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'eye see' Linda
Graves' Disease patient, board member, world traveler, gourmet cook, marketing professional
Recent Activity
Hi everyone! The Graves' Disease & Thyroid Foundation, along with the Shiley Eye Institute at UC San Diego, is hosting a workshop geared toward patient education. The event is free, but you must register. Click here to register at Eventbrite. The event is being held on Saturday, June 10, 2017, from 8:30am-12:00pm. Remember to register... Continue reading
Posted May 27, 2017 at Graves Eye Disease and Hyperthyroid
Hi and thanks for writing. Please refer medical questions to your medical professional. I can only offer my shared experience here on this blog, and because I'm not a doctor, I'm not able to offer any medical advice. I do with you the best in your health and healing.
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Hi and thanks for writing. I'm not a medical doctor, so I'm not able to offer medical advice. Based on what you described I would give your doctor a call right away to discuss with him/her what your options are. Unfortunately with Grave's Disease, symptoms are difficult to predict, and that includes changing doses of medication. I wish I could be of more help to you and trust you understand my inability to counsel with medical advice. I wish you the best in your health and healing.
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Hi everyone, If you'd like to learn more about the breakthrough treatment, Teprotumumab, for Thyroid Eye Disease, and what it means for patients, please join Dr. Raymond Douglas, MD PhD, on Thursday May 11th, 2017 at 10AM PDT, 1PM EST for a live facebook discussion. You can learn more at the following link: Live Event:... Continue reading
Posted May 7, 2017 at Graves Eye Disease and Hyperthyroid
As I approach the 10-year anniversary of this blog, looking back, I could not have imagined then that a treatment would be developed to reverse the eye symptoms of Graves' Disease. And yet, here we are today, with a breakthrough drug that does just that. I'm so proud of Dr. Terry Smith, M.D., and Dr.... Continue reading
Posted May 3, 2017 at Graves Eye Disease and Hyperthyroid
Living with Graves' Disease, or being hyperthyroid for any other reason, is difficult enough. And yet, there are other considerations to be aware of as well. Like the connection between endocrine diseases and other medical conditions. Just over a week ago, I ran across an article called Does hyperthyroid diagnosis equal higher breast cancer risk?... Continue reading
Posted Oct 26, 2016 at Graves Eye Disease and Hyperthyroid
Hi there. I wish I had a good answer for you but that isn't an issue I had much experience with. I had lid swelling but not so much below the eye. Let's see what other readers in the community have to offer. Thank you and all my best. Sent from Yahoo Mail for iPhone
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Hi Tori, Did you ask your doctor about stopping cold turkey? Were you taking a higher dose and slowing lowering it? Did your doctor ask you to skip days or are you taking it every day? Your doctor may have a good reason for you to stop your medication in such a way. If you're in doubt, you can always get a second opinion. While tapering off of my medicine is what my doctor asked me to do, it may not be the best approach for you or anyone else. Always best to check with a medical professional to find out what is best in your situation. As far as your second question, let's see what the community responds with based on their experiences. In my case, as you may have read, I was not able to achieve remission after 7 years of trying, so I opted for surgery. Finally, regarding the led retraction, in my case it did indeed go away and my eyes are more or less symmetrical. But it didn't happen right away. I was diagnosed 10.5 years ago and it wasn't until the more recent years that the lid retraction went away and the eye protrusion/proptosis returned to normal. It was a journey. But my example is definitely proof that these issues can go back to normal. I hope one day that is the case for you as well. My best to you and good luck in your treatment and health. Linda
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Hi and thanks for writing Jan. I'm not able to offer medical advice, so best to see your eye specialist specific medical questions. What I can share is based on my own experience, and that included eye issues similar to what you just described. In fact, that started about six months prior to my actual diagnosis but I didn't think anything of it at the time. Fast forward now 11 years later and even though my eyes look symmetrical now, and they've essentially gone back to their normal positions, my right eye still opens faster than my left eye. I can open my right eye 75% before my left eye starts to open itself. It's very strange, for sure. So I can relate to what you describe. Because I'm not a doctor, I am not able to offer advice, and I trust you understand. I hope your visit with your doctor goes well and that you are able to alleviate your dry eyes. My best, Linda
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Hi and thanks for sharing your story. I hope you'll be feeling well soon as you adjust to your medicine. Please know you're not alone in your journey, and do let me know if I can help offer support in any way. My best to you, Linda
