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in reply to: restricted jaw …. #1181678

Congrats on the orbital decompression. I had mine in September 2012 (eyelids in July 2013) and still have no feeling in the right cheek, including my upper lip, teeth, and gums, right nostril, and the space between my right eye and my mouth. I am told this is due to nerve damage and that it still could come back even though it’s been 14 months with no change. Is your jaw restriction due to nerve damage, or is it muscular or skeletal? Can you request a referral to an occupational therapist for jaw exercises or other possible treatments?

[gatorgirly]

in reply to: Graves Disease & Headaches #1181617

Hi Grace,

I’m someone who gets headaches rather frequently, even before Graves’. But a few weeks before I was diagnosed with moderate my TED, the headaches became more intense and felt like they were coming from behind my eyes. I guess it’s important to determine if these are headaches you have experienced before or if it could be due to some swelling going on in your orbit. A call to your endo is a good idea as is getting established with a neuro-ophthalmologist even if just for some baseline measurements. My headaches resolved with TED treatment.

I also developed a LOT of gastrointestinal problems during my Graves’ saga. I think it’s pretty common for stress and wacky hormone levels to manifest as headaches and GI upset, but it’s worth exploring all of these ailments. Aside from GERD (runs in the family), all of my GI issues have resolved since stabilizing my thyroid levels. If you don’t find relief soon, ask for a referral to a gastroenterologist.

[gatorgirly]

in reply to: Thyrotoxic Myopathy #1181513

I think I misspoke, or you misunderstood. Either way, it took three years for me to achieve euthyroid (normal thyroid levels). And yes, during those three years I mostly felt lousy all the time. I developed ulcers and severe GERD. I went through several months of gastroparesis (even though I was never a diabetic) and lactose intolerance – both resolved themselves but my team of specialists blame Graves’. I also was on prednisone for TED for so long that I gained a ton of weight, had the worst acne of my life, and now have stretch marks on my abdomen and a lingering “moon face.”

So yes, I felt like crap for three years. But as soon as my thyroid levels stabilized, I felt great and have felt great for more than a year now. I have been on the same dose of Synthroid (88mcg) for 6+ months.

To answer your questions…

(1) How “bad” were you? Did you need a wheelchair at the grocery store like I did? Were you basically laid up on the couch most of the time because your muscles were too exhausted to do anything else? No. As a former athlete, I took it pretty hard emotionally but I was able to walk and do gentle yoga. I was prohibited from doing anything else due to the tachycardia and I was easily winded and weak, but I maintained a relatively active lifestyle and social life.

(2) May I ask, which age range are you? I am 31. Hopefully since I am on the younger side, I could recover faster than someone in their fifties perhaps? I was 25 at diagnosis and am 29 now.

(3) How did this all affect your life? Were you able to work? I work part-time. I missed a week of work when I was first diagnosed, but only because I went into a thyroid storm and was hospitalized. I returned to working full time a week later. I work in PR, so full time means 50+ hours a week. I should’ve pulled back a bit but work kept me distracted from my health problems.

I agree with Jake – hyper and hypo hell are distance memories for me as well and it’s only been a year since I was there. Most days, I forget about Graves’. One day, you will too

[gatorgirly]

in reply to: Thyrotoxic Myopathy #1181508

Well I’m so sorry to hear that. I didn’t have anything that severe, and definitely was not diagnosed with thyrotoxic myopathy. I was on ATDs for a full year but could not achieve remission, so we opted for RAI. It was another six months before I finally went hypothyroid, and another 18 months before I finally became stable on Synthroid (I was constantly fluctuating between hyper and hypo for that period, on varying doses).

1. So I guess it was 18 months of constant hyperthyroidism.
2. Three years, but I was considered to be one of the most severely hyperthyroid and thus most complicated patients my endocrinologist had seen.

I DO feel 100% now. I feel best when my TSH is closer to hyper than hypo, so we try to keep it around 1.0-2.0 (my lab’s normal range is 0.28-4.10).

What is your doctor’s plan for the myopathy? It is just assumed that as you level out, this condition will be reversed?

I know personally I am not even close to the physical shape I was in before Graves’ and it is much, much harder to work out now than it used to be. I work out very hard every day (Insanity, P90X, etc.) and yet have almost no muscle to speak of. I am considering a T3/T4 combination if this doesn’t change in the next few months of a consistent exercise routine. As a former competitive cheerleader, the strength/endurance effects of Graves’ have been even more difficult than the physical ones (TED, predisone-related weight gain and acne) for me to accept.

