What is Graves Disease
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative ex...
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I'm confused with my Grave's
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I'm not sure where to start. I was first diagnosed with Hyperthyroidism 7 years ago shortly after the birth of my first and only child. I was sent to an endo who immediately wanted to do the RAI. Since I was new to all this I took my mom with me who thankfully declined RAI and wanted a second opinion. I received my second opinion and was put on PTU, XANEX, and Paxil. I don't remember all the specifics but remember not taking my medication long before deciding I felt fine and stopped everything. I felt great for over a year before it all came tumbling back down. Back to the doctor and back on PTU, XANEX, and Paxil. After several years of doc appointments, levels never in the normal range and still always feeling ill I thought I would first stop my Paxil. WOW, I'm thankful for being a Christian and being able to come off such a drug that causes awful withdrawl side effects. I know many people this drug has been wonderful for, but for me I just never felt like it helped so I choose to stop. After all my withdrawl effects went away I actually started to feel a little better and was actually no longer waking up every 1-2 hours. Once I started sleeping better I decided to stop my birth control pills and PTU. I actually felt great for about a month off my meds and had my follow up appointment where the doctor stated my levels were worse than before and advised I started back the PTU and I did. 6 months later I finally decided it was time after 7 years to find a 3rd and new endo. I recently had the uptake scan performed after being off my PTU advised by my doctor for 4 weeks in order to have the uptake performed. The doctor called me last week and informed me I had Grave's Disease even though my other endo never told me this, something about just a toxic goiter (but I could be way off on if that means it's all the same) and my new endo wants me to have the RAI which is where all this comes into play. My doctor told me I can't take the PTU forever especially since I have never hit remission but I have now been off my meds for 6 weeks and feel GREAT. My only complains is not sleeping great again, my eyes have been bothering me, and my legs have been sore (my legs have never bothered me before so I don't know if this is realted to the Graves and no medication?) but those symptoms I can handle with all the other symptoms I have experiences over the past 7 years those are so minor. I would appreciate any positive stories ATD and RAI and negative. Even though I have had this for 7 years I just haven't researched much and have only had severe sickness during my removal of Paxil from my system.
(i'm sorry this is so long, trying to get all the info I can before I see the doc next week) Posted on 11/01/09, 10:11 pm |
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As I've stated in my "First Step after Diagnosis" thread, it is VITAL to find a doctor to medicate you properly.
If a doctor doesn't medicate you properly before you have RAI or surgery, how the heck can one expect to be medicated properly afterwards?? You'd "just" be trading off one set of symptoms for another.....and the symptoms of hyPO are just as bad, if not worse, than hyPER. Please, find a doctor that will medicate you properly before making any decisions for a permanent treatment. 
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Sorry I'm late on just now seeing these posts. I have been enjoying the beautiful 70 degree weather we have been having in November. LOVING IT
Cin, Yes Paxil is an anti-depressant and in most cases is used to treat depression. However, in my case they used it to treat my anxiety associated with my Graves. I do not feel it ever worked and chose to stop it due to more side effects it was causing rather than helping. I think the other girls chimed in with answering your PTU question. You did mention the leg pains and YES I'm absolutely having legs pains and there is absolutely no chance what so ever I'm hypo or even close to being hypo at this moment. My FT3 and FT4 were in range at taking my 50mg PTU twice a day but in order for me to have my uptake I have been off my meds for 6 weeks so I know I'm more hyper now than 6 weeks ago. Actually the longer I'm off my meds the worse my legs are getting. I have been feeling great for the past 5 weeks but since Thursday of this week I started to feel ill again, anxiety has returned, resting heart rate has been 88-90 if not higher, and my leg pains are so much more severe than ever before. I will be getting labs done on Monday to see where my levels are after 6 weeks of no meds and hopefully get back on the right dose as I have choosen to not have RAI and maybe he will have some answers for my sore legs. Cin you also asked about remission and I have never actually acheived remission but from research they say you can reach it on ATD's in 2-4 years. I sure hope you start feeling better soon Cin and hang in there. I promise it does eventually all get better as we have all experienced-but I do feel much better than in previous years. Cathy, Thank you for your post. I have chosen not to do the RAI as you probably have read above and will be seeing my doctor on Monday for more lab work and my new dose of PTU hopefully. I did have the uptake scan and having been trying for over a week to receive my results. I'm going to ask my doc on Monday and hopefully they will give me a copy while I'm there. I don't know anything about the hot or cold nodules but in my physical exam they he did tell me he felt a lump and there was something there. I will post more info after my appointment on Monday and then I will most definately post my new labs as soon as I receive them. One last thing - I keep thinking I'm done and then I think of something else. lol I believe Cin asked my age and I'm 28 with no other medical problems or issues in my lifetime. Just my thyroid problems. I'm happily married and a mother of one beautiful daughter. God Bless! my favorite saing "God is great all the time, all the time God is great"
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