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Fat Thigh-roid Woes: Quasi-healthy
As I write this, I’m coming out of one of the more major funks and rage episodes I’ve had in a long time.
I woke up this morning to inner chaos. I don’t know why, last night I went to bed and I felt just dandy. I got up, started my normal routine of popping my Armour and then looked in the mirror. This is who I saw staring back at me.
My Graves eye disease had hit a peak before the RAI, and after I had the RAI they calmed down a lot thanks to my dietary changes (I think). However, this morning, it just seemed like my right eye was bulging more than my left.
It’s enough that this disease, designed by evil, wreaks havoc on our bodies – but does it really need to change the way my eyes look as well?? What, the heart palps and explosive seatbelt diarrhea wasn’t ENOUGH??
I used to love my eyes. Bedroom eyes, and a great almond shape. Now, please see picture above for the current and forever state. It doesn’t help that the only option I’m hearing for help is “you could go get your eye taken out and the muscle behind scraped”. I used to wear eye makeup and contacts to highlight my best attribute, and now I hide behind glasses and don’t try to draw any attention to my altered physical appearance.
So, I did what anyone else would do in this situation. I took some flaxseed oil, and BAWLED my Quasi-healthy Quasimodo eyes out, before dragging laundry to my mom’s house and crying there too.
I wish I could write something more uplifting about this particular subject, but I’m having a hard time dealing. All I want to do is rant about it, and that makes me feel bad. The purpose I set out for this column was to help, not to dump my problems on top of all of you. But, something is compelling me to share everything with the DT community. It’s like, we’ve been out on a couple of dates, you treated me just right, and I’m ready to take it off…
Here it is: I know we all have our personal crazy lives that never meld with our medical disasters, but I feel like TOO much is being thrown on me at once right now. I’m stressing about medical bills from RAI and county hospital shit, and now being thrown on top of that – my appendix decided it wanted to leave my body cause even IT couldn’t deal with the pressure anymore. On top of THOSE bills and not having any insurance, or any means to pay – I have to try to find a job (apparently, I CAN’T stay on unemployment forever…) and I keep sending my resume out but I’m not hearing anything back. I’m single, and my stupid ass didn’t get a sugar daddy when I had my chance in my 20s so like, I have NOTHING. I’m not even hot enough to find a sugar daddy NOW thanks to becoming a lard-o on top of already being a psychopath with villainous eyes.
What else besides stress could be bulging my eyes out? Do I really need to give up gluten for life so I don’t deal with the up and down of the eye bulge? Because I have definitely noticed a connection, and I think my body is just gluten intolerant. I don’t get a rash or stomach pains, but my allergies in general get worse. I try to stay away from the good stuff, but DAMN it why does sourdough bread have to be so delicious???? Gluten free bread smells like body sweat to me, and I just can’t make a decent sandwich on it. I guess it’s back to quinoa, potatoes, and rice for all my carbs. BALLS.
I suppose I’m asking all of you for help this time around, because I need to hear some uplifting experiences. I figure our relationship should be somewhat symbiotic, and right now I need to latch onto the teet of the Dear Thyroid community to get some much needed nourishment.
What are your experiences with GED, and how have you been able to manage your symptoms even after treatment? Some of you might be years beyond RAI or surgery, and I wanna know if your eyes still act up, or have they gone down? Also, does ANYONE know of a supplement that has worked GED miracles?
I’m visiting my endo this week to gaze at his well sculpted pecs, and oh yeah, to get a blood test done. It’s been 3 months since I’ve started the Armour and I’m hoping for a bit of good news. I’ve laid it all out on the table, DT community, things are beyond chaotic right now and I’m trying to keep a lid on all the stress. If it wasn’t 100 degrees outside, I’d light my medical bills on fire and bust out the S’mores set. I also have less than 1 month to find a job, or I shall be crashing on your couch with my two cats…so get the blankets READY.
However, even with all this, if just one person out there has a positive and uplifting story about GED – it would be enough to make me happy, because it’s HOPE not only for me, but for all of us.
In addition to that, I want to know about your general health. Why is it we are to assume that once our thyroid is taken care of, we’ll be tip top? How do you keep yourselves healthy after treatment?
I wish I had a better story for everyone today, but I’ve been on the phone all week with numerous people wanting money that I do not have. Short of blowing them, I don’t know what I can do to not pay. I’m pretty sure a lot of you are in the same situation with medical bills, and maybe we can get together and have a bill torching party. I’ll supply the booze. Until then, I’m looking forward to hearing your great stories, and if you don’t have anything positive and uplifting – tell me anyways! Let’s rant together, maybe we can find a solution or mantra we can make up for all the bills, headaches, and bullshit we’re all dealing with to just go away.
