Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • marysdc
      Post count: 1

      Hello! My name is Mary, I was just FINALLY diagnosed yesterday with Graves, and Graves Eye disease. I haven’t been around long enough to learn the acronyms so I apologize for that up front. I have been going thru “this” since last December when I was miss-diagnosed with Pink Eye. After several meds, and it not getting better sent to an Ophthalmologist. He said, nothing wrong with your eyes, you need to see an Internal Medicine Dr, something is wrong with your thyroid. How he knew that was beyond me! Went to my PD, he said my thyroid levels were normal and that he thought I had allergies. Well, I do in fact have allergies and asthma so he could be right. Schedule an appt with advanced asthma clinic because my eyes are OUT OF CONTROL! They are so swollen I started getting up at 4am due to cold compresses for 2hrs prior to work. Started wearing sunglasses at work, was asked not to come to meetings anymore, yada yada. Nothing helped the swelling, and I always look like something is wrong because they weep, non stop 24/7. Started allergy shots 3 times a week, being very aggressive. One day after about 3 mos of this and no relief, the allergist said. ” You do know this is not allergies right?” I felt as if she slapped me in the face!

      I have gained about 50lbs since last Oct. That in and of itself is embarrassing. My family all asking questions, old friends I run into. The look of something not being right just does something to a person I think. Then the seizures began. Was put in the hospital, had a car scan, eeg, mri, nuc scan, every blood test known to humans and the answer I was given from the neurologist was that my brain and my heart are not working in conjunction with one another. He called them focal seizures. Put me on meds for seizures, then turned to me and said. Oh, btw you may want to get your thyroid checked because your levels are out of control.

      Made an Endo appt. Went for more blood work, MRI with contrast, went on the worst diet I have ever been on ( low iodine ) and did an thyroid uptake scan. Results day wa yesterday. I was given 3 choices, Meds Methimazole 10mg once a day but with very scary risks, Radiation therapy but it will make my eyes much worse, or Surgery but she said that was worse case scenario and almost not even an option. I chose the meds. She said my eyes will never get better, she said I also have Cushings and that is what caused the weight gain bc I am hyper not hypo. Didn’t give me a plan yet for that but I go back for blood work in 6 weeks to check my liver.

      I am so mad about my life being being almost stopped. I do not leave the house, I am embarrased about the weight, I may lose my job I have been on for 15yrs due to attendance!! Is this FMLA related? Does it ever get better? Will I ever feel normal and not depressed? Can I join a gym or with the immune issue can I catch everything they all have??

      Please, I need advise…..thanks for letting me vent, Mary

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello and welcome to our forum. I’m sorry to hear about all you’ve gone through, but am glad that you found us. Unfortunately, Graves’ – and its accompanying eye issues are too often misdiagnosed. That’s good news that the docs finally figured out what was going on. All three treatment options do have risks and benefits, but they *can* restore our thyroid hormone levels and get us back on the path to good health!

        Keep in mind that Cushing’s is a separate issue with different treatment options, so you definitely want to talk to a doctor about your options. Here’s some info from the Mayo Clinic:

        (Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

        http://www.mayoclinic.com/health/cushings-syndrome/DS00470

        FMLA applies to “serious” health conditions, and the interpretation of “serious” is somewhat open to discussion. This might be an option for you, since it sounds like your symptoms are clearly having an impact on your ability to complete your day to day tasks. Someone in your HR department might be able to give you further direction…having specific medical records with you would be helpful in this discussion.

        Following is an article from the Foundation about the mental and emotional impact that often accompanies Graves’. The good news is that you will start to see some relief as the meds take effect and your levels come back into balance.

        http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

        You will want to check with your doctor to find out when you are cleared for exercise. Most docs do NOT recommend strenuous exercise until our levels get back into the normal range, as our muscles (and especially our heart) are already overtaxed while we are hypER. Once you get clearance, though, I visit my gym regularly and don’t think I’ve gotten sick with any more frequency than I did before my diagnosis. (In fact, I’ve probably had fewer colds, probably because I am extra vigilant about hand-washing and trying not to touch germy surfaces!

        Take care – and keep us posted on how you are doing!

        GLo22
          Post count: 13

          I just want to say that you are NOT alone and I think all of us have a lot of sympathy for what you’ve been going through. I’m sooooo sorry they didn’t diagnose you sooner. That would make me mad for sure.

          I can’t promise that you’ll have a bad reaction to the medications, and the complications you have with Cushings is very scary and upsetting I’m sure, BUT…

          I have started treatment with Methamizole, I am doing great ( no side effects) and, I feel SO MUCH BETTER!

          I feel sad for you but I do believe that you will feel better again. It may take time but just continue to be an advocate for yourself and DON’t GIVE UP!

          Also, I would personally search for a second opinion about your eyes. I do believe that your condition should be treatable! My endo assured me that although I can’t be cured any and all complications can be mitigated and controlled.

          Hang in there!

          Abby
            Post count: 2

            If you’re in danger of losing your job because your illness is making you miss too much time, you should look into DISABILITY. The FMLA is for taking care of others, disability is for you. You may have disability insurance. Your company may have a disability policy/procedure. You’ve been there 15 years. Talk to HR and find out what they can do for you so that you can get your health straightened out.

            You are dealing with a lot, but if you approach it step by step you can sort it out. Graves’ is a bear at first, but it will get better. My eyes were a lot worse a few years ago than they are now. And, hyper-T makes everything seem worse. You will feel better.

            catstuart7
              Post count: 225

              I hear ya Mary! I could get a good rant going myself except I’m mad about something else right now. Graves’ really amplifies the experience of anger.

