This will be a long post. I just thought it was finally time to share my experience. So here's my long story up till now. Hope it helps someone out there.My History of Graves Disease
I had no idea what to do with myself after graduating college with a film degree. I did what film majors are supposed to do and went to LA, leaving my Kansas home behind. I quickly found I couldn’t stomach the idea of struggling in endlessly sprawling LA for long, so I became a security guard at a rich hippie health spa called Esalen. There I met a German couple Hartmut and Dina who said they would put me up in Germany if I made a movie for them. Fast forward a year to 2004 and I was in Germany in a small small village living in a barn that was also a Yoga Studio/Colonic Clinic/Blood Lab/Nutrition Diagnostic Company.
I was struggling on the promotional video project for my rich hippy benefactors. My German was not so great and I had little support, not to mention my own motivation was lacking. I didn’t understand how to explain what the Nahrungsmittelunverträglichkeitblutprobe video was trying to say in English let alone in German. I was stressing out.
I continued to fail at making progress on the video and stress about being in a foreign land where my social inadequacies made finding necessary human contact difficult. I was supposed to be living my euro dream of reconnecting with my German roots, and living some grass is greener superior life than what I lived in America. Instead I was being solitary and stressing out about failing at my first real project out of school. (I never finished the project, in fact the company got shut down by the government for making false claims, but that’s another story…)
I was getting thin. I didn’t notice at first. I was always thin. But I was really really thin, and even with a hearty german diet, nothing was increasing my weight. I’m 5 foot 10 inches tall and my weight was in the low 120s. I’m normally in the 140s. I looked rather gaunt.
Since I lived in a country with cheap health care, I finally overcame my fear of going to the doctor and told him about my weight loss. He did a blood test and it came out I was hyperthyroid.
Finally, I had a medical reason to explain why i was such a nervous wreck most of the time. My racing mind, my fidgeting hands, my feeling cold all the time, and my ability to eat and eat whatever I wanted and never gain weight (well that wasn’t so bad actually).
So what to do about it? in America they usually treat hyperthyroidism with radiation therapy to quickly kill your thyroid dead in its tracks. In Europe they usually try to see if they can give you medication to slow down your thyroid and wait and see if your body will get better over time. I was in Europe so I did the european route. I didn’t like the idea of losing my thyroid and went on with the hope that things would heal themselves over time.
As those who have tried to treat thyroid issues with medication may know, it can take awhile to find the right dosage. I went through a period of constantly changing my dose till my t4 and TSH levels finally got within the proper range. After a time my medication level stabilized and things seemed to be doing well, so my german endocrinologist thought perhaps it was fine for me to go off medication all together. So I did, and was okay for a while but I relapsed again 6 months later.My Hyperthyroid Medicine Rollercoaster:
10/2004 Started with 10 mg Methimazole a day
4/2005 Went to 5 mg
5/2005 Went off medication
12/2005 - Relapsed and started 5mg pills again
5/2008 Went to 7.5 mg
10/ 2008 Went to 5 mg 3 times a day
11/2008 Went to 10mg 2 twice a day
12/11/08 up to 30mg a day
12/18/08 back to 20mg. Started getting skin rashes.
1/30/09 Switch medication to 50 mg PTU twice a day in hopes it will give me less skin rash
2/19/09 Reduces PTU 25 mg twice a day
4/28/09 PTU 75 mg a day
7/9/09 Had Throidectomy Start 100mcg Synthroid
8/3/09 88 mcg
8/27/09 Synthroid 112mcg
10/3/09 - Started 138 MCG Synthroid
12/01/09 moved me up to 150 mcg
2/25/10 Increased dose to 175mcg
7/25/13 137 mcg
After being diagnosed with hyper-thyroidism, I went back to my normal weight, and was okay with the thought of taking the thyroid slowing medication for the rest of my life. The only real life style changes I took on was to eat less iodine from sources like kelp and soy sauce. In some ways i could feel my bodies metabolism ramp up and down during this hyper period. I could feel when i was sped up a bit too much or if everything was just feeling normal.
I took the medication from 2004 till 2009, getting my blood levels checked about every 6 months. I moved back to America. My american doctor kept trying to convince me to get my thyroid radiated to finally stop the problem of varying thyroid levels, as opposed to the european style of using medication to slow down the thyroid. I refused to follow the doctor’s advice, but she got upset as her brother had the same problem and she felt he was better off after just destroying the thyroid and having a more stable thyroid replacement drug amount. I refused and kept following the european style.THYROID EYE DISEASE
I wish I could tell you that was that and all my problems were over.
