Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 Hi Maggie, Welcome to the group. I can't believe how badly your care has been mismanaged so far! Please don't give up and have RAI at this point, it would be a dire mistake for you. Why? Because first of all, it will make your eye problems worse as it doesn't address the underlying cause of the eye disease. Second, you are not being controlled by drugs now, and therefore, if your levels are high when you undergo RAI you risk thyroid storm as the thyroid dumps hormone. And third, if you are managed properly by an informed doctor, and take the time as well to learn all you can about the disease, you will find it's entirely possible to get a good treatment outcome without RAI. I don't have eye disease, so can't honestly address that aspect of things, but your reaction to the drugs by going up and down on the scale--can you be more detailed about what you were taking, and what your labs during that time were? We may be able to help a bit if we have more info. Certainly your current course of action is not going to help you get better! You need to have your blood levels monitored, you need to be on medication so your GD doesn't spin out of control. Were you on MMI or PTU? What dose were you on? How closely were you monitored? Lots of exploration necessary here. Do spend a bit of time at the home page in the files section, look at the symptom list, the letter to the newly diagnosed (which I know isn't you, but nevertheless it's a helpful letter), and the top 20 reasons not to have RAI, which are well documented and should address some of the reasons you should not proceed with that course of action. It's a funny week, some of us are here, some not. Be patient, and I'm sure you'll get plenty of responses besides mine, especially from others with eye involvement. Terry > > Reply-To: graves_support > Date: Sun, 22 Dec 2002 16:41:25 -0800 > To: graves_support > > Subject: Re: Happy Holidays > > Hello group! I am new here, just signed on a week ago and have been trying to > read all the messages. Since there are so many, I decided to just jump in and > say hello. I am hoping to find someone or many who share my situation. > > I was diagnosed in 2000 with hyperthyroidism at the age of 50. I started > taking drugs and having routine blood tests, but then my right eye started > bulging. Each month my test results would go up and down the scale. After > two years of drugs and no improvement, my doctor wanted to do radioactive > iodine. I told her I needed to think about it. I've been thinking for almost > 8 months and have not come to any decision. I stopped going to the doctors, > stopped the meds and decided to just go on with my normal life. I do see an > opthalmologist who has been watching my eye for over a year. He says my > condition is very mild and has suggested doing steriods in January. Has > anyone had steriods and has it helped? > > I am concerned that I might have to surrender to the radioactive iodine > treatement because lately I have been having lots of heart palpatations - > especially at night - my heart beats so fast and so loud I find it hard to > sleep. So I am thinking the treatment is my only choice. Is it? > > Look forward to hearing from anyone who is more educated than I am on this > subject. > > Thanks for listening and everyone, do have a Merry Christmas. > > Maggie > Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Hi Maggie, > > Here's my test results from start to finish that I did save, monthly test. > During this time my doctor changed my dosage of 10 mg of Tapazole from 2 to 3 > times a day depending on test results. > > 05/21/2001 - TSH <0.01, T3 Free 12.2, Free T4. 3.5 > 06/18/2001 - T3 Free 2.9, Free T4 0.9 > 07/19/2001 - Free T4 4.6, T3 16.1 > 08/14/2001 - TSH <0.01, T3 Free 3.1, Free T4 0.9 > 09/15/2001 - TSH <0.01, Free T4 1.5 > 10/30/2001 - TSH - .02, T3, Free 3.2, Free T4 1.2 > 02/06/2002 - T3 Free 2.1, Free T4 <0.4 > 02/27/2002 - TSH 0.03, T3 Free 7.2, Free T4 2.2 > 06/21/2002 - TSH <0.01, Free T4 2.0 > > My T3 & T4 were either normal or high, but my TSH was always low. My doctor, > who I didn't really like but due to the lack of doctors in this field, said > the TSH was what I needed. First of all, you need to post a reference range for the tests, as different labs have different " normal " ranges. However from what I've seen most of the FT4 ranges top at 2, so let's just look at that: your initial 3.5 is high, and you say below that you started the meds 5 months before this first test result, so you were probably even higher to start-- but going from 3.5 to .9 in a month is alarming. Let me guess, your doc dropped you from 30 mg. to 10 at that point? And of course 10 is way too little, so you ended up bouncing even higher next time...so he put you back up to 30 mg., got you down to 1.5--normal--and then I'm not sure, my guesses get a bit wilder. Did he leave you at 30 for 3 months and make you hypo at .4? then say OMG, better drop her to 20? Can we fire this doctor? Dropping and adding in those huge increments can't help but be harmful to your health. Kinda like taking a shower in scalding then icy water, when what you need is to adjust incrementally to get a dose that keeps you normal. Funny thing is, you were finally normal when you stopped taking the drug--why did you do that? If you were on 20 mg. at that point, you should have stayed with it, and then adjusted down by 2.5 mg. at a time or even 5 mg. at a time, always with a month between adjustments, as your thyroid stabilized. See why I want to fire your doc? As for the TSH, if he (or she) knew his stuff, he'd know that TSH always, always, always lags way behind, and for many people on ATD's never ever comes up to normal ranges. > > I was on the medication from Jan 2001 through May of 2002. My right eye > started after I began the medication. does that mean you think the medication started the eye problem? If so, I can understand why you would not like the meds! But, it is not the case. its the disease itself. > > I know I need to seek some medical attention, but as I mentioned, my home town > lacks any with expertise. > Where do you live? With so many of us, there's at least a chance we know someone somewhere nearby! > I'm going to check out the site now as you recommended. Thanks for listening. > Come back with as many questions as you need to, Maggie--we're here! Terry > > > Happy Holidays >> >> >> >> >> To all, >> >> Best wishes for a happy holiday and healthy New year. With warm regards, >> Zoey >> >> http://holidays.blastcomm.com/ >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Thanks Terry. And yes my doctor sucked and I fired her when I didn't go back for the radioactive iodine treatment or back