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Old 02-02-2005, 02:25 PM   #1
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Graves info needed

Hi to all boardmembers, I had written a couple weeks ago, and have an update. Quick rundown:

- have had multinodular goiter for several years
- Dec. 04 presented with problems swallowing
- ultrasound reveals my nodules have grown, 2 significantly
- thyroid scan is "normal"
- bloodwork comes back saying "normal" t3 and t4, but TSH low
- sent to surgeon 1/14/05 and he is doing subtotal thyroidectomy
- surgeon says that I have thyroiditis
- surgeon does thyroid antibodies test and comes out very high he says
- family dr says she suspects graves
- surgeon says today he does not think its graves because my blood tests were normal???? not sure if he has correct labs
- saw family dr also today and she still is adamant that all my tests point to graves, especially the antibodies even though I told her that's not what the surgeon's opinion was.

I did not get the results of my bloodwork but on my surgery pre-op admitting form she filled out today (surgery is Feb 16--GACK!!) but on it it says the following for labs:

Thyroglobulin AB 154
Thyroid peroxidase AB>3000

Do these numbers represent something specific to Graves disease cuz she is so sure that's what I have, even though I suffer more hashimotos symptoms than graves. Anyone wanna offer me some clue as to what all this means? Any correlation with her opinion and knowing my family hx of sisters with lupus and MS?

Thanks in advance. Look forward to hearing from someone who might recognize these numbers.

 
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Old 02-02-2005, 04:27 PM   #2
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zekat HB User
Re: Graves info needed

If I am not mistaken, you really need to have an "uptake scan" done in order to 100% diagnose Graves disease. Many people can present with antibodies (even though some are more commen in Graves and others more commen in Hashimotos).

 
Old 02-02-2005, 04:33 PM   #3
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Re: Graves info needed

I was injected with the iodine stuff for the thyroid scan, is that what you mean? My doctor says it almost doesn't really matter because after my surgery, I will become hypothyroid anyways. Thanks for your comment!

 
Old 02-02-2005, 05:34 PM   #4
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Re: Graves info needed

A thyroid uptake and scan is not necessary to diagnose Graves (and it unnecessarily exposes us to ionizing radiation).

Thyroid Stimulating Immunoglobulin (TSI) antibody test is the definitive test for Graves disease.

Thyroid Perioxidase (TPO) antibodies, which you had done, is the test for diagnosing Hashimoto's Thyroiditis (though many Graves patients have positive TPO, but in low numbers - high numbers (like yours) are seen in Hashi's).

Hashi's is autoimmune HYPOthyroidism.
Graves is autoimmune HYPERthyroidism.

So, I'd say the jury is still out on what you have. I would want a TSI test if I were you. When they take your thyroid out they will send it to pathology and they can conclusively tell you if you have Hashi's.
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Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 02-02-2005, 07:03 PM   #5
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Re: Graves info needed

Thanks a lot for that info. I know that they will be sending my parts to pathology, and we'll see what they find from that. I am going to be so grateful when this gets out, I'm so sick of this huge lump in my throat when I swallow.

I know there were a few antibody tests, the ones not normally done when they do a regular thyroid screen. These had to be sent in a special batch because of the costs. I am not sure of the actual name of the blood tests they did, it was done right when I had my consultation with the surgeon. Whatever the case may be, anything has got to be better than what I am feeling!! I'm sure I'm not the only one who has felt and feeling like this. Only 2 more weeks till it's slice n dice day!

 
Old 02-02-2005, 07:28 PM   #6
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Re: Graves info needed

The TSI test is highly specialized and is often sent off to a specialty lab. Mine are sent to Quest Nichols Institute in San Juan Capistrano, CA. So perhaps they are doing this test. The results usually take about 8-10 days.

