[bishop76]

#1018919

Hello everyone. I am new to this forum. In fact, I have just found this site today. I have been reading your stories, learning new things, and sympathizing with everyone…esp. the children diagnosed.
I am 32. Almost 5 months ago I was diagnosed with Graves. It has been a roller coaster of events. My hands shaking, the first symptom, had me thinking between I had low blood sugar to having Parkinson’s (before I was diagnosed). Once I found out what I had, I was relieved to know their was a treatment of all my discomfort. I was hospitalized twice for my extreme heart rate and palpitations, being unable to slow my heart rate. I take 450 mg of PTU/day, 120 mg of Inderal/day now. I see 4-6 doctors per week, it is getting exhausting. I have a huge goiter in my neck. I was told that I would have to wait another 3-4 months to regulate before they gave me RAI or surgery. Now that the goiter is constricting my windpipe, RAI is not an option and they are taking it out. It looks like I swallowed a grapefruit and it is stuck at the base of my neck. I have known for one week that surgery is soon. I was ecstatic to be having surgery!! I wanted to put this whole thing behind me. But I also just found out that my eyes… the burning like acid in the mornings, the wearing sunglasses in my house, and the uncontrollable tearing will not stop after surgery. I am no longer happy about taking it out, though I know I am still relieved to get this ‘mini me’ out of my neck and be comfortable again. I have gained 20 lbs since diagnosed (from 108-128), mainly because I was put on bed rest to avoid thyroid storm. I need to already lose 10 lbs of it for my frame to be healthy. I am nervous about the eyes getting worse, extra weight gain, and my face returning to normal. My eye lids are extremely puffy with the extra tissue build=up. Vanity wise, I have not lost any hair or have any skin problems, but I cannot fit into my clothes, my face is swollen, my eyes do bulge a bit. I feel like I am swollen all over. I am tired all of the time and I eat when I am not hungry. I didn’t realize I may need more surgeries on my eyes than just the cosmetic to correct. My opthamologist is now talking about putting plugs in my eyes. I have been strong up until this point, but learning more about this horrible disease is breaking me down. I had no idea!! I can’t live with my eyes burning so much!! And I pray that I never get the double vision or need shots in my eyes! I was put on steroid drops today, and other drops throughout the day. I am a smoker that is quitting this week before my surgery. That is something I cannot compromise on, since the smoking makes the TED worse. Does anyone know if it is safe to use patches or is it the actual nicotine that makes the TED bad? I don’t get much answers about the eyes from my docs. I am not so concerned about the scar, unless it is just too noticeable, but I was told by my endo that the surgeon is good. I don’t know what I want to say, except may I have some feedback? I am getting nervous. They told me I was at risk for a storm while in surgery, but I will suffocate it they don’t take it out. On SSKI (Potassium Iodine) for 10 before surgery to lower the bleeding. They have to bring in special equipment to the hospital to do my surgery since the goiter is so big and I have had 2 doctors tell me they have never seen one this big in person, only in medical books. Not very comforting. I am so happy I found this site and know I am not alone, though wish non of us had to go through this. I cried yesterday for the first time in years, realizing this pain may continue. I then I realized people are worse off than me and I need to be grateful that I am not worse. But am scared to get worse… Thanks for listening.

[npatterson]

#1067862

Dear Bishop,

I can’t address everything, but I can tell you a few things:

The plugs in your eyes are comfortable, easy to plae, and can be removed.Their purpose is to keep your tears on your corneas, rather than have them running off. The burning is from exposure.

It is the SMOKE that is bad for you, and yes, patches are fine. I will ask at the conference if the other question about nicotine is a factor.

DO NOT do "cosmetic" surgery on your eyes. While there is a cosmetic benefit, the purpose of surgery is to preserve the integrity of your corneas. They are done in a specific sequence, and only done AFTER your eyes enter the "cold phase".

Send me a regular e-mail, and I will attach some information back to you. Where do you live?

You will have more replies to your post, I am sure.

Take care,

[Ski]

#1067863

Nancy asked the question about smoking at today’s conference session, and the answer was that the smoke itself is likely the culprit, not the nicotine. The doctor commented that the muscles most often affected by TED are the very same muscles that abut the sinus cavities, which are separated from each other by a paper-thin membrane, so the likelihood (though not proven) is that the actual smoke affects the muscles almost directly by virtue of that connection. The nicotine patches should be safe for you to use. I hope that helps!

[bishop76]

#1067864

Thanks Nancy and Ski! I had my surgery this past Wednesday. I am home now. I am still feeling weak and in discomfort, but nowhere near the pain I was in while at the hospital. The morphine given to me every 3 hours via IV was like child’s asprin and did not take the extreme pain away. Now, I am walking around a bit and preparing my own soup and calcium supplements (all parathyroids came out, as well). My surgeon told my parents and my endo that it was the largest thyroid he has ever seen and that it was pushing my trachea all the way to the left. I saw pics he took. It was extremely huge! I knew I was a mutant. LOL I am glad it is out. I still have swelling in my face and neck. It still feels like I am being choked on my left side. I am not on hormones, yet. I should be put on them sometime this coming week. I have not gained any weight sine the surgery as I am not eating everything in site. In fact, I am keeping it to soups, V8, yogurt and maybe a little ice cream. I did quit smoking. I am not going to use the patch, as I already have gone through the 72 hour nicotine withdraw. I am just taking it one day at a time, trying to curve my cigarette cravings with other thoughts… until I am able to curve them with exercise, this is all I can do. I was told I will be started on 100mg of synthroid to start, and am hoping this is enough. I do not want to yo-yo with this. I want to feel right, right away. I want my face to start looking like normal. Even if my eyes stay looking a little swollen, I want my cheeks and rest of my face to return to normal. Is this ‘deformation’ permanent or does it go away? I understand the eyes could get better or worse and it is a waiting game. I am patient enough to wait on that as long as the rest of my face returns to normal. The bottom of my face is puffy like a bulldog and make me look like I have the ‘frown’. My face has drawn down and accumulated what seems like permanent swelling at the bottom. You guys have been so helpful already. Nancy, I did call that day and got your email, but have not called again as I was busy prepping my house for post surgery and getting everything I needed in order. I will call as soon as my voice gets a little stronger. Thank you, Ski, as well for all of your help!

[Ski]

#1067865

Hi there!

So glad the surgery went well for you, and you’re on your way!

Your replacement dose will take time to figure out ~ there’s no way to know exactly what dose will be best for everyone ~ but you shouldn’t be going remarkably high and remarkably low as you work it out, so (once again, as in everything Graves’) patience!

The issues with the way your face looks may have to do with Thyroid Eye Disease (or Graves’ Eye Disease, or Graves’ Ophthalmopathy ~ same disease, different names), so you should talk with an ophthalmologist about that. It appears to be caused by the same antibodies that cause the thyroid disease, but it has its own course and treatment that do not relate to the thyroid disease. Going severely hypo MAY be a contributor, but that hasn’t been proven yet ~ in any event, an ophthalmologist is the one to consult, NOT an optician.

Wishing you luck! Keep sending updates!

[Author]

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