Forum Replies Created
-
AuthorPosts
-
in reply to: Just dropping in after TED orbital Decompression #1170544
I’m sorry to hear this could have been avoided, but I am so glad you have not decided to pursue legal action. Think of all the people you are helping by allowing your surgeon to keep doing what he does, and what he is obviously good at. You’re right that we all try our best. I’m in PR, so if I screw up, a client gets pissed or a reporter stops taking my calls. Not ideal, but no one has died. I could never be a physician, especially a surgeon. People who sue make it harder for the rest of us to get good medical care from someone who simply had a “human” moment and made a mistake. I applaud you. As I am preparing for OD, what scans are you referring to where the hole could have been visible? I had an MRI last week and do want to mention the CSF leak to my surgeon, along with my list of 389 other questions.
in reply to: Newbie with Graves – #1170777Hi modo,
I have heard lots about “thyroid belly” and I have it. I’m only 27 and in otherwise good shape so I can’t blame it on age or genetics. I always had a flat tummy before Graves, ugh! I know high cortisol levels are associated with disproportional stomach fat. I don’t know much else, other than that stress and sleep have a lot to do with cortisol, so make sure you’re getting enough sleep and reducing stress as much as possible. I am so frustrated with my thyroid belly that I am going to schedule an appointment with the nutritionist (really meant for diabetics) at my endocrinologist’s office.
I also have TED and was on a huge dose of prednisone for a while. It will likely make you gain even more weight, though hopefully it will come off once you stop taking the prednisone. For me, it hasn’t and I’m not sure why. Like Shirley said, make sure you get in to see an ophthalmologist who treats TED or even better, a neuro-ophthalmologist. Good luck!
Kelly
It took me six full months to go hypo, and I think it came on gradually more in symptoms than in bloodwork. I had labs drawn every two weeks because my case was a little more severe than most, and they always showed hyper, hyper, hyper, dropping very slowly but never enough. I had RAI in February 2011 and by May I started to pack on the pounds, get very heavy periods, and feel very tired all the time. In mid-July 2011, my eyes flared up one morning to the point that I called out of work because I looked like a freak. One was swollen shut, the other was red and protruded. After a few different appointments, I was finally diagnosed with TED and started a heavy round of prednisone. The same week I was diagnosed, my bloodwork showed I was hypo. I started Synthroid right away, first at 125mcg. I got hyper, dropped to 100mcg. Still slightly hyper, dropped to 75mcg. By now it’s Christmas, I finally finished six months of prednisone and my eyes are in the cold phase but still drastically different than pre-TED. Still slightly hyper in February 2012 when I moved from FL to MA, so my endo had me alternative 50/75mcg every other day. I didn’t get labs again until May when my new insurance kicked in. What do you know, I’m hypo again. So new endo upped my dose to 75mcg. As of last Friday, still hypo (TSH 14) so we upped it to 88mcg which I picked up this morning and will start tomorrow. He confirmed there is no thyroid tissue left 18 months post-RAI, yet we can’t get me settled on the right dose. Oy!
I also feel the cross between symptoms, and unfortunately, new endo told me it’s not thyroid-related. He said to schedule an appointment with a cardiologist to discuss the palpitations. I have been on the beta blocker since February 2010 and it’s messing with my cholesterol and just not something I want to be on forever. There is no endocrine reason for me to still need it, yet if I skip a dose, I’m laying on the floor in a heap of sweat with a pounding heart. I also have no heat tolerance whatsoever, and I think that might be related to the heart rate.
As for weight gain, I’m sure the prednisone didn’t help but I finished that in October and I still have not lost an ounce despite a clean diet (very little processed foods), minimal alcohol intake (I drink a glass of wine maybe three nights a week), and lots of exercise – both cardio and strength – and yoga and meditation. I’m at wits end, and yes I’m still hypo, but I haven’t always been, yet my weight has never come down since about four months after RAI. When diagnosed, I had dropped from my normal 140 to 128. Now I am at 160 and it is NOT muscle (again, despite exercise). My next step is to see a nutritionist because something isn’t adding up.
