About 2 years ago, after a fire in my home, I became stressed out and lost a good deal of my hair. I missed a lot of work and was very upset. A few months after the fire, I went to the doctor because I was feeling tired and lost my hair. The doctor took some blood tests and sent me for a thryoid uptake test (iodine). This is the good part. My test came back showing that I had Grave's disease, but the doctor missed the report and somehow it never got discussed with me. I continued not to feel well and to date in late November 2004 still feel absolutely awful. My symptoms have gotten worse and I can hardly get out of bed or bend due to the pain. I recently went to the eye doctor who told me to see a neurologist as he suspects I have Graves disease, Lupus and/or bad arthritis; which is affecting my eyes. I am beginning to see gray sometimes and the color that I used to see is not so sharp. My headaches have me in agony at times and my vision is often blurred. Over the past few years, my sensitivity to light has worsened. The interesting part of all of this is that I only found out today that I have Graves disease. I accidentally stumbled into this by reading a lab test that I had requested a long time ago and hadn't read! I figured nobody else cared so why should I, so I didn't pay attention. I have been to my doctor several times complaining about pain and other symptoms to no avail. He took the thryoid T3 test on a few occassions and said it was normal so go home and stop worrying. I now recall arguing with my doctors office staff in that I was supposed to be going for a thryoid uptake test and instead I was sent for a thryoid scan. I have nodules also that seem to be ok for the past few years. This is a separate issue from the Graves disease. The bottom line here is that the doctor totally missed the report and didn't read it although it was sent to this office. I have now discovered this report and have found out tonite for the first time that I have Graves disease. All of the symptoms that I have been experiencing are real! Where do I go from here? I am scared that I am going to go blind as my eyes have gotten very bad and I am in a lot of pain vision wise and body wise. The pain in my body is all over at this point and I can hardly move. It is difficult to swallow at times also and I am not sleeping at all as I wake up every 3-4 hours. My hair is thin and awful. My face is puffy and my eyes are the same. I am a mess and am totally disgusted. I have put on so much weight and no matter what I do, I can't get it off. I am angry that my doctor coudn't take the time for me and read my report so he would know what was wrong with me. I have had Graves disease for at least 2 years and was not aware of it and have not been treated for it. Now that I have discovered this, my symptoms are beginning to make sense as I read similar stories on your web site. Now my issue is: where do I go from here? how do I find good doctor that listens? Does anyone know one they could recommend? I can get to Bergen County New Jersey or Stroudburg Pennsylvania; so a doctor near any of those counties in those States would work. I am at a loss as I have a lot of people depending on me for my paycheck. I have a small daughter who I want to grow old for and a wonderful husband who I want to grow old with. I am an avid reader and couldn't imagine losing my eyesight. Any input here would be welcomed as I am lost and in shock with the news that I just discovered. Looking forward to hearing from you.
First of all, get on the phone and get to an opthalmologist that is experienced in treating Graves Eye Disease. This is imperative, because an endocrinologist, while skilled (this is sometimes questionable) in balancing hormones will not have the experience to treat your eyes. This should be a first step. While at the opthalmologist, ask for a referral to an endo that can take care of the hormonal side of things and get your thyroid levels back in balance.
Next, if you feel it necessary, point out the negligence of the doctor who missed yoru diagnosis to your state's medical board, your insurance company, and anyone else you feel should be aware of this serious oversight and the damage that it could do to your health.
I am not a doctor, nor have I ever played one on TV...
I'm sitting here shaking my head in disgust about your situation! My ears are burning with anger that your health was so neglected by your doctor! I fully agree with Meep's advise. He's very knowledgable and has advised me on several ocassions. Do you have insurance? If so, they can also recommend ANOTHER endocrinologist. Personally, I'd go to someone else and get treated and THEN "handle" that other "doctor" (and I use that term loosely!). You CAN get better with the help of a good opthalmologist and an endo to help with your hormones. That's VERY IMPORTANT! I'm sorry for your situation. I also have Graves and fortunately was treated pretty quickly and, with the exception of dose adjustments, am doing pretty well now. I have had some struggles in past 6 weeks but I'm getting better. Please let us know how you're doing and post here regularly with any questions or concerns. There are lot of very helpful and knowledgable people who come here and can help you. Good luck and God Bless!
Dear Meep, thanks. How much trouble am I in that this has not been treated for 2 years? Will I go blind. I can hardly move and the pain is horrendous. I am an executive at a major company and this is going to create a big financial problem for my family. I have been pushing myself and find that I can no longer physically do this. Is there disability for this type of disease? Maybe I'm getting ahead of myself, but I am scared to death as I am feeling very lousy and tired and in much pain.