Hope you are on the path to getting back to normal!

[gatorgirly]

in reply to: Thyrotoxic Myopathy #1181506

Hi Karen,

Were you diagnosed with this? I looked it up because I admittedly am not familiar with the term despite being quite sick when I was first diagnosed with Graves’. It appears to be an actual condition according to the National Institutes of Health (http://www.ninds.nih.gov/disorders/thyrotoxic_myopathy/thyrotoxic_myopathy.htm). What I experienced was called muscular atrophy, or muscle wasting. Basically the more you work out when you have uncontrolled hyperthyroidism, the more muscle you are burning as opposed to fat. I lost a ton of weight but lost all my muscle mass, tone and strength and became skinny but flabby. I only noticed an improvement after several months on ATDs. As the page above indicates, and as was true with muscular atrophy, treating/managing hyperthyroidism was the only way to reverse/improve the condition. Hopefully you will experience relief after selecting your treatment course.

Kelly

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in reply to: First symptoms of TED #1181356

Hi Diane,

The good thing about your appointment is that even if you don’t have any eye involvement, he can take photos and measurements so that if things start to change down the road, he will have a baseline to compare.

Mine started with significant pain/pressure and actual eyeball swelling and redness and extreme eyelid swelling. First I was told by an ophthalmologist that it was conjunctivitis, then allergies. Nothing he prescribed was working and I was in my endocrinologist’s office finding out I had finally gone hypo post-RAI and he was the one who said, “That’s definitely TED.” and got me in to see a neuro-ophthalmologist the very next day.

[gatorgirly]

in reply to: Orbital Decompression advice? #1181365

My bilateral two-wall and fat decompression was one year ago. I returned to work part-time (half days) after two weeks, and full-time after three weeks. I would not have wanted to give a presentation during that third week, however. I was still pretty bruised and swollen, and I was still very tired and not myself. I also did not have full range of eye motion yet – it hurt to look extreme right or extreme left, so I was turning my head to accommodate. I looked silly when I did this.

I did everything Shirley recommended in my recovery – pillows under my mattress, elevated the head of my bed frame with wood blocks, used ice packs designed for my eyes that the hospital gave me, used a neti-pot twice a day (mine was partially done endonasally so I had a lot of “junk” in my nose for a few weeks). Unlike Shirley, however, I was in a LOT of pain. I was miserable and cried a lot, but slept about 18 hours a day for the first two weeks. I don’t tolerate anesthesia well though, and was quite sick.

I blogged extensively about the surgery and recovery. Let me know if you want the link – just PM me.

Good luck! Everyone was amazed with the results from my OD and I’m sure you will have the same experience.

[gatorgirly]

in reply to: anyone had fat orbital decompression surgery? #1181400

I had both a fat and bony decompression. I think the information you received is wrong, unless the person was referring to a decompression that is performed while still in the active/hot phase of TED.

I woke up from surgery with immediate relief and noticeable results. My entire face was pretty swollen for about two weeks, which became unnoticeable after a month, but there was no orbital swelling as I had been in the cold phase for a year before the surgery.

I posted all about my OD on my blog, which include a daily photo update and before & after photos. PM me if you want the link.

[gatorgirly]

in reply to: Surgery while hyperthyroid #1181302

Thanks Kimberly! This is EXACTLY what I was looking for.

[gatorgirly]

in reply to: Flu Shots? #1181173

I have worked in healthcare for years, and always got my required shot until I was diagnosed with Graves’. My endo was not comfortable with my getting a flu shot while my levels were still fluctuating. Of course, my levels fluctuated for three years so that meant three years of no flu shot. I had to wear a mask whenever I went into patient areas for work, and did get the flu one year. Now that my levels have been stable, I got my flu shot last year and plan to get one every year from now on.

By the way, I’ve moved twice since my diagnosis. My first endo, who seemed to be the most involved and up-to-date on the latest research, was the only one who didn’t want me to get the flu shot. He admitted about 50% of endos recommend it, while the other 50% recommend against it. He said we just don’t know enough about how it affects patients with unstable thyroid levels. I can see that. But my new endo in MA and my new PCP in Boston (who’s a Harvard physician) both recommend I get my flu shot every year. Will do!

