[snelsen]

#1061421

HI, yes, it is common to have a high TSI with Graves’. And, just checking back in the search engine just for a few seconds, I found a post from someone with a TSI of 5735.
In summary, it means you have an autoimmune condition called graves’ The TSI gets whacky and tells the thyroid gland to go crazy and produce enough thyroxine for the whole neighborhood! Well what I mean is, TOO MUCH, and you already know that..

Some doctors think that it MIGHT be helpful in following the progression of TED. Probably more doctors do not feel that it helpful for treatment decisions, relating to the active and inactive phase of TED. What I mean by that is, if a person has TED, and their TSI is going down, but they know their eyes are changing every week, and the measurements are changing frequently as well, a lower TSI is not a reason to proceed with all the surgical procedures that are not indicated when the patient is still in the active phase.
And here is a short conversation about it from an NIH website. Basically, don’t worry about it, if you are super worried, call and leave a message with your concern before your appointment. If you can wait until your appointment, put that on your list of things to discuss.

I put the sentence in bold that addresses this.

NIH-Graves’ disease is an autoimmune disorder, meaning the body’s immune system acts against its own healthy cells and tissues. In Graves’ disease, the immune system makes antibodies called thyroid-stimulating immunoglobulin (TSI) that attach to thyroid cells. TSI mimics the action of TSH and stimulates the thyroid to make too much thyroid hormone. Sometimes the antibodies can instead block thyroid hormone production, leading to a confusing clinical picture. The diagnosis and treatment of Graves’ disease is often performed by an endocrinologistóa doctor who specializes in the body’s hormone-secreting glands.

[mom2pups]

#1061422

Oh, thank u for responding. I obviously was picking the wrong posts to read abt high TSI’s. Definitely never saw the one over 5,000!

I feel MUCH better now, thank u. Now I can def wait until my appt.

I am thankfully lucky and have no signs of TED. I am lucky though that I already have a relationship with an opthamologist since I have High Intraocular pressure. I had a recent appt and she saw no signs of TED. She did several measurements though so she has a baseline if I start having issues.

I read something that I’m not sure if I processed it correctly (my processor is on pause most of the time anymore!)at one point related to TSI – that with high TSI’s it can be a measure of whether ATD’s will be effective?

Thanks!

[snelsen]

#1061423

Short answer? No. Not relevant. The ADT’S (and beta blockers for too fast heart rate and other cardiac stuff associated with too much thyroxine circulating) are to put a brake on the crazy production of thyroid hormone. And the symptoms, and move toward being in a normal state, so you can decide a further treatment plan. The super important stuff when taking ATD;s are:-
1.reporting your symptoms and changes
2. and frequent labs TSH, T3 AND T4. and Liver function studies.
Keeping in good touch with your endo.
When you see your endo, you discuss this, too, for clarification.
Shirley

[mom2pups]

#1017878

I just got copies of my latest thyroid labs. With Cleveland Clinic the lab results are sent directly to something called "MyChart" and I get an email and then can access them. This can be good…and bad… since u see results before ur doc or nurse has called. I am normally cool abt results though since I have a general idea of where they would be since I have GD. This time though I am just a teensy bit surprised…OK…shocked by the results.

First of all I will def talk with the endo abt these, but since all thyroid tests except the TSI and microsomal were in when my doc called me last week, I am doubtful he will call again with these results. So I won’t be seeing him for a few more weeks.

So, my curiosity is just if others have had this high of a TSI.

TSI- 3118 (<150)

ummm yes that is over three thousand-is that just typical for GD? I read some archives but didn’t see where others talked abt TSI’s over 300-but that was just a couple people.
The tests were done 10 days after I started the Methimazole (the other doc hadn’t done a baseline before that)-I don’t know if that make a difference with the TSI?

Totally not worried…much. LOL.

P.S. off Tapazole for 5 days now. I was supposed to start the PTU this past Friday, but must have been a miscommunication becuz my pharmacy didn’t get any script from them.

Thanks,
Cindy

Oh another note

[Kimberly]

#1061424

Hello – There are potentially a few uses for antibody testing, in addition to making an initial diagnosis.

You are starting to see more doctors utilize antibody testing with ATDs to determine the appropriate timing for weaning *off* the drug. If your doc takes you off the meds while your antibodies are still raging, you will almost certainly go hypER again.

As for antibody testing and TED, there is actually some controversy in the medical community as to whether this is helpful in determining whether the patient is in the “cold phase”. Many docs believe this is useful, although as Shirley mentioned, you certainly have to use some common sense and give more weight to the patient’s actual symptoms!

Also, at our most recent conference, one of the presenters mentioned that having high antibody levels is one of the risk factors associated with a worsening of TED symptoms after RAI. (Other risk factors are extremely high T3 at diagnosis, smoking, being allowed to go too hypo after treatment, and pre-existing significant TED symptoms). Patients with these risk factors who choose RAI as their treatment option will want to speak to their doctors about the risks and benefits of taking a course of steroids along with the RAI therapy.

[SallyB62]

#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?

[Krisann79]

#1061426

I 2nd that. I didn’t have TT I did RAI but I too am having TED issues only AFTER my RAI. So I wonder about this……

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