Kimberly has mentioned that our metabolisms can reset with Graves and that sucks because I was always petite but as a gymnast, also muscular with so much strength and endurance. Now I struggle to lift my own weight in a crunch and run for more than a few minutes. I am also going to ask my endo about T4, but I think first, we need to get me euthyroid and see if that helps at all.
It’s a long journey, but hopefully in a few months you will feel better physically and about your body. Has your endo mentioned the possible need for another dose of RAI? Mine did for weeks until, thank goodness, the first dose finally kicked in.
Also, I don’t think anyone goes hypo a week after RAI…? I think Bobbi or another facilitator has mentioned the half-life or something else about how long it takes to flush out the I-131 as well as the thyroid hormone.
in reply to: What my surgeon said #1173138Hi VanIsleGal,
I didn’t end up having surgery (I chose RAI), but my appointment with the surgeon was much the same. I was 25, almost 26 at the time, and I wanted to explore all my options. The surgeon is a general surgeon but since I worked at the hospital, I knew he had an excellent track record and bedside manner, and performed hundreds of thyroidectomies. However, I got the impression that I wasn’t worth his time or money – he wasn’t rude at all, but he was very graphic with the risks and told me my voice might never be the same. His position was that he did just not feel like someone at my age in otherwise good health should undergo a risky surgery when RAI was a much safer alternative. I struggled for a long time until I finally met with the nuclear radiologist at the hospital to discuss RAI in greater detail, since my endocrinologist really didn’t tell me much about it. In the end, I decided on RAI for a number of reasons, and honestly, finances and recovery time were probably the biggest two reasons. In the end, it worked out. But I think surgeons want to be clear that all surgery carries risks, and especially when there are other alternatives to surgery, they want to be sure we are making the best decision for ourselves.
If I had to do it all over again, I would still do the RAI. That wasn’t a walk in the park either. I felt pretty lousy in the weeks after and it took six months to go hypo and start Synthroid, and I developed moderate TED. Unfortunately, I don’t think anything about Graves is a walk in the park and you need to decide which treatment is most appropriate for you. It might help to get a second opinion from another surgeon, and maybe explain how your first appointment went and maybe he or she will be a bit more realistic instead of just stating all the risk. You know the risks, you need to decide what is the lesser of two evils. I’m assuming since you’ve had Graves three times now that means you’ve tried to achieve remission via ATDs and failed? Remission wasn’t in my cards either, and after a year of still extremely hyper levels despite huge doses of PTU, I had to decide. Good luck!
in reply to: Alcohol and Tapazole #1173098I’m hoping one of the facilitators can chime in here, but I don’t think the liver risks with either PTU or other ATDs has anything to do with Tylenol or alcohol – I think it’s a different reaction. But I may be totally off base. I only say these because I was on PTU for one year, and despite the black box warning, my endocrinologist told me Tylenol and alcohol were fine in that regard. I needed to watch my alcohol consumption for a completely unrelated reason – my heart rate.
in reply to: Accepting Graves #1172969Hi Tomas,
I’m sorry for everything you’ve gone through, and I wanted to chime it because I have been in your ex-girlfriend’s shoes. When I was diagnosed, I was in a pretty up-and-down relationship with my long-time college boyfriend. After graduation, I got a job four hours south and he enrolled in law school two hours north, and our drive to see each other was seven hours in traffic, so he didn’t come visit me in the hospital. Since he was in school, I understood and wasn’t upset that he didn’t come. But I was very sick, and laying in that hospital bed left me plenty of time to think about every single little thing (I didn’t have a phone or laptop or any personal belongings for the first two days I was hospitalized, so I was REALLY bored). I thought about whether the downs in the relationship were worth the ups. In the end, I decided they were not. A few days later, after several days in the hospital and several more recuperating at home, I called my then-boyfriend and told him it was over.
I don’t consider it a rash decision at all – even though some people here mention that Graves patients are told not to make major decisions until stabilized. My brain and feelings were never compromised and the scariness of coming so close to death gave me immense clarity.
Your ex-girlfriend was diagnosed with a disease that, as women especially, really changes the entire game. I moved on quite quickly to someone else, and my ex quickly decided he wasn’t over me when he realized I had moved on. It didn’t work out with the new guy, because those rebound relationships rarely do, but I needed to be taken care of and feel loved and it seems like she wasn’t getting that from you. I never went back to my ex and have not spoken to him in more than two years.
