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  • Anonymous
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    Post count: 93172

    Wow, I consider myself rather technology savvy and have never found this group in the 11 months since my GD diagnosis in Feb 06. I have spent my entire Saturday night just reading the posts and thinking, sometimes tearing up (probably because of my TED), that I am finally not alone.

    My friends and family just think that I have made all of this up and that I should be waking up any day now with everything being AOK. In fact, they EXPECT to hear that. I have also been unfortunate enough to acquire/contract/be cursed with TED. Woke up on a busines trip in Boston on Oct 30 with double vision. Was fitted with prisms, but things got progressively worse. Prisms no longer help. I am using my pirate patch–as my teenagers call it. It is a very circa Pirates-of-the-Caribbean look! Luckily, the double vision does not affect my up-close vision, as I primarily work at a computer. During all of this, my job ended on Nov 7 (had been actively looking for 6 months) and kept wondering/worrying how I would continue to support myself and 3 boys, so I’m certain stress played a part in the worsening of my condition.

    Here were some of the early warning signs that I personally experienced, but did not connect-the-dots until this past month.

    1. blurred peripheral vision (June)
    2. enlargement of orbitals (measured by my ophthamalogist) (July)
    3. heavy pressure behing the eyes accompanied with headaches. (July)
    4. tremendous tearing (attributed this to the vast amount of flying that I was doing – not on my broom) – (August-Oct)
    5. finally, sporadic double vision followed by permanent double vision

    My right eye is now, what I call, “frozen.” It is quite obvious in its appearance to most people. It doesn’t move upwards (2 muscles are swollen–verified via a CAT scan) and being on a new job (yes, I found one within two weeks of the onset of double vision), I am very self-conscious about my appearance. I look in the mirror and think, “you used to be somewhat semi-attractive. who are you?”

    I look forward to the day where I can put this all behind me. Meanwhile, I can look forward to reading all of your posts! If you are still reading, thanks for reading mine!

    Lisa in Omaha

    Anonymous
    Participant
    Post count: 93172

    Hi to all, I was diagnosed with graves Jan. 23rd 06 I felt some relief
    because I was happy to finely know what was wrong with me. since 1996 I was being treated for allergies, skin rashes, sinus infections,respitory
    infection, etc.my skin got so sore above my knees it hurt to shower.One
    morning I looked in the mirro and I looked like a different person when
    I told my Doctor about it he said you are getting older you have to expect changes.he was constantly putting me on steroids to clear up my allergies and he gave me atennol for fast heart rate. In 1999 my blood pressure went sky high, I remember the day, the day after Thanks
    giving shopping with my Daughters, my ears started ringing loud, my
    face flushed, my scalp prickly, I took my pressure in a pharmacy, it
    was 200/125 I was scsred to death and went to the emergency room.
    On May 11th 06 I had the rai 3 months later I was Hypo, I am now up to 1mg of synthroid, I felt better on .88 but my Endo won’t make anymore changes until a year after my rai. I think I am going Hyper again, My Tsh is 0.73 and I have alot of hyper symtoms, But I have that warrior spirit Jake talks about.
    Lamentations 3:21 This I recall to my mind,therefor I have hope.
    I have been through the valley of weeping, the valley of sorrow and pain: But the God of all comfort was with me, At hand to uphold and sustain.
    I am sorry this post was long. Bless you all.

    Anonymous
    Participant
    Post count: 93172

    Louisa,

    Welcome to the site. I feel like we are sisters. The cardiologist put me on an event monitor on 1/16/06 and tentatively diagnosed me later that week. On Sunday, 1/22/06 I was in the ER. My heart rate/pulse was so high they had to give me a shot of something to regulate it. I have all the same type of symptoms. I thought I was going crazy or becoming a hypochondriac. The doctors would test me for different things and it all showed up negative. They were treating me like it was because I was getting older, or menopausal, etc., etc. My symptoms had been going on for almost 2 years – I just kept getting worse. My #’s were more than double the highest range and they pulled me out of work. I had lost all muscle in my legs and arms and had trouble just getting to the bathroom. I had my RAI 2 weeks ago and my first blood test today. I hope it shows hypo so I can start on synthroid and get on with life.

    Good choice of passage. I don’t know how I could have made it through without Him.