But around 2008 I was going through the stress of not really enjoying my desk job and disliking myself for how poorly i performed at a job that didn’t really care what I did. Basically, I just sat in a chair everyday and wasted time. I felt like a waste of human potential at the end of day after day of not really feeling much of anything. Even when I didn’t have much work to do I stressed about it, and it got to a point where I couldn’t look myself in the mirror. I mean that literally, I actually couldn’t look myself in the eye in the mirror. It was physically not possible.
I’m very good at ignoring my body and what is happening to me. I’m usually up in my head being unobservant to the physical world. I was transforming, slowly deforming, and didn’t even really notice. This is not a metaphor. The muscles in my eyes were starting to inflame and tighten. Slowly my eyes started to bulge out and their movement became restricted. This happened over weeks, perhaps months. So then one day I could no longer look forward with my head straight. It all happened so gradually i didn’t notice it. Until I looked like a completely different version of myself. I literally couldn’t look straight ahead anymore.
They say eyes are the window to the soul. So it’s a bit traumatic to have your eyes become ugly, constricted and strange. You look like a different, somewhat more monstrous version of yourself. I became a bit Igor-ified, like Frankenstein’s assistant from Mel Brooks’ Young Frankenstein.
For some reason I never read much about Grave’s Disease when I was diagnosed with Hyper-thyroidism. It caught me by surprise that the same autoimmune problem that tells your body to attack your thyroid, could one day in rare cases also start attacking the muscles behind your eyes. This is called Thyroid Eye Disease (TED) and it was a comfort for me to read about other peoples experiences with it, that’s why I’m writing this now finally. I’m here to tell you it can get better.
Let’s not mince words, Grave Disease sucks. When your thyroid is attacked you feel nervous and crazy, and then if your eyes get attacked they will start bulging out, and I’m sorry to say in a lot of cases they won’t naturally go back. Graves Disease = you feel crazy, and now you also look like a freak. If you’re unlucky like me at least.
Besides my face’s esthetic downgrade, there was also visual problems to deal with. With my eye muscles compressed, my ability to look in all directions with both eyes became more limited. To look forward without double vision I had to tilt my head and chin up severely. So to look someone in the eye my head would be awkwardly tilted back, while my eyes looked down a bit. Also my peripheral vision became reduced. The visual frame that I could see without double vision was shrunk. I could move my head around like an owl and see in one direction, but my ability to glance with my eyes in different directions diminished. My eyes would go into diplopia (or double vision) when I looked far up, down, left, or right. Especially up and to the right.
Luckily I could still mostly function and drive just fine, moving my neck around to see like an owl. And my ability to read and see most things wasn’t much affected.
Though with my eye’s more protruded, I needed to apply moisture drops consistently or my eyes would get a bit dry. Another change that Thyroid Eye Disease brings about it an increased sensitivity to light. Walking around in bright sunlight can be quite intense, things have a blown out brightness to them.
When my eyes were actively being inflamed they would tear up. Some nights my eyes would slowly tear all night, which made sleeping difficult. With grave’s eye disease It’s advised one sleeps with their head tilted up. As someone who is not a back sleeper, but someone who sleeps on their sides, I put my spine in a bit of an odd bend sleeping with lots of pillows to prop up my head and torso. Though I did not get any long term back pains because of this.
Like I have said, it took me awhile to realize I looked different. One day my mother advised me to wear sunglasses more often. That for some reason was the turning point where I realized I would have to do something about this, being oblivious to the issue was no longer an option. While I never really noticed people treating me different because of my appearance, I did start to wear sunglasses as much as possible. I never wore sunglasses before this. Now I was wearing them all the time and indoors.
Luckily, I had a girlfriend throughout this TED period, and she stayed by and supported me through this ordeal, i think it would have hit me harder if I was alone, and feeling like I look like some freak.
Once in a bar a guy looked at me and said sarcastically “Nice eyes.” It was upsetting, but I never got angry about it (though my girlfriend did). That’s just my nature. My entire life i’ve never looked like a freak, so in some ways experiencing TED made me more compassionate to those who don’t appear within the definition of ordinary. We can’t know the reason people look the way they do, and more often then not it’s probably not their fault. I looked strange with large bulged out unblinking eyes with my head titled back, a permanently surprised look on my face. While it might have looked like this was something I was doing to be strange, I really couldn’t help it. Probably a lot of people we categorize as “strange looking” also probably can’t help it.
