Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 ---Original Message----- From: Betsy Marriner Sent: Tuesday, August 05, 2003 11:36 AM To: graves_support Subject: Hi, new member here Hi. My name is Betsy Marriner and I joined because I have a 32 year old daughter just diagnosed with Graves Disease. She was put on PTU(?) with no success. They are doing the RAI tomorrow and Thursday so she has been off her PTU for 10 days now and is in really bad shape. On top of the graves disease she has been clinically depressed for years and has anxiety attacks. She feels really terrible right now, aching, agitated, sore throat, coughing, etc. She has me very worried because of her depression. Is there anything I can say to her to help her. Also, after the RAI, how long will it be before she sees any results. Any help would be appreciated. Thanks so much. Betsy from NC. Hi Betsy, You're going to hear a lot of this but best advice is to have your daughter postpone RAI for now! How long was she on PTU with no success? What are they basing the " success " or lack of on? Do you have copies of her lab work? Are they measuring levels of free T3 and free T4? Or are they mostly monitoring her TSH level? I think most of here were told in the beginning that RAI was our best course of action. Personally, I researched like crazy and discovered RAI is not always the answer. It is permanent, it is irreversible and often leads to a new set of problems. Instead of being hyper-thyroid many people then find themselves becoming hypothyroid and the battle to find *just* the right amount of replacement thyroid hormone begins. And that replacement hormone MUST be taken for life. I hope I'm not scaring you but I honestly feel that there are better alternatives than RAI. On a correct dosage of PTU (which can honestly take some time to get the right dosage and see some results) many people eventually go into remission. See, Graves disease is an auto-immune disorder that tricks your thyroid into making too much thyroid hormone. There is really nothing wrong with the thyroid itself! The body makes antibodies that make the thyroid hormone production increase. RAI does not in any way address the underlying cause of the disease, which is the antibodies. In some cases, without the thyroid to confuse anymore the anti-bodies then cause problems with the tissue surrounding the eyes and many folks end up with thyroid eye disease to varying extents. Right now your daughter is a hyperactive mess. I'm sure she can't concentrate on anything and RAI sounds like the best way to go because the doctors have all told her how harmless it is. It is harmless for many people, but it is very harmful to some. She needs a good advocate (and a good endocrinologist) to help her through this. She should be on thyroid medication, whether it's PTU or Tapazole. Beta blockers will do wonders in making her *feel* more normal until the medication has had the chance to fully slow her system down. Once she is fully under control and not all hyper and confused that is when she should do some good research and carefully, very carefully, make a decision on which path of treatment she should undergo. in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 ---Original Message----- From: Betsy Marriner Sent: Tuesday, August 05, 2003 11:36 AM To: graves_support Subject: Hi, new member here Hi. My name is Betsy Marriner and I joined because I have a 32 year old daughter just diagnosed with Graves Disease. She was put on PTU(?) with no success. They are doing the RAI tomorrow and Thursday so she has been off her PTU for 10 days now and is in really bad shape. On top of the graves disease she has been clinically depressed for years and has anxiety attacks. She feels really terrible right now, aching, agitated, sore throat, coughing, etc. She has me very worried because of her depression. Is there anything I can say to her to help her. Also, after the RAI, how long will it be before she sees any results. Any help would be appreciated. Thanks so much. Betsy from NC. Hi Betsy, You're going to hear a lot of this but best advice is to have your daughter postpone RAI for now! How long was she on PTU with no success? What are they basing the " success " or lack of on? Do you have copies of her lab work? Are they measuring levels of free T3 and free T4? Or are they mostly monitoring her TSH level? I think most of here were told in the beginning that RAI was our best course of action. Personally, I researched like crazy and discovered RAI is not always the answer. It is permanent, it is irreversible and often leads to a new set of problems. Instead of being hyper-thyroid many people then find themselves becoming hypothyroid and the battle to find *just* the right amount of replacement thyroid hormone begins. And that replacement hormone MUST be taken for life. I hope I'm not scaring you but I honestly feel that there are better alternatives than RAI. On a correct dosage of PTU (which can honestly take some time to get the right dosage and see some results) many people eventually go into remission. See, Graves disease is an auto-immune disorder that tricks your thyroid into making too much thyroid hormone. There is really nothing wrong with the thyroid itself! The body makes antibodies that make the thyroid hormone production increase. RAI does not in any way address the underlying cause of the disease, which is the