Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 , I hope you dont' mind me posting to this message. Did your sister in law get a second opinion??? My GP was telling me it would be easily treated with RAI and it would be " over and done with " I am sooooo glad I got another opinion from an Endo. Post partum, with tapazole, should take care of it! I hope she keeps having doubts and does not go through with this!! Good Luck! Jewls In a message dated 6/13/00 12:29:48 AM Eastern Daylight Time, petr0013@... writes: << About a month ago, my siter-in-law was diagnosed with Graves six months post-partum. It's a long story (that I'll send to you) but in sum, I'm thinking your voice is important because my sister-in-law's endo is recommending RAI even though tapazole has already improved her thyroid levels (in one months) and it's a post-partum diagnosis. The endo is recommending RAI ON THE BASIS of Laurie's " high " T3 which is 400-something. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 , I saw my new endo last Wed., she has been an endo for about 17 years, in the beginning she did as most others do and recommended RAI. When we talked she told me that RAI is her LAST choice of treatment for her patients now, she is seeing to meany complications and side affects that only are adding up with RAI patients. Please ask to find a new endo or to be strong with this one and tell him NO to RAI. I too was rushed into RAI at diagnosis, my T3 (RIA) was 698 at time of diagnosis and I was told I HAD to have either surgery or RAI immediately. I only wish I knew then what I know now. My new endo would have tried the ATD's first. I really like her thinking and think I am going to be very happy with her, she is open to to T3 supplements by October if we can't get me feeling better with tweaking my T4. Then her stand on RAI clinched my opinion of her. It has taken me 4 years, 2 previous endos and a slew of drs. to find this one, I think I will keep her. If is having any doubts at all, then we all know that RAI is not the choice for her, not at this time at least. And she has the time to decide and trust her innerself. Good luck to her, and I'm glad she has you involved in her life, you are a wonderful inspiration to all of us! *HUGZ* to you, Jody PS We have gotten to what the drs. call a 'safe' period in my daughters pregnancy. Seven weeks to go and still hanging on, thank you for everything there! I will let you know once we have this new little person in our lives ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 I answered this group of requests..but as the address for Laurie did not work directly I sent it to ....and will also repost it here with some info removed ( like phone number) in case , porr girl, is too sick today to play mail woman. ldumdumt@... is not an address that worked so I send this to you ... Dear Laurie....I had really high T-3 and T-4 and was very postive for antibodies..Tapazole did the trick. I am going to prowl through my files and send you old posts where I have pulled up and written about my experience. okay Lab numbers and all that. You should also know that I did a survey on the web and it taught me that RAI is very problematic for many....you can see the results in the graves-support archives..but I'll try to send you a bot of that too. These are the questions asked me to answer below..I'll put in a word there too. 1. How can she distinguish between post-partum thyroiditis and Graves (I told her an antibody test can tell . . ?) she's had an uiptake and bloodwork, although it appears her first endo didn't do a TSH. In short, is there a test or something that can tell for sure between post-partum and Graves? (again, my thought is the antibody test) I am not sure and can't do the reading this more regarding the test discernment ( ask Elaine?) but Either way if you are responding to tapazole why not just wait and see what happens? The post partum is something that many of us may have transitionally experienced. The thing is the immmune system is upset..let it heal and calm down while you are protected from your thyroid by tapazole. 2. Laurie's endo told her a T3 as high as hers (400 something) means ATDs won't work. What do you think of this? What do you think of the fact that her levels are coming down already while on tapazole? This is patently not true....here are my numbers...My free T-3 was 2510 and the lab normal range is 210-440. T-4 was 21.1 and the range is 4.4-12.0 Now in one month my free T-3 came down from 2510 to 797...and three weeks later was down to 569. Within three and 1/2 months of beginning Tapazole I was 365...nicely under the top of the normal range. ( 440) I was under the care of an excellent endocrinologist and he was very versed in the use of Antithryoid drugs ( ATD's) in the US and other countries, He gave me good articles to read and reviewed the survey ( 240 post treatment cases)I did and said the info that the survey held lined up with much research and concerns regrading RAI and and eye troubles. 