Corwin Posted February 13, 2008 Share Posted February 13, 2008 I'm here! I'm okay, just confused and disappointed because there's still no treatment or solution. The diagnosis has changed back to Graves Disease and not toxic autonomous edenoma or TMNG. The dr said that the blood tests all showed my thyroid levels including T3 and T4 to be in normal ranges. He said that the main problem is that I've been on the tapazole (the medication I take for my thyroid) too long and need to quit taking it immediately. He said most of the time it's only used for a year at the most to put Graves disease into remission and I've been on it for 13 years. He said that might be a new record and it's the tapazole that's causing my body to think that my thyroid is out of control. Or maybe my thyroid really is out of control, but we won't know that till I've been off the tapazole long enough to get accurate test results. Apparently, with stopping the tapazole, I'll probably feel worse for a couple of months.....or still the same.....but not any better. I'm not sure I can take that. In April they'll run another set of blood tests and see where my thyroid is at then. If it shows that the Graves Disease is not in remission, then they'll either nuke it or remove it. He said he'll want another ultrasound done in the next couple of weeks and they'll call me back when they have that scheduled so he can compare it with the old one. He changed his mind on the diagnosis about the nodules being hot/autonomous after seeing the copies of the first ultrasound I had done years ago and said he didn't see anything in that or in the results of the radioactive iodine uptake test done at the same time to indicate they were the type of nodules to go autonomous. The new ultrasound will probably show if they are or not, or at least if they've grown. If they have grown, then they'll do a biopsy. The worst of it is that he said I won't feel any better for at least a couple of months. I broke down and started bawling about that coz I don't know if I can go on feeling like this. I'd rather have them just do surgery tomorrow then go spend another day feeling like I do now. On one hand, it's not bad news, but on the other hand, it's not good news either. Basically, it's back to square one where I was 13 years ago. Deb Oh i do hope you feel better soon. Wishing you the best of luck. Quote Link to comment Share on other sites More sharing options...
Violet2Dawn Posted February 13, 2008 Share Posted February 13, 2008 We are all still here for you. Deep relaxing breaths, hot tea, good books, cookies and hand all helping to hold you together. You will get through this, we will help you. (((((((((((((hugggssss)))))))))))))) Quote Link to comment Share on other sites More sharing options...
Shy Spirit Posted February 13, 2008 Share Posted February 13, 2008 Sorry there wasn't better news. Your feelings must be so mixed up over this. You've really been on a long roller-coaster ride, haven't you? Wish I could hand you a magic pill to fix everything up, Deb. Hang in there - the doctor's got to work his magic on you, and then you'll start to feel better. Quote Link to comment Share on other sites More sharing options...
Deb Posted February 13, 2008 Author Share Posted February 13, 2008 To be honest, I'm a little miffed at the fact that he scared the stuffing out of me and had me go in just to tell me that I still have Graves Disease and to stop taking the medication I'm on. He could have done that over the phone without scaring me half to death. I'm glad he's at least scheduling an ultrasound, but I'm more disappointed than I can say to hear that there's nothing that can be done to make me feel better for several months......and that I'm going to feel worse for awhile. I told him that "worse" is impossible. The end result is going to be surgery and I know that for a fact. But the doctor says we have to go thru this whole process of clearing my system of the tapazole, then watching my thyroid levels go back into the stratesphere, then try another type of medication before they'll consider surgery (ie: before the insurance will pay for it) He said that 30% of Graves patients don't come out of remission, but since I've been treated for thyroid problems since I was 9 years old, I think I can safely say that the odds are against me going into remission. I even have reports from a pathologist from several years ago saying that eventually my thyroid would have to be removed. Besides, I already have all the extreme symptoms of active Graves......it's just the tapazole that's masking it in the blood tests. I'm sorry to be such a downer guys. It's just very frustrating to know that there's a cure for this and I could feel better in just a few days but it's being withheld from me. Deb Quote Link to comment Share on other sites More sharing options...
goodteach0 Posted February 13, 2008 Share Posted February 13, 2008 Sheesh,Deb, I know this must be horrible for you. Are there any meds you can take for the symptoms while you have to do this waiting for the surgery? Universal healthcare come on. Hugs to you my friend. Quote Link to comment Share on other sites More sharing options...
