[gatorgirly]

in reply to: Insomia relief? #1061217

Hi Mike,

Just wanted to let you know I also was prescribed the purple pill. My insurance didn’t balk entirely, but my co-pay was $90 for a 30-day supply. So I decided not to fill it. Instead I buy generic omeprazole. My gastroenterologist says it should provide the exact same symptom relief as the purple pill. I’m not sure what your official diagnosis was, but mine was gastroparesis. I am on a really high dose (40mg twice a day), but my GI doctor did mention that taking 2-4 Tums between meals also could help… as long as those are taken more than 4 hours after taking Synthroid. I find that on crazy days at work when I forget the Tums between meals, I get bloated, gassy and my insides become quite vocal. So next time you pick up your generic (whether OTC or prescription), try some Tums, too!

I hope you find relief quickly from your GI issues. The symptoms can be scary when they mimic cardiac issues, and even when you know they are "just GI issues" it still ups your anxiety level, causing more problems in the end!

[gatorgirly]

in reply to: In a rush? #1169551

My first symptoms appeared about six months after RAI. It started out as what my regular ophthalmologist originally (and incorrectly) diagnosed as allergies or some sort of sinus infection – red, itchy, watery eyes with a lot of swelling of the skin around my eyes and the eyelids, but no protrusion. It really did look just like my best friend’s eyes when she had some crazy allergic reaction a few months ago. But about a week after my symptoms first appeared, my actual eyeballs began to swell and were no longer shaped like eyeballs – I know, hard to explain. The outer corners of both eyeballs were swelling out my eye sockets and that’s when we knew something was seriously wrong and I got in to see a neuro-ophthalmologist right away and we nipped it all in the bud with a high dose of prednisone – which I’m still on – and I’m symptom-free.

What I didn’t notice, however, was any change in my actual vision. Of course, because of the swelling and weird eye shape, I couldn’t wear my contacts, but I could see just fine with my glasses. Both the ophthalmologist and now neuro-ophthalmologist have checked my visual field several times in the past year because of the Graves, and fortunately there is no damage to my optic nerve and my prescription hasn’t even changed. Can you get an appointment to see a neuro-ophthalmologist? That way, if you do start developing symptoms, he or she will be familiar with your medical history and likely be willing to see you immediately should any issues arise. And of course, if you do get a new patient appointment, I’m sure they will run the gamut of tests to see where you’re at to make sure there are no TED symptoms but also to have something to compare to if you do start having any symptoms.

Did your endocrinologist put you on prednisone or other steroid before/during/after RAI? Many will as a precaution, as I’ve seen from this board. Mine did, but that didn’t seem to make a difference when the RAI finally took effect six months later.

What Kimberly mentioned is that not becoming severely hypO or hypER MAY reduce the likelihood of developing TED. I would request earlier bloodwork if you start feeling hypO before your next scheduled bloodwork. I know I started feeling hypo the exact same week all my severe TED symptoms began.

[gatorgirly]

in reply to: radiation treatment to eyes #1169370

Hi Barb,

I don’t have any insight (no pun intended) to offer on eye radiation, but I’m very interested in keeping up with your journey. I suddenly developed TED at the exact same time I went hypo, six months after RAI – before and during which I took prednisone to reduce the likelihood of developing TED. But, alas, thyroid antibodies have minds of their own.

My neuro-ophthamologist started me on a very high dose of prednisone – 50mg/day for 3 weeks, then 40mg/day for 3 weeks, and now I am down to 30mg/day for another 3 weeks and will continue tapering down and see him on Sept. 23. The prednisone started working instantly for me – the same day. He said if I reacted well to the prednisone, I would react well to radiation, but he was so impressed with my reaction to prednisone that we did not even discuss radiation at my last appointment. However, he did say the TED could come back in full force once I taper off the prednisone, which is when we would need to have the radiation conversation.

So what I was trying to say in not so many words, is that I hope you will keep us updated on the radiation. Good luck on Tuesday. Sorry I couldn’t be more helpful.

[gatorgirly]

in reply to: Graves eye disease sodium selenite #1061165

Would anyone be so kind as to help a math-impaired TED sufferer understand how many Brazil nuts I can/should eat each day? I bought a half pound today at Fresh Market for $5.50 and they were surprisingly tasty. I ate 5-6 nuts but have no idea how much selenium that is…

[gatorgirly]

in reply to: Have Graves disease not sure what to do… #1169489

Hi Lisa,

I was on PTU for just over a year before I had the RAI. I had no side effects from the PTU. In fact, I started to feel better right away because I was not nearly as severely hyper. Unfortunately, I was on a very high dose of PTU and still remained hyper – my thyroid had a mind of its own! But my endocrinologist made sure my liver function was checked every few months because of the possible risk, and Kimberly can confirm this but I believe the risk of liver damage is pretty much zero if you get through the first 90 days of PTU with no problems. I don’t know what other side effects you’ve heard about PTU. My endocrinologist warned me it could cause joint pain, but I never experienced that until AFTER the RAI, when I went back on the PTU for a short period of time until the RAI finally kicked in. And it was very minor, and I think it was possibly more attributable to slowly becoming hypo rather than the PTU.

