[gatorgirly]

in reply to: Professional weight loss help #1174690

Thanks Gayle. I’m definitely open to lots of different diet (as in what I eat, not “dieting”) options, but I am very careful about eating processed foods, so I don’t want to eliminate any raw foods, especially fruits and vegetables. I plan to have my cholesterol and blood glucose levels checked soon, but last year, my glucose was good.

Increasing my exercise is really not an option. Well, OK, right now it is, as I’m still really weak and easily tired because I’m not even three weeks post-surgery. But normally, I bike about 10-15 miles every other day, and do strength training and yoga on opposite days. I walk around a college campus every day at work and take my dog for several long walks a day. I’m extremely active and spend most weekends kayaking, biking, hiking, etc. I don’t believe in paying for a gym membership when I can do just as much, if not more, for free at home or outside.

[gatorgirly]

in reply to: Quitting my job #1174701

Angela,

I’m so sorry it has come to this, but it sounds like you’ve made your decision and you will be at peace soon. I quit the job I was working at when I was diagnosed with Graves. We think that job had a lot to do with developing Graves (since I have no family history). My bosses were supportive for the first week but then they went right back to making fun of my tremors, brain fog, weight fluctuations, etc. I took a long weekend and decided I was quitting. I had saved up enough to live for three months without a job, but fortunately, I landed my dream job after six weeks. It made a world of a difference. I went from working at a PR agency to working PR in a hospital, and finally my medical issues were no big deal in comparison to my co-workers colorectal cancer and of course, our patients.

I firmly believe a healthy, supportive environment plays a huge role in how we handle medical problems, treatments, and subsequent recoveries. That environment is 24/7. So not only did I eliminate an unhealthy 9-5, but I broke up with my long-term but unfaithful boyfriend, I stopped associating with “friends” who cared about nothing but going out and getting blackout drunk, and I even took a little hiatus from my recently divorced parents, who focused more on trash-talking each other than worrying about their sick daughter who was 1,200 miles away and completely alone (I am on great terms with them three years later).

Women are awful to each other, especially at work. I left my dream job in February to move back to Massachusetts where I could be with family and friends again, and also getting my eye surgeries done. I am working a job (higher ed) that is not as bad as the agency, but creates immense stress. I did not hear from my co-workers once during my two-week recovery from OD. They don’t realize how big a deal TED or Graves are, and while I love working in healthcare for other reasons, most people don’t work in that industry unless they care about others.

I think you’re doing the right thing. I’m not sure what you do, but maybe you could find a freelance, part-time, consulting job? Or maybe you can find a healthy environment still doing what you love? I was extremely worried about developing double vision after OD, and knew my job was at-risk because of it (I don’t qualify for FMLA since I haven’t been there a year yet), but my health always comes first. I’ll need eyelid surgery in a few months and possibly one additional surgery, but now I can focus on finding a new job knowing that the worst of TED is behind me. I hope you’re there soon, too.

On a side note, while getting into an emotional, heated discussion with corporate may not be wise, I’d consider sending them a letter letting them know you liked your job (if you did) but that the company might retain good employees longer if management curbed the unprofessional acts and attitudes related to yours and others’ health, which is actually none of your co-workers’ business!

[gatorgirly]

in reply to: Professional weight loss help #1174687

Bobbi – I definitely plan to reduce, and try to eliminate, extra sugar from my diet. As in, no sweets, ice cream, candy, chocolate, etc. I don’t use any artificial sweeteners but I do put milk and pure vanilla into my coffee.

Shirley – I track all my calories in vs. calories out using two iPhone/computer friendly apps. I use MapMyFitness (also known as MapMyRun and MapMyRide) to track all my dog walks, runs, and bike rides. I don’t like the food part of the app, so I use MyFitnessPal for tracking everything I eat, and then I just import my exercise data over from MapMyFitness. It’s helpful to see how easily one can get off track. By the way, I am trying to stay under 1,200 calories a day. I will not change my wine intake. I only have two glasses a week usually, and I enjoy the taste and trying new kinds, so that’s one sacrifice I will not make…so I’m glad to hear your neighbor still lost all that weight without giving up wine. And thanks for the encouragement regarding my recovery. You’re right, the numbness is quite frustrating but I’m happy to take numbness over double vision.

Kimberly – I’m open to anything that doesn’t require pills or meetings, or have any cost involved. If you don’t mind, I’d appreciate the information on mindful eating. I’ve heard of it but never looked into it.

[gatorgirly]

in reply to: Migraines #1174649

See for me, propranolol is doing harm. It has caused my total cholesterol to double without any other lifestyle changes other than a cleaner diet and more regular exercise. My endo in FL was eager to get me off it for this reason.

