[KatyPop]

#1060173

Dear Everyone-
I am new to the forum, and could use some support & would like to talk to kindred spirits!

I was diagnosed with Grave’s a year ago, kept getting better on the methimazole, and we dropped it to 2.5mg/day.

I went off it entirely 2 weeks ago.
One week ago I got my antibodies checked, hoping for good news, but it was pretty crushing. They were over 600. And my TSH had dropped to .22 (range: 0.34 – 4.82 uIU/mL) from being normal. T3 and T4 both jumped to high normal. I was feeling pretty good, but the high antibodies scared me.

Did anyone have this experience? How did it go for you? What did you try to help yourself go into remission?
How are you doing now? I would love to hear some real-world experience. I am trying so hard to have hope.

Thank you— looking forward to hearing from someone…
Katy

[npatterson]

#1180965

Dear Katy,

Welcome! You will find many warm hearts here, and many who have been through your experiences. Thankfully, there are two other treatments available to you. However, remember that NOT TREATING is NOT AN OPTION.

Take care,

Nancy

[snelsen]

#1180964

Well, I think there are three options available to you, and you are familiar with ATD’s. From what i have learned on this forum, maybe the issue for you here is that you need to continue on ATD’s.

From what I understand, remission is rare. And we always have Graves’
How do you feel? I realize you said you were feeling good, but ae you continuing to feel good as you are farther away from taking methimazole?
You might have been feeling good because you were on this ATD.

Kimberly is quite knowledgable about continuing treatment of Graves’s with ATD’s.

Had you had an antibody test in the past, or is this the first one? My understand is that antibody levels can stay high for years, but I am not sure about this.
Shirley

[KatyPop]

#1180966

Dear Shirley and Nancy-
Thank you so much for responding so soon! And for your kindness.
Perhaps it is too soon to really tell. I’m getting bloodwork every two weeks, because I responded so well to the methimazole that I went to hypo on a high dose, so we had to keep monitoring. Boy did I get woozy on 40mg!

I have been reading about Dr. Dean Ornish, and how he designed a program clinically proven to reverse (not just slow down) heart disease. It worked so well that health insurance companies now back it. And it has been working for years. He is trying this program now with prostate cancer. And there is some evidence that this program can also help with other kinds of disease (for example auto-immune disease).

I think I am going to try it. Anything to lower those antibodies!
I haven’t very much experience with Graves’, but I will also try to answer other’s posts– if I can help, I will!
Katy

[Ski]

#1180968

Hi KatyPop,

I understand that remission is harder to attain when antibody levels are high — they wax and wane for reasons no one can fully explain yet — so it might have been a good idea to test those levels before you went off the ATDs completely.

The truth is that remission is defined as a period of time longer than one year when your levels have remained steady without any medication whatsoever, so you have not really experienced any remission, yet.

Still, long term management of thyroid hormone levels using small doses of ATDs is gaining traction, and can be a perfect treatment choice for many.

Bottom line is: stable, normal, thyroid hormone levels.

Abnormal thyroid hormone levels MUST be brought into the normal range, or you risk all kinds of issues, so just keep that as your baseline requirement going forward…

[KatyPop]

#1180969

Thank you thank you thank you Ski, For such a sound and pragmatic response– This makes me a little less worried, to hear the antibody levels can bounce around. And yes, I wish we had checked them before I went off ATD, but I had to strong-arm my endo just for this. He hates to check antibodies, claiming we only need to know that they exist.

I will focus on normal T levels going forward. Keeping fingers crossed; blood work coming up next weekend. And a lot can happen in a year. I have read about small maintenance doses of ATDs working too! So there is still room to make adjustments.

And I appreciate your mention of the bottom line. This disease really scared me, and I forgot that there are simple, straightforward goals to focus on. Much better than focusing on the crazy stuff I can’t control.

Thank you again.
Katy

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