Corwin Posted February 13, 2008 Share Posted February 13, 2008 Aww you poor thing. I hope you feel better sooner. Quote Link to comment Share on other sites More sharing options...
Anna Posted February 13, 2008 Share Posted February 13, 2008 First and then another !!!! Darn doc to scare both you and us like that, hmm, I just might need to bring out that spell book after all, what do you think Deb, itching nose or "hot feet" spell on him for that faux pas??? And seriously, I am sorry for that you really have to go through the "worse" time even before it could be considered to do what will give a positive turn around! Am here for the venting, and a you being a downer, never, a burden shared is a burden halfed so please share away so perhaps it can be a little easier on your mind! Lots of hugs!!! Quote Link to comment Share on other sites More sharing options...
Muriel Posted February 13, 2008 Share Posted February 13, 2008 *Hugs* I'm glad it wasn't worse news, though as you say YOU can't feel any worse than you do already, yet they say it'll still get worse, so its certainly not good news either. You know we're all friends here to support you, so anytime just have a vent. I hope that the old med stop working quickly, that your thyroid recovers to what its supposed to do without the meds quickly, that new meds work quickly or don't work-quickly so that they can move you on to surgery. Best wishes and positive energy coming your way Muriel Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted February 13, 2008 Share Posted February 13, 2008 Oh Deb I am so sorry. I feel for you big time. You know that the *cure* is within your reach but you have to jump thru burecratic hoops to get there. I am not hoping for the worst..I am hoping that you do not have to wait so long to be treated. Meaning I hope your body goes into overdrive in the coming weeks and he is FORCED to do the surgery. FORCED!! I am hoping and thinking... Let Deb have a miraculous turn of health events and feel better really soon..but if that is not possible...Let Deb get the treatment/surgery sooner then the Doctor predicts... Let Deb have peaceful days and sleep filled nights from now until eternity. Let Deb be able to sit still long enough to enjoy her pastimes...Let Deb feel the hugs and kisses from her near and dear no matter how far away from her they are...Let Deb have her life dreams fullfilled. (((((Big Hugs))))) Quote Link to comment Share on other sites More sharing options...
TinyJudi Posted February 13, 2008 Share Posted February 13, 2008 Oh Deb, I am sorry you have to go through so much. I often ask myself why being healthy is such hard work. The bad thing about being on meds for so long, is that some of them have not been tested for long term effects. My hubby is on meds like that. They have no clue how his body will react to being on them so long. It is awful that you have to feel worse in order to feel better. We are all here for you my friend and you just vent any time you need to. Sending good vibes and feel better hugs your way. Quote Link to comment Share on other sites More sharing options...
New Day Posted February 13, 2008 Share Posted February 13, 2008 Deb, I am so sorry! Quote Link to comment Share on other sites More sharing options...
uppitycats Posted February 13, 2008 Share Posted February 13, 2008 I'm sorry it's not something quickly and easily "fixable", but really glad it isn't something much much more serious! 13 years IS a long time to be on that med...and it will take awhile for it to get out of your system. I know you'll be in regular touch with your doctor to report the current situation..and maybe he can get that surgery scheduled much more quickly. Hang in there. Lots of hugs coming from here. Quote Link to comment Share on other sites More sharing options...
Shakyshaky Posted February 13, 2008 Share Posted February 13, 2008 Deb I am sorry it wasn't better news. I keep you in my thoughts and prayers that you will feel better as soon as possible! Quote Link to comment Share on other sites More sharing options...
ilovecats Posted February 13, 2008 Share Posted February 13, 2008 Deb, I'm sorry, I know it is frustrating for you. There is a medical reason for waiting yes, but also the insurance issue. Pee on the insurance issue. These companies make me sick. They take take take your money but dictate how your treatment will be run. Maybe after you start feeling worse you should start calling him with your complaints. Maybe all he has to do is a trial of this before he goes to surgery and if you get that bad, why suffer out the entire course that he is recommending? I say complain when it starts getting worse. Call their office constantly. Take care Deb, I'm sorry things have returned to where they were and what a shame that your care was managed in such a way that you've had to suffer all these years. It blows my mind that if you were only supposed to be on the drug for one year, that you were on it for 13. How did that happen? I hope that you are under better care with this doctor. Quote Link to comment Share on other sites More sharing options...