It’s of course a personal decision, but I wanted you to know that there’s at least one person out there who did just fine on a high dose of PTU for 14 months, finally accepted remission was not in the cards for me and had RAI, and 22 weeks post-RAI I officially became hypo and am now on my way to being euthyroid (I’ve been on 100mcg Synthroid for 3 weeks).

[gatorgirly]

in reply to: Will eye problems (diplopia) continue to escalate? #1169510

Hi Maria,

When I first saw my neuro-ophthamologist, he reminded me that the TED issue is the muscles and tendons behind my eyes, thus to "take it easy" while they were severely inflamed. Lifting weights causes one to exert, and while we might not notice, we’re definitely straining our eye muscles – along with other muscles – when we strenuously exercise. Additionally, I’m on a really high dose of prednisone – which is doing a great job of controlling my symptoms but makes me feel more hyper than I did was I was undiagnosed (even though I’m newly hypo) – so exercise is not an option right now… other than long walks with my dog and running around from hospital to hospital for work. That being said, I’d be very interested in what you find out about eye exercises and exercise in general during active TED. I’m looking forward to gradually weaning off the prednisone and getting my pre-Graves body back. I’m only 26 and I feel 76!

By the way, congratulations on quitting smoking! It can only do you good on your Graves journey.

[gatorgirly]

in reply to: Silly Synthroid Question #1169500

Thanks Kimberly. I am one step ahead of you – I keep the Synthroid on my nightstand with a glass of water, and all my other pills are in the bathroom. Unfortunately that didn’t help this morning! I was just raring to go this morning, apparently.

[gatorgirly]

in reply to: 22 Weeks Post-RAI, Finally Hypo and TED Onset #1061112

Manatee, I guess I’ll find out tomorrow if prednisone is an option. I tolerated it well last time, depending on how you define "well tolerated." I gained about 3lbs both water weight and because it made me ravenous. It made my heart race, but that was when I was severely hyper, and my heart rate has been so much lower since I’ve not been hyper, and even moreso now that I’m hypo. Thanks for the kind words!

Kimberly, too late. I was never given T4.

[gatorgirly]

in reply to: RAI 14 WEEKS AGO #1062026

Hi Suz,

I am 16 weeks post RAI today exactly, and also am still hyper. I don’t have the numbers in front of me, but I’m as frustrated as you are. I will NOT do the RAI again. I started having all sorts of other seemingly unrelated problems from the day I took the pill. I am 26 and the renowned thyroid surgeon in town highly recommends I do anything BUT surgery with all the risks to my voice, parathyroids, scarring (I get keloid scars), etc. However, there is a University of Florida (four hours north and I’m an alum) surgeon who has been doing da Vinci thyroidectomies for quite some time through the armpit. If I require additional treatment, I’m going to schedule a consultation with him regardless of what my insurance company (I work for the hospital here) will pay for.

My endo is repeating my labs every 4 weeks starting on Monday. If by the end of July I’m not hypo or euthyroid, I need to decide between surgery and another dose of RAI. Hopefully by then, you and I will both be closer to recovery. Feel free to send me a private message and we can exchange emails.

[gatorgirly]

in reply to: Thyroid Eye Disease #1061968

Hi leondat,

I’m not much of an expert on TED, but I wanted to let you know you are not the only one who seems to have one eye larger than the other. I always had small, squinty eyes and since developing Graves, my eyes are wide and I get compliments on how beautiful they are, but I’m very self-conscious about it. My right eye is slightly larger and I notice it in photos and almost try to squint that eye when I know photos are being taken, but it never seems to work. I’m a 26-year-old female in otherwise (minus the Graves) good health so having one googly eye really stands out.

I’ve had Graves for over a year. I did RAI in February of this year but am still very hyper and am now considering surgery. Until my Graves is under control, I know eye surgery is not an option. Fortunately I have a good neuro-ophthalmologist who is well-versed in TED and Graves, so he is monitoring to make sure my optic nerve is not compromised.

While the cosmetic issues may be the most embarrassing for you right now, going blind or having double vision would be much worse, so please make sure you see a neuro-ophthalmologist or at least a very good ophthalmologist.

Your neuro-ophthalmologist or endocrinologist might prescribe Prednisone. It’s a steroid that helps with inflammation. I was put on a huge dose before, during and after RAI since there is a suspicion that RAI can make TED worse, so maybe the Prednisone helped by preventing any worsening symptoms during the RAI, but Prednisone is a powerful drug. It made me feel 1000% more hyper (racing heart, etc.) and made me ravenous and gain a bunch of weight, but it was better than having my eyes completely bulge out of my head.

Wishing you the best!