Of course, I don’t know either one of you and I’m just going off what you have written, but if I were here, I would want my space. Let her be. Whether or not she ends up with this new guy, it doesn’t matter to you. I would continue what you’re doing – researching Graves and learning all you can. That way, if she does reach out to you, she’ll know you did all this for her. But having been in her situation, she needs her time and space and to feel loved, by you or by someone else. I hope for your sake she changes her mind, but know that she has to do what is best for her right now.
Kelly
in reply to: RAI or Surgery? #1172987Hi kararoot,
Being diagnosed with Graves and facing a decision on which treatment route to take is an extremely scary and stressful time. The last thing you need is an attitude from the one person you are supposed to be able to trust your health with. When I read what she said to you, my jaw dropped. I can only think of one word to describe that kind of behavior from a physician (I worked in healthcare until February, and I know her type), but I don’t think I’m allowed to say it on here. Please find a new endocrinologist. One who respects your knowledge on YOUR condition. I feel so blessed every time I come on here and read these horror stories of people with jerks for doctors. Both my old and new endocrinologist (I moved from FL to MA) appreciate my interest, knowledge, and commitment to understanding Graves. They even share medical journals and clinical studies with me because they know I’m a nerd and like reading that stuff. I’m not saying this is the extreme you need to find with your endocrinologist, but accusing you of trying to do her job is ignorant – it sounds like she is not at all interested in your willingness to learn so you can make the best treatment decision for YOU.
And I’m sure one of the facilitators can share with you the information on why you need a traditional physician as opposed to the integrative health doctor in treating your Graves. Sure, nutrition and stress affect our overall health, but neither of those can cure Graves.
For whatever it’s worth, I chose RAI. It was a six-month journey from RAI to hypo so I could begin Synthroid, but I’m happy with my decision and would make it again. I am doing well, and preparing for OD.
in reply to: thyroid and eye disease #1172301The replacement would be levothyroxine or the brand name Synthroid. Did he say how he plans to treat you for the hypothyroidism? You were trying to achieve remission via meds, right?
I’m sure you can ask for a mild sleep aid if you find the prednisone causes insomnia but monitor your heart rate as well, as that may be the culprit to sleeping problems.
If your doctor gave you the OK to exercise, then that’s great and I would try to do as much as you can to combat weight gain. I was not allowed to exercise because of my heart rate and because I was taking several medications that temporarily increased my risk of bone fractures. Again, everyone is different but do what feels good and stop when it becomes too much.
in reply to: thyroid and eye disease #1172299Sorry to hear about the prednisone but, in the end, it should help. Was it prescribed only for your eyes? I’m just curious, because my endocrinologist was the first one to finally tell me, “Yes, you had TED. Go to the neuro-opthamologist in town,” when my regular opthamologist told me it was allergies or an eye infection. So although my endo clearly could tell it was TED, he didn’t prescribe anything for it. Maybe he would have if I couldn’t get an emergency appointment with the neuro-op later that day. And you mentioned that you’re hypo, but didn’t say anything about starting replacement…will you begin taking it soon?
Anyway, I started at 50mg/day, so a little bit more than you. It helped with the pain immediately. I remember I picked up the prescription after work on Friday last July and when I woke up Saturday morning, I was pain-free for the first time in weeks. The swelling and bloodshot look was gone the next morning as well.
I tapered down by 10mg every three weeks, so 50mg for three weeks, 40mg for three weeks, etc. I ended at 5mg and had no return of symptoms, which my neuro-opthamologist was really concerned about. If my math is correct, I was on the prednisone for about 18 weeks.
