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Old 05-25-2004, 10:55 AM   #1
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Angry My Thyroid Scan and Uptake (TSH <0.01)

Ok, I had part two of my thryroid scan and uptake. Well, I left the office ready to cry. Not because I got some really bad news but because I got contradictions and confusion! Well, the Resident who gave me the radioactive pill yesterday did not do the uptake part (measurements after 2 hours). The Tech who did, did not place the equipment as close to me as he did today. So I asked him if the comparison would be valid since he placed the equipment on my skin (a lot closer than she had). Well, he said he was doing it the right way and that's all that matters. Well of course, the uptake showed me "slightly" hyerT (23% - should be at or below 22%) Well, then comes the scan. After many xrays, they called the Radiologist in (the dr who examed and interviewed me prior to the tests). He said that based on my labs (TSH <0.01), the xrays and his exam, I am definitely hyperT. He also asked the Redident if the uptake had been performed correctly since it was the only thing indicating my condition wasn't "that serious". The Resident, of course, stressed that his portion of the study was done correctly. Well, they took another xray of my thyroid from a distance and sent me home. I wanted to cry. The whole time I had tremors and muscle twitches. So I asked the Resident, why was I having them and he said, "It's because of your thyroid condition". I wanted to scream! Well, my mom, who had to have her thyroid removed (grew to the size of a grapefruit) works at Johns Hopkins Hospital and got the surgeon who removed her thyroid to talk to me. He says it sounds like Graves Disease. I don't know what to do. My TSH was performed a month ago. I just want to get treatment for whatever this is. I am only 31 but I feel like I am living in 65 year old's body.

 
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Old 05-25-2004, 11:13 AM   #2
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Re: My Thyroid Scan and Uptake (TSH <0.01)

The good news is that it sounds like you're getting somewhere at least. It definitely sounds like you're at least hyperT. What kind of bloodwork have you had and what were the results? I had the scan recently and mine came back with normal results... even though I have 2 nodules. Did you get your antibodies tested? I think that TSI antibodies are an indicator of Graves. Also, do you have eye issues?

 
Old 05-25-2004, 11:15 AM   #3
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Re: My Thyroid Scan and Uptake (TSH <0.01)

The good news is that it sounds like you're getting somewhere at least. It definitely sounds like you're at least hyperT. What kind of bloodwork have you had and what were the results? I had the scan recently and mine came back with normal results... even though I have 2 nodules. Did you get your antibodies tested? I think that TSI antibodies are an indicator of Graves. Also, do you have eye issues? I've been saying that I'm 33 and feel like I'm in an 80 year old's body.

 
Old 05-25-2004, 06:08 PM   #4
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Re: My Thyroid Scan and Uptake (TSH <0.01)

Graves disease can easily be confirmed by a TSI antibody test (Thyroid Stimulating Immunoglobulins). TSI are the cause of Graves disease. Normal people do not have any TSI.

Do yourself a HUGE favor....get the book "Thyroid for Dummies" by Dr. Alan Rubin and read up on the chapters on hyperthyroidism and Graves disease. Believe it or not, a majority of the medical profession does not quite understand Graves or autoimmune thyroid diseases. To insure that you know your treatment options and that you UNDERSTAND what you are getting into you need to educate yourself. Don't trust anyone...learn it for yourself first. Make your treatment decision based on your knowledge and what you feel is right for you.

Anti-thyroid medications like Tapazole, methimazole or PTU can help reduce your hyper thyroid levels while you take some time to sort things out and learn about Graves.

Best of luck to you!
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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 05-26-2004, 04:55 AM   #5
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Unhappy Re: My Thyroid Scan and Uptake (TSH <0.01)

Thank you. The only blood work I have had thus far is the TSH. The result was <0.01. There was a heated discussion among the drs when I had the scan and uptake but neither would tell me anything exactly. The only thing I got out the conversation was that the scan showed my thyroid is hyper and the update was conflicting (only showed a very slight elevation but the Radiologist questioned if it had been done correctly). My appointment with the Endocrinologist isn't until June 24th. I will use the time before to read up on HyperT and Graves Disease. I assume that when I see the specialist I will get a full workup with labs.

