Deb Posted April 29, 2008 Author Share Posted April 29, 2008 Deb, are you feeling better or are you still sore? I wish I could say I'm feeling better, but actually the pain is spreading. Both hands and wrists are getting worse (I took half a vicadin tonight to be able to type a little) and on the right side from the base of my throat the pain is radiating down into my chest and underarm and across the top of my shoulder. There are days when even the flesh on the back of my upper arm is tender to the touch and I know that's not arthritis. Either the dr has to admit that my "normal" thyroid levels are not what's normal for me, or he's going to have to work a lot harder to find out what's going on. He needs to quit ignoring the cardiac symptoms too. The little nurse in the radiology lab was freaking when she saw my pulse was 110 while I was just laying there quietly waiting for the doc......especially after I told her that I'd already taken a valium. So, the sooner the dr gets his proof that the nodules aren't cancer, the sooner we can move onto the MRI and maybe find some answers there.......or he can just quit messing around and finally realize that normal thyroid labs don't mean that there's nothing wrong with my thyroid or pituitary. Deb Quote Link to comment Share on other sites More sharing options...
busyone Posted April 29, 2008 Share Posted April 29, 2008 Deb, my heart goes out to you with all the medical stuff. You shouldn't have to wait like that. I find the waiting unbearable at times, and when you are in pain its even worse. I'm hoping you get some answers and some action......how very very frustrating!!!!!! leslie Quote Link to comment Share on other sites More sharing options...
Minis On The Edge Posted April 29, 2008 Share Posted April 29, 2008 There are days when even the flesh on the back of my upper arm is tender to the touch and I know that's not arthritis. Deb, you just described a symptom I have been having, Skin sensitivity in my upper arms and sometimes on my thighs too. It feels tender when touched as if I bruised it and it only happens when my thyroid gland swells up. My doctor told me it is a coincidence, guess it's a coincidence that I am getting a new doctor too. I see him next week. This was the part I was afraid of all of the back and forth with the doctors. I gained 12 pounds in 7 days and then woke up one morning and 8 of those pounds were gone (I went through that a lot last time). The doctor said I must have a messed up scale cause that is a coincidence or impossibility too. Mind you I am not eating any differently nor have I been working out this time around. B) I bet if we put our knowledge together we probably know more than our doctors and can come up with a better solution and therapy program than they have :lol: . I hope this doctor IS the right one for you and that he calls soon. I would love to hear him tell you some good news or at least tell you how we can get you feeling better soon. It's so hard to find a Good doctor around here B) Quote Link to comment Share on other sites More sharing options...
Wolfie Posted April 29, 2008 Share Posted April 29, 2008 Hi Tracy and Deb! Deb, glad the test is over for you. It sounded horrible as I was reading it, and all of your symptoms sound terrible too! I hope you get a report soon from your doctor! Tracy, I hope your new doctor can help you too! Quote Link to comment Share on other sites More sharing options...
Deb Posted April 30, 2008 Author Share Posted April 30, 2008 I bet if we put our knowledge together we probably know more than our doctors and can come up with a better solution and therapy program than they have B) . Sweetie, I *know* you and I could tell these specialists a thing or two about Graves Disease! They may have the medical degree, but we live with this stuff and we know what the symptoms are. Skin and flesh tenderness are nothing new to me. Sometimes my scalp feels so tender that my hair makes it hurt.......and holding a cold soda can hurts my hand. Not freezes it, but actually causes pain like my hand is under pressure. Heat does the same thing and, as you know, that's all related to the hypersensitivity of the nervous system. <shaking head> Why do we know this and the doctor's don't? I'm glad you're getting a new doctor too Tracy. The back and forth and "go here", "go there", "test this", "test that", "shoot the cat" hoops that they put us thru are more exhausting than the actual disease. If we had enough energy to play all these silly games, we wouldn't need the doctor in the first place! LOL! I called Dr K today and the nurse said he's out of town till Thursday. I told her I was waiting for biopsy results and she said she'd look them up for me and call me back. No call all day. I'm trying not to stress it, but of course, the little voice in the back of my head says that if they didn't call back it means the results are something only the doctor can tell me. I'm arguing with the little voice and telling it that it's probably something rational like they haven't gotten the results yet or they just forgot to call me. The reality is that the chance of cancer is minimal with the type of nodules I have, but I'd really like to get the confirmation about that and move on. Deb Quote Link to comment Share on other sites More sharing options...