As for the side effects, mine were pretty severe but as he told you, everyone handles steroids differently. Mine didn’t start right away. But within a few weeks, I realized my weight had ballooned when nothing fit – not even close – and I had horrible stretch marks on my “love handles,” which weren’t love handles before the prednisone. Sure, I probably aided the weight gain by stuffing my face to curb the intense hunger that prednisone caused, so I recommend stocking up on lots of lean meats and high fiber foods so you will feel full more quickly. Drink a lot of water, too. I actually had to start taking an additional beta blocker in the afternoon to keep my heart rate under control. I also was advised not to exercise because of the heart rate, so I was pretty much doomed to gain weight. Once I stopped the prednisone, that’s when the acne began. It got so bad that I had 10-12 pus-filled, painful cysts on my face at any given time. Finally, after six months and a strict regimen of Cetaphil cleanser and moisturizer and Epiduo, I got it under control. I also cleaned up my diet a lot and drank a ton of water, so that probably helped. It’s now been exactly one year since I developed TED and started the prednisone, and my face is finally clear. I was given Retin-A for the stretch marks but I have very sensitive skin and it caused my skin to be so dry that it turned into sores, so I’ll deal with the stretch marks. I also haven’t been able to lose any of the weight in my mid-section so I really could care less about the stretch marks right now – I’m not wearing a bikini any time soon!
I complain a lot about the prednisone, but keep in mind that I understood the side effects were the lesser of two evils – saving my vision was NOT negotiable. It helped tremendously, and I am now ready for OD, so I’m glad I did the prednisone before things got so bad that surgery would’ve been off the table for another year.
Also remember that I had a pretty severe side effects. My co-worker was on them for symptoms associated with her colorectal cancer (not exactly sure why), and she had none of the side effects that I did.
The one side effect you mentioned that I did not experience was insomnia. Since I felt like I did pre-Graves diagnosis all over again, I was exhausted by the end of the day. I did need to take that second beta blocker or else my pounding heart would keep me awake, otherwise I was asleep as soon as my head hit the pillow. I did gentle yoga and took long walks with the dog, and that has always helped me sleep, even when I was prohibited from exercising.
Good choice on the sunglasses. I never turn my office light on. On very bright days, I wear sunglasses at my desk. I always wear them outside until about an hour past sunset. I have a second pair that has a weird tint so even if it’s dark and rainy or close to sunset, I have 100% UV protection but I can still see well enough to drive. Don’t feel embarrassed. And you don’t owe anyone an explanation. If you have fluorescent lights in your office, your eyes might bother you less if you unscrewed them. That’s what I did at my last job, and worked with a small desk lamp instead (since my cubicle had no windows).
I hope the prednisone brings you relief soon!
in reply to: Eye Symptoms #1172682Quote:But I know once you’ve been in remission, if Graves returns it can attack anything else-such as your eyes, skin, and muscles…You don’t need to relapse in order for Graves to affect your eyes, skin, muscles, etc. I was somewhat stable on PTU for a year, then had RAI and six months later, developed TED. There was never a remission or relapse period.
I read angelamercy’s post as though she is preparing for radiation on her eyes, not RAI, but I could be wrong.
Either way, you are not alone. TED has taken a huge toll on my social life, love life and perception of myself. I used to be so happy, outgoing and busy. Now I avoid social situations as much as possible, hate being photographed and am just now getting back into the dating scene after more than a year. I too used to consider myself pretty, not skinny but healthy, and I liked my squinty eyes. Now I’m fat, have developed moon face and acne from the steroids I took for TED, and my eyes look stupid. People who didn’t know me before TED can’t believe I’m having surgery on my eyes. They said things like, “But you have such big, pretty eyes.” Yeah, well they’re not MY eyes and I don’t care what you think. People who DID know me before the TED don’t even recognize me anymore. My best friend’s parents had NO clue who they were talking to at her housewarming party last month until an hour later when someone mentioned my name. And old co-worker didn’t recognize me either and said, “You look so different.” I even had to get a new license picture taken because cashiers thought I was using a fake ID.
You are NOT being petty. Fortunately, my oculofacial surgeon does lots of OD surgeries, and he said not a single patient has had this surgery done in vain, and he would never perform one if he didn’t think it was medically necessary. He explained that our eyes are the central point of our faces, and what people notice first. So if your eyes are big and pretty to others, but bulging and ugly to you, that’s what matters. I too am sick of the “God planned this all out for you” nonsense because unsolicited advice is one of my biggest pet peeves.
I did not have radiation on my eyes because they responded well to steroids (prednisone) but are still bulging. Surgeon says they will not go down any more with steroids or radiation, so I am scheduled for a pre-up later this month and will have more details on my upcoming OD then. Good luck with the radiation! Someone else on here documented her radiation treatments but I can’t remember who it was or what the end result was. You might try searching. And please, keep us updated and let us know if you have a neuro-opthamologist and/or a surgeon lined up.