Thanks for getting back to me so quickly. You guys are great. I was lost last nite and now feel like I have something to hold on to. I feel like I am never going to be able to walk right again and never be out of pain. I am worried that I am going blind as I have had my eye problems for a few years and they have gotten a lot worse. I now have to search for a doctor who takes my insurance and who know what he or she is doing. It seems insurmountable. I guess my tiredness from the disease has got me down. Can you give any advice on how to find a good doctor? I can get to Stroudsburg Pennsylvania or Bergen County New Jersey? Would you know of anyone who is good out here? Thanks so much.
Hi Lady50. I sent out a few replies and am looking for a good doctor in Stroudsburg Pennsylvania or Bergen County New Jersey or near either of those. Would you have any idea of where I can look to find a doctor who is good and who takes my insurance which is Aetna? I am also worried about my job as I am out sick today and my boss will have little of that. I am an executive in my company and responsible for a lot of things and millions of dollars. It seems this type of job and Graves disease will not see eye to eye. Do you think I will ever get past this and be able to work as a normal individual or does this creep up a lot with ups and downs? From your experience, will my eyes give way on me? I am deathly afraid of this. Thanks so much for being there.
Dear Meep, thanks. How much trouble am I in that this has not been treated for 2 years? Will I go blind.
I don't know. There is hope that treating the eyes properly will relieve pressure and pain and restore your sight. That will be something an opthalmologist would need to look at and evaluate, though.
I can hardly move and the pain is horrendous. I am an executive at a major company and this is going to create a big financial problem for my family. I have been pushing myself and find that I can no longer physically do this. Is there disability for this type of disease?
People have been put on disability for this. That would be something to discuss with your insurance comany and your human resources department.
Maybe I'm getting ahead of myself, but I am scared to death as I am feeling very lousy and tired and in much pain.
The best thing you can do at this point is concentrate your effort on getting to a good eye doctor. At least then, you will know what you are up against and eliminate the uncertainties that you are stressing over at the moment. You can't make a plan unless you know what you are facing.
I am not a doctor, nor have I ever played one on TV...
...looking for a good doctor in Stroudsburg Pennsylvania or Bergen County New Jersey or near either of those. Would you have any idea of where I can look to find a doctor who is good and who takes my insurance which is Aetna?
See if there is a thryoid support group near you. If there is not one near you, there are groups nationwide, and I am sure that one in a neighboring area could still help you find a doctor.
I am not a doctor, nor have I ever played one on TV...
Last edited by moderator2; 12-02-2004 at 06:24 AM.
It's taken over 45 years for someone to finally come up with a diagnosis in my case. I found out last week that my TSH is 120 and I've begun medication on 50mcg of Thyroxine which will be increased in two week cycles. In hindsight, everything I've endured now makes perfect sense and I feel immensely relieved that there is light at the end of the tunnell .... and its not a train .....
However, my muscle weakness and fatigue has deteriorated very rapidly within the last few weeks though and I am experiencing a recent increased activity in muscle twitching, memory blackouts and numbness.
What I want to know is how far I should be pushing myself. I continue to hold down a full-time, demanding job combined with post-graduate studies and family responsibilities. I don't want to be a martyr and end up having a stroke or heart attack! Should I be taking some time off until the medication starts doing its job????
I would appreciate some informed feedback from other sufferers or medical professionals.
I'm finding myself very much in the same boat as I am holding down an executive level position with tons of stress on my and also supporting a large family. If anything happens to me, I let them all down. I am beginning to experience some of the muscle twitching and trying to mentally control it when I can especially at work. My memory is getting splotchy and I recently made some big errors on emails to my job that have cost me points with my boss. My boss does not know what my situation is as I feel he will be worried that I cannot perform and will take action. So I am hopeful that I can find a solution to this after I see a doc. My new problem is trying to get an appointment with a doc. Meep sent me very valuable information and I was able to find a list of top docs - Meep this was great stuff - this website has proven its value many times over already. I did make my appointment, but the earliest I can get with the doc I really want is Feb 9; I also made an appointment with the first available doc which is Jan 17th. Can't do any better than that. My primary care doc is on vacation this week, but I was able to get an appointment with him for this coming Monday. I am hopeful he can reach out to one of the endocrinologists and get me an earlier appointment. I even thought of going to the emergency room to get some immediate attention to this as I am very frightened with all my symptoms; but then got to thinking that they would probably mess everything up. To add to this, I just got my echocardiogram results back which show that I now have water in my heart and a left muscle that has hardened. Does anyone know if this is related to the Thyroid as well. My prior echo's have shown no issues. I'm a newbie like you to the website but a newbie for being aware I have a thyroid problem. I never would have dreamed how painful and scary this is. I really want to take care of things but can't get timely medical attention. I took off work today and yesterday but have to go back tomorrow or my boss will have major issues with it. I am worried and am really stressed with chosing between my health and job and supporting family. Life ain't been easy lately. So all in all I have the same question also in addtion to the others regarding my heart. Will going to work each day cause this to get worse and how risky is it? My heart has developed problems - could they be from not know I had Graves disease for 2 years and not getting any treatment because of it? Also, have you ever heard of a thyroid storm? Well, hope to hearing back from y'all soon. Hope all is ok with you.
