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in reply to: Slightly hypo but still hot with palpitations #1172462
I had RAI in February 2011 and it took exactly six months to go hypo. I was only hypo for about 3 weeks.
in reply to: OTC meds and diet effects on Graves’ symptoms #1172457Did your cold medicine include decongestants? Those can cause the palpitations and “racing heart” feeling you described. That’s why people with high blood pressure have to be careful to take only decongestant-free cold medicine like Coricidin. http://www.nhlbi.nih.gov/health/health-topics/topics/hpl/causes.html
When I was diagnosed and for the next 6 months or so, I was instructed not to do anything that would raise my heart rate – exercising (other than leisurely walks or gentle yoga), drinking coffee, taking decongestants or steroids, drinking alcohol, other grown-up things, etc. I was like, “Wait, what? Why can’t I take decongestants.” And then it was explained to me.
I would ask your endocrinologist which “triggers” you should avoid, if any.
in reply to: Question about Selenium&Remission #1172191If you’re looking to add some good, healthy fats to your diet, Brazil nuts are an excellent source of selenium. I used to eat 1 ounce a day instead of taking the selenium, but it got expensive (the only place I could find them was at Fresh Market) and I didn’t want the extra fat. They are quite delicious but you can eat a whole bowl without even realizing it, so be careful. And make sure you get the raw ones, not the ones roasted in oil and salt.
http://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/
in reply to: thyroid and eye disease #1172288Shirley,
When living in Fort Myers, Florida, a neuro-opthamologist did all of the testing, including the visual field test about every 12 weeks. Now that I live in western Massachusetts, there are no neuro-opthamologists around here. My oculofacial surgeon actually does the visual field test in his office (well, he doesn’t do it – the machine does) as well as taking all sorts of measurements that my neuro-opthamologist in Florida did. I think this is common in areas without a trained neuro-opthamologist. My surgeon is renowned in OD surgery and all the local endocrinologists refer their patients with TED to him.
in reply to: Sorry, but I need to vent! #1171818Hi Barb,
I hope your endocrinologist or the nuclear medicine department explained the post-RAI feelings a bit. I definitely felt a little hyper since I had been off the PTU for a while. My doctor warned me if my resting heart rate ever got above 120, to go to the ED. I was still on beta blockers so it never got above 120, but it definitely hovered pretty close a few days after RAI and stayed there for about a week. I took it easy just to let my body get rid of all that thyroid hormone as well as the RAI. I had a bit of a cold/strep feeling for the first few days after RAI and lucky me, got the flu a few weeks later, but I think feeling lousy is something they don’t warn you about. Inside, your body is going through all sorts of changes, some immediate, some gradual, and that’s bound to affect each one of us in different ways. I felt like crap for almost a week, and then each day got a little easier and brought me one step closer to where I am today – in good endocrine health. Wishing you patience but also hope for a speedy recovery!
in reply to: thyroid and eye disease #1172279Hi Jaqe,
While my TED isn’t as severe as yours sounds, I completely understand why you feel ugly and gross. I do, too. I used to consider myself pretty. Since TED, coupled with the moon face, weight gain, and acne I got from the steroids to treat my TED, I hate the way I look. I also avoid having my picture taken as much as possible. I don’t think I look so bad in the mirror but when I see pictures, I disgust myself. I’m not depressed or anything, but I refuse to get back into the dating world until after my orbital decompression. I think it’s totally normal to hide your eyes when they suddenly look so strange after years of normalcy. I wear sunglasses whenever I can and honestly, don’t have nearly as much of a social life as I did before the TED. I never leave the house without mascara because my eyes look scary without it (I have blond eyelashes). Are you under a specialist’s care for your eyes? Looks are one thing, but you shouldn’t have to live in pain. Also, I say “looks” with a grain of salt because even my eye surgeon agrees that it’s not about the aesthetics, but the fact that our eyes are the central point of our faces, and when they change, so does our whole appearance, both inward and outward.
I hope you achieve remission, too. But do know that your eyes will get better eventually, and TED doesn’t follow the same timeline that Graves does.
in reply to: Graves ophthalmopathy #1172233I didn’t mean to suggest immunosuppression after steroids, just while on them. That was my experience.
I no longer work in health care so the flu shot is less of an issue for me. However, my endocrinologist was not comfortable with the research regarding flu shots for those with untreated (maybe he used a different word?) Graves disease. Flu shots were mandatory at my hospital by a certain date, probably December or January, and two years in a row that happened while I was on PTU and thus considered untreated/uncured/uncontrolled/whatever word he used. He said about 50% of physicians recommend the flu shot for those with Graves and the other 50% advise against it. He was in the latter category and I was fine with it since in those three years, I only got the flu once and it was about a week after RAI so it could’ve been a number of things.
I have no plans to receive the flu shot now or in the future, unless I work somewhere it is required or if my health is compromised without it. I haven’t met my new endocrinologist yet (I moved from FL to MA and see him Monday for the first time), but I will ask him about the flu shot then.
in reply to: Hello from a New Member! #1172245Hi Princess,
I was 25 at diagnosis and am 27 now, so I understand your situation. My endocrinologist told me if my heart rate is ever at or above 120bpm resting, I need to go to the ED. It only happened once so I called his office and they actually called the ED as I was headed there so I didn’t have to wait with all the broken bones and drug-seekers.