3. I'm urging Laurie to go to my endocrinologist who will give me every blood test I request and has followed ALL of my requests/ideas. Think this is a good idea, considering the advice she's already been given STAY on the tapazole and seek a 2nd opinion. Don't keep Wednesdays appt. for RAI you can also go for RAI later...do the less intrusive and less damngerous options first. I still have my thryoid and don't take any pills of any kind! 4. Any comments on exchanging hyperthyroidism for hypothyroidism following RAI? Hypothyroidisim is very hard on the eyes..and the sharp up and downs that follow RAI are very hard on all systems. Replacement therapy isn't the finely calibrated adjustment that your body does throughout the day ( your thryoid gland). Healinfg and remission are possible. I had almost all the list of those things which statistically make remission less likely but here I am! okay now I will prowl old posts and send you more of my story in hopes it will help you. A BIT OF MY STORY OF REMISSION: I was awfully hyper... I was! The amazing thing about my story is that I did not have any of the factors which statistically make remission on ATD's more probable but I went into remission on tapazole. The younger you are it is thought to be possibly better, but at diagnosis I was 47. I had a very sore goiter. I'd been sick a long time. I was massively hyper: ( my free T-3 was 2,510...the normal range for that test is 21 to 440) In one month on Tapazole, I came down to 797, then three weeks later I was down to 569 and then less than three months since the start of treatment I was euthyroid at 365 for a free T-3 reading. You may not feel any better the first 2-6 weeks as even though you are not making more extra thyroid, you have a lot stored up that is still being released. It took time for my goiter to shrink in size and sensitivity. I now take no meds, have normal ranges for all thyroid function and my antibodies are down in the " not diagnostic " range....and no goiter. Impatience is a big factor with ATD's...some docs get impatient. My doc was very able to encourage me....keeping me safe from the attack on my thyroid while the immmune system calmed down and allowed my thyroid to heal. I took diminishing doses for 2 1/2 years. My eyes were involved enough that I may have developed bad problems if I had taken RAI...instead, thus far I have occassional sensitivity, irritation and the like....but none of the advanced eye problems like proptososis etc. Well... Perhaps the other thing I should tell you that in 1997 I did a survey on the ngdf bb. Over 200 folks answered it...the implications .... well you can go read some of the results for yourself. ( It is posted in the archives of grave_supportonelist) I presented it at the ngdf conference that year. My endo says it is right in line with what the new research shows. Anyway...over the years many of the post rai folks tend to have a lot of problems..even the ones who are big proponents for it, remember once you have RAI you can't go back and make a new decision. And as regards eye problems, it is no longer considered controversial whether or not RAI tends to increase graves eye disease, it does. Some commonly shared stats state that " only " about 20-30% people with GD get eye disease. In my little survey, self reported and anecdotal of 214 people....and folks who may be sicker than some as they are on the bb looking for help..but still... 33% of those who took ATD had some eye trouble and 75% of those experienced it before treatment and most of them improved. But of those who took RAI 55% had eye symptoms ( and they are more serious eye symptoms each class is classified into 6 types of trouble the disease can produce) and this is very important...54% of those folks experienced the eye trouble only after they got the treatment. SEE..most smart docs don't treat eye involved people with RAI...so that makes the ATD's numbers high to start with...but those folks get better not worse...while people whose eyes were fine get more eye trouble. LAURIE if you think I can answer any other question or need to talk call me at that is in California. or e mail me...whatever works for you. There is a right treatment for you and you don't need to be rushed into one that may not be the right one! best regards, Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 Thanks!! Jewls, I forwarded this to Laurie. Thanks to to the people who quickly sent me Jeannette's email. Gotta run, long day ahead with a sick baby and sick myself. Ugh. I'll keep you posted on Laurie's situation, all. Re: Urgent to Jeannette > , I hope you dont' mind me posting to this message. Did your sister in > law get a second opinion??? My GP was telling me it would be easily treated > with RAI and it would be " over and done with " I am sooooo glad I got another > opinion from an Endo. Post partum, with tapazole, should take care of it! I > hope she keeps having doubts and does not go through with this!! > > Good Luck! > Jewls > > In a message dated 6/13/00 12:29:48 AM Eastern Daylight Time, > petr0013@... writes: > > << About a month ago, my siter-in-law was diagnosed with Graves six months > post-partum. It's a long story (that I'll send to you) but in sum, I'm > thinking your voice is important because my sister-in-law's endo is > recommending RAI even though tapazole has already improved her thyroid > levels (in one months) and it's a post-partum diagnosis. The endo is > recommending RAI ON THE BASIS of Laurie's " high " T3 which is 400-something. > >> > > ------------------------------------------------------------------------ > Stand out. In B2B. In Austin. Work with clients like Dell and pcOrder. > Submit your resume to jobs@.... Visit us at > http://click./1/4355/5/_/585824/_/960897369/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
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