[Kimberly]

#1066146

First of all, you should know that you are not alone. At the last two GDF conferences I have attended, we had a speaker who was a psychiatrist and also had Graves’ himself. He shared some research that had been done on patients with Thyroid Eye Disease, which confirms that many TED patients experience depression, anger, tension, fatigue, confusion, and a perceived lower quality of life. Although there is no one-size-fits-all approach to dealing with these issues, following are some of his general suggestions…one or more of these will hopefully provide you with some relief.

* Maintaining a good diet
* Exercising
* Strengthening social supports and relationships (including seeking group support)
* Using stress reduction techniquest such as yoga, meditation, or Tai Chi
* Counselling or psychotherapy

Also, have you seen an ophthalmologist? If so, did he/she recommend proceeding with the OD? It sounds like you are really having serious concerns about this procedure. There are many members on this board who have been through the procedure and can answer any questions. Nearly all of the patients I’ve come in contact with have been pleased with the results of their OD. However, all surgeries carry the potential for complications…so I would make certain that you are doing this for yourself.

Finally, sometimes when we *think* that people’s actions are directed at us, that isn’t always the case. I’ve had people misinterpret my actions and think I was angry with them when that was absolutely not the case. Yes, there are some rude and ignorant people in the world…but we can’t let those folks dictate how we live our lives.

[leggymummy]

#1066147

Hi, I was Mrs angry writing that earlier, so thanks for your patience ” title=”Smile” /> I think some people forget that TED is a disfiguring disease, and with any facial thing it is always going to be difficult to deal with. Your comments are completely right and I do live a healthy lifestyle with regard to not ever smoking, I don’t drink or do drugs or anything like that. People tell me how beautiful I am all the time I always internalise the one negative comment, from a person who is uncomfortable in their own skin, hence the comment. I was going to stay in tomorrow night but your word have helped and me and Husband deserve some time together, regardless what people may or may not (I know some things are not directed at me) say. If I feel confident, people don’t say anything bad, or maybe I don’t notice it. If I feel tired, or exposed, I get insecure, then attract negativity. Ahhh you cannot win, I just need to get some self confidence. I DO want the OD but I am scared. They should of done an OD back when my eyes were really bulging out, one upper lid was retracted both lower were and still are retracted, and they were very extreme, but maybe eight years ago they did not have the advances in surgery like swinging eyelid surgery or endoscopic variations on the technique maybe….I have contacted somebody who just had the op and I am hoping for a reply soon, I just need to know what to expect, (I am paying for this myself on credit cards) with healing and all that stuff. I now I will never look like the old me (been 16 years since my eyes were normal) this will be my 2nd eye surgery so I know what to expect I think ” title=”Confused” /> Thanks again I love this site xx

[snelsen]

#1066148

just sent a pm, let me know if you received it.

[Ski]

#1066149

If it helps at all, the fact that your eyes got better after the most severe proptosis is actually evidence that waiting to do OD is a good thing ~ if you’d had the surgery when your eyes were at their worst, NOW they’d actually be sunken inside your head, with another kind of "looking different," and not half so easy to fix.

I wish people with proptosis didn’t feel so awful about it, but the fact is they do, and of course they do ~ it’s the way you present yourself to the world, and you can see reactions in the eyes of others when they are startled by your appearance, even if they don’t say anything. Seeing well is one thing, but protecting your eyes is another ~ it is NOT a normal state of being, having that much of the eyeball exposed, and longterm it can really be damaging to your sight, so please don’t feel as if you’re doing the surgery "for everyone else," OR just for "vanity." It is important to have the protection of the eye socket.

After OD, your eyes will be protected as they should be, and you will stop feeling so self-conscious. I hope, if you have insurance, you get the procedure coded correctly so that it is covered. It is NOT cosmetic surgery, not in any respect.

In the meantime, as Bobbi always says, a smiling face looks better than a not-smiling face, so to the extent you can muster it, give the world a grin and you’ll look AND feel better. It has been proven that moving your face into the position it would have if you were happy can actually start to make you feel happy. It certainly won’t solve every issue related to people feeling badly, but it’s a start.

I’m glad to hear that you feel empowered to get out and have some fun. For anyone who makes nasty comments, just consider the source. Don’t let them take any more of your self-esteem than THEY are worth to YOU.

