Re: under eye twitching.../Elaine

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In a message dated 10/26/01 10:05:00 AM Central Daylight Time, daisyelaine@... writes:

Subj:Re: under eye twitching...

Date:10/26/01 10:05:00 AM Central Daylight Time

From:daisyelaine@...

Reply-to:hyperthyroidism

To:hyperthyroidism

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I still get eye twitching when my thyroid hormone levels are too high. That's my first clue.

Elaine, when you are hyper? thanks Kim

[Guest guest]

Hi Kim,

I'm hyper when I experiment with my dose of replacement hormone. What I've found is that when the level is too high my eyes twitch and my appetite increases so I eat more and gain weight.

When my level is too low I have sleep apnea. Finding an optimal dose is impossible because of my high levels of thyroid antibodies so I occasionally experiment since I can have levels done at work as needed.

[Guest guest]

Hi Arlene,

The article can be found at http://www.suite101.com/article.cfm/graves_disease/63859

You can also get good advice here from Mona, Zoey and AntJoan. They all managed to wean off ATDs successfully. Mona mentioned that dropping her dose slowly helped the most. When she tried to move things along too quickly she had a relapse. My article discusses the importance of antibody levels. Your TSI level should decrease when you're on ATD's indicating a good response to ATDs. As your level reaches the normal range you're in remission.

When people are taken off the drugs when their TSI levels are still elevated, permanent remission is unlikely. Good luck, elaine

[Guest guest]



Hi Arlene,

Elaine's article "Predicting Remission with ATD's" is at http://www.suite101.com/article.cfm/graves_disease/63859

Here is a quote from another souce.

http://www.postgradmed.com/issues/1999/10_15_99/felz.htm

The many 'faces' of Graves' disease

Part 2. Practical diagnostic testing and management options

W. Felz, MD; P. Stein, MD

"TSH suppression in patients with Graves' disease requires weeks to months to reverse. Therefore, total T4, not TSH, is the more useful indicator of treatment efficacy. For patients who elect to continue long-term antithyroid drug therapy because of the spontaneous remission rate of 10% to 25% per year for Graves' disease, a high initial TSIg level or AMA or anti-TPO titer predicts medical failure. In addition, a persistently high or rising AMA or anti-TPO titer or TSIg level after 12 to 18 months of drug therapy is associated with a high risk of relapse.

Diminishing or negative titers of autoimmune markers predict successful antithyroid therapy or spontaneous remission of Graves' disease. All patients on long-term regimens must be monitored for hypothyroidism. A rise in TSH above 6 micro IU/mL necessitates dosage reduction or discontinuation of antithyroid drugs or institution of levothyroxine sodium therapy to return TSH levels to normal."

Happy reading

Re: under eye twitching.../ElaineIn a message dated 10/26/01 10:05:00 AM Central Daylight Time, daisyelaine@... writes:

Subj:Re: under eye twitching... Date:10/26/01 10:05:00 AM Central Daylight TimeFrom:daisyelaine@...Reply-to:hyperthyroidism To:hyperthyroidism Sent from the Internet I still get eye twitching when my thyroid hormone levels are too high. That's my first clue. Elaine, when you are hyper? thanks Kim

[Guest guest]

Elaine,

I have been trying to find your article on remission of Graves' on Suite 101. Can you tell me where to search for it? I am now down to 50 mg. PTU and hopefully will be going lower and lower and need all the help I can get at this point.

Thanks bunches for all your continued help!

Arlene in CA

Re: under eye twitching.../ElaineIn a message dated 10/26/01 10:05:00 AM Central Daylight Time, daisyelaine@... writes:

Subj:Re: under eye twitching... Date:10/26/01 10:05:00 AM Central Daylight TimeFrom:daisyelaine@...Reply-to:hyperthyroidism To:hyperthyroidism Sent from the Internet I still get eye twitching when my thyroid hormone levels are too high. That's my first clue. Elaine, when you are hyper? thanks Kim

[Guest guest]

Hi Elaine,

Thanks so much for all your help. My latest blood tests (had to drag them out of the doctor's office!) were only for TSH & T4 (free). Since I am really pretty new at all this stuff, I can't even remember what TSI stands for, but will go to your sites today to check this out.

My latest tests show: TSH at 4.46 which I understand is right in the normal range. My T4 (free) shows .074 which is still slightly below normal.

