[darkmysterious]

#1019076

Hello,

I’m M. II’m 26, and female. I prefer privacy when it comes to online message boards/forums. I’m obviously new to the boards but not the disease. I had thyroid issues in 2002 and was on medication. I don’t remember what it is. It didn’t help. I had the intolerance to heat/cold, I was losing my hair, my sanity basically. 2003 comes along, and they decide surgery. I did the whole iodine situation. It didn’t reduce the size of my thyroid gland. I was told my surgery would last two hours, it was a ten hour surgery. The gland was bigger than what they thought, it was tightly wraped around my vocal chords and other important stuff. They left a bit of gland left. Needless to say my body decided that the coldness of the operating room was hot, and I was sweating during surgery so much that they had to take off my pants. I wore pants yes. Like I said I’m a private person.

Now, I’m on a levothroid. I admit I don’t take it everyday and thats my fault I guess. But I visited a gyn doctor for my female issues. And she noticed how prominent my eyes were. My eyes are my problem you see. They constantly hurt, throb, ache, and its worse when I don’t get sleep. Thats my second issue is sleep. I can’t seem to get it. I’m also bipolar among other things. I smoke and yes I know I have to quit, but after ten years of smoking its hard to do so. Maybe my eyes wouldn’t hurt so much if I take my meds. But I take so many other meds that its hard to get everything in. I’m on Seroquel, Requip for the leg twitches that seroquel causes, Lunesta this is new b/c ambien stoped working. I was prescribed Lamotrigine to go with the Seroquel, and minipress to help with nightmares. And klonipin.

I went through hell these past few weeks not getting sleep. Last night was the only night that I got a restful sleep.

My eyes bother me so much so often that I feel like they will pop out and leave me in the dark. I was told I have no pressure in my eyes. I’ve seen the eye doctor and the endocrinologist. I was told that if the prednisone doesn’t work that we could try other courses of action. Or I could have surgery.

I ramble and don’t make sense. So I’ll leave it at that.

[hyperm]

#1069048

Hi M,

Welcome! Gosh you have been trough the mill. That must be so annoying that after all that surgery they left some thyroid in! I have just had a TT myself and was in theatre longer than expected due to the size my gland but nothing like 10 hours – gosh that is awful long – heart surgeries don’t even take that long! When you say pants do you mean as in trousers? I know I wore my underwear in surgery lol and actually they encourage female patients to do so now in the UK lol! ” title=”Wink” />

Sorry to hear about your eye problems that must be so frustrating after everything you have been through and at such a young age. I don’t know too much about TED but I do know that there are lots of people on here who do! Do you think you are still symptomatic hence the reasons for restlessness etc..? How long ago was your op? I know that my sis who had the op about 13 years ago – they left 1/4 of her gland and she now has re-growth which has resulted in a large goiter again ” title=”Sad” /> At that time in the UK they only offered para’s but now its only TT for thyroid patients so I guess I am blessed in that respect.

I know you know already how important it is to take your meds regularly so I won’t preach ” title=”Very Happy” />

There are many of us on here who have had a right rubbish time of it, myself included, who are more than happy to listen and support you. These people are the most supportive and caring bunch you will ever come across. Your post made perfect sense. Gosh I look back at some of mine and I was just on for a rant to get out what I can’t express to other people.
In the meantime take lots of care xxxx

[LisaH]

#1069049

Hi M.,
I’m new here so I don’t know alot about GD except that I have it. I did read that your eye condition can be made worse if you smoke. Don’t know if that helps or not. Sorry to hear about your issues. Hope everything gets better soon.

[Bobbi]

#1069050

Hi, M., and welcome to the board.

First off, I’m sorry you’ve been having such a rough time. Please know that we do get healthy again with appropriate treatment for Graves. It can take a while, but health is what you should expect.

I wanted to respond to your reluctance to take your levothroid all the time because of your other medications. The replacement hormone that you are on is chemically identical to your body’s own thyroxin (T4). Your body will use it in precisely the same fashion as it use(d/s) T4 manufactured by the thyroid cells. In other words, your body is designed to use this chemical, and the only side effect issues you will incur from using it occur if you use too much of it (you will become hyperthyroid with all the appropriate symptoms) or too little of it (you become hypothyroid–ditto). In that respect, it is unlike every other drug that you are taking, and perhaps it would help if you to stop thinking of it as a "drug." It is not a foreign substance being introduced–rather it is something your body normally uses. You need this medication to keep your body working properly, and your doctor needs to be able to tell how appropriate your dose is by you taking it consistently. Take it first thing in the morning, on an empty stomach, with plenty of water, and wait a while before eating anything or taking other medications.

I do hope you are feeling much better, and soon.

[darkmysterious]

#1069051

I should mention about the other surgery. My endocrinologist said I could have surgery to remove some of the bone around my eyes to allow for the inflamed tissue to expand. Maybe I should not wear my contacts day in and day out like I was. I’m wearing my glasses now. Which is helping.

And I’ve been taking my thyroid pills like a good little girl. I was on another forum and asked for help in the sleep issue and the eye pain and someone found this site for me, and since then my pills have changed and I have been getting that wonderous thing called sleep. It is nice.

My eyes aren’t hurting as much.

Yes I know I need to quit smoking. I have Chantix, I can’t do it alone. But the side effects I’m worried about. With my history of mania and suicidal thoughts and attempts, I’m leary of it. I can’t afford the nicotine gum or patches. My life is stressful and the cigarettes help ease that, and yes that is a crutch I realize that. I could barely afford the klonipin this month. I’m on powerful drugs as is. As in the seroquel, klonipin, lunesta, minipress, lamictal, topomax.

To elaborate on the pant situation, I asked if I could wear my capris during my thyroidectmy and I was allowed but my body started to excessively sweat, they had to take them off. I was in the hospital for two days because of complications. I was treated like a child, I had to wear a splint for the I.V. Never had I had to have one of those in my previous surgeries, the I.V ended up puncturing my vein and the fluids leaked out into my arm. I had a huge bubble. It was a horrid experience. Couldn’t afford pain killers got sent home with four Vicodins. And I suffered. I was told I had hasimotios *spelling? Now I’m told I have Grave’s Disease. Its all confusing.

[npatterson]

#1069052

I apologize for being so late in responding to this. If I miss a couple of days on the Board, it seems like things get pushed out of sight.

No lecture on smoking. BUT, have you talked to your Psychiatrist about the CHANTIX? Is that the doctor that prescribed it to you? You are right in being hesitant about the side effects.

Bobbi’s post to you about the Synthroid was correct. You need it.

I have heard about people having their thyroid wrapped around their vocal chords, and down into their chest. It’s rare, but it does happen.

You may find that you have to have a couple of medicines that work for you (like the Ambien and Lunesta) so that when one seems to wear out, the other can be re-started. They can be used on a rotating basis–obviously with the doctor’s supervision aznd support.

Take care,

[clancy_8]

#1069053

Hi
I am from Australia and have just been diagnosed with GD. Age 48 yrs. I am currently on medication after being in Hospital where is was discovered. I have been on meds for 3 weeks and have not made a great improvement. I also have a goitre. Could you please recommend reading material on GD and appropriate diets that might help. I feel very distressed with this disease. Thank you.
T

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