              First thought, I totally agree with others that you want a second opinion. Your eyes will absolutely get better. It is a serious and complicated business, but there are treatments and surgeries, it might be a couple of years but you will get back to relatively normal eyes. Oh and thyroid surgery absolutely is an option – read Adenure’s recent account. I have the beginnings of TED and have been researching my ass off and learned there’s a lot that can be done and lots of brave people have gone on this path before us. It is not hopeless! Get Elaine Moore’s book Thyroid Eye Disease.

              Other thought, on what do they base your Cushings’ diagnosis? There’s a lot of overlap between it and hyperthyroid w/ weight gain symptoms. I had weight gain with Graves’. 15% of all people with Graves gain weight – that your endo doesn’t know that leads me to even more strongly say second opinion time.

              snelsen
                Post count: 1909

                Hi Mary, my two cents to add to others. My comments are from my own experience with Graves. With TED (thyroid eye disease) and with FMLA

                1. Graves’ which is hyPERthyroidism. There is a lot of good info in the search box. In summary, your are receiving too much thyroid hormone, and this generally results in a fast heart rate, tremor when you hold out your hands,voracious appetite, muscle weakness, feeling hot all the time, feeling crazy, to mention a few.
                I think another post referred to the treatment choices, but barring other physical issues, there are three:

                A. ATD’s-which were prescribed for your right now. Almost everyone begins with this med, to get us in a safer place. Then you still have three choices.
                One choice for you is to continue with ATD’. Some on this board, including Kimberly, have made that choice. She has some great posts about her experience and thoughts.

                B. Surgery-this was my choice. I wanted the fastest way possible to get the Graves’ symptoms out of my life. Alexis, adenur on the posts, has some great posts about her thinking to make that choice. lch11 or lhc11 also wrote some great posts about her experience.

                C. RAI-This is used in this country a lot. Many on this site chose it.
                But in your situation, with your present eye issues, there is more to think about. In summary, recent studies how shown a worsening of eye symptoms after RAI with people who already have eye issues. And, if you wanted to choose that, you would need to have the endo and an eye doctor who UNDERSTANDS Graves’ and TED, working together to give you the proper treatment before you had RAI.

                There are pros and cons, both personal, and physical, associated with each treatment.

                2.[/b]THYROID EYE DISEASE (TED)
                If you have TED, and you do have many symptoms of TED, you absolutely need to have an opthalmologist who is familiar with TED, see you on a regular basis. *****The endocrinologist is NOT the person to diagnose or follow thyroid eye disease. This is a very frustrating disease, it can be mild or severe. There are two phases, the active or hot phase(9-15 months or so), where eyes are changing, better one day, worse the next. And the inactive time, or cold phase, where permanent treatment can happen if necessary. Several surgical procedures can be done at this time, for retracted upper and lower eyelids, double vision to name a few.
                I am SO SORRY your endo told you that your eyes will never get better.
                That must have been tough to hear.

                3. FMLA-I disagree with the poster who said that FMLA was only to be a caretaker for others. It is possible I misunderstood the post.
                My experience with FMLA:
                I had it three times. Twice to recover from breast cancer chemo, and once for a broken leg while skiing. I had it granted when I had double vision with TED,but I had already retired, and was working only part time so I decided to permanently retire.
                The definition does say serious. But I have found HR to be wonderful and understanding, and I do encourage you to explore that route. Someone mentioned disability. That is another whole ball of wax, and is complex and difficult to obtain.

                Regarding your Cushings’ diagnosis. Read the Mayo Clinic reference Kimberly mentioned. I encourage you to be sure you have a firm diagnosis of Cushings/
                You really do have challenges, for sometimes it is possible that an endocrinologist who has a large Cushing’s patient population, does not have much interest in managing Graves’ patients.
                Regarding your seizures, I am presuming you have a neurologist working with you on that. Lots of folks have seizures, and many have focal seizures.
                The neurologist definitely should be managing that, not an endocrinologist.

                In summary, my heart goes out to you, and I know the next few months will be very frustrating, but you will feel better, and get your life back. Having different metabolic physical problems, and getting the doctors to communicate with each other so you have coordinated care, is truly challenging. Do keep writing to us.
                I know you know we aren’t professionals, but we sure have been there, done that regarding Graves’ and TEd.
                Shirley

                Sarah0305K
                  Post count: 2

                  Hello, and sorry you are dealing with GD! I just wanted to say that I am currently on FMLA for my GD and have been for the pass six months and have it approved until my doctor say otherwise. I live in Ohio and our laws my differ from other states. I use my FMLA for all doctor appointments and testing and treatment only but I can us it for day’s I don’t feel able to come into work but I haven’t the need for that. I am on 450mg of PTU, but my level aren’t staying controlled at the moment. Also I am having my thyroid removed since I have a family history of RAI not working and want to have children shortly or as soon as possible for fertility reason. When I meet with my surgeon this past Friday he point blank told me if I did RIA and had any level of TED there is a greater risk of blindness and also a risk of ovarian failure but as you may see on this forum every doctor is different and you will get other advice. I have been to 4 doctor so far and made my desision based on many factors that our for my family and life and won’t work for everyone. Also my doctor also advised me that he only recommends being on ATD not more then 2 years but that is based on age for him that young you are the less time he wants you on ATD meds. I didn’t really ask why he factors that in since I already knew which way my husband and I want to go. Hope this helps, sorry for the one long paragraph posting from my phone. Sarah!

                Viewing 7 posts - 1 through 7 (of 7 total)
                • You must be logged in to reply to this topic.