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  • Anonymous
      Post count: 93172

      Dear Susan
      Hello there Susan how are we doing? Did you take the time to read your own posting?You know we all come here for mainly the same reasons I would think anyways.But you have to remember what helps you might not help me in the least,but I’am sure not going to blast you because your post did not help me in particular,as it could help some others who am I to judge?All I know is for me to go to the next post and that one could just make my day or save my life who knows only me,and you know Susan that the one-liners are a breath of fresh air for me so you see I’m glad you don’t run this bb as I probably wouldn’t get what I get now,as your needs are different then mine,you have to remember we are different people with different needs and that is why almost anything goes here thats what it is all about,and for the most it is to do with graves most of the time don,t you agree?SO Susan enjoy what you can from our bb and don’t complain so much just go to the next,GET OVER IT have a good day and I hope you take this in good context.Barb

      Anonymous
        Post count: 93172

        Hi Susan,
        Welcome to the Graves BB! Sorry to hear about your long struggles with depression and finally graves. As far as your comments about the posts each one of us is battling with graves in some way, shape or form. Otherwise we would not have to be here to reach out for one another. Everything that gets posted here comes from the heart of someone with graves, a family member or sibling. Since graves is a mysterious auto-immune disease whether a person posts a few lines, syllables or even practically a masters thesis it is being written from within someone experiencing graves disease. We all respect people’s opinions and just like walking into a room of people there can be friction or adversary:just how we perceive it. I am glad you found the BB and do continue to post!

        Peace and happinesss,
        Dee

        Anonymous
          Post count: 93172

          Hi Susan S.,

          After reading your post and story I concluded this is exactly why they have a Graves’ Disease Support Group. You are reaching out for help just as I was when I found this support group.

          I believe that all of our stories are different but to be able to share our experiences and hope is wonderful. Right now I choose to sit at this computer and read the BB everyday.

          I even joined the NGDF and got copies of many of the bulletins. If I remember correctly there is one that talks about taking care of ourselves. I read that one real fast because I did not want to do the work to feel better, I just wanted to feel better. I wanted to be the me before having Graves’ Disease!

          Thanks for sharing your story.

          Anonymous
            Post count: 93172

            BEEN HERE ALMOST 2 YRS
            HAPPY THOUGHTS DONT BOTHER ME
            AND ONE LINERS I AM KNOWN FOR
            THE INTERNET IS FREEDOM OF SPEACH
            WELCOME TO THE BB THIS IS HOME FOR
            SOME OF US SO WELCOME AND ENJOY AND
            IM NOT GOING UNLESS IVE BEEN TOLD TO FLY

            CRAZY STEVE

            Anonymous
              Post count: 93172

              I don’t think I was complaining, miss. I thought I was voicing some constructive criticism only, and even labeled it as such.

              I most certainly did read my post prior to, and following posting it. My communication skills have most always been a credit to my personal and career successes.

              I am not attacking anyone. I AM over it! I simply believe we can chat and discuss without attacking or insulting. I find your post most defensive, for some reason. I certainly was not directing the post at you. I’ve never chatted with you before!

              Let’s move on. I guess I’ll just “read” for a while…

              Anonymous
                Post count: 93172

                Dear Susan and anyone else Ioffended
                I hope you will except my apology’s,I can’t really give you any excuse as to why because no excuse would be good enough because there is no excuse to behave in such a grumpy manner,Please forgive me I DO THINK THINGS ARE GETTING TO ME but that is no excuse for mis-directed anger,I’m so sorry Susan if its not to late
                sincerely Barb

                Anonymous
                  Post count: 93172

                  Hey, it’s okay. Everyone who deals with this disease knows where you are coming from when they read a post. Many of us are at different points along the path of this darn thing, most of us recognize the call of frustration and feelings of helplessness. For many people this is their only outlet. You need to let off steam, yell, or otherwise, this is the place to do it without getting arrested, fired, or labeled nuts.