Heart,
Nixy
Tags: (RAI) radioactive iodine treatment, Fat Thigh Roid Woes, graves eye disease, Graves eye disease impact on self-esteem, hyperthyroid dietary changes, medical bills, patient experiences of GED, quasi healthy
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31 Responses to “Fat Thigh-roid Woes: Quasi-healthy”
Leave a Reply to Nicole Wells
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You are a really good writer Nixy and if it was like twenty yrs ago I would plunk down money daily just to read a column or something you might write in my daily paper, but since its 2010 and nobody really writes newspaper columns or do they? Well if they do Nixy, I would send this in and tell em to hire ya cause you got my attention and my attention is short being I am a thyrolicious short attention type babe myself with one eye that is starting to bulge, but for a few min to today it was lookin at ya. 😉 and likin what it saw, err or read…Good luck on the job hunt, and let me know when the bill bonfire is, cause I have lots of kindlin.
Nicole,
I don’t have any good stories to tell, but you can come and sleep on my couch. We have a firepit in the backyard [for bill burning], and my son has all the stuff for smores.
While I don’t need to tell you that stress makes it worse, and once you are stressed the last thing you want is someone telling you to “calm down”.
Does your state any have state assisted health care programs? I am sure you have looked into that, just offering ideas. You could put advertisements on your blog. Sell stuff on ebay, or etsy…
Trying to say stuff that will help. Just know that I am reading and understanding. Wish I could really help.
Amanda
Nixalish;
FABULOUS COLUMN. Thanks for being brave and reaching out. GED/TED is vile; as I understand it, all thyroid eye diseases are pretty thytrocious.
I have Graves and GED. I feel so sexy, I don’t know where to throw myself. I have crazy ass swollen eyelids, extreme sensitivity to light and edema underneath my eyes – DON’T BE JEALOUS. I am one hot coffin-eye-disease diva.
What I do want you to know, my darling, though you are dealing with, as Melissa says, a sonic fuck ton of health shit, you aren’t alone. You will get through it. You won’t have to face it or endure it without support. You are adored so much, my sweet.
I am very sorry about all of the shite on your plate.
xo
Hi Mykar,
Thank you! Our collective experiences inspire me, and I do my best to try and convey that in my columns – this week was just so difficult. I will def let you know when the bonfire will be, and even if we can’t meet up let’s just do this via satellite hahaa…
Hey Amanda,
If you’re reading and getting anything from this column, you ARE being helpful to me in return.
State assisted healthcare…ahhh, I don’t seem to qualify for anything available out there. I’ve explored many avenues, but at this point my best bet is just to get a job that provides health insurance.
I went to the movies by myself this morning to escape from the stress, and it felt great to just throw everything aside and run into a theater for almost 3 hours. I suggest that for anyone in the same situation…just get away, turn off your phone, and ignore the pressure.
I hope you have a great weekend, and keep that S’mores set handy for whenever the weather cools down!
Hello Nixy,
I am so sorry you feel so rotten. All I can offer is….
…. {{{{Hugs}}}}
HD in Oregon
P.S.: I like that idea about the movies to get away from it all. I did that when I had cancer treatment – rented the movies – to forget. Worked for me!
Hey Katie,
Thanks lady! I know I’m not alone, and I love all the support we give each other on this site.
It doesn’t make me feel better to hear about your problems with GED…it only makes me want to punch GED in the face.
Maybe we can come up with a line of makeup specifically designed for GED sufferers?? Shit, maybe we can find a mascara that will make our eyes appear less buggy…fuckin’ GED can SUCK A DUCK.
xoxoxooxoxoxoxxo and thanks again for the support,
Nixy
Hi HD,
Thanks for the hugs!! I’m glad renting movies to escape worked for you – I might rent the whole comedy section at my local Blockbuster and go to town this weekend.
Comedy IS therapy, and I try to remind myself of that daily.
Heart,
Nixy
Nixy, you’re so right “Comedy” indeed it very therapy. (So, by the way, is writing things down [like Dear Thyroid letters], and shouting things out!) – I made sure that I didn’t get any heavy and sad movies when I went through my stint of chemo and radiation for throat and thyroid cancer. It kept my brain from having morbid thought, and it was entertaining too.
All the Best!
HD
Nicole,
Hey thyrella move to the UK the health care maybe shit but at least you’re not left with the stress of how your going to pay for the shite treatment.