    Anonymous
    Participant
    Post count: 93172

    Louisa

    Welcome to the NGDF and the bulletin board. Many of us have felt the same way you have, finally, the relief of finding out that there is a reason we have felt so rotten. Graves Disease is difficult to diagnosis because it mostly affects women and a lot are approaching middle age. I know I received the same comments you received like, you should expect to look different as you age. Then the all famous, you are just pre-menopausal. Now when someone tells me that their doctor has told them that I get very upset.

    We don’t always need to stay with the first endo that we start with. If he doesn’t seem to listen to how we feel, or we just are sure if we should trust how he does things. It does seem to me that it is a little odd that he doesn’t want to change your dose of thyroid replacement for a year after RAI. This is generally when we have the most changes. Yes, there does need to be some time in between blood work and also med change to give our bodies time to adjust to that dose and time for it to work. A year just seems a little long to me. You can ask him why he feels this way.

    Diane B On-line Facilitator

    Anonymous
    Participant
    Post count: 93172

    Thank you Diane for your respone, yes I have been considering
    changing my Endo. I saw her in Dec. my tsh was 2.10, I tried to
    tell her I still wasn’t feeling well yet,I even told her I felt
    so much better back in Oct.when my tsh was 5.37, she only said,
    That’s too high for you.I had my labs done again Jan.9- o7 tsh
    0.73 all those hyper feeling are back and my endo dosn’t want to
    see me till april. She told me the radiation keeps working for a
    year and that even some tissue still remains, she said I will
    have to adjust to a new kind of normal, then told me how very
    fortunate I was.I still along time till april 9 should I change?

    Anonymous
    Participant
    Post count: 93172

    Hello Mammaw thank you for your nice response it such a comfort
    to know that someone else is going through the same thing.
    I am so very thankful for this site and all I that I have
    learned just reading the posts. I pray that you will go
    hypo soon and that you will adjust quickly to the right dose
    of synthroid. And remember to know God puts A song in your heart
    and A smile on your face, no matter how bad I feel I still have
    A Joy in my Heart. It must be Jakes’ warrior spirit he writes about.

    Anonymous
    Participant
    Post count: 93172

    Louisa

    You will need to decide yourself if you should switch endos. Myself and the other facilitators can’t tell you what you should do. All we can do is educate everyone what we know about Graves Disease.

    There are several people that I know who have changed their endo’s because they weren’t happy with them. Either they didn’t feel they were getting the correct treatment or just couldn’t get their doctors to listen to them. Jake has given some talks at our conferences about how we have the right to fire our doctors and he has done that himself. They are working for us, that is one thing that many people forgot.

    But we can’t switch doctors all they time because they aren’t doing exactly what we want them to do. They are the specialist, we aren’t. So there is a line, so to speak that we need to remember.

    All, I can really say is that it is odd to me that a doctor doesn’t believe in adjusting someone’s dose for a year after RAI. Yes, it may take time for the RAI to work completely and for our thyroids to some working entirely. That is why we are generally checked every 3 months or so during that time to adjust our dose. There is no reason for someone to feel rotten during all that time.

    Think about all your options, and what endo’s are in your area. You can alway call hospitals and get recommandations from them. You also can ask your PCP who he would recommand.

    Hope this helps and good luck to you.

    Diane B On-Line Facilitator

    Anonymous
    Participant
    Post count: 93172

    Hi,

    I can understand what you are going through and I think that telling you that you have to adjust to a new kind of normal is not right. They might be the professionals but we ultimatly know how we feel. I have been keeping track of what levels feel good to me by writing down how im feeling when i get my blood work done and then showing that to the endo when I go. This has seemed to help my endo see what I see and not just looking at the blood work and going from there. Maybe this will help some with your endo if you bring it in on paper. I will be praying for you!

    Anonymous
    Participant
    Post count: 93172

    To Standingfirm; Thank you so much for your kind information I will
    give it a try, I went today to see my family Doctor I thought I had an sinus and ear infection, she said everything looked ok so she sent
    me to have labs done, I’ll know soon if I am Hyper again,I’ll get A
    copy of the blood work and write down how I am feeling now.Which is
    insomnia, constipation,not able to think clearly, always hungry,puffy
    face with rash, itchy skin,knee pain, etc. I will pray for you also.

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