My TED began with minor symptoms about four months after my Graves diagnosis. My eyes became rather dry (thus watering constantly) and slightly protruded, but not enough for anyone to notice but me, and even I only noticed it in photos – not when looking in the mirror. Twenty-two weeks after RAI, I finally went hypO but also developed sudden and moderate to severe TED. My eyeballs bulged out to the sides, my eyes were extremely red and irritated, and the pain was unbearable. Prior to that week, the minor TED had never bothered me in the 14 or so months I had it.

Interestingly enough, I have a very bad headache today. Not a migraine, but also not a minor headache. I took some prescription strength Tylenol and had a cup of coffee and lots of water but no relief yet. We are getting our first freeze overnight tonight but I don’t think there’s any correlation.

I would recommend finding an ophthalmologist trained in TED, usually a neuro-op. it sounds like you have some minor symptoms, which may never progress, but it’s good to have some baseline scans and good photos of your eyes and face to compare to every six months or so.

[gatorgirly]

in reply to: Migraines #1174647

Where in Florida are you? I was in Ft. Myers, where there is almost always some sort of system coming in from the Gulf. I knew a LOT of people who had migraines all the time.

I am also on propranolol and have heard it helps with the migraines. I’ll have to ask my cardiologist about it when we meet in a few weeks to switch beta blockers or start weaning me off it altogether.

I started the selenium while I was on prednisone for the sudden onset of moderate TED. The prednisone began working the very next day after I started it, reducing my swelling and completing erasing the pain. However, my eyes would continue to ache and were permanently protruded and very light sensitive, so I remained on the selenium even though I attributed most of the relief to the three months of a heavy prednisone dose. My Florida endo knew the Italian researchers who are credited with the selenium benefits for TED, so both he and my neuro-ophthalmologist fully supported me taking it. I took 100mcg a day and then began taking it every other day after four months, and continued that dose up until Sept. 25 when I had my OD.

Have you requested an MRI, CT scan, or visual field exam? I was told by two ophthalmologists that I did not have TED. My endo actually diagnosed me, and sent me to the only neuro-ophthalmologist in southwest Florida, thank goodness.

[gatorgirly]

in reply to: Migraines #1174645

Hi Gayle,

Sorry to hear about your migraines. I never thought to ask if there was any correlation, but I have only had three migraines in my life – all in the last year (I was diagnosed with Graves in February 2010 and had RAI one year later). I attributed all three to the combination of a low pressure system and stress. The first two were while I was living in Florida and both occurred during tropical depressions, which bring low pressure, known to cause severe headaches and migraines. I didn’t even know what they were at first but when a co-worker told me to go home and sleep in a dark, quiet room, I figured it out because that remedy worked. I was also trying to find a job in and move back to Massachusetts, so I was under a lot of stress. The third and most recent migraine was a few weeks ago as I was trying to get everything in order before my orbital decompression, and we also had a low pressure system hovering over us.

I never even thought to blame Graves since I have been on Synthroid during all three migraines, but since you are now on Armour and still aren’t finding relief from your migraines, I wonder if it’s something completed unrelated. We tend to blame Graves, our thyroids, or our meds a lot when often times our health woes have nothing to do with Graves.

By the way, I also preferred to eat my selenium at first. I loved Brazil nuts until I realized how much fat was in them. Good fats, yes, but I was desperately trying to lose my post-RAI weight at the time, so I switched to selenium supplements. Now that I am two weeks post-OD, I don’t need the selenium any more and I have two huge bottles of them – one unopened!

I hope you find an answer, as well as some relief, soon. Please update us if your physician provides any direction – I’d be interested in knowing if replacement hormone could be the cause.

[gatorgirly]

in reply to: Quick Orbital Decompression Post-Op Update #1174538

Just another short update: I began driving very short distances on Friday. At first, I felt very nervous because although I have peripheral vision, it hurts to look in any extreme direction, so I was turning my head away from the road in order to look in other directions. It was nerve-wracking to say the least. Night driving was easier because my eyes are still sensitive to bright lights. However, I drove myself 10 miles to my follow-up appointment this morning and then to work for the first time in two weeks. Half-days for now.

The follow-up was with the ENT surgeon. He looked way up both nostrils and said they are healing but that the left side has some scar tissue but nothing that should affect me. My vision is much stronger and it hurts less to look around, but my eyes still get tired and sore pretty easily.

I see both the ENT and oculofacial surgeons in six weeks, or sooner if I have any problems. I will see how half days at work goes this week and make a decision on Friday about next week. They are both pleased with my progress. Despite being in very rough shape for the first week, I have come a long way exactly two weeks out from surgery. My bruises are almost completely faded, and you can’t see them at all when I wear my glasses – I can’t wear contacts until next week.