I’ve had good success with my eye disease and I had it bad, light sensitivity lid retraction and lid lag left eye worse than right so I can sympathise with you on that one, Quasie had nothing on me only that hump my humps were at the front
When I was first Dx it was my eyes that gave it away not the numerous times i had been back and forth to my Dr’s it took an optician (Optometrist) to diagnose thyroid disease and eye disease and not my GP who had no choice with an accompanying letter same day to get my thyroid tested and an urgent referral to an opthamologist.
Too cut a long story short i did the flaxseed still use celluvisc eye solution for my eyes but not as often as every 2 hours in the height of TED.
There were few things I learned fro other TED suffers one just like you who had RAI and it had made her eyes 10 times worse.
she gave me some exercises her Ophtho had tried with her to get her eyes moving in unison, it used to hurt so much to even move my eye balls. I must say these exercises helped. raising the head of the bed helps with the swelling so instead of waking in the morning and bumping into everything cus I couldn’t even open my eyes they were that swollen applying ice also helps, but most of all diet,avoiding stress, stable thyroid levels and reduced antibodies go a long way in TED running it’s course.
After surgery though my eyes got worse,nothing I did helped so I researched LDN (Low Dose Naltrexone) after hearing from a few people who had said it had made there eye disease much better, what did I have to lose only my sight and my fucking sanity..I took it for nearly 2 years and within weeks of taking it i could already see an improvement in my eye disease 6 months later I was told by my Ophtho that I was now in the inactive stage of TED.
My eyes aren’t 100% but at least people don’t think I’m going to kill them with my fucking stare and the pain is gone the only thing that remains is still dry eyes slight light sensitivity and only a little lid retraction left eye. I never wanted to do surgery on my eyes, fuck no one was coming anywhere near them.
I hope you too can find something that will help you, I do know they do an equivalent of celluvisc in the US.
Also I would get your antibodies checked see if they are up as they can be, after RAI and stay there for sometime, also you may not be in the right place thyroid level wise which could also be another factor.
I have seen to many people take the surgical route more for cosmetic purposes than the fact they could lose there sight due to optical nerve involvement trouble is a good eye surgeon will not do it while TED is still in the active stages.
Here are some exercises given to me by another GD and GO thyrella who was also featured in Elaine Moore’s book eye disease book.
Jody’s exercises try them you got nothing to lose either.
The Eye Exercises
1 – Find a focal point on the wall or somewhere in front of you. Look up HARD and hold for 5 seconds do a set of 5 of these. Do the same thing to the left, to the right and down, always hold for 5 seconds and sets of 5. In the beginning it is going to make your eyes ache, but that is a GOOD thing, it means you are stretching the eye muscles, and that needs to be done to limber them up and get them working together again.
2 – Roll your eyes SLOWLY, all the way around, trying hard to make them work together. This may not be easy in the beginning, but it gets easier as the muscles limber up. I roll them one direction, rest for a few seconds then roll in the other direction. I do this one 2/3 times a day also.
3 – This one is one I work on, but have not yet accomplished yet 😉 I use a pen, for me it is easier to have a white pen with a red colored cap, hold it out in front of me at arms length, then slowly bring it back towards the nose trying to cross the eyes. As soon as you feel the eyes split or separate, start over. Do this in sets of 5, several times a day.
Lolly
Great article, Nixy!!!! Although I’m hypo, I had a lot of disfiguring eyelid swelling and have frequently referred to my reflection as Quasimodo. Seeing his pic in your article definitely gave me something to relate too. Hiding behind my glasses and sunglasses last summer keeping my head down in the supermarket for fear I’d scare a child.
The worst of it was arguing with docs who didn’t believe it could be thyroid related. They need a lot more training.
I ended up in the hospital last October thinking I was dying again, frustrated that I’d been to doctor after doctor all of them saying depression, anxiety, the eyes.. . I don’t know what that is?!?! We’ll gee thanks Ladies and Gentlemen. Amazing that I could read a few books and accurately diagnose myself! At the hospital, I found a doc who was knowledgeable and caring. We tried adjusting synthroid and that helped a bit but the Quasi episodes kept happening. It was constant throughout 2009. Frightening! In January, we switched to Armour and on such a minimal dose the symptoms kept coming but over the last 6 months as we’ve adjusted the dose it’s calmed down and I have some very normal days. These days I say any day that I look more like Esmeralda than Quasi is a good day even if I have swelling, aches and pains and twitches, lack of air etc….they rotate day to day… One day at a time we’ll get better.
Stick with it! Don’t give up! Laughter is the best medicine so keep doing the movies, and also, not to sound too Pollyanna here, I have started yoga after reading an article in Yoga Journal about use in treatment for autoimmune diseases such as ours. Who knows. I’ll try anything! I’m not giving up! Neither should you! xoxo
I just accepted the fact that I will look suprised the rest of my life. I guess it could be worse.