at all. And yes, at one point she said I was hypo from being overmedicated and once again changed my dosage. She never even gave me a physical exam of my neck or x-rays, like some people I know did. She just collected my money each month and noted all my symptoms (which I know you know all of them). I live in Carson City, Nevada - close to Reno and Tahoe - but we lack qualified doctors of any degree. Does anyone here know of any qualified doctors close to me. Sacramento is 2 1/2 hours away so that would be a possiblity. Maggie Happy Holidays >> >> >> >> >> To all, >> >> Best wishes for a happy holiday and healthy New year. With warm regards, >> Zoey >> >> http://holidays.blastcomm.com/ >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Thanks Terry. And yes my doctor sucked and I fired her when I didn't go back for the radioactive iodine treatment or back at all. And yes, at one point she said I was hypo from being overmedicated and once again changed my dosage. She never even gave me a physical exam of my neck or x-rays, like some people I know did. She just collected my money each month and noted all my symptoms (which I know you know all of them). I live in Carson City, Nevada - close to Reno and Tahoe - but we lack qualified doctors of any degree. Does anyone here know of any qualified doctors close to me. Sacramento is 2 1/2 hours away so that would be a possiblity. Maggie Happy Holidays >> >> >> >> >> To all, >> >> Best wishes for a happy holiday and healthy New year. With warm regards, >> Zoey >> >> http://holidays.blastcomm.com/ >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Hi Terry: I've been having some terrific heart palpitations which keep me from sleeping very well. I went to my regular doctor and they took my blood. Results were very high T3 over 400 and TSH in the negative. He says I need to do RAI now. They gave me betablockers and I will be seeing a new ecronologist next Wednesday. Why do you think my eyes will get worse after RAI? Isn't the hyperthyroidism what caused my eyes to bulge in the first place and wouldn't getting rid of the hyper a way to stop the eyes from getting worse? I am so confused. Maggie Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Hi Terry: I've been having some terrific heart palpitations which keep me from sleeping very well. I went to my regular doctor and they took my blood. Results were very high T3 over 400 and TSH in the negative. He says I need to do RAI now. They gave me betablockers and I will be seeing a new ecronologist next Wednesday. Why do you think my eyes will get worse after RAI? Isn't the hyperthyroidism what caused my eyes to bulge in the first place and wouldn't getting rid of the hyper a way to stop the eyes from getting worse? I am so confused. Maggie Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 Hi Maggie, RAI has been shown in a study by Tallstedt et al to cause a worsening of eye disease in 33% of patients! The Bartalena study shows only 15%, but those patients were not allowed to go hypo at all. The people in the Tallstedt study were not given hormone replacement until labs showed hypo. This is what happens in the real world, so I am inclined to say that the 33% figure is closer to the mark. You could end up in the 33%, or you could be in the 67% that doesn't have progression of the disease or even has improvement. 33%....that's a pretty high risk factor. Especially considering the risk factors involved with ATD's and thyroidectomy are 1%!!!!! I speak from experience as well. I am one of the 33%. I also thought that by taking the RAI, the thyroid hormone would be depleated and my eyes would get better. Doesn't happen that way, and I surely would hate for you to go thru what I have been thru. I am disfigured and disabled. Please do some more research. Below is a URL to my pictures and story. Please look at this and see if this is a risk you want to take. God bless, http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 Maggie, I also quit taking the Tapazole for about a month when I was on them before I made the mistake of RAI. I thought I was having diarrhea caused by the meds. Now I know that hyperthyroidism caused diarrhea, not the Tapazole. My eye disease got bad when I quit the Tap. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 Thanks for your words of wisdom (and experience). I am going to a new ecronologist on Wednesday and I will see if he is abreast of these facts. Thanks again and I will report back on what he says to me. Re: To Maggie Maggie, I also quit taking the Tapazole for about a month when I was on them before I made the mistake of RAI. I thought I was having diarrhea caused by the meds. Now I know that hyperthyroidism caused diarrhea, not the Tapazole. My eye disease got bad when I quit the Tap. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Dear Maggie, Family doctors are great for general medical problems, but you really need the treatment and guidance of a gastroenterology specialist as soon as possible. It's good that your family doctor will do bloodtests and admit you, but you need more specialized treatment than he is able to give you. The pancreas is an organ that few general practioners know very much about, and even the gastroenterology specialists are often perplexed by it's complexities. I cannot emphasize enough the need for you to see a specialist as soon as you can, not months from now. A specialist could find out what caused your chronic pancreatitis, and also recommend treatment for your condition, such as the pancreatic enzymes, vitamins, antioxidants and necessary pain medications to ease your pain. He or she can do tests and imaging studies to determine if there may be some surgical procedures that need to be performed to help reduce the pain. Sometimes there are duct obstructions, or other reasons, such as pancreas divisum, or sphincter of oddi dysfunction that cause your pancreatitis difficulties. There are two doctors and one pain managment specialist in our files. They are from Lexington and Louisville, I believe. Would that be anywhere close to where you live? If you click on " Files " on the left of your screen, and then click on " Pancreas Knowledgable Doctors " , you can locate them. Please let us know if you have any more questions. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Note: All comments or advice are personal opinion only, and should not be substituted for professional medical consultation. >>i am from kentucky, i see a stomach doctor the 12 next month i also have reflex, i do see my family doctor he puts me in the hospital when it acts up, puts iv and does blood tests. Quote Link to comment Share on other sites More sharing options...
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