been treated, and in all likelihood, be alive and recovering.

Anyway, I am having to e-mail this, because I cannot seem to get through to the bulletin board right
now. PLEASE take the time to cut and paste and mail the four letters. The DEADLINE IS OCTOBER
15–less than four weeks away. Please forward it to everyone you have addresses for. Jake is appointed
to get it on the bulletin board – Title: “Nuclear Regulatory Letters Needed-URGENT” Will someone
volunteer to re-post it a couple of times a week? Debby Jass? Thanks! Let me know that you wrote,
because I would like to let Dr.Baskins know at least a head count. THIS IS SOMETHING WE CAN
DO–RATHER THAN COMPLAIN THAT WE HAVE NO INFLUENCE!!
~^~^~^~^~^~^~^~^~^~
To: The Nuclear Regulatory Commission (NRC) Date:

From: (Name, Address, e-mail)

Re: Revisions to 10 CFR Part 35 (Medical Uses of Byproduct Materials)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
#1

I am a Graves’ disease patient,(or, a member of the National Graves’ Disease Foundation) and as such, have had (or will have) Radioactive Iodine in the treatment
of my illness. At the present time, I-131 can be given either in a hospital, or in the physician’s office. There are several advantages to having the endocrinologist licensed to give I-131 for Graves’ Disease in
the office. These include personal, accurate and focused attention between the patient and physician.
There is less room for error in the physicians’ office.

It is cost effective to have office-administered I-131. The cost of hospital administration increases the cost of the procedure by two to three times.

It reduces the fear and anxiety of this treatment to have it administered in the office.

Based on NRC data, there is no documented misadministration of I-131 by endocrinologists.

(Enter your personal experience here)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#2

Briefly, there are four points that are especially important to consider if Endocrinologists are no longer licensed to administer I-131 in their offices.

1. There is an increased potential for safety hazards and/or errors in the hospital.

2. There is a large increase in the cost to the patient.

3. There may be increased emotional trauma during treatment at the hospital.

4. There is an increased layer of complexity and margin or error made by the necessity of multiple referrals & consultations.

(Your personal experience here)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Mail to:

1. The Honorable Dr. Shirley Ann Jackson, Chairwoman
Commissioner, Nuclear Regulatory Commission
Room 17D1
One White Flint North Building
11555 Rockville Pike
Rockville, MD 20852-2738

The other Commissioners are at the same address

2. The Honorable Edward McGaffigan, Jr., Room 18G1
3. The Honorable Greta Dicus, Room 18H1
4. The Honorable Nills J.Diaz

[Anonymous September 22, 1998 at 7:21 pm Post count: 93172]

#1148001

I’m not so sure I’d want my first Endo or some of the Endo’s I’ve heard about on the BB to administer RAI.I felt much safer having the detailed scans of my thyroid done in the hospital with the radiologist reading them and deciding on dosage. When it comes to radiology, I prefer having an experienced Radiologist. Some of the Endos I’ve heard about, I wouldn’t trust with anything. My first endo was a wonderful man, but he was sure just looking ar me that I wouldn’t get the eye disease. He didn’t KNOW that you simply cannot tell who will and who will not get eye problems. He also was totally unfamiliar with the signs of eye problems and furthermore didn’t want to know. I’m sure there are good Endos who can adminster RAI, but I for one would prefer to have a radiologist. Just another point of view…….Gwen

[Anonymous September 22, 1998 at 7:28 pm Post count: 93172]

#1148002

My RAI was administered by the Nuclear Med Tech, not the radiologist or my doctor. He is also the person who administered the meds for my
uptake scan. My uptake was 74% at 4 hours and 92% at 24 hours. Now, my doctor says that last summer, before I was diagnosed, my pituitary may have been “fried” by my overactive thyroid.

I am becoming the “Scan” queen of Helena, Montana!

BTW, while the board was down, my youngest son got engaged. So, now, I am going to become a new mother-in-law next June!

Mitakuye Oyasin
Val

[Anonymous September 22, 1998 at 7:52 pm Post count: 93172]

#1148003

I hope that there are enough thinking people who read this board who will investigate the issue before rushing to send form letters to the Nuclear Regulatory Agency. The fact is that there is no standard protocol for deciding on a dosage of RAI. From what I can glean, each endocrinologist, internist, and radiologist has a method or a theory and simply tries it out on patients. No universal standard records are kept of success or failure of dosage protocols. Perhaps regulating the site and administration of RAI will allow for this study.