Good luck!
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 02-03-2005, 06:11 AM   #7
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Re: Graves info needed

I'm in Saskatchewan Canada, and the tests were sent to the provincial lab because of the expense and they are sent in batches, once they get enough to do, they do them all at one time. They are all completed, however, they may do more testing while I'm in the hospital. I have been told I'll be there for a few days. I know they are taking out 2 of my parathyroids, and surgeon said yesterday that he is leaving 2 very small pieces of my thyroid where my other 2 parathyroids are embedded so as to preserve them. He said he is making sure that he takes extra special care with them. I sure hope they don't get damaged, cuz I'll only have 2 of the 4 left. I am a little freaked out about having the calcium problems and I am hoping they do some kind of tests on the function of those while I'm at the hospital. I don't know what to expect for symtoms of malfunction, so I hope they don't mess up! I do have one of the best surgeons in the city doing my surgery, so I am at ease about it for the most part.

 
Old 02-03-2005, 06:32 AM   #8
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Re: Graves info needed

Why is your doc removing your parathyroid glands? Did you have a problem with your calcium levels? That seems a little odd.

Also, how long have you had a problem with your thyroid? Im curious cause you sound a lot like me. I am hoping to just get my thyroid removed already but cant seem to get anyone to do it. My neck is swollen up like a frog...really bugging me and then out of nowhere this thing shrinks down quickly and I seem to turn hyper.

 
Old 02-03-2005, 07:08 AM   #9
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Re: Graves info needed

I'm not sure why he's removing 2 of them, I am assuming it's because they are too difficult to save. He didn't come out and say that is what he's doing but on my surgery admitting form, it says partial parathyroidectomy and partial thyroidectomy.

My thyroid has been giving me problems only since December...that is when I had a huge lump in my throat, felt i was always choking. But I have had goiter for several years and it remained unchanged until recently. I have also never had any abnormal blood test results, everything has always been a-ok. I can't wait to get this out because it is hard to swallow and it's very swollen.

The swelling you are feeling that comes and goes it most likely the auto-immune aspect of it, as it will be under attack and swell from it. That's what happened to me. You could see my thyroid from across the street!! LOL It is still large, and some days are better than others when I have a really huge lump and then barely noticeable the next day. I also find if I dont get enough sleep, it really acts up...not sure if that's related but it is what I've noticed.

 
Old 02-03-2005, 08:58 AM   #10
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Re: Graves info needed

Hi Skewch,

I just wanted to say hi from a fellow Saskatchewanite (is that even a word?). I have recently been diagnosed with hyperthyroidsim and am waiting to see an endo in Regina. From what I've been reading, I suspect I have Graves as well. Are your eyes affected at all? Mine bother me (feeling of pressure, blurred vision) but they aren't bulging. I too have been experiencing that choking/pressure feeling in the throat. Very annoying and scary! What was that thyroid scan like that you had? I'm anxious to see the endo but somewhat apprehensive about the testing process.

I hope everything goes well with your upcoming surgery.

 
Old 02-03-2005, 01:03 PM   #11
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Re: Graves info needed

LaurenRae,

The scan was a piece of cake..they inject you at the hospital Nuclear Medicine, and they you wait 20 mins for it to work and then you lay on a metal bed and can't move and you have this round camera (quite large) over your face...if you're at all closterphobic (sp??) you may not enjoy it!! other than that, it's painless.

BTW off topic, I was born and raised in Regina, but live in S'toon for past 9 years almost. My family Dr. was also born and raised in Regina, and attended high school with my older sister and lived in our area of town, so she knows allllllll about my family hx.

 
Old 02-03-2005, 05:16 PM   #12
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Re: Graves info needed

That is totally wild about the sleep. I thought I was the only one. When I only get a couple of hours of sleep, my thyroid goes nuts the next day as well.

 
Old 02-18-2005, 08:48 PM   #13
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Re: Graves info needed

Hi Sasks Folks. Winnipeg, Manitoba here.

I've been hyperthyroid due to Graves since 1996. I went on Tapazole for about 18 months, which did the job as I went into remission. That lasted until 2001, when hyper kicked-in again. Things got back under control with Tapazole, and I've been on a low dose (5 mg/day) for the last 18 months or so.

Don't worry about the thyroid uptake.

Seems like most of the Graves' sufferers are female. I'm a 43-year-old male. Any other male with Graves' out there?

 
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