The numbness is pretty bothersome but it’s only my right side and only my cheek – from just below my eye to my upper teeth and gums. This will probably persist for several months, which means drinking everything through a straw and eating in private, but I can feel my skin ever so slightly so both surgeons say that’s a good sign.

At the next appointment with the oculofacial surgeon, I imagine we will start making plans for my eyelid surgery. He has me massaging my lower lids up, but my upper lids are still noticeably retracted. He says some of this will be relieved as the swelling comes down, but we know I’ll need the surgery to at least remove the fat deposits between my eyes and eyebrows.

All in all, I am so pleased with the results and in particular, with my surgeons’ compassion, professionalism, and expertise. I have gotten so many compliments from people who knew me before TED and have been following my daily updates and photos on my blog, and the best birthday present on Sunday was my best friend telling me that I looked like I did when I was little. She just kept seeing the 12-year-old me instead of the 25-year-old me before Graves. I’m OK with that!

[gatorgirly]

in reply to: Quick Orbital Decompression Post-Op Update #1174537

Yes, I had general anesthesia. I agree wholeheartedly about giving myself permission to bow out earlier than 12:30 if I need to. My boss is really great and if I call on Wednesday and say, “I just can’t do it today,” there will be no guilt trip from her. My co-workers are less empathetic, but their opinions really don’t matter in this situation, so I’m not trying not to care, especially since I’m using almost all of my paid time off for the year (the fiscal year just began July 1, so I’ll have almost no time off to last me till June 30). In all honestly, this “break” from work has been a blessing in disguise – yes I needed it physically to recover from surgery, but I also mentally needed it. My job is emotionally exhausting and I don’t need a mental breakdown or an ulcer.

I’ve been very dizzy all day, not sure why, but if it subsides later or tomorrow I’m going to try some gentle yoga at home to start slowly getting my strength back.

[gatorgirly]

in reply to: Synthroid and Alcohol #1174566

I second Shirley’s comments. I like the occasional glass of wine, and have been on Synthroid for a year now, and have never noticed any difference in my ability to handle alcohol. I’ve always been a lightweight – more than two glasses of anything knocks me off my feet – and Synthroid hasn’t changed that at all. Then again, I take my Synthroid first thing in the morning, usually around 5 a.m. I think the earliest I’ve ever had a drink was maybe noon on a weekend and 6 p.m. on a weekday, so that’s a lot of time between taking my Synthroid and drinking, but as we know, Synthroid stays in the system and builds up, so it probably doesn’t matter what time we take it and what time we drink.

[gatorgirly]

in reply to: Quick Orbital Decompression Post-Op Update #1174534

Well I’m silly. My stitches didn’t need to be removed today because they are dissolvable! I noticed last night that the stitch in my right eyelid was completely gone (i.e. dissolved). The left one was almost dissolved so today, the medical assistant snipped the ends but left the suture so it wouldn’t bother me but could completely dissolve over the next day or so.

The rest of my appointment went well. My surgeon is so pleased with the outcome. Prior to surgery, my left eye was at 23mm and my right at 25mm. They are both even at 20mm now, and the symmetry almost pleases me more than the decompression itself.

I am cleared for driving, work, etc. I still cannot wear my contacts and I hate wearing my glasses and bright lights still bother me as my eyes heal, so I will limit my driving to only short trips (work is 10 mins away) for a couple of weeks. I will return to work on Tuesday (Monday is a holiday for us in academia) on a part-time basis. I will probably do half-days for a week or two until I have regained my strength, both overall and in my eyes, which tire easily.

I go back to see the surgeon in six weeks. Normally he books 2-3 months out from this point in the recovery process but admitted he is eager to see my progress sooner rather than later. I am to massage my lower lids up for several minutes a day as they are pretty stiff, and will almost certainly need eyelid surgery since my upper lids are somewhat retracted – enough for it to be necessary but not enough for it to bother me as far as exposure or sleeping. Fortunately, my eyes have always fully closed and still do.

He said the feeling in my face may not return for several months. Ugh, I thought he said a month or two. It is so uncomfortable as I keep burning and biting my upper lip, but that should get better as the swelling comes down and my upper lip isn’t so enormous (I usually have no lips!).

Otherwise, I am doing well. The pain has gotten a lot better and all I am taking for it now is some extra strength Tylenol and occasional ibuprofen (I have a history of ulcers so I’m limiting my NSAID use) for the inflammation. It has now been 10 days and I feel so much better every day.

[gatorgirly]

in reply to: neuro opthomalogist? #1174569

Everyone with Graves should see a neuro-ophthalmologist or at least an experienced ophthalmologist trained in TED to get established in case TED shows up at some point, since these specialists are usually booked months in advance and hard to get an appointment with.

