[angelamercy July 10, 2012 at 11:40 am Post count: 20]

#1059191

Almost everything I read states that once your thyroid is removed (mine was Jan 25) that your eyes should get better? I started going into liver failure on the methimazole that is why they removed my thyroid.

1. Why aren’t my eyes better? I have gone through two rounds of infusions, which did work for a while. Radiation will start July 18th.

2. I was hyper but now am hypo, med dosage is changing approx every 6 weeks. Why such the drastic change? Hypo two months after surgery?

3. How can I get rid of all this weight?

I have read and read and read everything I can get my hands on but I seem to get more and more confused.

What does smoking have to do with Graves Eye? Is it the smoke or the nicotine? I can’t seem to find that answer any where.

Also, what is with iodine? I don’t have a thyroid so do I fall in the category?

I am so weepy and angry – which is NOT like me at all. I am 35lbs over my normal weight and no end in sight since I have to take predisione while going through radiation. I guess I want answers more than anything. That and for my eyes to go back to normal.

[Carito71 July 10, 2012 at 11:55 am Post count: 333]

#1172837

Hello Angelamercy,

I’m sorry you are still having problems with your eyes. I don’t know much about the prognosis for eye problems when the thyroid is removed but I think, and don’t quote on that, that I read that even though the thyroid is removed that the antibodies that attacked the thyroid and eyes are still in the body and can continue attacking the eyes, skin … Like I said, please don’t quote on that for I don’t remember where I read and I might be wrong. Maybe one of the more experienced people will come in soon and help you with your answers.

As for cigaret smoke, there is not a single chemical (4,000 of them) in it that will not cause problems to the body. As for eye problems with GD, if I have to guess, it is probably both … smoke and nicotine … plus all the others. But again maybe one of the more experienced people will come in soon and help you with your answers.

Hope you feel better soon and find the answers and treatment you need to get there.

Caro

[Bobbi July 10, 2012 at 1:28 pm Post count: 1324]

#1172838

Hi, Angelamercy:

The information that we have about smoking — which includes ever having smoked — is that it increases the risk of getting the eye disease and also the severity of the eye disease when we get it. I assume that you are asking because you smoke. Talking with your doctor about smoking cessation might be helpful, especially about which method to use. When I quit smoking for the last time (I had quit many, many times) I used the drug — Zyban/Wellbutrin. I found it very helpful.

As for why your eyes are not better for having had your thyroid removed, it does not work that way, unfortunately. People who have never had wonky thyroids (i.e. either hyperthyroid problems or hypothyroid problems) have developed significant eye disease. Usually the thyroid problems and the eye problems occur together. But a treatment for the thyroid problems does not affect the eye disease. I wish they did.

The dose of replacement hormone that we will need is — originally — a guess. It’s an educated guess, but a guess nonetheless. It takes a few months typically to calibrate the dose that any one person needs. You can help quicken the time frame by taking your meds first thing in the morning on an empty stomach and waiting 45 minutes or so before eating anything. I typically take mine with a cup of coffee. The issue is consistency. If you take them in exactly the same way every day you eliminate the possibility that variations in your behavior are having an effect on the amount of the pill that gets absorbed into the blood stream. Also, do not take vitamin or mineral supplements of any kind within four hours of taking your replacement hormone pill.

Typically “some” thyroid cells are left behind after either RAI or surgery. If you have thyroid cells you need “some” iodine for them to function normally. But if you live in the U.S. you don’t need to worry about iodine. It is in just about everything we eat that has been processed prior to our buying it. (Like bread, or cereals, or soups, etc.)

Once you have recovered sufficiently to go back to your normal activities, you weight issues should normalize. It may not be the exact same weight that you carried before, but even folks without thyroid problems are finding it hard to take weight off and keep it off these days. But like everyone else, you need to get adequate exercise for the amount of food you are eating, in order to be your optimal weight.

[catstuart7 July 10, 2012 at 5:16 pm Post count: 225]

#1172839

Bobbi wrote:

The information that we have about smoking — which includes ever having smoked — is that it increases the risk of getting the eye disease and also the severity of the eye disease when we get it.

Holy crap! I’ve never smoked, but I was exposed to a whole lot of second hand smoke during a few years in my youth. That was over a decade ago though – could that matter?

Angela, good luck to you. I can understand you want the eye disease gone NOW. If only there were a way. I don’t remember the exact figure but there’s an average time that the eye disease runs its course – I think it’s around 24 months. There’s some stuff on this board about the “hot phase” if you search for it that may be of help.

[KimberlyOnline Facilitator July 11, 2012 at 9:32 am Post count: 4294]

#1172840

@Angelamercy – Definitely make sure that your doc is on top of adjusting your dosage, as being either hypER or hypO can aggravate the eye disease. Also, if you do a search for “weight” on this forum (the “Search Posts” feature is in the top right-hand corner of the screen), you can see that many patients have struggled with weight issues post-treatment.

For many (but not all) patients, the degree of difficulty seems to increase when it comes to losing weight, for reasons that aren’t well understood. It’s important to keep “fighting the good fight”, though! Here are a few tips from a presenter who spoke at our 2009 conference:

* Include breakfast daily within 2 hours of waking up.
* Don’t go longer than 5 hours in between meals
* Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
* Limit servings of healthy fats to 1 per day
* Prioritize at LEAST 7 hours of sleep a night
* Once a doctor’s clearance has been received to resume activity, do 150 minutes per week of physical activity, plus strength training 2 times per week.

Take care!

[KimberlyOnline Facilitator July 11, 2012 at 9:35 am Post count: 4294]

#1172841

catstuart7 wrote:

Holy crap! I’ve never smoked, but I was exposed to a whole lot of second hand smoke during a few years in my youth. That was over a decade ago though – could that matter?

Hello – I haven’t seen any studies specifically on second-hand smoke. However, I have seen a study that indicated that there is a benefit to smokers to quitting when they are diagnosed with TED. So while history might have some impact on the course of the disease, it is also significantly affected by *current* exposure to smoke. (Which hopefully, you aren’t having to deal with now!)

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