[SallyB62]

in reply to: Smelling cigarette smoke?! #1061393

I don’t know if it is related to thyroid dysfunction, but I have have smelled phantom cigarette smoke too. I have Grave’s disease, with TED.

[SallyB62]

in reply to: HIGH TSI–normal for Graves? #1061425

Soooooo, for a person post-thyroidectomy and with TED eyelid retraction, would the TSI be helpful. For example, to see if the TSI is going down. Or, to help determine if there might be remaining thyroid tissue that is still stimulating the body to produce TSI, and (therfore) continuing the TED?

[SallyB62]

in reply to: Newly diagnosed #1061445

I would also like to reiterate one of the original questions of whether the symptoms will go away after treatment. After total thyroidectomy or RAI, is it abnormal for someone to still experience the knee pain or muscle weakness when hormone levels are in normal range?

[SallyB62]

in reply to: Newly diagnosed #1061444

Ski, your explanation makes a lot of sense. I thought my endo didn’t want me to exercise while in hyper phase, because of the possibility of high heart rate. It was probably a combination of the muscle mechanism and other GD hyper issues.

[SallyB62]

in reply to: euthyroid eye disease and small town living #1061451

I had the eyelid retraction well before my thyroid went Grave’s Disease hyper. Luckily, I didn’t get the fatty deposits behind the eyes. Unfortunately, my GP doctor didn’t recognize my eye symptoms as serious; eventhough, at one point, I looked like I had been born without eyelids.

Have you been tested for the thyroid antibodies?

[SallyB62]

in reply to: Thyroid Hair #1065728

I don’t know if this was in a previous post; but, hair can also be affected when your thyroid hormone dose is changed.

[SallyB62]

in reply to: Newbie here #1061629

Hello and Welcome! I am not a moderator, but am happy that you found this website. I just joined in April 2011, and I wish that I had found this site years ago. The people on this website are very knowledgable.

All I can advise is for you to do tons of research and bring many questions to your doctor. I believe that informed treatment is essential, especially with this disease.

And, I personally know that a person can have Grave’s disease (even high thyroid hormones and antibodies) and show the symptoms of hypothyroidism. The different and changing symptoms can drive you nuts (figuratively, of course).

But, glad you are here.

[SallyB62]

in reply to: Grave’s Disease and big Decisions #1061996

Kimberly,

Thank you for your advice. Since reading all the posts about emotional lability and all, I have been consulting people more. Apparently, us Grave’s people don’t always realize that we are making bad decisions.

Michele

[SallyB62]

in reply to: Grave’s Disease Diagnosis #1062031

Thank you Shirley for your advice. Even my endo shied away from answering the question "Do I still have Grave’s Disease or am I cured after the Thyroidectomy?"

But, my endo does not want to repeat the antibody tests ever again. Says that would be useless, with no information. What if I am still producing antibody? Shouldn’t we find out in a few months if the antibody titer has gone down appreciably? If I still have antibody, wouldn’t my eyes still be getting attacked?

Sorry, I may still have the Grave’s anxiety. (Does that ever go away?) But, I still worry about these things.

Michele

[SallyB62]

in reply to: long term effect? #1062001

The Mayo Clinic website has some articles on Grave’s disease and possible long term effects.

I, too, am worried about this. I started bugging my doctor in about year 2002 that something was not right; and, I thought it might be my thyroid. It’s a shame. . . all those symptoms and not getting treatment until late 2010. Early last year, I had the classic ankle swelling and eyelid retraction; but, the doctor only concentrated on the ankles. Couldn’t find a reason for the swelling and said that I must have overloaded my kidneys with salt (I don’t salt food or cook with salt). Luckily, mid-year, I went to donate blood on a Saturday morning. They told me my heart rate was too high and to have a doctor check it out. By that Sunday night at bedtime, my heart fluctuated between 120 – 136 bpm resting.

But, I could go on and on about all that. I worry about the lasting congnitive affects. Could there be long term heart and bone consequences? Etc.

If you find any good resources for answers, please post.

Michele

[SallyB62]

in reply to: Post-Thyroidectomy Antibody Levels #1062035

Thank you Bobbi for replying to my post.

Does this mean that I may still produce these antibodies without the thyroid present to stimulate their production? This is how my endo convinced me that the entire thyroid needed to be taken out. The endo said that my eyes would keep getting worse, and I could eventually go blind. I have the eyelid retraction with no protrusion or pressure build up. Granted, some days it looks like I was born without eyelids when they are retracted back into my head.

Do I still need to be tested periodically for eye involvement incase the antibodies are still present and may be attacking the eye area?

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