[leggymummy]

#1018637

I was in a cafe today with my little boy, I sat at a table in the middle which I hate doing because I hate people looking intently at my profile. The girl behind the counter started to talk (whilst laughing) about fish, I knew she was mocking me. I felt uncomfortable today before I left the house I am so tired all time my baby is up all night, and that makes my eyes worse because they are dry and irritated. I left the cafe and I could not hide, my body said it all I was stiff and nervous and did not handle it well. I have mild to moderate proptosis made worse by years of depression at getting ill at 16 years old, followed by graves (brought on by a bad childhood and extreme stress for certain) I feel I am having the OD to fit in to society, and that makes me so pissed off. Who wants to look the same? I have great vision and now because of bullying I am yet again going under the knife. I hope it works out because this is no way to live, I am sitting here in my house because it is safe, it is home. How do you get that thick skin that shields you from the ignorant and hurtful things people say?

[jjbartlett]

#1066150

Well, I am new to this forum. I do know something about comments and insults. I had an enlarged eye on my right side and going through more test to determine if it causing problems or if it is the onset of eye disease. However, my Endocrinologist has never told me wither or not I have Grave’s disease or just hyperthyroidism. Is there a difference? My primary told me that it did not matter because the treatment is the same. In fact, it does matter to me. No one except those here can really understand the frustrations we face and the days of sickness. I am almost sure most people I associate really grasp that I fell tired, sick, full of anxiety, and I worry about my eyes and heart. I have been through so many test and now I have to go through more and the doctor’s still have not told me I have Grave’s disease. I see her again on Thursday hopefully then she will have more answers. The most recent good time is now I cannot enjoy food because I cannot taste anything. I called my doctor and she changed my medicine but she warned that this new medicine is known to cause live damage. Does anyone know how long this last? I quit everything I enjoy and now I cannot even enjoy eating. What’s next? I have considered just going and getting the radioactive iodine so I do not have to take these medicines anymore. Although, I have been told I will no matter what have to take medicine for the rest of my life. I have had others roll their eyes when I cannot walk very far. I had even one guy yell out a comment as he was walking into the store. I am lucky that I have my husband because I don’t know what I would do by myself. I wish I had more friends for support but, the ones I do have really do not think there is anything wrong with me. I am almost certain they have talked about me and how pathetic I am. At least here, I am surrounded with people who know. Thanks for being here

[leggymummy]

#1066151

Thanks ski, I think your right about the last op, it was what was do-able at that time. My vision (my focus) has been steadily worse over the last 5 years I have to wear glasses for reading and being on the PC. Not sure if that is related in any way, but maybe. I did say to my Husband, if I ever got a blow to the eye or if I fell the eyeball has NO protection, as it sits outside the orbital rim, I would probably go blind. I get funny pressure things behind my eyes sometimes too and a little eye strain, I do not want that to get worse. also, acceptance of the way I look has never really come, even after 16 years. I have never accepted it the way some people do I have always held out hope that one day something could done. I am with the original surgeon who performed the op back 8 years ago, on a private basis. I might be able to get NHS funding (Uk) but that may take time I don’t know if I can wait any longer but the money is not an issue, what price can you put on a quality of life, having a life and going out even if you feel low. Anyway I will post back Monday, fingers, toes and everything crossed!!!! ” title=”Razz” />
Jo x

[Bobbi]

#1066152

For jjbartlett: Hyperthyroidism is the the thing that makes us so very ill, no matter what its cause. It doesn’t matter whether Graves causes it, or a berzerker clump of thyroid cells (called an "autonomous node) causes it, or whether an infection causes it. BEING hyperthyroid is the metabolic equivalent to the body of being run over by a truck. Hyperthyroidism must be treated effectively, or the long-term effect on your health can be devastating.

What is "Graves?" Graves disease (which accounts for a HUGE majority of the cases of hyperthyroidism in patients) is an autoimmune disease. I suppose you could say that is the bad news. Autoimmune diseases do not go away. They are caused by antibodies, created by the immune system. The antibodies mistake thyroid cells for an "invader" and procede to attack it, and, in our cause, cause the thyroid cells to make and release an over-abundance of thyroid hormone. Antibody levels can go up and down for no well-understood reason, and if they go down, we call it a remission if it lasts long enough, and we can be symptom free. But remissions are temporary, by definition, so the disease typically returns after a period of time. But there is also GOOD news because antibodies are very specific to the type of tissue they attack, and in our case, we don’t absolutely NEED a thyroid. People live healthy, energetic lives without thyroids. I have several friends who had thyroid cancer, so every last vestige of thyroid cell has been removed from their bodies. They are not sick people. They take replacement hormone, and go about their lives normally.

