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Old 08-22-2011, 09:16 AM   #1
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Post New thyroid patient with questions??

For years now I've had muscle weakness, sensitivity to heat, sweating like crazy, racing pulse, kidney infections bi-monthly or more, just general yucky feeling and super tired. Last week I went to my GP for yet another kidney infection and my dr noticed that my thyroid was HUGE. He sent me for lots of blood work and TSH and an ultrasound. My TSH was <.01 with range of .35 to 5.5 and the ultrasound showed alot of blood going to the thyroid. I went this morning for Ft3, FT4, and TPO. And I'm supposed to have RAI uptake and scan. Is the RAI uptake and scan necessary if the blood work shows something? I'm just afraid to swallow radiation and then get injected with it yikes!! I'm a 29 yr old female with 2 children 6 and 2 yrs old. My dr said he's worried that it's Grave's Disease. Don't know if it's because my thyroid is so big it's making it difficult to swallow. I just don't know. Worried and scared any insight would be much appreciated! Thanks in advance and I'm glad I found this board!!

 
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Old 08-22-2011, 09:22 AM   #2
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Re: New thyroid patient with questions??

Hi....sorry you are going through this! You need a test for TSI antibodies along with TPO. TSI will confirm Graves. Some recommend RAIU to rule out cancer but from everything I have read it is not necessary to diagnose Graves.

 
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Old 08-22-2011, 10:38 AM   #3
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Re: New thyroid patient with questions??

I know this is probably a silly question but what's the difference between TPO and TSI? What do they tell you?

 
Old 08-22-2011, 10:55 AM   #4
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Re: New thyroid patient with questions??

TPO and TSI are antibodies. Graves is an auto-immune disease and combined with TSI antibodies (thyroid stimulating immunoglobin) and causing the thyroid to produce too much thyroid hormone.
TPO antibodies, could be present with Graves, but they are not causing Graves (they are more important for Hashimoto which is on the other end of the spectrum causing hypothyroid (underactive) instead of hyperthyroid (overactive)

Last edited by lisa789; 08-22-2011 at 10:56 AM.

 
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Old 08-22-2011, 11:07 AM   #5
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Question Re: New thyroid patient with questions??

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Originally Posted by lisa789 View Post
TPO and TSI are antibodies. Graves is an auto-immune disease and combined with TSI antibodies (thyroid stimulating immunoglobin) and causing the thyroid to produce too much thyroid hormone.
TPO antibodies, could be present with Graves, but they are not causing Graves (they are more important for Hashimoto which is on the other end of the spectrum causing hypothyroid (underactive) instead of hyperthyroid (overactive)
Ok... So I need to request TSI. Would you guys recommend that a request a referral to an endo before I go forward with the RAI uptake and scan? I just want to handle this the best way possible and not waste time and money on useless tests or inept doctors. I can't wait to get a final diagnosis and get to feeling better. I would've never wanted to have such a serious medical problem but it feels good to be so close to beginning a solution. I do realize this can take years or forever to get straight but it will be nice to tell rude people that I shake because of my thyroid and no I don't need a drink Rrrr... ( I don't even drink for Pete's sake)!! I'm a smoker would it do my condition good to try to quit? I know it's bad for me but does it affect the thyroid?

 
Old 08-22-2011, 11:14 AM   #6
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Re: New thyroid patient with questions??

Hi...I think getting a referral would be a good thing. I would definitely get the TSI before doing the RAIU. Maybe also see if you can get an ultrasound to check for any hyper functioning nodules. A "normal" healthy person has less than 2% on the TSI. Even if your test comes back in range, it is not normal to have these antibodies. Don't worry about asking questions on here...no question is a silly question! Keep us posted.

 
Old 08-22-2011, 11:55 AM   #7
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Re: New thyroid patient with questions??

I had am ultrasound done and the only comment my dr made was that there was alot of blood flow to my thyroid and that it is severely enlarged.

 
Old 08-22-2011, 12:00 PM   #8
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Re: New thyroid patient with questions??

Sorry...I see you already wrote that! If there are no nodules and just enlarged with increased blood flow then I would guess that you are in fact dealing with Graves. So I would insist on the TSI and then try to get in with an endo.

 
Old 08-22-2011, 12:04 PM   #9
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Re: New thyroid patient with questions??

In addition to the TSI AB panel you should get the secondary graves antibody profile run as well. TRAB. If it is Graves four of six ladies in my family have two had the thyroid removed surgically with out RAI. Two tried the RAI route. Both ended up having there thyroids removed after multiple attempts to kill the thyroid with radiation.

Given RAI Treatment will mean you have to quarantine yourself from your kids for sometimes 2+ weeks. It is something to consider when treating Graves.