[gatorgirly]

in reply to: Need advice please! scary doc call :( #1061731

Erica,

I second Kimberly’s suggestion to go to the ER if your heart continues to race. My endocrinologist always tells me to go straight to the ER if it is ever over 120 resting for more than a minute or two. It did happen once, so I immediately called as I gathered my belongings to head to the ER, but taking a unscheduled extra dose of beta blockers helped within a few minutes. Unfortunately, since you can’t get a prescription for beta blockers, I would recommend going to the ER if it gets the point when you’re uncomfortable. If you have an Android phone or iPhone, there is a heart rate app that measures your heart rate in a fingertip through the camera. It’s incredibly accurate, and free. Sometimes it feels like my heart is racing or beating too hard, but when I check it, it’s really not that high, usually around 80-85.

Also, you really want to stay away from wine for several reasons. 1. Like Bobbi mentioned, it can seriously damage your liver when you’re on PTU. 2. While you have active Graves, I really don’t think alcohol helps. I stay away from anything that could potentially make things worse (greasy/fatty foods, high sodium foods, alcohol, and of course illicit drugs – not that I use those even when I’m healthy). And 3. Alcohol, wine especially, can increase your heart rate. Even one glass of wine made me feel like my heart was going to beat out of my chest when my Graves was at its worst.

[gatorgirly]

in reply to: RAI scheduled May 18 – Should I? #1061843

Ski, you mention that with surgery, thyroid removal is a sure thing whereas with RAI, one must "guess." Is that accurate?

I had RAI back on Feb. 18 and discontinued PTU one month afterward. I have had labs every four weeks since the RAI, none of which show me being hypo but normal for the first time ever since diagnosis (with no ATDs, yay!). I also had an ultrasound on April 12 because I have been having problems swallowing. The ultrasound showed a significant decrease in the size of my thyroid compared to the ultrasound I had when I was diagnosed.

So I guess my question is, where is the guessing in this situation? Doesn’t everyone post RAI receive regular bloodwork to determine exactly where the thyroid levels fall? I realize that with surgery, one becomes hypo immediately but I don’t feel like my physician has ever guessed other than saying, "You probably will be hypo within 6-8 weeks, but we will use labs to confirm that." Between the labs and the ultrasound, aren’t those sure things?

Cathy – my endocrinologist also left me with very little information about the details of the RAI. I learned a lot beforehand by reading people’s experiences on this board. However, I was so relieved that the radiologist tech and the radiologist spent a LOT of time with me discussing pros, cons and what precautions I would need to take. Granted, this was all 20 minutes before I was scheduled to take the pill but they made sure I was very clear on what it would and could do, and that I was 100% sure I wanted to go through with it. I think because endocrinologists are not radiologists, they are less knowledgeable on the details of RAI other than what their patients report back to them afterward. Please make sure you ask the radiologist any questions you have not found the answers to, even if it is as you are about to swallow the pill. And good luck – trust me, you’ll feel so much better soon!

[gatorgirly]

in reply to: Question about post RAI #1062353

I will let you know how my levels turn out when I get the results of my bloodwork, probably Friday or Monday. But yes, doctor thinks my levels were within normal ranges because I was still on PTU. However, before the RAI, even on very high doses of PTU, my levels were always still in "hyper range." I’ve posted here before that my endo has told me I’m the most severe case of Graves he has ever seen. So that’s fun!

I wish you the best with the weight loss. I’m also struggling with the weight gain and how to lose it. I’m forbidden to exercise or drink coffee or do anything that would otherwise increase my heart rate (resting it hovers just below 100), so I’m trying not to beat myself up about the weight gain until I can get back to the gym and back to my normal routine of working out every morning before work.

[gatorgirly]

in reply to: Question about post RAI #1062349

Smj, I also am having horrible headaches (5 weeks post RAI with labs in normal ranges last week, stopped PTU today, labs to be repeated again next week), along with a few other hypo symptoms. But the headaches are unbearable. Some days I have one when I wake up, and nothing helps – caffeine, food, more sleep, Advil… I’ve tried it all. I hope they go away once I’m on the hormone replacement and find a level that works for me. Headaches must be the most frustrating thing. They aren’t debilitating like migraines, but I feel miserable and just want to be in my bed, not writing articles at work. Hope you find some relief soon!

[gatorgirly]

in reply to: Post RAI Side Effects #1062442

Susan,

Are you sucking on hard candies? I pretty much always had either a sugar-free Werther’s, Jolly Rancher or Lifesaver in my mouth for a week after the RAI. The sore throat kicked in about 36 hours after I swallowed the pill, so I had cough drops occasionally instead of hard candy. I also found ibuprofen and Chloraseptic spray helpful with the sore throat. I slept a LOT that weekend. A. because I couldn’t go anywhere and B. because I had a lot of sleep to catch up on. For me, the fatigue has gotten much worse in the month (one month exactly yesterday) since RAI but I think that’s because I am now almost certainly hypo. I had labs yesterday and see the endo Wednesday, so hopefully he will confirm what I’m feeling. Try to rest as much as possible. I have had a lot of trouble falling asleep and staying asleep at night, when before the RAI I slept like a baby. I think the body can only tolerate so many changes, and right now it’s fighting sleep all day so when I come home and try to go to sleep, it continues to fight sleep. I’m confident it will get better, but definitely give in to the fatigue and sleep when you’re tired, get up when you’re not.

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