[Carito71]

#1059494

Hello everyone,

Have been absent for a few weeks. I hope everyone is doing better and getting the answers they need to get better

On my last post I left a message commenting that my Endo had asked me to stop the Methimazole for 5 days and then start it back at 5mg. I had an appt shortly after that and at the appt he asked me to completely stop the Methimazole. I was very afraid of doing so but my TSH was very elevated and my WBC were starting to get low. To make the story short, it has been a month since then and I just had labs done in preparation for my next appt.

I’m writing because I’m very very confused about my results. Let me first share with you my lab history and I’ll follow that with an explanation as to why I’m confused.

Here is my lab history:
08/09/12 Taking 30mg/day
TSH … 1.65 (normal 0.27-4.20) (low of normal)
fT4 … 0.53 (normal is 0.8-1.70) (low)

09/14/12 Taking 10mg/day
TSH … 8.71 (normal 0.27-4.20) (high)
fT4 … 0.68 (normal is 0.8-1.70) (low but closer to normal)

11/8/12 Not taking Methimazole for a month
TSH … 0.12 (normal 0.27-4.20) (low)
fT4 … 1.22 (normal is 0.8-1.70) (normal)
TSI … FALSE

I’m confused because my TSH is low yet my fT4 is normal.

I’m also confused because my TSI is “FALSE”. I wasn’t given a # for the TSI and “FALSE” means that it is normal. Or at least that is what it means for all of my lab results with #s right next to them. So, I’m thinking the TSI is normal, probably less than 139%. I’m also confused b/c I was thinking that the TSI would be elevated for a long time. It was 237% 5 months ago when I got sick.

Has anyone here had a similar experience with the TSI? I was under the impression that it was very hard for the TSI to become normal or go away. I’m afraid that my lab result is wrong. What are your thoughts/opinions? Please help me. I want to be well but in all reality, I still feel tired at times and I’m still taking a beta blocker because my heart stays at a normal range with it (haven’t tried discontinuing it). I’m very scared of going HyperThyroid again.

Your comments are appreciated.

Caro

[Kimberly]

#1175104

Hello – I’m not familiar with the “False” TSI reading. I would definitely check with your doctor’s office on this. My TSI has been elevated for the last several years. If yours has indeed gone back down, that is a good thing, but it would probably give you some peace of mind to know what the specific number was!

As for potentially going hypER again, definitely keep close tabs on how you feel…and if you notice those classic symptoms coming back, definitely call your doc’s office ASAP to get a new set of labs done.

Take care!

[vanillasky]

#1175105

My TSI right now is 800

In the past, it was 174

They flag anything >150 as positive for Graves at the lab I go to

TSH is 0.56 their range: .40-4.50

However my FT4 is normal range! Very confusing but if he says I have Graves, I guess I do!

[Carito71]

#1175106

Hello Kimberly. Thank you for your response.

Can I ask you a question. Has your TSI gotten lower? I know you said it has been elevated but has it decreased, increased, or stayed the same? I really would like to know what causes the TSI changes.

My labs have a column that is titled “Abnormal” and it is populated with either “FALSE” or “TRUE”. All of my labs that have a result within the normal range say “FALSE”. Anything outside the normal range says “TRUE”. I’m thinking that therefore, the TSI might be <139% but I wasn't given a # for it. I'm seeing my Dr soon and I will ask him about the #. Hopefully he has more information. He might have the same thing as me. I might have to go straight to the lab where I had it done. I would like to have the # to compare things. The bad thing is that I have only had it done 3 times. Twice when I first got sick and each time at different labs so the ranges don't match at all. And the 3rd time was done at the same place as the first one but instead of getting a # like I did with the 1st lab, they gave me a "FALSE" So, I can’t really compare the results.

I hope that the TSI has gone down. From what I have read though, it is hard to make it go down so I’m thinking that maybe the TSI result might be an error. You have been here for a while and might have read similar cases. Is it possible for the TSI to go down after 5 months? I was under the impression that it would stay up for years. Do you know if once it is down, can it go back up?

The TSI is such an interesting thing. What makes it go away anyway? That is the million dollar question, right? I haven’t been euthyroid so maybe not that. On the contrary, I was hypo for a while b/c I was put on a high dose of Methimazole. Maybe the Methimazole?

Anaway … thank you for reading me and for your help.

Be well,
Caro

[Carito71]

#1175107

Hello vanillasky. Thank you for reading my post and for your response.

I’ve been told that if the TSI is elevated that then one has Graves. TSI of 800 with normal being <150 seems high.