I spent a good 7 months in this bulged out state before i could really start to think about treatment. I was in the Kansas City area when this happened, and thankfully I had a job which gave me health insurance. Without health insurance I would have had to go on looking like a freak the rest of my life. Luckily I had an endocrinologist at the University of Kansas Medical Center. He referred me to an Ophthalmologist within the KU Med School. They put me on a course of steroid to counteract the inflammation behind my eyes. Steroids are not a mild treatment, they really mess with your body’s systems. My face got fat while taking steroids, and I felt a bit strange in my body. When taking steroids you have to really pay attention to your dose and how it will change over time. It’s not recommended to just stop taking steroids, one needs to taper off usage over time.
As TED is seen as something with active and inactive stages. Doctors want to wait until you are inactive before they will do invasive surgeries to treat TED. The step for me was to stabilize my thyroid levels, which meant finally relenting and getting rid of my thyroid.
The options for treatment are radiation therapy, or surgical removal. Generally radiation treatment is the common treatment, but there is some belief that the radiation therapy can negatively affect the eyes. So my doctors agreed the less common surgical route would be better. Luckily Kansas University Medical system had a very good thyroid surgeon, who was very experienced at removing thyroids for cancer related reasons. I should know, as my mother had thyroid cancer and successfully got her thyroid removed by the same Doctor.
The thyroid removal wasn’t too painful. My throat was a little weak for a couple weeks, and I was told to avoid lots of physical activity and driving as it might make me move my neck around too much. So I contentedly recovered by being anti-social and playing video games, two things i can always enjoy.
After my thyroid was removed they waited to make sure my thyroid replacement medicine Synthroid was stabilized which took a few adjustments. Once that was ready my eyes could be treated.
After a course of stabilizing steroids for a couple months, then the thyroid surgery, they thought the TED was no longer active and it would be ready for me to go ahead and consider eye treatments.
Generally there are three different operations one may do after getting bulged eyes from TED:
1 - Orbital Decompression Surgery - where they clear out space behind your eyeballs so your eyeballs can recede back further into their sockets. This is definitely the most invasive. And the most important to returning your eyes to the way they were.
2 - Eye Muscle surgery - to align the eye muscles so they do not go into double vision, especially when looking forward. This is often a necessary adjustment after the eye’s reset in their new larger sockets.
3. Eye Lid Surgery - usually your lids will be wide open, which is bad for drying the eyes out and leaving them less protected. You also have a permanently startled look on your face. This final surgery drops you lids back down.
These are all important and difficult surgeries. Therefore it’s important to find someone who has a lot of expertise working with TED, you need to quiz your doctor and find out how many of these procedures they have done. If they do not have much experience or won’t give you a straightforward response, look elsewhere for someone who will.
In the Kansas City area my ophthalmologist recommended I go to a local eye plastic surgeon. He was pretty much presented to me as the only option in town, in terms of someone who would deal with this type of operation. I went to his small office one day, and asked how many of these cases he did, and he got a bit defensive about my line of questioning. He said he would have to do one eye at a time (basically taking twice the amount of time as doing both eyes at once) and he seemed more focused on usual eye plastic surgery jobs then the more invasive surgery that TED can need.
I didn’t have the best feeling about using this doctor, but as I’m usually someone who follows the path of least resistance, I was probably just going to go along with it, as that’s what my local specialists were telling me to do.
Luckily my mom said one day, why don’t we just go to the Mayo Clinic. I had never even thought that was possible, I wasn’t really able to think outside the box in terms of traveling somewhere for my health. While being a good 7 hour drive to Rochester Minnesota from Kansas, going to the Mayo Clinic made a lot of sense. They had expertise with treating TED, also they are on the forefront of researching this issue.
So after getting a referral from my KU specialists, I made many long drives up to Minnesota from Kansas over a cold winter to get my work done. Luckily I had the support and company of my mother and girlfriend for some of the surgery trips. One of the surgery trips I did on my own. All in all I drove to the mayo clinic 4 times.
1st for Doing the Orbital Decompression Surgery on Sept 23 2009.
2nd for doing the Eye Muscle surgery on December 7th 2009.
3rd for doing the Eye Lid Surgery on January 19th 2010
and 4th for a final checkup on March 4th 2010.
Each time I got to indulge in the hearty cuisine of Minnesota, enjoying scandinavian pancakes and fried cod. (I also got to visit the nearby Spam museum, which is worth a stop, even if you hate the thought of Spam like me.)
Was I scared? Yes I was scared.