Good luck!
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Old 08-22-2011, 12:12 PM   #10
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Re: New thyroid patient with questions??

I almost forgot....you mentioned something about smoking. Smokers are at increased risk of developing Graves Eye Disease. Have you had any issues with your eyes? You might want to also get in with an opthamologist who has experience with Graves.

MKGBRK....it is good to see you back on here. I have read so many of your old posts and you have helped me tremendously!

 
Old 08-22-2011, 12:55 PM   #11
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Re: New thyroid patient with questions??

Wow!! You guys are helping so much but quite frankly I'm a little overwhelmed and it may be another symptom but I'm weepy ugh! So far no eye problems other than the glasses I've worn since 6th grade. If it is in fact Grave's and not just hyper do you have to kill or remove the thyroid to get better? This isn't the RAI treatment from what the person at the hospital told me (my dr gave no info just the orders) it's the RAI uptake with the scan. He said it's a small amount of radiation. I've heard that there is a risk of damage to the thyroid even with the small amount... Is that correct?

 
Old 08-22-2011, 01:38 PM   #12
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Re: New thyroid patient with questions??

I know it is easy to get overwhelmed with all of this info. You do not necessarily need RAI or surgery to get better. There is antithyroid medication that can be used to bring your thyroid levels under control. Many people use this medication for years and are able to achieve remission. Graves is an autoimmune disease which means that your body is producing antibodies that mistakenly begin targeting your own healthy organs/tissue. With Graves, the TSI antibodies target the thyroid by stimulating it and causing it to produce too much hormone. Those same antibodies are the ones that also cause Graves Eye Disease. It is good that you have no eye symptoms but it is something to be aware of and to watch for any changes. Yes RAIU and RAI are different in that RAIU is diagnostic and RAI is used to "kill off the thyroid".

 
Old 08-22-2011, 03:39 PM   #13
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Re: New thyroid patient with questions??

Remember I said six ladies have tested positive for Graves in my family? Four have had to have their thyroids removed due to nodules/ goiter issues and the fact that they didn't tolerate the anti-thyroid meds. That leaves two others. One aunt to this day is still using anti-thyroid meds and doing well. Hum that would be near 20 years for Aunt N. Now the other is me. I am a rarer case. I have both Graves and Hashimoto's. Graves over stimulates your thyroid and Hashimoto's kills it through kamikaze antibody attacks. It took five years for my body to destroy my thyroid, but it was quite effective doing it.

All of my family Graves suffers, except me. Tried the anti-thyroid meds first. With in a year or two they new if it was going to work or not. All those that have had to remove/kill the thyroid are strong advocates of surgical removal. The RAI's didn't work on us. One aunt tried it three times before a cancerous nodule resulted in surgical removal anyway. Ask around and do not be afraid of getting second opinions. The more information you have the better informed your decision will be.

Good luck and best wishes on getting the care you deserve.
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Old 08-22-2011, 03:54 PM   #14
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Wink Re: New thyroid patient with questions??

Quote:
Originally Posted by kbtaylor14 View Post
I almost forgot....you mentioned something about smoking. Smokers are at increased risk of developing Graves Eye Disease. Have you had any issues with your eyes? You might want to also get in with an opthamologist who has experience with Graves.

MKGBRK....it is good to see you back on here. I have read so many of your old posts and you have helped me tremendously!
Thank-you! I have been lurking, but unable to sit and reply often because of a new job and an active climbing 20 month old. I can weigh in more thanks to email on my phone. I make more typos and grammar errors though.

In one of my old thread series I talk about Graves disease. You might want to search threads by mkgbrook. There is a lot of compiled information there. In others you can learn how to calculate your results. One thing that will help you greatly is keeping a journal. Record daily symptoms, lab results, feelings, actions you have taken and more. My MDs were able to see trends in symptoms and it helped in my treatment greatly. I know many others that keeping a health log helped as well. One benefit of the health log is you can bring your MD a copy versus having to remember all the details. When I was HypoT. Remembering the smallest fact was difficult. If you write it down, you don't have to worry about forgetting anything. It will get better. You have identified your problem, now comes the fixing and feeling normal again. It will take time but each day is one more step forward.

Sincerely,
MG
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Old 08-22-2011, 05:00 PM   #15
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Re: New thyroid patient with questions??

Thank you guys so much!! I've been feeling like I was just a lazy complainer for so long!! Is it possible with all these symptoms that have lasted so long that it is thyroiditis? sp? I feel like I've been sick for so long that it's gotta be more than just a quick fix. Plus I don't really cycle through symptoms either. It's just straight hyper symptoms. I just didn't get the weight loss. I don't gain weight or lose weight no matter what I'm just stuck at my current weight.

 
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