SallyG Posted February 13, 2008 Share Posted February 13, 2008 Isn't it amazing that the people at the insurance companies who make the rules about treatment are not doctors? Plus, I've found that too many of the employees that administer the payments, etc...don't understand what they are doing! I hope things get worked out....never hesitate to complain to the doctors AND the insurance company if you don't feel you are being treated adequately. Sometimes you have to rant and rave at the insurance company to get them to authorize the treatment you need. It's time they put medical care back in the hands of the doctors instead of the morons at the insurance companies. Quote Link to comment Share on other sites More sharing options...
Deb Posted February 14, 2008 Author Share Posted February 14, 2008 It blows my mind that if you were only supposed to be on the drug for one year, that you were on it for 13. How did that happen? Beats me. I've had three doctors over those years and none of them ever put a time frame on that medication. The one I saw just a couple of months ago did all the bloodwork and told me everything was fine and to keep on taking it. Apparently only the specialists are entitled to the information that this medication is for a limited time to put the disease into remission. Isn't it amazing that the people at the insurance companies who make the rules about treatment are not doctors? Ain't that the truth! And that's what all this comes down to. The doctor has to follow the insurance company "Guidelines to practicing medicine if you want to get paid" rule book. I had to play the same game when I was going thru menapause. Several doctors kept telling me I was too young and wouldn't treat me correctly........I finally found an internist/surgeon who said "What's age got to do with it?" and correctly diagnosed me. I'd been going thru non-effective treatments for about 5 years at that point and he said we weren't going to mess around anymore and did the surgery. I felt better as soon as I woke up! The insurance company refused to pay him because he didn't follow proper procedures. The "proper procedure" he left out was to send me to a psychiatrist to make sure the problem wasn't all in my head. He told me he was pretty sure that there wasn't anything going on in my mind that would make me bleed three weeks out of four. Anyway, he said "I've never practiced medicine to make an insurance company happy. I practice medicine to cure my patients" and never charged me a dime of what the insurance company refused to pay. And that's just one reason I love that man. Deb Quote Link to comment Share on other sites More sharing options...
wenlaine Posted February 14, 2008 Share Posted February 14, 2008 Oh Deb, this has got to be the worst time for you. I'm so sorry you have to go through this. Try to think positively if you can and hopefully the time will go by quickly and the remedy closer. You're in my thoughts and I'm sending lots of hugs. Quote Link to comment Share on other sites More sharing options...
Corwin Posted February 14, 2008 Share Posted February 14, 2008 Well thats a decent doctor! Quote Link to comment Share on other sites More sharing options...
Wolfie Posted February 14, 2008 Share Posted February 14, 2008 Amen Heidiiiiii All that you say I am wishing. I'm at a loss for words here and your words give me comfort and I do hope comfort to Deb too! My wishes are that you get well and have a very normal life again! Quote Link to comment Share on other sites More sharing options...
Deb Posted February 14, 2008 Author Share Posted February 14, 2008 Well thats a decent doctor! When I say I love that man, it's not just an expression. I really, truly do love him. He's seen me thru some of the worst times in my life and helped put me back together again. He even helped me thru my divorce. Unfortunately, he's not close enough for me to see him since I moved to Denver. However, if it comes down to surgery, I'm seriously considering trying to figure out a way to go back to Sterling for a couple of weeks to have him do it. I picked up a voice mail this evening from the lab telling me the endo called them and they need to have me call back to schedule the ultrasound. I'll call them tomorrow morning since I got the voice mail too late to do it tonight. If the nodules have changed shape or are larger than they were in the scan from '94, then they'll schedule a biopsy. Deb Quote Link to comment Share on other sites More sharing options...
havanaholly Posted February 14, 2008 Share Posted February 14, 2008 You had to wait until we were out of town to go through all of this, huh!? Well here are {{{BIG HUGS}}} for you that the tapazole quickly clears your system and your doctor can whack that bad rascal out. I'm still not caught up from five days with no 'puter & leaving tomorrow for another week, so could you please stay healthy? I'm sending LOTS of prayers for your healing. Quote Link to comment Share on other sites More sharing options...