I saw a neuro-op for a year during my TED, while it was active and then inactive, and then when I moved, there was no neuro-op around so I went directly to the oculofacial surgeon who would be performing my OD, and he did all the same testing that the neuro-op did. I think this is common in suburban areas where neuro-ops either don’t practice or are very hard to get in with. Someone else on this board, maybe Shirley, also mentioned seeing a surgeon for all the TED testing prior.

Your surgeon probably doesn’t do as much of this testing (visual field, MRI, CT, etc.) and wants you to see someone who does so he/she can have all the right information before proceeding with your OD. Don’t be concerned – it’s good that you’re seeing both specialists before this big surgery!

[gatorgirly]

in reply to: Quick Orbital Decompression Post-Op Update #1174532

My surgeon prefers to do both eyes at once to help maintain balance and not take too much from one orbit if both eyes are protruded about the same (mine were). Although this requires a good support system at home and potentially several weeks of vacation/sick time or short-term disability.

I was given Zofran pre-op, intra-op, and got a prescription for it due to the extreme nausea in the following days. I haven’t needed it since the weekend, but the Percocet does a number on me, regardless of whether I have eaten or not.

I notice the most tender spot is now where the big bruises under each eye are. Prior to yesterday, it was still quite numb there so the pain was limited to my eye muscles and nasal area. Now, it seems as the feeling returns, the pain comes with it. So I am trying to ice there more but it’s a tricky spot to get to.

I will post an update after my stitches are removed tomorrow.

Shirley – I am about to message you the link to my blog. The photos are nothing if you’ve had an OD or seen the recovery of one, but they are pretty gross (in my opinion).

[gatorgirly]

in reply to: Does RAI require you to be off from work?? #1174446

I had RAI on a Friday afternoon, and was given the OK to go back to work Monday morning, but to sit out of the morning staff meeting (we sat around a crowded conference table). By Tuesday, I was fine to resume normal activities. My dog came home from the sitter Monday night and we quickly resumed snuggling. That was a year-and-a-half ago, and he is fit as a fiddle.

I don’t know of anyone who was told to avoid their job for more than the usual 72 hours.

[gatorgirly]

in reply to: orbital decompression questions #1174378

I am having OD on Tuesday, and once I am able, I plan to update here regularly on my progress. I’ll answer your questions the way my surgeons have answered them for me, but everyone differs. Keep in mind I am having an oculofacial surgeon (the one who usually does ODs) as well as an ENT surgeon who will go up my nose to remove the bone between each eye and my nose, as well as possibly the bones beneath each eye. The oculofacial surgeon will enter from my non-exists crow’s feet to remove the bone from the outer side of each eye. My TED is only moderate on the ophthalmology scale, but because I had very narrow, deep-set eyes before TED, my surgery is considered major. Because of that…

1. The more bone they remove (some people only need a fat decompression), the higher chance of double vision, which I do not currently have nor have I ever had. My personal risk is 50/50, but the strabismus surgery is considered very minor and straightforward. The only drawback is that if I do develop double vision, I have to wait three months for my eyes to completely heal before I can have the strabismus surgery. I don’t know what you mean by looking worse, but OD isn’t a perfect fix for most. Most people need an additional surgery to lower their upper eyelids, which remain retracted after OD. I WILL need these, so I am either facing two or three surgeries.

2. The dryness should be mostly relieved because your eyes will close completely and not be so exposed when open, but if you rush into OD before your eyes are done changing and the TED is still active, the OD will be useless and you may need an additional one. That’s why most ophthalmologists/surgeons require us to wait at least one year after symptoms cease before operating.

3. The OD will not improve vision. If you need glasses or contacts now (I do), you will still need them afterward. They don’t operate on your eyeballs at all, just the bone and fat around your eyes. I was told I couldn’t wear contacts for three weeks after surgery. I hate how I look in glasses, but it’ll probably help cover up some of the bruising and swelling.

4. My insurance will process each surgery as a separate claim. I’d be happy to share, in very general terms, how they process the claims for the OD itself. Since I have two surgeons, I’m not sure how that works but my claims are usually online within a few days, so I will check late next week. My surgery is being done in the outpatient/day surgery department of the hospital, but even if I am admitted for complications, there is absolutely zero cost to me (I’ve already met my $2,000 deductible for the year… which started July 1!) because I have no co-pay or co-insurance for surgery, inpatient or outpatient.

What’s the current state of your TED? If you’d like, I can PM you my personal blog, where I am documenting my life – which obviously includes Graves and TED as well as all other goings-on.

[gatorgirly]

in reply to: RAI – my journey #1174288

I know I had go to back on PTU for a few weeks after my RAI. Since you’re allergic to both ATDs you’ve tried, did you endocrinologist tell you what would happen if you remain hyper for a while? The beta blockers can help the jitters and heart rate and whatnot, but the hunger is probably because you’re slightly hyper.

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