KathieB Posted April 30, 2008 Share Posted April 30, 2008 "move on" .. wouldn't that be bliss! B) Quote Link to comment Share on other sites More sharing options...
havanaholly Posted April 30, 2008 Share Posted April 30, 2008 I don't wish the symptoms of Grave's on anyone, but wouldn't it be refreshing to find an endo who has at least a clue what's going on with y'all, and wouldn't be so cavalier about keeping you informed? Keep nagging, you two! You have a right to be informed, NOT to be kept dangling & in pain! Quote Link to comment Share on other sites More sharing options...
Gayle Posted May 1, 2008 Share Posted May 1, 2008 You can bet that if it were the doctor suffering those symptoms, he would have some answers. Quote Link to comment Share on other sites More sharing options...
wenlaine Posted May 1, 2008 Share Posted May 1, 2008 Deb, have you heard anything yet? I can't imagine having to go through all that you've been going through, this is just awful. I sure hope you're feeling a bit better since the biopsy. Quote Link to comment Share on other sites More sharing options...
Esther Posted May 1, 2008 Share Posted May 1, 2008 On the Smurf question. I have it on good authority (Yahoo Answers) that a Smurf turns purple when choked. I hope you're feeling better Deb. Still praying for you....it is the National Day of Prayer today. Quote Link to comment Share on other sites More sharing options...
Deb Posted May 1, 2008 Author Share Posted May 1, 2008 Deb, have you heard anything yet? <shaking head> Not a word, so apparently, the results aren't something that the PA can tell me. The dr should be back in his office today, so I'm sitting on the phone like I'm waiting for it to hatch. Deb Quote Link to comment Share on other sites More sharing options...
Anna Posted May 1, 2008 Share Posted May 1, 2008 Shoot, I had hoped that you had got some news by now, well, believe me I am there just next to the phone with you as well, but I will fill your ears with mini chatter while we wait! Hugs!!!! Quote Link to comment Share on other sites More sharing options...
Deb Posted May 2, 2008 Author Share Posted May 2, 2008 The dr called last night and the good news is that the biospy was normal. He said that an annual biopsy will be needed but not worry about it and that I'll just have to get used to the pressure of the nodules in my throat. And then he dumped me. I've never been dumped by a doctor before so I sorta sat there with my mouth hanging open. Basically, he said that he couldn't figure out what was wrong with me. Despite the fact that I have almost every symptom of Graves in addition to 14 nodules in my thyroid gland, all my blood tests keep coming back normal, therefore, there is nothing wrong with my thyroid. I pointed out the cardio issues; the textbook symptoms of Graves; the fact that the pain didn't start till AFTER they took me off the medication that controlled my thyroid............and his response was, "Well, it's nothing that I can help you with. Have your new doctor contact me to get your records". I guess that if I'm just going to stubbornly refuse to fit into his medical textbook template, he's not willing to dig any deeper. Or maybe he just can't deal with failure and I'm screwing up his batting average. I don't think I've stopped crying since he called. I managed to get under control enough to make a call to the hospital where Bruce was treated for his heart attack and asked for a physician referral for a rhuematologist, which is as close to an autoimmune specialist as I'm going to get. They gave me three names. I googled them and found one of them listed as a respected researcher of a-i diseases and treatments so I called her office. They said they have to get my records from the endo for her to review before they'll take me so I called the endo and told them where to fax them and now I'm waiting to see if she'll take me, how long it will take to get into see her, and if there's anything she can do. In other words, it's back to square one again. Deb Quote Link to comment Share on other sites More sharing options...