I took PTU for one year until I was finally well enough for RAI. I chose not to drink any alcohol during that year, but I was scheduled for RAI the first week in January so over the holidays, I had a few glasses of wine. It had been so long since I drank, that one glass made me feel silly while two just made me completely drunk.
I was never instructed to stop drinking, but I felt like doing everything “natural” possible that I could to heal myself. I stopped eating so much processed food and although I couldn’t work out because of the heart issues at first, I did a lot of yoga, meditation, and weeding out the negative people in my life (that also included my boyfriend of two years). I switched from a job I hated to one that I loved, and it was nice to go home and not feel like I needed that glass of wine at the end of the day.
I am back to my old self of drinking a glass of wine or two once a week, sometimes twice a week, but even one glass raises my heart rate significantly and I often have to take an additional beta blocker even though I only need 10mg in the morning most days.
I would ask your doctor about both topics. Obviously the alcohol question can wait until your next appointment, but you should definitely call his or her office, tell them your resting heart rate is 120bpm and ask what they advise. If you’ve been prescribed beta blockers, taking one or even half might help but don’t do that unless you’ve been instructed to do so.
Are you diagnosed with Graves or just hyperthyroidism? Feel free to send me a private message if you’d like some more perspective on being a 20-something with this pain-in-the-butt disease.
in reply to: shoulder post op and graves #1172180I’m sorry, I didn’t mean to scare you. I was surprised by the symptoms listed there, but mine was as minor as unexplained pain at my surgery site and a small area around the site. I just figured it was worth mentioning to your surgeon.
in reply to: Graves ophthalmopathy #1172231Were you given any steroids for the Graves ophthalmopathy (known commonly referred to as thyroid eye disease or TED for short)? Steroids can lower your immune response. I worked in health care for several year and when I took prednisone for TED, I ended up getting the flu. My endocrinologist hasn’t allowed me to get a flu shot since my Graves diagnosis in early 2010. That, combined with working in a germ-infested hospital while on a heavy dose of prednisone, led to me getting the flu which knocked me off my feet for almost two weeks.
in reply to: Question about Selenium&Remission #1172189Since my diagnosis with moderate TED in July 2011, I have been taking selenium. I started at 200mcg per day, and in January I dropped down to 50mcg per day. I can only find 200mcg pills around here, so I take half a pill every other day. I never took it for Graves – I always took it for TED. Both my endocrinologist and neuro-opthamologist recommended it for my eyes. In fact, my endocrinologist in Florida knew the Italian researchers who performed the study, so he was very much in support of selenium.
in reply to: shoulder post op and graves #1172178Did the woman you met mention (reflex sympathetic dystrophy syndrome)? I was “diagnosed” with this after my knee surgery several years ago. Basically there was no reason for me to be having pain long after healing and completing physical therapy. The surgeon suggested a nerve block, which at 20, I wasn’t willing to do, so I sucked it up and eventually the pain dissipated over time. I’m not telling you to suck it up, but ask about RSD or CRPS, or whatever they are calling it these days.
in reply to: Is This Normal? #1171827Hi Kells,
I never had double vision, but I was diagnosed with moderate TED in July 2011. You mentioned opticians. I hope you are not going to them for these symptoms…? At the very least, you want to get in to see an ophthalmologist but ideally a neuro-ophthalmologist. My lids were also swollen, and obviously I had protrusion, but they were also extremely red and glazed. My eyeballs actually swelled out the sides in addition to the protrusion. Steroids helped immensely, but you should call and explain that you feel this is the onset of TED. I was able to get in that very same day by “freaking out the receptionist.” Hey, it worked…
in reply to: Graves and pre-op – what a mess! #1171748Zofran is my best friend now that I know it exists. I was given Zofran for norovirus a few months ago and it worked like magic without any side effects. Everyone in my family gets very nauseous and vomits from anesthesia, so I will definitely ask for this before my OD surgery. Thanks Shirley!
in reply to: Future weight gain? #1171597I gained 20lbs after RAI but it was more likely the very heavy round of prednisone for TED. RAI had the same effect that ATDs did, so there’s very little reason to suspect RAI had much of a role, if any, in my weight gain.
I also was on very strict exercise restrictions prior to and for a short while after RAI because of my heart rate. Being “lazy” for the first time in my life obviously caught up to me. I felt hopeless for a little while and wasn’t eating well because I thought, “What’s the point?” Now I know better and I’m eating healthy, doing yoga and exercising regularly, and the weight is slowly coming off. Sure, Graves and its effects slowed my metabolism down, but I don’t blame the treatment.
There are plenty of suggestions on here for weight gain and avoiding it. My endocrinologist gave me recommendations for carb intake (no more than 30g per meal) and told me to avoid alcohol. There are plenty of reasons but when carefully watching your weight, you have to decide which calories are more worth the satisfaction – sweets or alcohol. For me, sweets win every time.
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