Sure, it can always be worse. We know that, living is hell as we have. I’ve said that to myself many times as I stared into the mirror at a face I didn’t recognize. The thing is, it can always get better too. I have to believe this to survive. My spirit was so tired. So tired of fighting for people to believe me, to take me seriously, beyond, Take these xanax. So tired of feeling crappy hardly able to stand let alone walk. I was a dancer and a singer, an occupation that relies on looks as well as physical stamina. I had a great life and there I was reduced to a crumpled ball wishing for death. I want my life back. I’ve accepted that it may not be the same as before. But I want the best it can be. And I want that for you too. For all of us.
Dear Quasi-there are times i feel like i need to go that juicer machine in Willy Wonka-my lids stay swollen and i’ve ONLY got hashi’s-i try to cover them up with make-up but sometimes end up looking like some bug -eyed freak…too much black eyeliner anyone? And my vision- who knew it was so bad- I didn’t until i got one of those plugin vanity magnifying mirrors. The 1st time i used it i scared myself to death. I have learned that one can only look at the top half of the face or the bottom half of the face at a time-DO NOT, i repeat, DO NOT, look at your whole face together-and to think i had been going out in public with mascara globs in places they should never be and eyeliner lines where they didn’t belong-a good laugh at myself you say? NOT-
Guess there are times on this pimped out thyroid ride that we’re going to have to get by on charming personalities alone- that is, if we can find it between our heads spinning in 360 Degree circles and vomitting up green slime
Nicole, I’m so sorry for you. Too much for one person to have to deal with. It’s not right, pisses me off. Does not seem to me that misfortune is evenly distributed.
Hopefully this new health care reform will work to your advantage somehow. Sending positive thoughts your way, hoping that something changes for the better soon.
Donna xo
Nicole, I’m so sorry you have to go through this crap. TED sounds truly horrific everytime I hear somebody describe it. Please keep us posted on how you are doing and let us know if you find anything that works for you.
Hugs,
Sarah
Dear Lolly,
Thank you SO SO SO SO MUCH for all this information. You’re AN ANGEL! I’m definitely going to do these exercises, and I’m also going to look into LDN! Thankfully, my eyes aren’t TERRIBLE, but still, they could be a lot better. I don’t want to settle for the “it could be worse” route, because really, IT COULD BE BETTER.
xoxoxooxxo,
Nixy
Hi Kathleen,
I’m sorry you had to hunker down with a bunch of research after your doctors failed you – I understand how that goes, and really, it kind of was a blessing in disguise. I now go ARMED with info to the endo, and I’ll cut any of them up if they say something false.
Good call on the yoga, it’s definitely something I need to do – however, I get so damn frustrated when I’m all sweaty and slipping on that mat. It makes me want to throw it out the window, therefore, defeating the purpose of a relaxing yoga session : ) one of these days though, I will attempt once more…
Hey Nicole Henry,
I know how you’re feeling, and in the past I’ve tried to accept that too – but really, why should any of us settle for looking bug-eyed? We deserve more than what docs are feeding us.
Oh Bee, you make me laugh. I know, how do we find our charming personalities in this Graves mess? I had to start wearing pink blush so people thought I was sweet – and now that you mention it, I’m sure my vision was off cause I looked like a fuckin’ child doll bride with the amount I put on.
Thank you for making me giggle!!
Hi Donna,
Thank you so much for sending me good thoughts : )
I try to make sense of all the bad stuff, and I just say it only makes me stronger. I’m about as strong as a damn bull now, so I think I’m done – ready for the good stuff now!
xoxoxo,
Nix
Hi Sarah,
Thank you! I definitely will, and I’m going to look into the LDN that Lolly mentioned. I’m super excited about finding out as much as possible about it.