Deb Posted February 16, 2008 Author Share Posted February 16, 2008 I'm still not caught up from five days with no 'puter & leaving tomorrow for another week, so could you please stay healthy? <giggling> I'm tryin'!! The ultrasound is scheduled for the 22nd but I have no idea how long it will take them to get the results to the doctor and then back to me. I'm not really worried about that part of it tho. I know that at least one of the nodules has gotten bigger because it's one I can feel. So based on that, they'll probably want to do a biopsy, but the type of nodules I have are not usually documented as turning malignant. However, if they show they've grown or there are more of them (as far as I know there are only 7)........or if they're positioned to potentially interfere with my breathing or circulation, then we get to talk surgery. (have you ever known anyone so eager to have their throat cut????) I plan on showing them my trick of putting my arms up and not being able to breathe, or turning my head too far to the right and passing out. I'm on day four without the tapazole and while I don't have any more noticable energy, I've lost two pounds since Tuesday and have only had a couple of very mild heart palpatations. Bruce says my eyes look brighter. It will still take a few weeks for the full effects of the withdrawal of the tapazole to process with some ups and downs, but so far, so good. Deb Quote Link to comment Share on other sites More sharing options...
Corwin Posted February 16, 2008 Share Posted February 16, 2008 I realy hope all goes well. Yeesh i though i was in pain, i got my toenail removed with the root. it was painful. But you realy need a distraction, maybe minis mght hep. I realy do hope you feel better. Wishing you all the best. Please feel a little better. Quote Link to comment Share on other sites More sharing options...
jeninky Posted February 16, 2008 Share Posted February 16, 2008 They told me in 1997 that I had to have the goirter taken out.. final I had to do it.. hmmmm okay then! I had the surgery done as outpatient cause I had really bad insurance and could not afford the stay in the hospital... So I had the surgery went into recovery and then went home with my drain tube... I was on bed rest for a couple days and went back to the doctor and had the tube removed that was the worst part of the surgery... day 5 went back to work... The surgery part was not that extreme as it sounds... The only thing was that after I came home I had to work on the head movement cause your kneck is stiff from not moving for a couple days... day 7 or 8 My body said wt*???? I had those Ganglion cysts come up on both wrists and my joints went stiff... went to a Arthitis doctor and they put me on medication and then starting to feel better after that.. cycsts went away after a week or so... all that last about a week or so and I was better after that... but I am still not any medication I had one lobe taken out and the goiter... They said that the one was working fine on it's own... Now I have had hair loss ever sense though and tired all the time and gained weight.. But they assured me that it is not the Thyroid! It is probably cause I am obese.. I have PCOS too and have tried everything so I am thinking that they will have to do a hysterectomy sometime this year but I am holding off cause I am planning another surgery next month... SO I know what you are going through and how you feel! I am here if you need to talk about it... Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted February 17, 2008 Share Posted February 17, 2008 I have PCOS too and have tried everything so I am thinking that they will have to do a hysterectomy sometime this year but I am holding off cause I am planning another surgery next month... Chelsea has PCOS. She has been taking Metformin for it for the past couple years. She has lost a bit of weight but not alot. If you saw how much she actually ate during the day you would wonder where here weight was coming from..She should be a skinny minny. She has to deal with the acne and hair but her cycles are fine. I have a feeling that I may have it too. I have always had all the symptoms that Chelsea has except I was a fertile myrtle. What have you tried for it? The acne is driving her up a tree and nothing seems to be working for it. Quote Link to comment Share on other sites More sharing options...
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