My memory is getting splotchy and I recently made some big errors on emails to my job that have cost me points with my boss. My boss does not know what my situation is as I feel he will be worried that I cannot perform and will take action.
By the same token, you have a serious health concern that is causing thie performance problem, and letting your boss know might be a good idea, because at least then you'll have a valid explanation for some of your errors. Not that this woudl get you off the hook for making mistakes, but at least it will be understood.
Meep sent me very valuable information and I was able to find a list of top docs - Meep this was great stuff - this website has proven its value many times over already.
**Blushing** I am glad it helped. I had help wehn I was first starting out, too, and feel that I need to pass it along.
I did make my appointment, but .... I even thought of going to the emergency room to get some immediate attention to this as I am very frightened with all my symptoms; but then got to thinking that they would probably mess everything up.
I fail to see how that would mess everything up. Getting the attention that you need is imperative, and this woudl jump-start it. That's just my opinion, though.
To add to this, I just got my echocardiogram results back which show that I now have water in my heart and a left muscle that has hardened. Does anyone know if this is related to the Thyroid as well. My prior echo's have shown no issues.
It is possible that this is a symptoms of the thyroid issue, and further impetus to get things going ASAP in your treatment. Any findings from the emergency room techs and docs will be forwarded to the doc of your choice, and you are entitled to a copy of labs and such in your chart, too, so you will be better armed when you go to the doc Monday.
I really want to take care of things but can't get timely medical attention. I took off work today and yesterday but have to go back tomorrow or my boss will have major issues with it.
What are you waiting for? Get to the emergency room, then.
I am worried and am really stressed with chosing between my health and job and supporting family. Life ain't been easy lately.
I bet you are worried. I kow it is scary wondering how the bills will be paid and how the family will eat. That will all take care of itself in time. Really. I was unemployed for 9 months, recently, and it was hard, but we made it, and though it was stressful, it allwed me to spend time with my family that I would have never done had I been working, which is a blessing, I think.
So all in all I have the same question also in addtion to the others regarding my heart. Will going to work each day cause this to get worse and how risky is it?
Take steps to minimize youre stress and SCHEDULE TIME TO RELAX. Sorry to yell that, but making time to relax and destress is the best thing you can do for yourself now ans as your treatment progresses. Even healthy people could benefit from that advice.
My heart has developed problems - could they be from not know I had Graves disease for 2 years and not getting any treatment because of it?
Also, have you ever heard of a thyroid storm?
Yes, it is a rush of activity by your thyroid gland caused by overactivity of antibodies. The thyroid gland both releases stored hormones and manufactures more thyroid hormone very quickly in a thyroid storm and the symptoms are those of extremem hyperthyroidism.
I am not a doctor, nor have I ever played one on TV...
I just finished an article by your doc - "Understanding Thyroid Lab Tests" by Kenneth N. Woliner. It's VERY interesting! Thanks for sharing this info. By the way...why do you hate putting his name out here? It could be more business for him! Look, there are many of us who will probably be willing to WALK to Boca Raton to see him if he's that good, okay?! I didn't realize that Amour is so inexpensive! AT the end of his article he says Armour is only $7.11/mo! That's cheap! Is he expensive to go to? You said he doesn't accept insurance...Is he a thyroid specialist? That's what I'd like to have...I almost feel like a second class citizen at my endo's office because most people are there for diabetes, where I think most of th energy is spent on them. You're fortunate and blessed to have found the best doc for you. I'm still praying about mine and I'm not giving up. There is one thyroid specialist that I've come across here in central florida where I live but his office is $350 and to be honest right now...I just don't have the money...it's just my income right now Oh well....something good WILL happen for me and I'll find the right doc to help me. Just the same, thanks for giving us all some hope that there are good docs out there!