antibodies. In some cases, without the thyroid to confuse anymore the anti-bodies then cause problems with the tissue surrounding the eyes and many folks end up with thyroid eye disease to varying extents. Right now your daughter is a hyperactive mess. I'm sure she can't concentrate on anything and RAI sounds like the best way to go because the doctors have all told her how harmless it is. It is harmless for many people, but it is very harmful to some. She needs a good advocate (and a good endocrinologist) to help her through this. She should be on thyroid medication, whether it's PTU or Tapazole. Beta blockers will do wonders in making her *feel* more normal until the medication has had the chance to fully slow her system down. Once she is fully under control and not all hyper and confused that is when she should do some good research and carefully, very carefully, make a decision on which path of treatment she should undergo. in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hi . Thanks for the information. I'm really confused now, lol, because her endo doc told her that PTU had a very low success rate. I don't have her stats in front of me because she doesn't live with me. She lives in another town, alone, and that makes it worse because she calls me feeling so bad and so depressed and I don't know what to do to help. She has been counting the days til she has the RAI and if I tell her now to postpone it, I don't know what she might do. What are some of the problems with this. I am really new at this. My daughter has had symptoms for several months but was only diagnosed with Graves about 2 months ago. She has been getting worse ever since. She even lost her job because she isn't able to funtion. Thanks for any info.Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 ----Original Message----- From: Betsy Sent: Tuesday, August 05, 2003 12:20 PM To: graves_support Subject: Re: Hi, new member here Hi . Thanks for the information. I'm really confused now, lol, because her endo doc told her that PTU had a very low success rate. I don't have her stats in front of me because she doesn't live with me. She lives in another town, alone, and that makes it worse because she calls me feeling so bad and so depressed and I don't know what to do to help. She has been counting the days til she has the RAI and if I tell her now to postpone it, I don't know what she might do. What are some of the problems with this. I am really new at this. My daughter has had symptoms for several months but was only diagnosed with Graves about 2 months ago. She has been getting worse ever since. She even lost her job because she isn't able to funtion. Thanks for any info.Betsy Hi again Betsy, When I was first diagnosed it was nice to know that I wasn't insane! My regular doctor immediately put me on PTU, 2 pills three times a day and a beta blocker. Within a few weeks I was feeling much more like my old self. My regular doctor then made an appointment for me to see my first endocrinologist. At the end of the first visit he said that the best course of action would be RAI. Her explained it in such a way that it sounded so easy. But being an extremely skeptical person I started researching when I got home and discovered so much information regarding Graves and RAI that I chose not to have the procedure done. And I think it's good I went with medication only. I later discovered that at the time my anti-body count was through the roof and that can lead to a worsening of Graves Ophthalmology, or TED (Thyroid Eye Disease). Do your daughter's eyes seem a bit " bulgy " . If so, her eyes are already involved and could worsen a lot with RAI. And RAI will make her hypothyroid eventually. Read up on hypothyroidism and she what may be in store for her. My mother-in-law had RAI 30 years ago and she says she has never felt " right " since. She is always tired, always sick, had numerous female troubles after the procedure and her doctor is still trying to find the right dosage of synthroid for her. We are the only developed country that still advocated RAI as a first course of treatment for this disease. Other countries are now advocating medication first. If that fails then they recommend surgery. The last resort would be RAI and only in certain circumstances. If I were your daughter, I'd cancel the RAI appointment first. Then I'd ask for copies of all my labwork, next would be to find a new endocrinologist and have her primary care doctor get her a prescription of either PTU or tapazole ASAP. Depending on how her heart rate is they may also be wise to get her into a beta blocker. In a few weeks she will start to feel more normal. Then, when she can think clearly again and isn't suffering from " Graves Brain Fog " she can make an informed decision. There are other folks on here who have had RAI and regret it. I'm sure you'll be hearing from them soon. At first PTU wasn't " working " for me either. It took a dosage of 12 tablets a day (4 pills three times a day) to get my levels under control. Then, I went into remission for close to three years until a stressful situation in my life got my system all fired up again. More and more research is being done all the time and when they discover how to shut off the production of the antibodies that causes the problem I'll still have my thyroid and will be able to undergo the treatment then. My thyroid isn't sick at all, it's the immune