[jewels1]

#1059783

Hello All,

I had a total thyroidectomy in December 2012. Prior to my thyroidectomy, my TSI was in the 400 range. After the surgery, my thyroid function came back with normal results but we did not retest TSI.

I just got another lab work done in March 2013 and my results are as follows:
TSH – 0.05
Free T4 – 1.4
Free T3 – 3.3
TSI – 728 (high)
Thyroglobulin Antibodies – <20 (normal)
Thyroid Peroxidas antibodies – 21 (normal).

I’m not sure why my antibodies actually increased!? My endocronologist said it looks like I’m going hyperthyroid (even though I’m on a low dose of levoxyl (0.088 mcg). Do any of you have any advice as well?

Also, I was thinking of trying for pregnancy in the coming months, but with a sudden spike in TSI, this may increase the risk in passing down to the baby?

Thank you!

[vanillasky]

#1177471

For what it is worth, my endo told me once a thyroid is removed or ablated, antibodies last for decades. I don’t know if he was exaggerating or not.

[Kimberly]

#1177472

Hello – I haven’t seen any studies specific to TSI and surgery, but there was a study from a few years ago that looked at TRAb (which catches both blocking and stimulating antibodies) post-treatment. In this particular study, it took one year for 70% of the patients treated with surgery to achieve negative TRAb levels; after two years, this went up to 80%.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.eje-online.org/content/158/1/69.long

Being either hyper or hypo can be dangerous for both mother and baby, so it’s definitely important to get your labs to where they are normal *and* stable before trying to conceive. Also, as you noted, it is possible for Graves’ antibodies to be passed on to a fetus. The latest medical guidance recommends testing TRAb at 20-24 weeks for pregnant women with a history of Graves’, with referral to a maternal-fetal specialist if antibody levels are excessively high.

Take care!

[jaqeinquotation]

#1177473

hi all,

I had TT almost 3 months ago. I’ve done lab work once since then and scheduled for another one in a few weeks. My issue is my endo will not test for TSI, Thyroglobulin Antibodies or Thyroid Peroxidas Antibodies. He and my family physician both feel testing for it is not “important”. I’ve never had my TSI etc. tested.

Any suggestions on how to get the endo and physician to see the importance of these tests??

[adenure]

#1177474

I can see why doctors don’t want to test antibodies. From what I understand, the testing is expensive (especially TSI) and I don’t know that anything is done regarding the result- whether positive or negative. I know it’s used to diagnosis Graves initially, but I don’t know that it’s used for much else. Even with high antibodies (if your thyroid has been removed for example), what can you do about it? You know what I mean? I haven’t had my antibodies tested since surgery, although I’m curious. I could see maybe if someone wanted to get pregnant or was pregnant to see where the antibody levels are at bc of the risk for the baby, but for the rest of us, I think it would be hard to convince doctors to do the labs.

[Naisly]

#1177475

Hi there,

High TSI is to be expected after a TT or RAI. I think this is important to know, for the reason TSI can cause TED to flair or skin issues. And the best remedy for this is to stay away from stimulants that would effect your immune system.

And for jaqeinquotation I think it is fair to say, since you are having issues with TED, I would ask, for the purpose of ‘knowing is half the battle’ because once you see those numbers on a physical piece of paper, it might help you to stay away from such stimulants – You can read here what I wrote on the subject.

As far as cost, it is about $70-$78 so I guess it is just in prospective on whether it is expensive or not. (I looked up on-line at some of your labs there in the US)

[Kimberly]

#1177476

@jaqeinquotation – You would probably have the best luck on a TSI test with your ophthalmologist, as some (but not all) use this test to help determine whether you are in the “cold” phase.

I think the last time I had TSI done, it was around $300, but I know that you are on a different medical system (and currency)!

[Naisly]

#1177477

Wow Kimberly, $300 is quite a lot, when did you have it done? Because I found a lab that does them for $95 LabTestPortal(2500 US locations)

Here is Canada, we don’t pay for our labs, they come with our medicare.

jaqeinquotation
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2265.2000.00959.x/abstract
http://www.ncbi.nlm.nih.gov/pubmed/22435785

[adenure]

#1177478

I hear what you’re saying, Naisly. But, from a doctor’s point of view, there’s nothing they can do. I think they tend to order labs where a result will give them a path to follow (meds., some sort of treatment). I could see them saying that, regardless of TSI levels, there’s nothing they can do to change that. I guess avoiding environmental stimulants is something we should all do anyway. Stress is never good for the body- whether we have Graves or not. I try to be mindful of stress since going through all of this. I had a few warnings (getting sick with meningitis) from stress in the past, but I guess it took Graves to finally get me to listen! I would love to know my TSI level, but I don’t want to pay for it. If I ever have eye issues (knock on wood), then I’ll probably pay for it to see (like Kimberly said) what phase I would be in or if I ever got pregnant, I’d want to know too. Although, we have 4 boys and are not planning on having anymore since I got Graves after my 4th was born. Just too much on the body I guess.

[Kimberly]

#1177479

Naisly wrote:

Wow Kimberly, $300 is quite a lot, when did you have it done?

I had a set done recently, but haven’t received the bill yet…the one before that was probably a year ago.

[jaqeinquotation]

#1177480

Thanks so much for the info/input everyone!!

I see the eye surgeon/Opthalmologist in May to discuss OD surgery etc etc…so I will request the TSI then…I’ll use the excuse that I want to be certain that I am in the cold phase (since I’m not so sure these days; my eyes still get red and watery)

Naisly, do you live in Canada?

[Stymie]

#1177481

Hi

I was just thinking today if I should have my TSI tested. I know many people here don’t see a point, but if the TSI is high its an indicator that graves is still active correct? And can still cause TED?

I’ve heard of some people going on a low dose of ATDs to reduce their TSI levels and try to prevent TED or even reduce symptoms of TED.

Anyone know anything about this?

Just one thing I’ve been curious about.

Di

[Kimberly]

#1177482

Stymie wrote:

I’ve heard of some people going on a low dose of ATDs to reduce their TSI levels and try to prevent TED or even reduce symptoms of TED.

Hello – I’ve not seen any research on this approach, but it would be worth asking a doctor about. Although ATDs might have a direct impact on the immune system, you would want to weigh the potential risk of side effects from starting on a drug that you don’t otherwise need. (As I recall, you are post-RAI, correct?)

One situation, though, where antibody testing is definitely recommended post-RAI is for women who are 20-24 weeks pregnant, as this helps to assess the risk of antibodies being passed on to the fetus. The latest medical guidance recommends testing TRAb vs. TSI, as TRAb picks up all antibody activity, not just those that specifically cause stimulation.

Hope this helps!

[Naisly]

#1177483

Quote:

Naisly, do you live in Canada?

Yes, I am in BC.

[jaqeinquotation]

#1177484

Im in Toronto:)

[Author]

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