The first surgery was easily the most difficult both in terms of complexity and recovery.
The only way to make more space behind the eye is by removing bone and muscle tissue behind the eye. There are different ways to get behind the eye, but the Mayo clinic has developed a method that goes through the sinuses, so it’s a joint operation with an eye surgeon and a sinus surgeon working in tandem. To get to the sinus they go through your mouth to drill a small hole through the bone in your face about an each below the center of each eye. Then they go through the sinus to reach behind the eye and clear out and extract bone and muscle mass behind the eye socket.
Luckily I was asleep for all this, and the thought of having holes drilled in my face/ cheeks wasn’t something I wanted to be aware of. When I work up, I had a puffy face and a nose full of gauze. It felt a bit like I had gotten punched in the face a few times while I was asleep and was now waking up. I won’t pretend it’s pleasant, but the post pain was not terrible. The wholes they made in my face were tender to the touch, and still are tender to the touch all these years later, though I only notice it when i directly tap that part of my face, there's no scars.
The least pleasant part was having them remove the gauze shoved deep into my sinuses. It was like a clown pulling out an endless ribbon, but here they kept pulling and pulling out bloody gauze.
For awhile I had to go easy on my eyes because they were sorta reset in their new orbits, and needed time to adjust. The space that was created behind my eyes put them a bit more out of alignment, so my double vision was increased. This was the time of wearing an eye patch. As I enjoy a medically necessitated affectation, I sorta didn’t mind going pirate for a few weeks. Previously I enjoyed having an old man’s cane after breaking my leg.
Luckily my double vision wasn’t super extreme, but it was also not as comfortable to look forward now. Though I ddin't tilt my head backwards anymore.
Before my surgery my eye bulge measurements were 26 left and 25 right. After my surgery they were measure 22 right and 21 left. This might not sound like a lot, but it made a world of difference to me.
My eyes were different, definitely more sunken. But i also looked just very slightly different then I looked like before TED. It was a definite instant improvement, but I still wasn’t sure how I would end up looking.
Lets call my original face before TED - Face A. My Face After TED is Face B. And while for the most part one hopes to go back to Face A, there is a slight difference. So I’d say my new Face was Face A2. Definitely much better than bulgy face B, but not exactly like I looked like before, but make no mistake, I was completely recognizable, and people never noticed or mentioned a difference. There’s just a slight difference to my eyes, so to speak.
Luckily I had enough sick time at my job to lay low for a couple weeks while my face bruising and eye got back to normal. Over this time I listened to a lot of podcasts and audio books. As my eyes were slightly out of alignment in most directions, I would often automatically close one eye to primarily use one.
I didn’t want to have double vision forever, so it was time to get my eye muscles aligned with the second surgery. Another long cold drive up to Minnesota, a check up on my recovery from the first surgery and then right onto the eye muscles surgery, which was a much simpler surgery then the first one, but still scary to have cuts near your eye balls. I was knocked out thankfully.
I want to take a moment to say how great the Mayo Clinic is. This is the ideal version of american health care. People from around the world come here for a reason. You get the sense that these people know what they are doing, are committed to research and good care over trying to make the most money. Their doctors are all on salary, and do not get paid per procedure, which is the terrible system that most doctors is this country use, which results in overprescription of expensive unnecessary treatments. Also with health insurance the Mayo Clinic charges and fees seemed identical to what I would have paid had I done the operations at the local University Medical Center in Kansas.
Taking the extra time to go to the Mayo Clinic was definitely worth it, and I don’t feel it costs me anymore that the gas to get there and back.
After my second surgery I cried blood like a James Bond villain for a short amount of time. My eyes were all red and itchy, from the stitches in my eyes. It took awhile to know if they were better than before, I had to wait for the muscles to heal. I speant some time in the hotel tearing away and wiping squwigglies out of my eyes. I tried to hold my eyes in the right position, while i healed, no idea if this had any effect or not, I doubt it. After this surgery my eyes were a bit clouded by a scar within the eyeball. There's still a light grey spot in one of my eyes, but it's not very noticeable.
Most of my life I’ve had close to 20/20 vision. I never wore glasses or contacts. At this time I noticed I had a bit of a astigmatism after the second surgery. I basically saw a faint, ghosted double image when reading high contrast Text at a distance. This is especially noticeable when reading road signs at night. Directly under a written road sign word I would see a faint 50% transparent double ghost image of the text directly under the text. It's never been so bad as to make it too hard to read, but when I do the eye test at the doctor trying to read “F C L 3 D 6” it's much more difficult. I bought very weak prescription glasses that I only use sometimes when driving at night. Besides that I never wear glasses. I dont see things as clearly at a distance, like the moon and the stars, but I'm thankful my vision is as good as it is.