Before this, I went from hyper to hypo around 6 weeks ago, and the doctor had not wanted to see me or have blood tests done for 6 months. When I finally got a blood test done, 3 months after my last test, and 3 weeks after I had requested it, my TSH was near 20 and my T4 was .4. I was still on 300 mg. PTU. It took me around 6 weeks to get to 50 mg. PTU, at which time I felt MUCH better, and this is where I am right now. I also got my health maintenance organization to agree to refer me to an endocrinologist. He wants me to stay at this dose of 50 mg. of PTU even though I am still a little low on my T4. I went from 100 mg. of PTU to 50 mg. 5 days prior to my blood test, but he felt that was not enough time to show any difference on my tests. I don't feel this way, and I think I will go down on the PTU to 25 mg. a day. (I have been at 50 mg. for two weeks now)

I am also going to go to your article on remission and study it and what had to write about remission, very carefully. I want to thank everyone, once more, on this list for helping and suppporting each of us who is going through these challenges with Graves'.

BTW, I never gained weight while I was on PTU and was within " normal " ranges of T4; however, when I went hypo, I had absolutely no energy. I would literally be sitting in a chair and by lunchtime I would be falling over from fatigue and could no longer exercise due to this fatigue. It was while I was in the 300-100 mg. of PTU range, and hypo that I QUICKLY put on 10 pounds, which I am now trying very hard to get off. I think I put on those 10 pounds within around 3 weeks. But I was so sick that I couldn't even care less. I had headaches every day, no energy, was freezing cold, and had aches and pains throughout my body. And my hair was totally falling out, once more, as well as being constipated badly. Yes, the gut gets bad, it seems when we are either too high or too low.

Thanks again, everyone on this list, for helping me out!

Arlene

Re: under eye twitching.../ElaineHi Arlene, The article can be found at http://www.suite101.com/article.cfm/graves_disease/63859 You can also get good advice here from Mona, Zoey and AntJoan. They all managed to wean off ATDs successfully. Mona mentioned that dropping her dose slowly helped the most. When she tried to move things along too quickly she had a relapse. My article discusses the importance of antibody levels. Your TSI level should decrease when you're on ATD's indicating a good response to ATDs. As your level reaches the normal range you're in remission. When people are taken off the drugs when their TSI levels are still elevated, permanent remission is unlikely. Good luck, elaine

[Guest guest]

Hi Arlene,

Those labs you mentioned suggest that you are hypo.

While it can take longer for the new dosage to reflect changes in your labs, they will go even lower. It's good that you're on top of things. After achieving remission, when your labs finally stabilize, most people feel best with a TSH level of around 0.4. Your TSH will be rising and not going down.

TSI, thyroid stimulating immunoglobulins, are the antibodies that cause hyperthyroidism. If these levels are still high, when you go off the drugs, the hyper symptoms can return. If these levels are low or normal, the hyper symptoms won't return when you quit taking the ATDs.

Of course, things can change later on but most people who achieve remission when their TSI levels are negative end up staying in remission.

[Guest guest]

Thanks Elaine, for your clear message.

I had my TPO done, in May, several months before I went hypo and it definitely showed immune problems (124). From what you are saying, I should definitely, absolutely make sure with one of my doctors that I am tested for the TSI to make sure it is within low/normal range. Thanks also for letting me know about my TSH still being a little high for feeling great (though it is within " Normal " range now, compared to the 20 it had been). I will watch that more carefully now, too. I get my blood re-tested in about one month.

BTW, to all of the other members on this list: My sister, who went through horrible Graves' around 25 years ago (she was on 63 PTU per day, and at one point was hospitalized), quickly went hypo and went from 30 PTU per day to almost nothing in a short period of time. This was before they knew about weaning you off this stuff sloooowly. She had problems with palpitations, etc., for a while after she was off the PTU, but has now been in remission/recovery for 25 years, so it is possible. But I wanted you all to know that she had these hyper symptoms as she was coming off the medication.

Thanks again, Elaine!

Arlene

Re: under eye twitching.../ElaineHi Arlene, Those labs you mentioned suggest that you are hypo. While it can take longer for the new dosage to reflect changes in your labs, they will go even lower. It's good that you're on top of things. After achieving remission, when your labs finally stabilize, most people feel best with a TSH level of around 0.4. Your TSH will be rising and not going down. TSI, thyroid stimulating immunoglobulins, are the antibodies that cause hyperthyroidism. If these levels are still high, when you go off the drugs, the hyper symptoms can return. If these levels are low or normal, the hyper symptoms won't return when you quit taking the ATDs. Of course, things can change later on but most people who achieve remission when their TSI levels are negative end up staying in remission.