xoxo,
Nix
Hi Nicole, again it makes me sad that we have re-united under Graves circumstances. We once shared a loco roommate, hopefully our friendship will be a more fruitful one. I was diagnosed with Graves 02/08. Rai 08/08. Hypo 09. TED pain & significant swelling crept up throughout 09. I was freaking out too, but the advice I got from other TED patients was true.- Avoid flammatory foods (caffeine, alcohol)- avoid smoke & 2nd hand smoke, it will cut the active stage. It’s weird to say it but it’s true -avoid loud noise levels & stress. it’s sooo true. –Carry Lubricant eyedrops 24/7 & lubricate the cornea. This will ease dryness. -For pain, heat compress or hot shower helps. I just went to UCLA eye Institute with Dr. Robert Goldberg for 2nd Opinion from Eyesthetica and there is a good possiblity that TED may be headed toward inactive stage. ( I was shocked @ so soon as I was already psyched for surgeries) I stay active with walking. -All able efforts to combat body inflammation help. I kno wthe fear of not having insurance!! I owe general hospital, good luck re-couping! The treatment I was on is Prednisone for a couple of months. I didn’t re-act well to 40mg, they brought me down to 20, then 10, soon 5 & off in a couple of weeks. I was told by Eyesthetica that I had too much swelling for surgery to get a 2nd opinion for radiation treatment. When I went the other day prepped for anything, they gave me optimistic news because I thought the “active life” for TED was significantly longer (many years) & it didn’t help that they showed me a picture of a lady with super advanced stage. I listen to my body “sleeping” that helps ease the muscle. I know not everyone can afford that luxury. I wear a sleeping eye thing sometimes to help sleep or leep my eye closed when muscle feels strained. – I bought Maui Jim (2 pair) sunglasses,the best @ covering the sun. Cover the light 24/7 & I wear transition glasses.-Protect your eyes, helps to not see white. Have you applied for Medi-cal? I know it sucks for ppl like me who don’t have kids, cannot get medi-cal. I wish u strength and peace Nicole. I hope that this Eye-storm passes soon for you. Hugs, Mel
btw, if you experience a lot of double-vision (or any at all) that’s a significant sign to get treatment asap. The most important thing is to keep your orbital nerve healthy. see somewhere if u can get on something for swelling to keep nerve healthy. Prenisone made me fatter and zombie, but did help with pain & swelling. It’s not good for long term though due to could cause brittle bones & other side-effects
fan, a/c & wind will dry eye, lubricant drops help:)
Niki,
Why should you settle for it could be worse, I did something about mine, and it paid off. I wasn’t ready to sit back and do nothing to help and who knows how long the active stage can go on for mine took nearly 3 years and if it wasn’t for LDN I think I would still be having issues now.
Do lubricate your eyes often t stop them getting dry and try just raising the head of your bed at night you just put something under the bottom of the bed so it is slightly tilted helps the eyes with swelling while laying down.
I’m glad I could be of some help and hope that you find something that works for you, do get your antibodies checked if you can.
Out of all this Graves disease my eyes effected me the worse anything but my eyes,I wish I could send or show you pictures of the different stages as I always kept a record of there progress or flare. Today though they look pretty normal left eye isn’t as noticeable as it wused to be looking like I got a false eye I couldn’t close it properly at night it never shut.
I am so relieved that they have run there course with out the aid of surgery or harsh drugs to reduce the swelling. I was offerd the surgery for the lid retraction and refused until it was in the inactive stage.
You go for “It could be better”.
Luv
Lollyxoxox
oh & then I noticed anything that would cause swelling like extra sodium/alcohol would make it puffier. Like even my period, last month was so painful on my eye because I ws swollen everywhere! I thought eye was going thru a bad phase but realized it was the extra swelling. SO yes, I agree with Lolly re: tilting of head. Sometimes, I would wake up & one side puffier than the other because of overnight swelling. I would put cold water so that I could leave the house (or ice) and then heat to treat pain. Hang in there! I’m sure this shitstorm will pass soon. Until then, protect your eyes 🙂
Hey Melissa,
I’m sorry you had to deal with all this shit too! I don’t qualify for medi-cal ::sigh::
Thank you for all the info, ever since Lolly mentioned LDN I’m on a big time hunt for as much info as possible. I need to get my immune system in CHECK.
Lolly,
Thank you again for being such a help on this! I called and left a message with my naturopath on LDN and wanting to know what she’s heard, etc etc.
From what I’m finding, it sounds great. I’m definitely not going to do surgery, I want to treat this as naturally as possible.
Rock,
you are hilarious! even amongst all the bullshit in your life right now you can make me laugh like nobody else. you are such a trouper – MY ROCK – and my hero. considering all that has happened even since this post, you have the strength of Hulk Hogan. i love you so much and i am so proud of you. all this shit will come to an end and you WILL
(whoops – hit the wrong button…continuing…)
look back on these days and laugh at the obsurdity of what you’ve overcome. seriously, you have been through and triumphed over more shit than any 1 person should have to. i’m amazed everytime i hear of yet another story of some crazy thing happening to you. YET, you always rise above. you have taken your life by balls and taken control. i LOVE that about you. it’s why we’ve been friends for 10 years. ROCK ON ROCK—ROCK ON!!!!