The final surgery to get my eye lids to drop was the easiest and had the quickest recovery time. I was even awake for the operation. It's not pleasant, as even with local anesthetic you still may feel so pricks as they loosen the lid muscles. Afterwards my eye lids were a bit puffy, but that passed after awhile. A couple weeks after this surgery I looked much better.
Sometimes my eye lids would shoot back up when I pose in photos. Sometimes I consciously try to squint a bit when taking photos, but for the most part, I think my eye's don't seem that weird to others. I still can't make sly glances with my eyes, as I mostly have to move my head around like an owl still. I still go into double vision when I look far in any direction. But straight ahead works find, and that's what's truly importantLooking Back
All in all I had 4 surgeries in 6 months. Which is a lot, but it also was a long time. After being confined to having to focus on all these health procedures and recovery times, I just wanted to go off and be free.
Stress might have caused part of my illness, now I knew that I couldn’t allow stress too deeply into my life. Nevertheless I was ready for a new adventure after healing from my long ordeal.
For the most part things have been great, and I'm glad I got my thyroid removed, and I'm very much glad I went through all the eye surgeries. People are very surprised when I tell them I've had three eye surgeries. You wouldn't think it from looking at me. I take synthroid everyday, and my levels don't fluctuate as much. I get my levels checked about once a year.Relapse Fear
After all the operations, I still feared my eyes would bulge again someday, if I got stressed again. This seemed to actually take place this last winter around Dec. 31st 2014. I was coming down from a cold and perhaps over dosed on immune boosters. I took two emergen-C's. I took lots of immune booster supplements someone gave me. And I took some mushroom based immune boosting supplement someone gave me. Not to mention this is all aftersome poor sleep from night cold medicine. I was also a bit stressed about failing at not telling someone my true feelings, and feeling like my chance was lost.
Over a couple nights I noticed my eyes tearing like they did when my TED was in an active phase. After the second night of this, I woke up and it seemed to me like there was a pressure in my right eye, and perhaps it was even bulged a bit more than usual. I felt like my eye symptoms were back, and realized “Oh Crap”, I can't go through this again. I really did feel pressure in my right eye, and it seemed like the frame of diploplia (double vision) was getting smaller. I I also felt much more sensitive to bright light again.
As it was new years, there weren't many doctors available, I went to a cheap in and out clinic, and asked if I could get Prednisone steroids, to stop my inflammation from increasing. The crappy, general doctor didn't know what to think and wouldn't give me anything, but did charge me full price.
But I was determined and tried another doctor in my health network, luckily a last minute slot opened up across town, and even on a holiday I was able to get a real doctor, who had an ophthalmologist in the network confirm my need, to prescribe me a short course of prednisone. It's hard to say whether or not the low 5-day dose of prednisone, or me taking time to de-stress and get better ended up helping the situation. But after one week of R & R, I felt the pressure in my right eye leave, and my double vision frame go back to what it was.
I checked in with the ophthalmologist and it seemed like everything was okay.
I hope I don't have a TED re-occurrence scare again. I'm hoping to find some way to get emergency Prednisone just in case it happens again sometime and I don't have easy access to a doctor.
It's hard to say whether my over-boosted immune system went wild and started to attack my eye's again, or I was just stressed again, or it was just regular inflammation from a cold, but ultimately I'm glad I played it safe and took action to get anti-inflammation treatment, as soon as I felt like TED symptoms were back.
Now a few weeks later, I feel like my regular self again, and feel like my eyes are as they were.
So in summation. I'm glad I got my thyroid removed. I'm glad I went through getting the eye operations. I'm glad to be alive.
I know know that I can't let myself get too stressed out as it does negatively affect my body in extreme ways sometimes.
To other Grave's Sufferers, take heart that you're not alone. Even Missy Elliot has Graves Disease, and she was just dancing around on the Superbowl. So get your Freak On and explore what treatments are available to you. It can get better.
My thin days before I got diagnosed as hyperthyroidYour text to link here…
My eye's before TEDYour text to link here…
My eye's after TEDYour text to link here…
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After Orbital Decompression SurgeryYour text to link here…
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After Eye Muscle SurgeryYour text to link here…
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After Lid Surgery - notice slight scaring in inner eyes.Your text to link here…
How I look todayYour text to link here…
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