So, the issue for you to focus on is how best to treat your hyperthyroidism EFFECTIVELY. We all make a decision based on what we feel most comfortable doing, and what seems to work for us. There are several facilitators here who have chosen to stay on the antithyroid drugs (PTU or methimazole). One of them is in remission at this point in time, and not taking any drugs. Ski and I (among others) chose to have our thyroids removed, via RAI, and we are on replacement hormone. I cannot speak for Ski, but I had my thyroid removed via RAI because I hated how I felt on the antithyroid drugs (ATDs). It turns out that I was more susceptible to the side effect issues than others are. RAI gave me back my health.

And that is the goal, and it is an achievable goal for most of us: to get healthy again. So, whether your hyperthyroidism is caused by antibodies or something else, please know that once you’ve eliminated the hyperthyroidism, you can expect to regain your health.

[Kimberly]

#1066153

JBartlett – Bobbi is correct that your hyperthyroidism needs to be treated, no matter the cause. You might ask your doctor, though, about the cost vs. benefits of getting a TRab or TSI antibody test to confirm the presence of Graves’ Disease. Autoimmune conditions tend to cluster in families, so if your hyperthyroidism *is* due to an autoimmune issue, this is good information for you and your family members to know. *If* one of your family members were to develop Graves’ or another autoimmune condition, this might help them get a quicker diagnosis. In fact, the American Autoimmune Related Diseases Association (AARDA) had a campaign a while back to encourage people to "know their AQ" — or Autoimmune Quotient. They are working to make it standard practice to have docs check for a history of autoimmunity in the family, just like they ask about family history of stroke, cancer, heart disease, etc..

You didn’t mention what drug you are taking, but I assume that it is PTU, methimazole, or tapazole. Liver complications are potentially VERY serious, but fortunately, this is a rare side effect of anti-thyroid drugs. The good news is that getting a regular Complete Metabolic Panel (CMP) as part of your regular blood tests can help monitor liver function. When a liver issue is identified, most patients see an improvement once the meds are reduced or discontinued. One of the presenters at our conference last fall mentioned that the most serious side effects tend to occur during the first 90 days of treatment. So definitely check with your doctor on any symptoms to watch for, and contact their office ASAP if you experience any of those issues. Another potential side effect of anti-thyroid drugs is a severe reduction in White Blood Cell count. This can be monitored with a regular WBC test — and you should call your doctor’s office ASAP if you experience a severe sore throat with fever, as this can be a sign that this condition is occurring.

As Bobbi said, once you have selected a treatment option, you will eventually be able to get back to enjoying your life!

[jjbartlett]

#1066154

Thanks both of you, Kimberly and Bobbi, for responding to my post. I currently take Propylthiouracil and Inderal. I was taking Methimazole. The treatment options for me I have been told are lifelong no matter what I do. They told me my thyroid, rather or not I take medicines to control the thyroid, will not matter. My thyroid will eventually burn its self out and I will have to take hormone replacement when it does. So, I guess it is really of matter of when I want that to happen now or later. I have really been considering radioactive iodine because I really want to go back to how I was before. I want to exercise again and feel good about myself. Right now, I have been told my heart rate, even with medicine to slow it down, is too high so I cannot exercise. There is so much pressure in California to look good and I don’t. I get a lot of people staring at me because I am over weight and I look pale. I told my oldest daughter to visit this site and read the stories so at least one person in my life can understand I am not imagining these things. She was reading some of the entries and she was moved. I will try to figure out from Dr. Bui if she thinks that doing this now will help return my taste. You know what people the worst thing to me, because I love to taste things, is losing my taste. I took a bite of my Pizza today and nearly gagged because it had no flavor. It has been like this for 3 days now. I can’t eat and my mouth feels numb. Is this a side effect or an allergy?

[Bobbi]

#1066155

Well, PTU (the unspellable drug you are on) has a foul taste for many of us, and that might be affecting how you taste other things. Since we typically have to take it three times a day (rather than the standard once a day for methimazole), that might be the culprit.

