RE: for Liang

October 24, 2003

> Unfortunately, Laurie, you joined at a time when someone on a

> mission also

>> joined. Someone who likes to go to message boards and start

> trouble.

> what does that mean??

Liang,

It means that some members of the group think you are working very, very

hard to convince us that RAI is a normal and right course of action to take.

As I said to you when you first wrote to me, there is an educational aspect

to the group--we all like to learn, sometimes argue a bit, too. But there is

one difference for many of us from what you've just been through: we've

seen, again and again over the years we've been a group, people come in who

(as has been said a few times in other posts, yes?) were rushed into RAI

uninformed, and then not cared for properly. We have been through watching a

few people come close to, or arrive at a point of falling into a coma from

this mistreatment. We have had people come to the group miserable because of

RAI induced infertility, or eye problems that have adversely affected their

lives, to the point of not being able to see straight, drive, work for a

living. We have heard, again and again, how group members after RAI have had

their lives compromised--how they can't get the energy up to take care of

their children anymore, or clean their house, or go to work. We have seen

many desperate people here, who have had RAI. We have seen these things,

Liang, and NOTHING you show us by way of research speaks louder than such

misery as we have seen, from people blithely following incompetent doctors

down the primrose path and then waking up with their lives compromised.

I encouraged you to share here, because you went into RAI with your eyes

open. But your trying to convince others that RAI might be right for them,

too, will fall on deaf ears here. If someone's had it already, we will

support and help them. Many, many of the members of this group have had RAI.

But (speaking for myself and including others who've expressed the same

opinion already) we will NOT be advocates for it, and that is because, with

what we have seen of people coming through this group after RAI, we remain

completely unconvinced that it is a correct and valid treatment except as a

last resort, where all else has failed. People in the group have pointed out

again and again the one salient fact: Graves Disease is NOT a disease OF the

thyroid, but a disease of the IMMUNE SYSTEM that causes the immune system to

attack the thyroid. So regardless of the fact that RAI " cures " GD by

rendering the thyroid useless, it doesn't, in fact cure GD at all--and for

many people the immune disorder that has manifested as GD will simply attack

elsewhere, when the thyroid is gone.

As I said before, I encourage you to stay with this group, or at least check

in periodically. Let us know your progress as your thyroid dies. let us know

how you feel, when you have to find the right dose of replacement

hormone--is it an easy thing? Is your quality of life the same as it once

was? You have to walk in your own shoes for a while, Liang, before you can

try to convince others to try them on. And you've only just taken a few baby

steps at this point. You may be a scientist, you may be logical, but your

posts and surveys lack that one important part that this group deals with

every day. The real effect of the disease and the treatment on the people in

the group.

Best to you,

Terry

>

> Reply-To: graves_support

> Date: Sat, 25 Oct 2003 03:40:35 -0000

> To: graves_support

> Subject: Re: A suggestion regarding the current discussion on

> RAI...

>

>> I am post RAI and I find this support group very educational and

> uplifting!

>

> liang

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

October 25, 2003

This is a study which supports your position Terry and appears to be a good

quality study. It gives research evidence for the anecdotal experiences of

the folks described by you below:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_u

ids=7543112 & dopt=Abstract> & db=PubMed & list_uids=7543112 & dopt=Abstract

It further supports many members' caution that we use RAI with great caution

and only as a last resort.

Sheila

Re: A suggestion regarding the current

discussion on

> RAI...

>

>> I am post RAI and I find this support group very educational and

> uplifting!

>

> liang

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

>

----------------------------------------------------------------------------

--

> --------

>

October 25, 2003

Well---let's try that again. The link didn't work when I tried it from the

post so I'm pasting in the abstract instead:

1: J Clin Endocrinol Metab. 1995 Aug;80(8):2312-21.

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed & cmd=Display & dopt=pu

bmed_pubmed & from_uid=7543112> Related Articles,

<javascript:PopUpMenu2_Set(Menu7543112,'','','','','');> Links

Does thyroidectomy, radioactive iodine therapy, or antithyroid drug

treatment alter reactivity of patients' T cells to epitopes of thyrotropin

receptor in autoimmune thyroid diseases?

Soliman M, Kaplan E, Abdel-Latif A, Scherberg N, DeGroot LJ.

Department of Medicine, University of Chicago, Illinois 60637, USA.

The effect of treatment on thyroid antibody production and T cell reactivity

to thyroid antigens was studied in 15 patients with Graves' disease (GD)

before and after thyroidectomy, 19 patients with GD before and after

radioactive iodine (RAI) therapy, and 9 patients maintained euthyroid on

antithyroid drugs (ATD). Twenty subjects matched for age and sex without

known thyroid disease served as controls. In GD patients, the responses of

peripheral blood mononuclear cells (PBMC) and TSH receptor (TSHR)-specific T

cell lines to recombinant human TSHR extracellular domain, thyroglobulin,

and TSHR peptides were examined on the day of surgery or RAI therapy (day 0)

and also 6-8 weeks and 3-6 months thereafter. Reactivity to TSHR peptides

before surgery was heterogeneous and spanned the entire extracellular

domain. Six to 8 weeks after subtotal thyroidectomy, the number of patients'

PBMC responding to any peptide and the average number of recognized peptides

decreased. A further decrease in the T cell reactivity to TSHR peptides was

observed 3-6 months after surgery. The responses of PBMC from Graves'

patients before RAI therapy were less than those in the presurgical group.

Six to 8 weeks after RAI therapy, the number of patients responding to any

peptide and the average number of recognized peptides increased. Three to 6

months after RAI, T cell responses to TSHR peptides were less than those 6-8

weeks after RAI therapy, but still higher than the values on day 0.

Responses of PBMC from patients with GD, maintained euthyroid on ATD, were

lower than those before surgery or RAI therapy. The reactivity of T cell

lines in different groups reflected a pattern similar to PBMC after

treatment. TSHR antibody and microsomal antibody levels decreased after

surgery, but increased after RAI therapy. The difference in the number of

recognized peptides by patients' PBMC before RAI and surgery may reflect the

effect of long term therapy with ATD in the patients before RAI vs. the

shorter period in patients before surgery. The decreased T cell reactivity

to thyroid antigens after thyroidectomy could be the result of removal of a

major part of the thyroid gland or redistribution of suppressor-inducer T

cells. The increased T cell response after RAI therapy is probably epitope

specific, rather than a response to the whole TSHR molecule. Synchronous

recognition of peptides 158-176 and 248-263 is important for the development

of GD, and the loss of recognition of one of these epitopes may be an early

sign of immune remission and a predictor of euthyroidism.

PMID: 7543112 [PubMed - indexed for MEDLINE]

Appreciating you,

Sheila

Re: A suggestion regarding the current

discussion on

> RAI...

>

>> I am post RAI and I find this support group very educational and

> uplifting!

>

> liang

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

>

----------------------------------------------------------------------------

--

> --------

>

October 25, 2003