Some doctors have a vested interest in this issue, as they make a lot of money bypassing the hospitals and radiologists by administering RAI in their offices or clinics. If they do make a mistake, it is harder to trace or quantify. Please investigate further before hopping onto this bandwagon.

[Anonymous September 23, 1998 at 12:52 am Post count: 93172]

#1148004

Although I agree that it is always wise to investigate things before proceeding, I don’t think I would classify anything Nancy Patterson proposed as a “bandwagon”.

Nancy is not just the head of the NGDF and a person with GD, but an educated person with GD and I think that is she or Jake or Jan would reiterate her education and background, you would see that she doesn’t recommend things lightly. In over a year, this is the first thing I can remember her recommending in this manner, but I may be wrong. You know how the memory is with Grave’s!

At any rate, I am not disagreeing with Redhen, but trying to show that Nancy would not have recommended this on some sort of whim.

Mitakuye Oyasin
Val

[Anonymous September 26, 1998 at 11:25 pm Post count: 93172]

#1148005

A message from Nancy Patterson, National Graves’ Disease Foundation director
and fellow Graves’ warrior:

There is about to be a new rule proposed by the Nuclear Regulatory Commission
(NRC) that would require that RAI only be given by radiologists or hospitals,
and would no longer be given by licensed endocrinologists. Those
endocrinologists who are already licensed to administer RAI would be
“grandfathered in,” but no new licenses would be issued. Obviously, doctors
are writing in asking them to reconsider, and letters from patients would also
be very important. WE are the ones that use this service.

As an example (a very sad one) of how this can be to our detriment, consider
the case of a man, diagnosed with Graves’, for whom it took three more weeks
to get additional scans and ultrasounds, and then three more weeks before the
RAI could be administered because the radiologist was going away on vacation.
He died in thyroid storm before his thyroid could be treated. Had his
physician been licensed to administer RAI, he could have been treated, and in
all likelihood, be alive and recovering.

PLEASE take the time to cut and paste and mail letters to the four NRC
commissioners listed below. The DEADLINE IS OCTOBER 15–less than four weeks
away. Feel free to forward this message to other Graves’ warriors. Also,
please let me know that you wrote (ngdf@citcom.net), so I can give Dr. Jack
Baskins (from AACE) an idea of the number of supportive letters that were sent
from patients. THIS IS SOMETHING WE CAN DO–RATHER THAN COMPLAIN THAT WE HAVE
NO INFLUENCE!!

~~~~~~~~~~~~~~~~ letter samples ~~~~~~~~~~~~~

To: The Nuclear Regulatory Commission (NRC)
Date:
From: (Name, Address, e-mail)
Re: Revisions to 10 CFR Part 35 (Medical Uses of Byproduct Materials)

~~~~~~~~~~~~~~~~~#1
I am a Graves’ disease patient, and as such, have had (or will have)
Radioactive Iodine in the treatment of my illness. At the present time, I-131
can be given either in a hospital, or in the physician’s office. There are
several advantages to having the endocrinologist licensed to give I-131 for
Graves’ Disease in the office. These include: There is more personal,
accurate, and focused attention between the patient and physician. There is
less room for error in the physician’s office. It is cost effective to have
office-administered I-131. The cost of hospital administration increases the
cost of the procedure by two to three times. It reduces the fear and anxiety
of this treatment to have it administered in the office.
Based on NRC data, there is no documented misadministration of I-131 by
endocrinologists.

(Enter your personal experience here)

~~~~~~~~~~~~~~~#2
Briefly, there are four points that are especially important to
consider if endocrinologists are no longer licensed to administer I-131
in their offices:
1. There is an increased potential for safety hazards and/or errors in the
hospital.
2. There is a large increase in the cost to the patient.
3. There may be increased emotional trauma during treatment at the hospital.
4. There is an increased layer of complexity and margin of error made by the
necessity of multiple referrals.

(Your personal experience here)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Mail to:
1. The Honorable Dr. Shirley Ann Jackson, Chairwoman
Commissioner, Nuclear Regulatory Commission
Room 17D1
One White Flint North Building
11555 Rockville Pike
Rockville, MD 20852-2738

The other Commissioners are at the same above address:
2. The Honorable Edward McGaffigan, Jr. , Room 18G1
3. The Honorable Greta Dicus, Room 18H1
4. The Honorable Nills J. Diaz, Room 18F1

[Author]

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