Your TSH is within normal range even though it is on the low side of normal. But I see what you are saying. It is very similar to mine. Low TSH, normal fT4.

I too was told I have GD b/c my TSI was 237% 5 months ago. If it indeed is within the normal range now, I wonder how I will be categorized.

Hope your TSI starts lowering soon.

Thanks again.
Caro

[Bobbi]

#1175108

It might be helpful to go to the Mayo Clinic website discussion of TSI and carefully read it. It might dispell some of the confusion. Or not. I will fully admit that I could not wrap my mind around all of it. But what I did understand indicates that we patients should be very careful of making assumptions about what such a test (and all of our tests) show or do not show.

I will point out two comments from the site. First (and these are in my own words, more or less): An elevated TSI at the end of a course of ATDs is highly predictive of relapse. Ok. That seems straightforward. But then there was the “But.” But, conversely, a normal TSI index is NOT predictive of prolonged remission.

I suspect this goes back to something my endo told me when I asked her why she was not routinely testing my antibody levels. Her response was that antibody levels rise and fall for no well-understood reason. So having normal levels of antibodies at one point in time does not mean that those normal levels will continue. And, inasmuch as there’s almost nothing to be done to control those levels, it’s all a crap shoot.

And the other item from that Mayo website that I think all of us should keep in mind was a caution: Positive results of the TSI test are strongly indicative of GRAVES, but do not always correlate with the presence or severity of HYPERTHYROIDISM. In other words, the TSI test doesn’t show if you are sick, or how sick, well, or how well. Your doctor will rely on other tests to determine that.

[Kimberly]

#1175109

Hi Caro – This is the link that Bobbi mentioned:

http://www.mayomedicallaboratories.com/test-catalog/print/8634

My own TSI increased over a period of a couple of years, and it has not decreased.

As Bobbi said, it is not well understood why antibody levels rise and fall over time. For patients who go into remission on anti-thyroid drugs, there is actually some controversy over whether the ATDs themselves had a direct impact on the immune system, or whether the fact that thyroid hormone levels had been stabilized had a positive impact on antibody production. There have been studies that seem to support each viewpoint.

As you said – figuring out how to lower antibody levels is the million-dollar question…but so far, researchers haven’t been able to come up with a satisfactory answer. There are very powerful drugs out there (with serious side effects) that suppress the *entire* immune system, but doctors haven’t figured out how to selectively target the antibodies responsible for Graves’.

[Carito71]

#1175110

Bobbi, Kimberly,
Thank you both for your responses and for the information. I just finished reading the link you provided. Very informative. Thank you.

Well, I have bad news. I saw my Dr. and he showed me the labs. The “FALSE” was an error. My TSI is still elevated, though it is less than it was 5 months ago. It was 4.5 and it is now 3.2. I guess the good news is that it is lower and the bad news is that it is still elevated and not below the 139% or 1.3.

From what I gather, there are two ways of getting results. One of them is a percentage and one is a decimal #. Mayo Clinic has the decimal # range (< or = 1.3) and LabCorp has the % (< 139%). Do you know how to convert from one to the other? My Dr. told me that it was possible but didn't really explained how. He did say that my TSI of 3.2 (from Mayo Clinic) was more than 200%. As I mentioned above, I have had my TSI tested 3 times. When I was first diagnosed it was 4.5, later on it was 237%, and now it is 3.2. Thank you again,
Caro

[Kimberly]

#1175111

Hi Caro – Normally, you could just convert a decimal to a percentage by moving the decimal over two spaces to the right…so 1.39 in decimal form would be 139 in % form.

However, from your doctor’s comments, it sounds like these might be two *completely* different calculations, so it might not be possible to translate from one to the other.

Take care!

[Carito71]

#1175112

Hello Kimberly.

Yes, that is exactly what I thought too but its not that simple it seems like.

I also tried calculating things the algebra way using the 139% and the 1.3 but that too doesn’t work.

If 139% = 1.3, what does 3.2
1.3x = 139*3.2
x = 444.8/1.3
x = 342%

342% is more than 200% but when I had my first two test done, they were done days apart and 4.5 was one result and 237% was the other. I’m therefore thinking that 4.5 is some where close to 237%. If so, I’m thinking that 3.2 has to be between 200% and 237%. Oh well, I really would like to know but it is not extremely necessary. I’ll do some more research. It seems that here everyone is getting their TSI results in % form.

Thank you again.

Caro

[Author]

Posts