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Hi's been a long time since I've written much, and that's because there's not a lot to share about my own journey. I saw my eye specialist recently, and my eyes continue to remain stable and normal now, out of the "active" phase of the eye disease. I'll get new blood labs next week,... Continue reading
Posted Jun 4, 2016 at Graves Eye Disease and Hyperthyroid
Hi and thanks for writing. I haven't had an anti-bodies check -- I will have to ask my endocrinologist about that next time I see him. I wonder if it's because I don't have a thyroid any longer but I'm not exactly sure. I will definitely ask. Did you happen to get a copy of your lab results to know whether you are on the high or low end of normal? Personally I found that a small change even within the normal range can cause me to feel differently. I'm sorry to hear that you're having symptoms despite having normal results in your lab work. I wish you the best in your future health and ongoing treatment. Please feel free to ask any other questions you may have. Linda Sent from my iPhone Please excuse the occasional tpyo
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Hi Linda D, and thanks for stopping by. I can say that as I switched medications, changed doses, or discontinued medications (all under the care of my doctor) I often felt tired. When you say your labs are normal, did you have your Vitamin D checked? Did your doctor recommend any other lab work? I would definitely let your doctor know and ask if there are any other labs that should be performed. For me, my Vitamin D was well below normal and I wound up on prescription Vitamin D. It wasn't long after that I started to feel better. As for weight, everyone's situation is different. Some people lose weight with Graves' Disease, some actually gain. I experienced both at different times. I wish you the best in your treatment and health down the road. Let me know if you have any other questions. Linda Nothing in this message is intended to constitute an electronic signature unless a specific statement to the contrary is included in this message. Confidentiality Note: This message is intended only for the person or entity to which it is addressed. It may contain confidential and/or privileged material. Any review, transmission, dissemination or other use, or taking of any action in reliance upon this message by persons or entities other than the intended recipient is prohibited and may be unlawful. If you received this message in error, please contact the sender and delete it from your computer.
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Hi and thanks for writing. Thanks for your comment and i wish you the best in your health, recovery, and wellness. Linda
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Hi and thanks for writing. I'm sorry you're still experiencing anxiety. I'm not a doctor so I can't comment on your lab results, but I can offer that it is possible for the anxiety to go away. It did in my case, and it does for many. I know it's hard to feel good now, and wonder if you'll ever feel the same again. So many patients do. I'm one of them and today I feel really good. Just like my old self. I hope that your doctor is able to give you helpful information on your anxiety and whether or not it has to do with your current lab results. Let us know if you have further questions. My best, Linda
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I'm often asked how I knew there was something wrong with me medically back in 2005. Today, that's what I'm posting about. For the entire summer, I just felt awful. So much was going on and I simply attributed my fatigue and irritability to work pressures at the time. That turned out not to be... Continue reading
Posted Sep 18, 2015 at Graves Eye Disease and Hyperthyroid
Today I came across a short but relevant article recently called Graves Disease in Teens: Overlooked Too Often. I'm featuring it here to help create awareness of the fact that autoimmune thyroid disease can strike at any age, and in many cases, some Graves Disease symptoms can be mistaken for ADHD. The latter can be... Continue reading
Posted Sep 8, 2015 at Graves Eye Disease and Hyperthyroid
Hi and thanks for writing. My advice is if you are not feeling well, and you are having symptoms again, to see your doctor right away. If your doctor is leaving the choice of medication and dose up to you I would find another doctor. It's very important to have a doctor closely monitor you because even the slightest changes in labs can have a dramatic effect on your symptoms and overall health. One thing that helped me was keeping track of my own lab results along with how I felt at those levels. That way, when I started to feel different (good or bad) I could almost guess whether or not my labs were improving or worsening. I didn't experience your particular situation, and I encourage others who did to offer comments and support. Let us know if you have any other questions we can help with. My best to you. Linda Sent from my iPhone Please excuse the occasional tpyo
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Hi, this might also be helpful to you......
