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  • Evelyn
    Participant
    Post count: 12

    I am thankful to have found this forum! I have recently been diagnosed with Graves’ Dz. My endo’s medical assistant called me to tell me the results of my thyroid uptake and wanted me to tell her on the phone which treatment option I wanted. I insisted on meeting with him to discuss my concerns; I see him on Monday.

    I have read volumes of information from credible sources; none have made me feel any better about the idea of treatment. I feel great, 65 y/o marketer, work full time, exercise daily, good energy level but not hyper. Have had few symptoms of hyperthyroidism: palpitations and racing heart on occasion-controlled by beta blocker; no weight loss, etc. Why would I want to have treatment that will make me feel sick, gain weight, go bald, or have agranulocytosis, hepatitis and many others distressing side effects?

    The hyperthyroidism was discovered by chance when I changed internists (my old one retired). My TSH was 0.005. While waiting for the endo appointment weeks later, my cardiologist ran T3 and T4. T3 is 217 and T4 is 17.8. The Thyroid uptake scan findings are: ” The 24 hour uptake value was 34.7%, which is at the upper range of normal for 24 hour uptake. No hot or cold nodules identified”.
    I will appreciate hearing from others’ experiences with diagnosis and treatment.
    Looking forward to hearing from you, Evelyn

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome – a couple of thoughts…

    I don’t think I have EVER heard of a patient being asked to choose a treatment option over the phone. This is a major decision. You can check out the “Treatment Options” thread in the announcements section at the beginning of the forum for more info on anti-thyroid meds, surgery, and RAI. You might also consider a second opinion, as your relationship with your endo’s office is going to be a fairly long-term one!

    When you are looking at your labs, you need to know the “normal” range for your lab. TSH is usually pretty standard, but the normal range for other results can vary from lab to lab.

    If your T3/T4 are in the “normal” range, this is referred to as subclinical hyperthyroidism – treatment for that is often “watch and wait” to see if the T3/T4 go out of whack as well.

    If your T3/T4 are too high, you definitely do want treatment. Even though you are feeling well now, over time, untreated hyperthyroidism can result in muscle wasting, bone loss, and a very serious complication called thyroid storm.

    You can use the “Search Posts” feature on this forum to read stories from patients who have chosen different treatment options. I took anti-thyroid medications for 7 years, followed by about 18 months of no meds, and now I am hypOthyroid. Others here have opted for RAI or surgery. With RAI/surgery, you do NOT get a chance to change your mind after the fact, so it is a big decision. NOT one that you want to make over the phone!

    Liz1967
    Participant
    Post count: 305

    In considering your options, it isnt a bad idea to meet with an experienced thyroid surgeon and a radiologist if possible in addition to your endo before you choose. That way you get a true picture of the risks and benefits of each treatment course. I did a lot of research and spoke to all three before I opted for thyroidectomy. I was on methimazole for a few months while considering options and to get labs in range prior to surgery to avoid thyroid storm.

    Evelyn
    Participant
    Post count: 12

    Thank you Liz and Kimberly!

    snelsen
    Participant
    Post count: 1909

    agree with Liz and Kimberly. That is a nutty thing to say over the phone.
    Hard to know the meaning of your labs without knowing the ranges. Labs differ,and are calibrated differently.
    Get more information. Important to do. At your age,and any age, untreated hyperthyroidism is also a risk for atrial fibrillation.

    You cannot really make a good decision without accurate information =which you sure do not have at this time. It is very possible you could be in the’watch and wait”category. There is no crisis with any of this, and you have all the time you need to thoughtfully make the right decision for you. Step 1, get the lab information, pay attention to how you are feeling. If your heart rate gets pretty darn rapid, 90 or more, that is a reason to check in with the doc @ a beta blocker. Check your BP too.

    I am a healthy 81 year old, who had Graves when i was 21. Feel free to PM or even call me if you would like. I did have a thyroidectomy and ultimately began taking Synthroid. But I was REALLY HYPER, with all the classic symptoms.

    Evelyn
    Participant
    Post count: 12

    Thank you so much!! That’s really encouraging. Glad to know I don’t need to rush my decision but shouldn’t put off too long either. Thanks again!