Anna Posted May 2, 2008 Share Posted May 2, 2008 >handing over the box of tissues as well as the green apple pucker (or I have raspberry if you wo uld prefer that???)< OK, my first thoughts aren't printable so I won't get into those but sheesh, how much will you have to endure huh??? Keeping figners crossed that the new lady (?) doc will see you and actually listen and get some actual treating in gear real soon, and in the meantime perhaps a visit over here???? Or, I will just have to keep bombarding you with spells from over here as well as a shoulder to lean on when you need a break or a chatter! Loads of gentle energizing hugs!!!! >while muttering under my breath over docs who can't deal with anything that isn't textbook material, sheeesh!< Please take a piece of paper that needs shredding to the new machine and watch Napoleon's amusment as a cheer-you-up! (And if Bruce needs more kick-butt help, I will just have to check out the flight schedules!) Quote Link to comment Share on other sites More sharing options...
ilovecats Posted May 2, 2008 Share Posted May 2, 2008 The dr called last night and the good news is that the biospy was normal. He said that an annual biopsy will be needed but not worry about it and that I'll just have to get used to the pressure of the nodules in my throat. And then he dumped me. I've never been dumped by a doctor before so I sorta sat there with my mouth hanging open. Basically, he said that he couldn't figure out what was wrong with me. Despite the fact that I have almost every symptom of Graves in addition to 14 nodules in my thyroid gland, all my blood tests keep coming back normal, therefore, there is nothing wrong with my thyroid. I pointed out the cardio issues; the textbook symptoms of Graves; the fact that the pain didn't start till AFTER they took me off the medication that controlled my thyroid............and his response was, "Well, it's nothing that I can help you with. Have your new doctor contact me to get your records". I guess that if I'm just going to stubbornly refuse to fit into his medical textbook template, he's not willing to dig any deeper. Or maybe he just can't deal with failure and I'm screwing up his batting average. I don't think I've stopped crying since he called. I managed to get under control enough to make a call to the hospital where Bruce was treated for his heart attack and asked for a physician referral for a rhuematologist, which is as close to an autoimmune specialist as I'm going to get. They gave me three names. I googled them and found one of them listed as a respected researcher of a-i diseases and treatments so I called her office. They said they have to get my records from the endo for her to review before they'll take me so I called the endo and told them where to fax them and now I'm waiting to see if she'll take me, how long it will take to get into see her, and if there's anything she can do. In other words, it's back to square one again. Deb Deb, i'm glad your test was negative but i'm appalled by the rest of your post. That is horrible! I'm so sorry to hear about that, what a jerk. I hope your new doctor can help you. Quote Link to comment Share on other sites More sharing options...
Esther Posted May 2, 2008 Share Posted May 2, 2008 Ouch! Sounds like he basically was saying "I don't know what it is...ask someone else". Quote Link to comment Share on other sites More sharing options...
nuttiwebgal Posted May 2, 2008 Share Posted May 2, 2008 OUCH! poor kid! what a shame! but at least he hasnt wasted any more of your time and money! it seems to me he should have referred you to someone more qualified to deal with your issues. what a BLEEPING jerk! nutti Quote Link to comment Share on other sites More sharing options...
christinee Posted May 2, 2008 Share Posted May 2, 2008 Deb, I'm sorry to hear everything you've been through. I'm not surprised that your doctor dumped you. In my experiences, I learned that doctors run away from anything that's not easily fixable or that they know the answer to. Medical mysteries? You're on your own according to most doctors. I'm sure you probably already researched and thought about this, but what is your diet like? I read the other day that eating/drinking a lot of soy products can severely affect your thyroid, raise estrogen levels, increase breast cancer risk, etc. Iodine (shell fish, shrimp, etc), also is a no-no for people with thyroid problems. Also, have you checked your house for any signs of anything there that may be making you sick - black mold, mildew, odorless gas leaks, etc. Also, have you double checked for any drug interaction issues? I'm sorry if you've already done this and I'm repeating work you've done, I'm just trying to offer some suggestions that maybe the doctors overlook because they're...well...doctors (if you know what I mean :/ ) Keep us posted and I'll be sending best wishes and good luck your way. Christine Quote Link to comment Share on other sites More sharing options...
KathieB Posted May 2, 2008 Share Posted May 2, 2008 Deb, I'm sitting here absolutely flummoxed but praying that the new doctor will be up to the challenge. I think there is a special place in hell for doctors who dump patients who stump them. He ranks right up there with the soul-less idiots who dump puppies and kittens along the road. Is the Mayo Clinic or Johns Hopkins an option? Quote Link to comment Share on other sites More sharing options...