[suzzie]

#1066156

Hi,im new to computers and to forums,so escuse any misstakes.I have had TED now for at least five years that i know of.I had all my thyroid out two and a half years ago,i had OD on one eye twelve months ago and the other eye was done nine months ago.My eyes look fab now,just waiting for cosmetic surgery (in about eight weeks).Having lid retraction corrected,fat removal and loose skin removed.No regrets so far,it has been a scary process but worth it.I personally have not been out because of the way i looked(still havent yet).I lost all my self confidence because of a few cruel words that were said to me and have suffered bouts of depression throughout my illness.Im very lucky, living in the UK all my treatment has been free on the NHS.One less thing to stress about.Im glad i had OD.I have started to gain some self confidence(even having computer lessons).Its great to have a support group on the subject.The only problem i have had after OD is double vission.At first it was realy scary,had panic attacks when had to go anywhere(crossing roads were the worst thing to cope with)but things have calmed down now.Im not having a opp for the double vission as it is only when i look to the extreem left or right now ,and i can cope with that.I had my photo taken the other day,the first one in five years.(feeling happy)there is a light at the end of the tunnel.Glad you have the courage to go out,good on you.Hope things go ok for you.

[Kimberly]

#1066157

Suzzie – Thanks so much for sharing your story. For those who are still struggling with the effects of Thyroid Eye Disease, it’s very encouraging to hear success stories like yours! Best of luck in the future.

[mamabear]

#1066158

leggymummy wrote:How do you get that thick skin that shields you from the ignorant and hurtful things people say?

I personally put a smile on my face and figure if they don’t like the way I look frig it. I can’t please everyone, nor do I care to. It’s not my job and I’ve seen that job and don’t want it. If people want to walk around with their head firmly implanted up their heine why should I try to pull it out to see if they will change their minds about being rude, inconsiderate and a nuisance to society. To be honest it makes me sad that they are like that because it shows lack of character.

You say you have a little one and he keeps you up. Health issue aside, ANY mother would look like hell when she doesn’t get enough sleep. (raising my hand right here as I have 4 of em’!) It’s not easy being a mom, it’s not easy having any disease and not easy dealing with the side effects of the disease’s AND the side effects of being a mom. Which can intertwine with the disease side effects and or the medicine we take to help the disease. Such a cycle isn’t it ! LOL Sheesh!

I recently just had a kidney stone removed, it was causing an issue with everything inside me for a long time and I didn’t know it. We are talking about 8 months or so. I am 36 and I looked much older and the wrinkles were horrible, pain puts wrinkles on your face faster than smoking ! It was horrible! I don’t mean to sound conceited, this is just to prove a point. I am pretty woman, I don’t fuss over it and I don’t care what I look like when I leave my home. Hair done or hair in a bunn and looking like someone smashed me with a Mac truck, doesn’t matter to me. I use to say hey I don’t care how I feel as long I look good who cares. That smartypants attitude use to help me get through the day when I didn’t feel well years and years ago. I missed that girl for a long time because of issues here and there.

Right before I had surgery my face was a bit grayish, it was sickly and I looked about 10-15 years older. No smile on my face, no energy and still dealing with little ones at the same time. I am grateful my dh is understanding and knows things about medicine and was able to help support me.
I have recovered from the surgery and the kidney infection that followed, it was not fun at all and scared the pants off of me. I woke up with no fever and washed and literally scrubbed my face did my eyebrows, shaved my legs, scrubbed my body, did my toes and nails(just cleaned them) and I looked in the mirror and found a woman who was 36 again. The pain stopped and so did the aging of my face! The veins aren’t there anymore and wrinkles are going away. Naturally I have wrinkles but those other wrinkles weren’t from age, they were from pain. It’s amazing what our body does.

You need to be able to rest well, I know with little ones it is so hard to do. You have to find the time though and once they are sleeping take time for yourself and your dh and then get to bed. Don’t stay up late, get in bed by 9, sleeping by 9:30 so if you do have to get up for child you have had some rest. Ask yourself if little one is going through a growth spurt or at an age where nightmares happen, or the potty thing..oh that one is always my favorite.. "Mommy, I have to pee pee!!!!". I tend to say now "so go pee and get back to bed!". yes that is what I say or I will be sucked into the room and never able to leave. I do wind up going up there when my dd5 is up but still sleeping, she goes potty and then goes right back to bed and never knows she was up. every kid is different. Just like every Graves’ patient is different.

If it hard knowing that someone has made fun of you and it hurts real bad, realizing that your disease can be managed and your eyes might be able to go back to a better state then they are now is far better than the jerk who made fun of you will be later on in life. They will never realize that they are rude and ignorant and one day just one day someone will make fun of them or they will make fun of the wrong person and it might hit them.. "wow I i did that!".
You have a backbone, they don’t ! That is what should keep your skin thick!!!

I look at things a bit differently… I dont like people making fun of others it brings out a bad side in me, the claws come out! LOL

Have a great day and know you have support here.

[Author]

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