    Patrick
    Participant
    Post count: 4

    Hi Evelyn,

    I agree with snelson. At this point if you can, take your time and evaluate your choices. My diagnosis was in result of me getting a very anxious and nervous condition after I stopped smoking at age 55. Heart racing, hot flashes, chills, weight loss, shakes. I had immense anxiety to the point of being in bed 12-15 hours a day. Not being able to concentrate or barely being able to choose my clothing to wear, little own trying to understand what my dr. was telling me I had. My wife said her change of life issues weren’t as bad as what I was going through. She was almost going to buy me tampons !! lol.. I wanted a quick fix to the issue, like a headache and go back to the old me. The bad thing was even after I had my Thyroid abated all the conditions were still present. It wasn’t until they treated my emotional issues that I felt like me again. I wish now I would of known to treat the emotional aspect of the disease instead of abating my thyroid. My numbers were very minor compared to others I have read about. Don’t get me wrong I feel great now with the exception of a minor TED condition. I just wish I wouldn’t of killed off the little butterfly in my throat.

    Patrick Z.

    Khadijah
    Participant
    Post count: 62

    Hi! My first doctor… although, I was currently waiting for an original doctor appointnent that I had booked previously but was so symptomatic that I had to see any doctor to get started on methmizole right away. But, the available doctor did suggest I look on the Internet and figure out which treatment I wanted. I came back and said I wanted surgery he said okay and gave me the name of a surgeon. I even booked an appointment with the surgeon. Then my appointment came up with the original doctor who saw me and he was amazingly thourough and knowledgeable he insisted on reaching remission through medication. Needless to say, I stayed with him and I’m so glad I did!

    The methmizole route was a long process but once you are on the meds you start to feel sane again pretty quick. It takes longer for the brain fog and muscle tone to come back but maybe if you work at it happens sooner. I had a toddler with some delays during the worst of my graves so I had a lot of extra stress to deal with, which is the worst thing for autoimmune disorders.

    Let me know if you have any questions. Check out my post in the success story thread.

    Ellen_B
    Moderator
    Post count: 100

    Hello,
    Today, the success story thread caught my eye.
    I saw your name Khadijah next to it as having replied to day.
    Then I went to the other post you put up today. It is great to see that you are doing exactly what other posters are asking. Letting others know you have recovered and are doing better.
    Perhaps the reason we do not hear back from many Graves’ disease posters is that they have chosen a treatment and after a while (sometimes a considerable amount of time) have recovered and gotten better. It would be wonderful to hear from those who have gotten better. It would help those (the ones who are in the early stages of their treatment and not feeling well yet) to know that it is possible to get better.
    Let’s not forget that this is a very important role for the recovered Graves’ patient to play.

    laura1701
    Participant
    Post count: 16
    Evelyn wrote:
    I am thankful to have found this forum! I have recently been diagnosed with Graves’ Dz. My endo’s medical assistant called me to tell me the results of my thyroid uptake and wanted me to tell her on the phone which treatment option I wanted. I insisted on meeting with him to discuss my concerns; I see him on Monday.

    I have read volumes of information from credible sources; none have made me feel any better about the idea of treatment. I feel great, 65 y/o marketer, work full time, exercise daily, good energy level but not hyper. Have had few symptoms of hyperthyroidism: palpitations and racing heart on occasion-controlled by beta blocker; no weight loss, etc. Why would I want to have treatment that will make me feel sick, gain weight, go bald, or have agranulocytosis, hepatitis and many others distressing side effects?

    The hyperthyroidism was discovered by chance when I changed internists (my old one retired). My TSH was 0.005. While waiting for the endo appointment weeks later, my cardiologist ran T3 and T4. T3 is 217 and T4 is 17.8. The Thyroid uptake scan findings are: ” The 24 hour uptake value was 34.7%, which is at the upper range of normal for 24 hour uptake. No hot or cold nodules identified”.
    I will appreciate hearing from others’ experiences with diagnosis and treatment.
    Looking forward to hearing from you, Evelyn

    I am very curious if any of your docs have thought to run any of the thyroid antibody tests for you? For instance TSI-thyroid stimulating immunoglobulin? This one is a marker for Graves disease. There are other antibody tests that relate to diagnosing autoimmune thyoid disease and this info could help determine the direction of your treatment plan. Hard to make any sense of lab results with out the corresponding ranges.

    Evelyn
    Participant
    Post count: 12

    Thanks for sharing your experience. I am exploring options. All are scary. My attitude at the present time toward my little butterfly is not so friendly if it’s causing me problems and working against me. I’d like to get this behind me and move on with my life.

    jeff92
    Participant
    Post count: 13

    My wife also had the TSI test. Levels were normal but she was hypo so doc lowered the methizole. The TSI levels are now way to high. After six weeks they may lower the methimazole again.

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