system that's malfunctioning. I can't reconcile to myself killing off a healthy gland. Does she have a connection to the web? Have her get on this group ASAP! in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2002 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hi Betsy- I have 6 mo. old twins (from IVF after years of infertility) so I can't answer this as I'd like to. But like Faye's mother, I have never felt right after RAI. I've had muscle aches and pains, high cholesterol-in my 20s-from being underdosed with Synthroid, neuropathies and joint pain. Worse yet for me has been a kind of " sick " fatigue. The most painful though was the infertility. There have been other problems too. Anyhow, your daughter will feel better faster on the correct dose of ATDs and a beta-blocker than she will after RAI. It will probably take at least 2 mos for the thyroid cells to quit dumping their thyroid hormone as they die. Take care, dx & RAI 1987 (at age 24) > Hi . Thanks for the information. I'm really confused now, lol, > because her endo doc told her that PTU had a very low success rate. > I don't have her stats in front of me because she doesn't live with > me. She lives in another town, alone, and that makes it worse > because she calls me feeling so bad and so depressed and I don't > know what to do to help. She has been counting the days til she has > the RAI and if I tell her now to postpone it, I don't know what she > might do. What are some of the problems with this. I am really new > at this. My daughter has had symptoms for several months but was > only diagnosed with Graves about 2 months ago. She has been getting > worse ever since. She even lost her job because she isn't able to > funtion. Thanks for any info.Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 , at first I drank and drank, and still some days I finish 16oz water and a few minutes later want more. I don't care about food much of the time, but make sure I get it in. My doctor notes didn't worry about enough protein until 3 weeks, then suggested 50-60 gms. Everyone is different in the amounts suggested to them, and when. The only way I get enough now is by adding 1 protein bar a day, cut into 6 pieces, eating it randomly. At first I thought getting enough protein was difficult, but found if you compare grams of protein, you make choices with the higher rated ones. For instance, in the a.m. I loved yogurt, but it only has 7 gms protein, so I switched to cottage cheese which has 13 gms. Protein is deceptive when you look it up in a book. You'll see something that's really high, and then realize you have to eat 3 oz. of it (which you can't). I use the book for every meal, and use a small diet scale to measure the quantity. After awhile I'm sure it'll get easier where I don't have to use these, but for now it helps me. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/240/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 , at first I drank and drank, and still some days I finish 16oz water and a few minutes later want more. I don't care about food much of the time, but make sure I get it in. My doctor notes didn't worry about enough protein until 3 weeks, then suggested 50-60 gms. Everyone is different in the amounts suggested to them, and when. The only way I get enough now is by adding 1 protein bar a day, cut into 6 pieces, eating it randomly. At first I thought getting enough protein was difficult, but found if you compare grams of protein, you make choices with the higher rated ones. For instance, in the a.m. I loved yogurt, but it only has 7 gms protein, so I switched to cottage cheese which has 13 gms. Protein is deceptive when you look it up in a book. You'll see something that's really high, and then realize you have to eat 3 oz. of it (which you can't). I use the book for every meal, and use a small diet scale to measure the quantity. After awhile I'm sure it'll get easier where I don't have to use these, but for now it helps me. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/240/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 welcome! who knows the meaning of " normal " . in my lay person opinion, the thirst is your system wanting/needing to keep healthy & hydrated. find a palatable prot shake; in the files section, there are shake recipes if things start getting monotonous. lori h. > I am only 2 weeks post op, but I have a question.Is it normal for me to feel thirsty all the time. I sip on water all day, and night, and dont really care if i have food or not. I am scared that I am not eating enough protein and I dont want my hair to fall out because of it. > Any advise would be appreciated! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 welcome! who knows the meaning of " normal " . in my lay person opinion, the thirst is your system wanting/needing to keep healthy & hydrated. find a palatable prot shake; in the files section, there are shake recipes if things start getting monotonous. lori h. > I am only 2 weeks post op, but I have a question.Is it normal for me to feel thirsty all the time. I sip on water all day, and night, and dont really care if i have food or not. I am scared that I am not eating enough protein and I dont want my hair to fall out because of it. > Any advise would be appreciated! > Quote Link to comment Share on other sites More sharing options...
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