 
Old 05-28-2004, 10:29 AM   #6
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Re: My Thyroid Scan and Uptake (TSH <0.01)

Blessed4Life...You sound just like me when I got my scan.

I had mine done April 20th and 21st, it was a 2 day scan and uptake. I was fine on the 20th when I got my pill...on the second though I was so sick and shaky. The tech told me to hold out my hand and it was shaking so much he reached out and grabed my hand and held. it. Asked me how long I have been like this and I told him not too long. He told me Good! They were alarmed at my heart rate and blood pressure though and were even going to admit me both were so high.

My results came back 2 days later and my uptake was 61% I saw the scans of my thyroid and my endo said it is "grossly enlarged". He also told me that I have Graves Disease. I was given three options, medicine that would only be 50% effective and take a while to take effect, radioiodine or surgery. He said no to medication because he thought my case was so severe and that left me with surgery or radioiodine.

I didn't have to think twice, I knew I did not want surgery. I had my radioiodine treatment Wednesday. I am so sick right now...my head is aching, I am throwing up anything I eat or drink and my throat feels like it is on fire and a 5000lb elephant has its trunk wrapped around my neck.
My endo and the nuclear medicine doctors all told me that I will be getting worse before I get better...that for a while my sysmptoms of Hyper will be exagerated. And to expect more weightloss and I still have to take the heat medication my endo gave me. That will stop once I go back July 6th.

Is there any way you can get a sooner appt? Are you experiencing any heart problems or extreme weightloss? I feel like I am a 27 year old in a 60 year olds body too...
Keep us updated...

 
Old 05-28-2004, 02:59 PM   #7
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Re: My Thyroid Scan and Uptake (TSH <0.01)

Anti-thyroid medication is the quickest way to bring down high thyroid levels. Also, anti-thyroid medication is the only treatment option for Graves that does anything to reduce the antibodies that cause the disease.

When a patient is dosed and monitored properly the remission rate is much higher than 50%...the problem is most doctors in the USA like to kill the thyroid gland (which is NOT the cause of the disease) because it is easier for THEM to treat HYPOthyroid patients (not easier on the patient though - just read some of the hypo threads here).

Lauralee, the shaking that you had after the radioactive uptake and scan was probably due to the radioactive iodine you took to do the scan. Thyroid hormone is made out of iodine atoms....therefore when you ingest high doses of iodine your body makes more thyroid hormone.

Most doc's put patients on anti-thyroid meds to get their levels lower before they do the RAI. This helps to ward off a thyroid storm from dying thyroid cells.

The same goes for RAI ablation....as the radiation kills thyroid cells they release their stores of thyroid hormone making you MORE hyper. It is not normal after RAI to throw up and not be able to keep anything down. Sounds like you might have a case of radiation poisoning....CALL YOUR DOCTOR! They can put you on anti-thyroid medication to help prevent a possible thyroid storm.
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 05-29-2004, 07:06 AM   #8
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Re: My Thyroid Scan and Uptake (TSH <0.01)

Yesterday, I went to see my primary physician after my gyn called him to demand that he sqeeze me in. My blood pressure has risen a little but it is till good (it always was very low). My heart rate is good as well. He took some more blood because he wanted to be able to give the endo my labs prior to any meds. Thankfully he thought it was inappropriate to have me suffer a whole month without out meds. He gave me a betablocker (I think that is what he called it). I can't tell you the name since you know drs. write in a code only they can make out. I haven't lost a pound. I might feel better if I had. I actually have put on weight. My biggest complaints are fatigue, tremors, muslce pain, aches all over, headaches, rashes, irritability, mood swings, and fog. I feel like a crazy old lady!

My primary dr said he would have his assist work on getting me a sooner appt but he said it is very hard to get in to an endo. Just what I wanted to hear. Well, thank you. The good news is that since we caught this so early, my thyroid isn't very large and surgery probably won't be required.

 
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