Deb Posted May 3, 2008 Author Share Posted May 3, 2008 I'm just trying to offer some suggestions that maybe the doctors overlook because they're...well...doctors (if you know what I mean :/ ) Christine, I think you summed it up very well. Doctors are, well, they're doctors and most don't condescend to share trivial things with us like diet or environment. I've seen five doctors since December and not a one of them has even asked if I use iodized salt or anything else about my diet. But yes, I've done a lot of research about what I can do for myself. After Bruce's heart attach, our diet changed a lot so it's fairly healthy. No soy products and we use non-iodized sea salt. I've added suppliments like fish oil and I start every day with a probiotic shake. I've also added yogurt, granola and nuts to my diet every day and cut waaaay down on my caffeine. Instead of soda or tea, I drink vitamin water now. I do 20 minutes of tai chi every day and two hours of transcendental meditation and chakra cleansing. I appreciate you bringing it up tho. While the doctors seem to prefer shoving tranquilizers and pain killers down my throat, I'm not comfortable with that and would much rather use as many natural alternatives as possible. I think there should be a balance between chemical and natural treatments. That doesn't mean that I'll turn away the vicadin when I need it which is why I'm typing tonight. Is the Mayo Clinic or Johns Hopkins an option? I wish that they were! Unfortunately, that's not an option right now. OK, my first thoughts aren't printable so I won't get into those Betcha you were calling him a lot of the same things I was! I had quite a few things to say about his parentage. I'm keeping a positive thoughtform going that the rhuematologist will be able to see me and that she'll know more about how to help me. Maybe, just maybe, she'll see the whole picture. Deb Quote Link to comment Share on other sites More sharing options...
goodteach0 Posted May 3, 2008 Share Posted May 3, 2008 Deb, I'm keeping my fingers crossed and sending positive thoughts your way. I sure hope the new doc will take you and come up with some good answers. There HAS to be some logical reason why you have been feeling so terrible Hang in there my friend. Quote Link to comment Share on other sites More sharing options...
Minis On The Edge Posted May 3, 2008 Share Posted May 3, 2008 Deb, I am so sorry. I did not know a doctor could do that without giving you a referral. Some of these Doctors today are so lame. I am so sorry you are going through this. This is why I have hesitated even going through this process again for myself. It is like hiking through the woods without the proper gear, Alone. Sending you Big Hugs!! Quote Link to comment Share on other sites More sharing options...
busyone Posted May 3, 2008 Share Posted May 3, 2008 Deb I'm sorry to hear this, but I'm not surprised. He sounds like a real jerk. I'm hoping the new Dr. will be able to be of more help and a much better personality! You're better off without him! I am sorry, hearing things like this infuriate me. Will keep my fingers crossed for you. leslie Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted May 3, 2008 Share Posted May 3, 2008 Grrrr! He dumps you and then doesnt even have to common courtesy to refer you to someone who might be able to help! When my ENT told me that I was a puzzle, he referred me to a ENT in New Haven. I have had the best care and I am glad the 1st Dr. decided it was beyond his scope. Are there any teaching hospitals in your state or surrounding states? There has to be some reason you are feeling the way you are. Hello! You stop taking the meds and the symptoms appear and get worse. That means the meds were hiding something. What could those meds hide? They should see if that can help with finding an answer to the puzzle. If it is not thyroid what else could it mask? There a bagillion auto immune diseases out there. Some are harmless....Some are not. They have to hurry..quickquick..to get closer to the answer. I hate this. I went thru this Deb.. *Oh you arent sick..you just do not like your job.* *Depressed people feel pain more then normal people.* I went thru many doctors until I ended up in NYC. Yup..took a train to the Big Apple and found my answers. THANK G! Not saying you have to come this far (but if you did..I would be THRILLED!) but maybe you and bruce are going to have to travel a bit to get your answers. Quote Link to comment Share on other sites More sharing options...
Peggi Posted May 3, 2008 Share Posted May 3, 2008 Oh Deb, this latest news just sucks! Maybe since you are at square one, you should see and internist. It is my understanding that they specialize in adult diseases and include a variety of specialities under one umbrella. In our region they can even be named as your primary care doctor, so normal co-pays are used and not the higher specialist fees. I'm crying right along with you sending you <<<hugs>>> and wishing I was there to deliver them in person. Quote Link to comment Share on other sites More sharing options...
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