                  Anonymous
                    Post count: 93172

                    I took my son to his second opinion and basically the wind was taken out of my sails…. He stated that our Endo treating my son now was causing more harm then good. She has changed his doses and then the medications from PTU to Tapazol per week or so and he feels that she is not giving enough time for my son to stablizies and have the medications work. He should not have blood work done per week or so but rather given 4-6 weeks for the medications to work. My Endo here did not run T3 levels and therefore gave him no base line to work with with the new test showing his T3 levels very high…in a nut shell he could not tell what she was trying to do. I guess I am at the point of loosing my mind and my husband and I are not sure what to do or who to listen too….we go for our THIRD opinion in 2 weeks…any suggestions would be GREATLY appreciated and as to how or what to say to the Endo treating my son now.

                    Anonymous
                      Post count: 93172

                      Hi Drake’s Mom,

                      I can’t tell you anything definite, but it sounds to me as though your current endo is not giving your son enough time to adjust to his meds. Everything I’ve read gives at least 4 weeks (if not 6) before new levels are drawn and evaluated. The exception I’ve seen is after RAI or surgery, when you can “crash” into hypo and that can be damaging. I’ve not heard of people managing ATDs on this sort of schedule. The facts I’ve read in a thyroid book indicate that it takes the body between 4 and 6 weeks just to flush excess thyroid hormone.

                      As far as suggestions for what to tell his current endo, I might start with questions rather than statements — ask how many Graves’ patients this doctor has seen, how many colleagues this doctor has who have treated Graves’ patients, and if this doctor has consulted with those doctors to “confirm” the treatment methods that are being used. I would also make it clear that you are uncomfortable with this sort of lightning quick approach to med changes, and request that the doctor give more time for adjustments in order for you to see clearly the changes you’re dealing with on different meds and doses.

                      My guess is that the third opinion will more closely match the second opinion than the current doctor, and my advice would be to switch doctors to one of the others! It’s easier to deal with a doctor you agree with than to change the attitudes of another doctor — remember, they work for YOU, not the other way around. If you are uncomfortable and lack confidence in their methods, switch!

                      Good luck!

                      -Ski
                      NGDF Assistant Online Facilitator

                      Anonymous
                        Post count: 93172

                        Thanks, and at this point I believe my husband and I are looking at switching doctors…unfortunately for children there are not many to pick from, there is only 1 in our area. We took our son to Richmond VA which is 1 1/2 hrs away for the second opinion. Our third opinion is a doctor with the Navy since my husband is active duty. I spoke with my son’s regular pediatristion and she is also going to fish around with the Endo to see what she is doing. You as lay-people trust in doctors and then find out that they all don’t know what they are doing…..I did ask this Endo and she had only treated 4 kids, my son the youngest and that was when I decided to get the second opinion(which she was not happy with)…I only wished I had decided to do it earlier…thanks for the help…a mother of a little warrior….mm

                        Anonymous
                          Post count: 93172

                          I am feeling really strange right now, and was wondering if it was “normal” or what.

                          I feel weak in my upper torso, light headed, when standing I feel that I am going to topple over, It is hard to think straight. I feel as if I have a lump in my throat, and I know that I don’t. My nose is running down the back of my throat, that is clear, my glands feel some what enlarged but nothing to threat or write home about, and I feel “spacey”. I have left a message on voice mail at my doctors, all I can do is wait for a reply. My ears hurt occassionally, but that is probably because of the drainage from my nose. I have no temperture, never do, even when I am really sick, my body does not work that way…. Its hard to concerntrate too… I wish all of this “crap” would disappear and get over and done with.

                          I am looking forward to seeing my endo in 3 weeks so that I can get the okay to see my eye doctor and get fitted for contacts again. I figured I should wait and get my levels normal and go see him, nothing to hold me back and get to wearing contacts again.

                          Maria

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