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Hi Corrine, thanks for writing. I don't know of anything personally that can combat the hair loss associated with thyroid dysfunction or the side effects of medication. However, here is a link to an article published by Mary Shomon that might be helpful. She is a wonder resource on Graves' Disease, and as I just did a quick search just now, this seemed to be one of the more helpful and comprehensive articles about thyroid disease and hair loss. I hope it helps you. If I find out anything new over time I'll come back here and provide an update. My best, Linda
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Hi everyone, The American Autoimmune and Related Diseases Association is hosting a forum on August 29th, 2015, called "What Every American Needs to Know About Autoimmune Disease." The forum will be held at Henry Ford West Bloomfield Hospital. This is a wonderful opportunity to learn about autoimmune diseases, your family connection, coping strategies, as well... Continue reading
Posted Aug 21, 2015 at Graves Eye Disease and Hyperthyroid
Thanks Nina. It's never a problem to write, ask questions, and post your story. That is exactly why this blog is here ;) I read the above sure looks like there is more to know. Studying weight gain in post-total thyroidectomy patients is an opportunity for medical researchers in the future, for sure. Keep us all posted~and don't ever hesitate to ask questions, share information, etc. Your story will help the many readers here who are facing the same decisions and challenges as you! My best, Linda
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​Hi Nina, So what you're saying is you can't keep seeing your endocrinologist after surgery, you have to go back to your GP? Wow.....that's a significant thing to consider. I don't know if this helps you, but I've gotten so good now at knowing how I feel compared to my actual labs (which as you know I post here when I have updates). I've been able to tell (pre surgery that is) when my labs were going to change even before I had the blood work. I just knew. Then I made notes to know how I felt with each labs result. That's the only thing you could do if you worked with your GP--get involved heavily with your labs, insist on getting them checked if you don't feel well, and be a participant in your treatment. That way you can discuss together whether or not you need dose changing of your medication. In fact, if I had to move to my GP and do that, after so many years now, I feel I could. I wouldn't want to, but I could if I had to. She's great, however, and she was quick to diagnose me (within 2 weeks) with Graves' when it normally takes so much longer. I know how you feel when you say you have to bring all of your doctors together. My GP worked out of one hospital, my endo another, and my eye specialist a third. They didn't always send updates to each other, so I was the one briefing them on what was going on. My GP is now out of the same hospital as my endo, but still, it's a lot of work. I wish it were easier here in the US but it's not. Sounds like you've got the same issue. Regarding voice changes, my surgeon used the vocal chord monitoring device so she'd know when she was close to the nerves as she performed the surgery. I would not have had the surgery any other way. Also, she has done 100's of thyroidectomy surgeries. I chose her because of her experience. She does a lot of those surgeries. My voice is completely normal. It took a few weeks for me to have full strength, and a couple of months after that and I was good as new. As far as weight goes, I actually lost weight when I had the surgery.​ My weight has gone up and down. If I eat well, and exercise, I can lose weight. But if I sit a lot, as I do for work, and slack on my meal routine, or cut out the exercise, I'll gain. I have not read anything in medical journals about thyroid surgery and weight gain being correlated. If you have a link to information, would you share it here for me and others to read? Let me know if there's anything else I can do. Deciding to have surgery is a big decision. It took me about 2 years to decide. And when I did, I scheduled the surgery, and then cancelled! Then I booked it at the end of the year, and went through with it. It's a big decision. Weight it carefully for sure. My best, Linda
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Hi and thanks for the positive feedback! The Synthroid stays in your body for a long time. I recall the half-life of the medicine is about 7 days or so. For other brands of hormone, it's different, and sometimes shorter. What that means is that the hormone is not eliminated quickly from your's absorbed and circulating for days. That's why if you're taking Synthroid it takes several weeks for your body to acclimate to the drug. Then you get re-measured with new lab work and corrections are made to the dose if necessary. Other drugs are faster-acting, and eliminate more quickly. Do discuss all of these implications with your medical doctor. That said, my weight is a function of what I eat. If I want to lose weight, watching what I eat and exercising is key. I love my carbs, and when I eat more of them I just don't lose any weight, and sometimes I feel puffy. If that makes sense :) Moreover, the biggest thing I've done is begin the transition to whole types of food, natural foods, GMO-free foods, etc. I'm trying to eat a relative clean diet of food while still savoring my sweet tooth now and again, and other snacks in moderation. It's a journey. I'm a beginner and in transition. If I had it my way I'd eat pasta every day, lol! I also wrote about artificial sweeteners over time. I gave those all up around 2006 or so. No diet drinks, no nothing. I went cold turkey, and never looked back. Thanks again for writing and I'm glad you found my story helpful! Wishing you all the best. Let me know if you have any further questions. Linda
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Hi Nina, thanks for writing! I was waiting to answer you question this past week because I just got my recent lab results, and yes, they are back to normal. Thank you for following along all these years. I've had several people who continue to write that I met here right at the beginning. I'm glad you're one of them. With regard to surgery, is there any reason why you're unsure? I'm assuming you're still taking anti-thyroid medication? How are you feeling? For me, the see-saw of feeling good one day and so bad the next just got to be too much to handle. I was afraid of surgery; it's a big decision and there's no going back. In fact, I had my surgery scheduled and then cancelled it! Then finally went through it. My best advice is to take your time, research all your options, and discuss them with your doctor. That's what I did. It was only then that I was able to make a conscientious decision to have the surgery. Let me know if I can help, and thanks for checking in with me. Linda
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