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in reply to: GDATF 2012 Update & Annual Fund Drive #1175949
Shirley – that symbol you see is a QR code. You can “scan” it with a smartphone (iPhone, Android, Blackberry, etc.) and it will bring you to the donation form online. It’s really meant for people who get a hard copy of the annual appeal letter and want to donate right away without typing in a website. I’m guessing you just want to do it from your computer and that link is http://www.gdatf.org/shop/donate/
in reply to: Synthroid Recall #1175818mariaboo wrote:…if you go online, you can read that Synthroid has always had a potency issue. And it’s like Russian roulette, ok I start my Syntrhoid next week and will my batch be recalled at some point?I am cautious of anything I put in my body – food, medications, tap water, etc. – but I think writing something like that without any data to back up your statement could actually A. cause unnecessary panic in others who may read it and B. get you in some legal trouble if Abbott or their lawyers ever read these posts.
Food, cars, toiletries, toys, and appliances get recalled all the time. I worked at the service desk at Target for a few years and every few weeks I’d have to hang recall notices about a pair of little kids’ shoes, or a toaster oven, or a package of cookies. I am in no way downgrading your anxiety about being on medication for the rest of your life – that’s a reality for many of us on here – but to live in fear of a recall about a medication after one instance doesn’t seem justified unless you also live in fear of driving in a car and turning on the dishwasher.
in reply to: searching for eye mask #1175747I used several 2x4s layered atop one another, so to shove the first one under there, I only needed to lift that corner of the bed 2 inches off the floor. That took weight off the other side, so I alternated sides because I also was daunted by the task. Once I got it to about six inches, I was happy with the angle it provided. Just don’t try to sleep on silk sheets – you might slide down the bed throughout the night!
In preparation for OD surgery, Shirley suggested I also raise the head of my mattress. I did this by putting a few pillows under the mattress (between the box spring and mattress) all the way across the top of the bed. This was helpful as I could sleep in a somewhat upright position, which alleviated a LOT of post-op swelling. It was also nice because you can only elevate the head of your bed frame so much without damaging the frame, so this provided even more elevation without bending the bed frame.
in reply to: searching for eye mask #1175745Have your raised the head of your bed? I put a few 2×4 under the head of my bed frame so that I slept with my head elevated even when I shoved the pillows off my bed in my sleep. My physician recommended this as well as sleeping with several pillows. It helped a lot.
in reply to: searching for eye mask #1175741It’s not an eye mask, but I used the CVS brand Peas Hot/Cold Therapy Pack. The medium size is perfect for draping over the eyes and it was only $7. I imagine you could wrap a headband around it to make it stay in place, but I found I was able to just lay on my back, head slightly elevated and rest it on my eyes. I used cold obviously for my post-OD surgery swelling but warm compresses might help with TED…? Hope this helps.
in reply to: brain recovery time? #1175573I really think it will improve when my levels stabilize…that hasn’t yet happened in my three years of having Graves’. At least I hope so. If not, I’ll never be a company spokeswoman, which has been my dream for a long time.
in reply to: An Introduction #1175619Sorry to have to welcome you to the club, but welcome. It’s interesting you mention this because my dad was just diagnosed with hyperthyroidism last week at the age of 62…without symptoms. He gets his TSH checked every year and this year, his primary care physician called him back and said he has hyperthyroidism and sent him to my endo (now our endo) who ran more labs and confirmed it.
His uptake is coming up soon, but since I was diagnosed with Graves’ in 2012, our endo is pretty sure he has it, too. He survived a massive heart attack in 2007 – his only symptoms were flu-like ones, so I’m tempted to believe he just doesn’t recognize his body’s messages the way I do.
Have you look at the (very long) list of symptoms? I had no idea what Graves’ was before my diagnosis but it finally made sense when I was diagnosed during a hospitalization for a “stuck” resting heart rate of 150-something. Six months earlier, I was convinced I had a tapeworm due to an insatiable appetite despite rapid weight loss, but my doctor tested my stool and said I was fine (never ran any labs). Maybe seeing the list will help you accept the diagnosis if some of them apply…?
in reply to: brain recovery time? #1175571I don’t feel like I have problems concentrating or focusing, but the connection between my brain and mouth seems disrupted. I consider myself to be an intelligent person – I got good grades, aced my SATs and ACTs, got into all the colleges I applied to, earned a bachelor’s and a master’s, have a pretty good handle on world affairs, and can have meaningful conversations with people I hardly know. Yet since Graves’, the words don’t come out right. I trip over my words (which is not OK when you’re in public relations) and completely lose my train of thought mid-sentence. Paired with my “wide-eyed stare” courtesy of TED, I often leave people wondering what the heck is wrong with me. They never say it, of course, but I can see it. I feel stupid and ashamed when speaking in a meeting and say things as if I’m dyslexic but really it’s just my brain moving faster than my mouth. This never happened before Graves’.
in reply to: TSH? Is it adequate? #1175612Exact same boat. Except my RAI was almost two years ago and I spent a few months hypO last year. I’m seriously exhausted by my never normal levels. My endo only ticks off the TSH and T4 boxes when he sends me a lab slip every six weeks. I always check off T3, too.
in reply to: What causes a bad day? #1175442in reply to: Coping with the holidays #1175461I just booked myself an afternoon at the spa next weekend. It’s the only Saturday or Sunday that I don’t have a holiday party or event of some sort, and I’m going to take full advantage. And to make it even better, it was a birthday gift from my dad back in October when I was recovering from OD surgery.
