Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 Terry, Thanks for explaining into that detail. I am not trying to convince anybody here, I have been this group for over 2 years, had seen enough of the anti-RAI posts here, I understand you can change people's view unless they want to change. I just want to list some research facts for whoever new to this group, to offer something which might be very different from what most of this group thought. However, these facts listed are the consensus in the medical field. You may call me at baby step, I am not talking about myself. I am talking plain fact in Medline. Facts never lie. Every year, over 50% of Graves in USA are treated with RAI, if the problem is so dominant, I would think FDA would have taken it off the treatment options. Remember the weight loss drug Phenphen(spelling?), it was taken out of market just in a few years. The problem was only discovered in very small percentage of the patients. RAI has been around since 1942, if the side effects are dominant after 6 years or 10 years, we should know by now, the FDA should know by now too. Instead, the Endo medical board is recommending it. If the problems were so dominant with RAI as we have seen here, you would have seen the member number in this supporting group would be over 10k by now since it is the first web list under graves support. I am seeing the oppitunity of class action sue if the RAI acutally is the b**lsh*t and caused these many problems. Even we do not jump in, the lawyers will. RAI does cause problems but not that dominant as we heard from here. Just a thought, maybe mosf of the endos in US medical board are dummies? I just do not believe that. I think time will tell everything, right? I will keep here updated. Best wishes! Liang, > > 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 > > > From: " leon_lz " <leon_lz@y...> > > 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. > > ------------------------------------------------------------------ ------------ > > -------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 Facts never lie. Every year, over 50% > of Graves in USA are treated with RAI, if the problem is so dominant, > I would think FDA would have taken it off the treatment options. > Remember the weight loss drug Phenphen(spelling?), it was taken out > of market just in a few years. The problem was only discovered in > very small percentage of the patients. RAI has been around since > 1942, if the side effects are dominant after 6 years or 10 years, we > should know by now, the FDA should know by now too. Facts may actually be " facts " -- people often cite " facts " that aren't at all factual, but what they wish or hope were facts. If the treatment rate with RAI is now 50%, then it has gone down significantly in the past ten years. Why? Because many doctors are now becoming aware of the dangers of RAI and the relative ease and success of ATDs. Lawyers are interested in torts (cases for money damages) that have the possibility of bringing in LOTS of money without having to present a complicated case or pay a lot of expert witnesses. Successful torts don't prove a thing in terms of factuality. I think this group has a very useful place in the entire realm of Internet Support for people with Graves'. Terry put it very well. We have experience to share. We are not forcing anyone to take our advice. Perhaps you are unaware of the emphasis we have put on presenting research studies to the group. Since you don't see as much of that here recently, you may think you are offering a new prospective. Check the archives of messages and the Files and Links sections for this group, and you will see that we are quite aware of new (and old) research. Way back at the beginning, I posted information about my search of the fifty-year old research on RAI. It was trash, as research goes. Yes, the scientific community SHOULD be doing research on the effects of RAI on otherwise healthy people with autoimmune thyroid disease. That does not mean they ARE. The FDA in the US makes many mistakes each year when it comes to medical treatment and devices. Who do you think originally OK'd Phen- phen for the treatment of obesity? There may very well come a day when I-131 is banned for the treatment of Graves' Disease. Red Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Terry, Thanks for your take on this. It really helps knowing that my Doctor really is paying attention! Thanks for the drug info too. I imagine that I will be on the beta blockers next week! Del > Hi all, > > I had my Dr.s appointment today and he gave me a copy of the labs. > He explained them somewhat but I really would like to have input > from all of you. He is also concerned about by heart rate (120) but > my blood pressure is pretty good 130/80 and my temp was normal for > me 98.2, weight was 2 lbs down from last week, I think it was my > coat! > > Here are the numbers from the labs: > > T4 Free - 2.83 (0.61 - 1.76) > Estradiol - 39 (0 - 53) > TSH <0.004 (0.35 - 5.500) > Testosterone, Serum 810 (241 - 827) > Prolactin 6.6 (2.1 - 17.7) > hCG, Beta Subunit, Qual, Serum, - Negative > Thyroid Peroxidase TPO 178 (0 - 34) > > By the way, the lab costs for the tests is $798.00 > > I went ahead and took a chance and had the Thyroid Uptake test. > I was assured by the many phone calls that the amount of iodine was > minute. I had no effects - so far. I hope I dont regret taking it. > > This result is directly from the results report. > > " The patient received 416 microcuries of iodine 123. The 24 hour > thyroid radioiodine uptake is 47% which is midly elevated. Anterior > and bilateral oblilque views of the thyroid gland show mildly > prominent gland with minimal homogeneous distribution of activity > throughout the gland. No focal hot or cold lesions are suggested. " > > Impression: > > 1. Elevated thyroid Iodine uptake and apperance consistent with > Hyperthyroidism/Graves Disease. > > I am on methimazole (gneric Tapazole)10mg 2 times per day. Started > taking last night. (couldn't start until uptake was over) > > My Doctor wants me to drop by next week for blood pressure and heart > rate next Wed and I am to see him in 1 month for blood work. > > I started taking Flax Seed Oil last Friday and he said that my eyes > are looking more normal. The pressure is completely gone. I see my > eye doctor Friday. I'm anxious to here what he says. > > Thanks to everyone, > > Del Quote Link to comment Share on other sites More sharing options...
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