Kelly
in reply to: Newly diagnosed and scared #1172645What’s even better than your family finding this site is the fact that they sought out this site…for you! Having a good support system is so important during this time. My parents wanted to fly down to FL from MA when I was diagnosed. I didn’t let them (they are divorced and I couldn’t pick just one to come and if they both came, my stress levels would’ve been through the roof!) but they did their own research, learned a lot, got their own thyroid levels checked, asked their respective families about thyroid disease in the family (there is none, just me), and have followed my 2.5-year journey with Graves very closely.
The bloodwork thing is no sweat. My previous endocrinologist preferred I get my labs done first thing in the morning on an empty stomach (except for my meds), so I did that every six weeks on my way into the office and treated myself to Starbucks afterward. I made it into something I looked forward to, instead of an inconvenience.
I’ve been on here since the day I was released from the hospital after my diagnosis – I had a thyroid storm – and it’s been so helpful and informative. If you can afford it, you should definitely try to get out to the conference this fall. I wish I had gone earlier in my Graves journey but this year will be my first.
in reply to: Eye Symptoms #1172670The first symptoms of TED I noticed were allergy-like redness and watering. My regular opthamologist told me it wasn’t TED but allergies. When allergy meds didn’t help, he told me it was an infection. When I saw my endo a few days later, he said it was most definitely TED and referred me to a neuro-opthamologist who confirmed the diagnosis. Not trying to scare you – it may simply be allergies especially this time of the year. However, it can’t hurt to get established with a neuro-opthamologist in case it is TED, or in case you develop it down the road. It’s so hard to find them and even harder to get an appointment, so the sooner you get established with one, the better. Good luck!
in reply to: thyroid belly?? #1172593Hi kg,
I haven’t heard of it related to Graves itself, but rather prednisone – which many of us take for TED and/or before RAI to reduce the likelihood of TED worsening. One of the most common and annoying side effects is weight gain, especially in the face (moon face) and trunk. I was blessed with both.
I have been about 15-20 pounds overweight since the whole Graves battle began (after starting treatment, of course – before diagnosis I was so skinny and loving it!). Though I have lost some of the weight, I gained so much and so quickly in my trunk when I took a high dose of prednisone for six months that I now have lovely stretch marks on my love handle area. Let me tell you, it’s really frustrating to have stretch marks at 27 with no babies when I’ve been in great shape my whole life.
Where are you in your treatment process? Being hypo will certainly lead to weight gain but hopefully you will see the fat turn back to muscle as you get stabilized on replacement. I am not quite there yet, but I know being stable has a lot to do with how I look and feel so I’m trying not to beat myself up too much.
As Bobbi mentioned, clean your diet as much as you can. I’m trying really hard to eliminate processed foods, but I do love a good ice cream sundae every now and then. And that’s OK, because balance is important. Remember to get back into an exercise regimen slowly. I found yoga and running to be the most therapeutic for me, and both allow me to start slow and work back up to my old intensity level (I used to be a gymnast). And certainly ask for regular blood work if you feel hyper or hypo. Most endocrinologists have a dietitian in the office, usually for diabetic patients, but you might ask if you can make an appointment to help you get back on track since Graves has been known to reset one’s metabolism (or is it treatment that does this? Kimberly has mentioned it before), so you might not be able to eat the way you did before Graves.
in reply to: RAI coming up…what to expect?? #1172551Hi Kindergal,
I had RAI, and ended up going back on PTU for a few months because I remained hyper for a while (22 weeks). I didn’t feel bad in the first couple of weeks, just kinda felt like I did when I was on PTU before the RAI, which was slightly hyper. I had the RAI on a Friday morning and went back to work on Monday, and never felt like I needed any time off but everyone is different. I was severely hyper when diagnosed and had what my endocrinologist called the most extreme/severe Graves he had seen, but I am also pretty stubborn and don’t like missing work ever. I was on 150mg of PTU before and after RAI for a total of about 16 months and my levels remained slightly hyper even on the PTU, which is why I did the RAI.
Good luck, you’ll do fine!
-
AuthorPosts