As for parties, learn to say no. I am bowing out of my work Christmas party because I have three others that week. And if you do need to bring food because people like Bobbi decided to make it a potluck (ha, just teasing!), put that crockpot to use. You’d be surprised what you can make just by dumping a bunch of stuff in before work and letting it heat up all day or even overnight.
Enjoy a cocktail or two even if you normally don’t, but know your limit. The relief a glass of wine brings is canceled out when that glass turns into a bottle and you wake up green around the gills.
If finances are tight because of medical bills, make gifts this year or offer services like cooking a meal, shoveling the sidewalks, or washing the car.
Lastly, I keep hearing reminders from the medical community to use this time together with relatives to learn more about your family medical history. I’m 28, and only learned last Thanksgiving that my dad’s mother died of breast cancer. She was estranged from the rest of the family because of alcoholism, but it’s important to me as the only female offspring to know about a possible risk of breast cancer.
Hi Cheng,
Prednisone worked for my TED. I had very mild TED for a little longer than a year. The same week I finally went hypo post-RAI, my eyes bulged out the sides, became very red and irritated, and I experienced severe pain behind my eyes. Two ophthalmologists later, I was finally diagnosed with moderate TED. I underwent an MRI on my orbit with contrast, and it was determined that the swelling was severe enough to warrant prednisone. I kid you not – within 12 hours of my first 50mg dose, the pain was completely gone and my eyes slowly began to retreat back into my orbit. After six months of a slowly tapered dose, my eyes were back to mild TED – looking the same way they did before the sudden swelling and pain.
The prednisone was not without side effects, though. Some people do better than others, but my body responded just as positively (TED relief) as it did negatively – I gained a lot of weight, got stretch marks on my “love handles” for the first time in my life, had acne (at 27 years old) for the first time in my life, and had palpitations the whole time I was taking the drug. To me, it was worth it at the time but now that I have started to lose the weight and my face is completely clear one year later, I am glad I don’t have to take prednisone anymore and hope I never do again.
Kimberly mentioned some people’s symptoms return as soon as they stop taking prednisone – mine did not. My neuro-ophthalmologist (I hope you are seeing one of these and not just any ophthalmologist) monitored my progress every three weeks, and we tapered down my dose by 5mg every three weeks, so very very slowly. Had my symptoms returned, he told me he would bump me back up to a higher dose but fortunately that wasn’t necessary.
As a young woman, the side effects were pretty difficult for me but I would make the same decision again if I had to. The pain and swelling was so bad that I would not leave my house except to go to appointments, and wore my sunglasses all hours of the day. Acne, weight gain, and stretch marks are awful, but necessary evils. I call prednisone “a blessing and a curse” because it saved my vision, and here I am one year later – it’s been two months since my bilateral decompression and my eyes are back to their pre-TED look and feel.
By the way, I took prednisone in the form of a pill. I know some people take it via IV. Also, my neuro-ophthalmologist told me if my eyes did not respond to the prednisone, they would not respond to radiotherapy either, so that was never our backup plan.
in reply to: OD in the “hot” Phase #1175081Unfortunately, some people develop TED years (or even decades, like snelsen) after treating Graves’. You needed to get that under control for many reasons, but TED can rear its ugly head whenever it wants, regardless of whether or not your thyroid levels are stable, normal, etc.
I also noticed the bruising took a few days to get really prominent. I’m glad your pain is minimal. Mine was pretty bad but then again I had both eyes done and they went up my nose so there was a lot being shoved around and big tools in small places.
Make sure you look into FMLA. I took two full weeks off and then worked mornings only for the next two weeks before returning to full time. Even then, my eyes still tired easily and I found myself becoming easily distracted once the eye fatigue set in. Then again, you might find it easier since you only had one eye done, or worse since you have double vision (I never experienced any).
Good luck with the rest of your recovery. It is a long process but many of us on here have been there so you have our support and empathy.
in reply to: 2 weeks till atomic cocktail (or pill) #1175191Hi Jake,
I don’t have small kids, but I have a small dog. So when I had RAI, he went to his sitter for a long weekend. Otherwise I lived alone, but if I had others in my household at the time, I would’ve treated myself to a long weekend at a hotel where I could order room service and basically stay isolated while still enjoying my down time. I felt fine other than a sore throat on days 3-4. You’re also only really exposing radiation via bodily fluids – sweat, urine, saliva, etc. – so you don’t have to worry about exposing hotel workers or the next guests to stay in the room as long as you follow the precautions nuclear medicine will give you. Things like flushing twice, showering twice a day, and using plastic utensils (you can bring your own and just not use the ones that come with room service).Treat this as a mini vacation – you’ve earned it dealing with Graves’. I saw your recent post about double vision so make sure you get that checked out by a neuro-ophthalmologist or at least an ophthalmologist who treats TED, not an optometrist or optician.
in reply to: OD Disappointment? #1175115I had bilateral OD in late September, so it’s only been seven weeks. I am pleased with the progress so far, but by no means am I 100% satisfied because the surgery process is ongoing. I am still swollen as faces tend to be for months after major surgery. My upper lids are still retracted, but we knew that would happen, which is why an eyelid surgery (medically necessary, not cosmetic) is planned for six months from now…or so. Most people need this additional surgery after OD, so I’m curious as to whether this topic has been discussed with your surgeon?
Also, even though your surgery was several months ago, keep in mind that thyroid levels and swelling can affect the final outcome, so you might need to give yourself a few more months for the swelling to completely cease. Are you thyroid levels stable?
How much decompression did the surgery provide? Mine provided 6mm of decompression in the right eye and 4mm in the left eye so both eyes are now at 19mm, which is normal and once I have the eyelid surgery, my eyes will look exactly the way they did before TED (I can already see it when I smile big).
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