[gatorgirly]

in reply to: How long did you have symptoms before you got the diagnosis? #1180991

I had symptoms for a little more than six months. I actually convinced myself that I had a tapeworm because I kept losing weight despite eating ALL the time. I didn’t know anything about thyroids and I mistook a lot of the classic symptoms for hating my job and being in a newly long-distance relationship. When the tapeworm test came back negative, I gave up wondering and decided I loved losing weight. Except I was losing muscle and working out a lot. Finally, one Sunday, I worked out in the afternoon. I was so tired afterward that I laid down, but couldn’t relax. I never slept that night and went to my doctor the following morning because my heart was racing. I was in a thyroid storm with a resting BPM of 154, and left the doctor’s office in an ambulance and was taken to the cardiac ER (yes, they have those in Florida) where I was the only non 80-something-year-old man.

At the time, no one in my family had any known thyroid issues so it never even occurred to me. I was surprised and disappointed that my doctor didn’t check for thyroid problems when I told him all about my weird supposed tapeworm symptoms. I was working on a small island at the time and suppose that might have had something to do with his expertise. My dad has since been diagnosed with Graves’ but so far, we’re the only ones we know of.

They usually use your self-described symptoms as a way to determine how far back the disease goes, but other than damage to your heart (if there is any), there really is no way to tell. My weight should have been the red flag but like I said, my medical care was mediocre at best prior to diagnosis.

[gatorgirly]

in reply to: Eyelid surgery a breeze #1180189

Today is post-op day 6 and my eyes are feeling great. The bruising and swelling got worse around the 48-hour mark but has been improving since the weekend. I was able to throw an amazing bridal shower that went off without a hitch on Saturday. Hiding behind sunglasses and a hat, no one had any idea how bruised I was except the bride and her family.

I saw the surgeon this morning for my last appointment with him ever. As I’m moving to Boston this coming weekend, my insurance will no longer cover him. He was SO pleased with how my eyes look already. They are still very dark purple and swollen, but for the first time in more than two years, my eyelids are no longer retracted. I have been so overwhelmed with relief that I’ve been crying happy tears since my surgery – I finally look like my old self again.

The stitches are dissolvable and almost gone. The eyelids are almost perfectly even but the surgeon showed me massage techniques to bring the left lid down every so slightly to line up with the right. He gave me his cell phone number so I can text him photos of my eyes as they fully heal, and I am going to stop back in a few weeks to let him take official post-op photos once the swelling and bruising are gone.

I agreed be his poster child for thyroid eye disease treatment and repair. I wrote reviews on Google+, Yelp, HealthGrades, and his website since there seems to be so little out there about orbital decompression and eyelid repair. So much of what he and other oculofacial plastic surgeons do is cosmetic, and both of my surgeries were medically necessary, fully covered by insurance, but unheard of by almost all medical professionals I encountered along the way. As I’ve mentioned, I’ve also documented in text and photos my entire journey on my personal blog. I wish more people would, too!

Eventually, I will need a cosmetic procedure to remove all the excess fat that Graves’ deposited above between my eyes and eyebrows. And I’m quite sick of contact lenses, so I might consider LASIK down the road. But for now, I’m looking forward to have normal eyes with no more surgeries or appointments any time soon.

[gatorgirly]

in reply to: TED flare #1179925

I was scared that my TED was flaring up earlier this month (I’ve been in the cold phase since August 2011). My eyelids were swollen and red, and I felt pressure and minor pain. Eventually the headaches started. Turns out, it wasn’t TED at all but A. major stress (I was in the process of interviewing for and negotiating my salary for a new job in another city) and B. the beginning of a sinus infection, which is now pretty severe but I’ve been getting them ever since my OD was done endonasally last fall. This is something I’ll need to address in the near future but for right now, I’m prepping for my eyelid surgeries next week. I’m just relieved to know I’m not the only one who assumes any eye pain or swelling is TED-related. Antibiotics make a world of a difference when I get these sinus infections, as does plenty of rest and fluids.

Hope this is the last TED scare you have. We’ve been through enough!

[gatorgirly]

in reply to: Eyelid surgery scheduled #1180046

Funny you should mention that Kimberly. I emailed them earlier in the week and they sent me the info about the September meeting. Hopefully by then I’ll have a success story to share and show.

[gatorgirly]

in reply to: Eyelid surgery scheduled #1180042

Thanks Holly and Shirley. This is exactly what I was hoping to hear!

Shirley, I’m moving to Boston the weekend of July 12 and start the new job on July 15. Commuting from Springfield to Boston would take roughly three hours each way in rush hour…no thanks! Living in Boston has been my dream for a long time so the apartment search has begun

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