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Old 09-24-2008, 07:49 PM   #241
jrandtysmom
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Hi Everyone! I am so glad I found this thread. I went to the doctor a few weeks ago and they discovered that my thyroid is enlarged. They've done bloodwork and a Cortisol Free Urine test and everything came back normal. Then they sent me to have an ultrasound on my thyroid and it came back as having cysts on my thyroid so now my GP wants me to see an Endocrinologist but she had no answers about the cysts - if they are just fluid. The Endo Dr is now reviewing my file before I can make an appointment? Is that normal? I'm wishing they would just figure out what is wrong.
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Old 09-25-2008, 11:19 AM   #242
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Hi all. I started a thread about this but I am so glad I was pointed in this direction.

The long story...I have been going through lots of testing for the past 4-5 years to explain my symptoms. I have been tired, depressed, forgetful, twitchy, have headaches every day and sometimes I don't speak right. I either forget the words, forget what I was going to say or just slur the words. It has been frustrating to say the least.
Thanks
Your symptoms are almost identacle to my symptoms! I also had an MRI, but mine came back normal. I thought for sure it was a brain tumor or MS. After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems. It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...). I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal. I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.
Good luck with the biopsy. I have heard it isn't too bad. Let us know how it goes.
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Old 09-25-2008, 02:36 PM   #243
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For those of you who had your thyroid removed, were you able to lose weight once you got your medication straightened out? It has only been three months since I had mine removed and we haven't figured out the right dosage yet. I still feel horrible, I can't even keep my eyes open at work anymore. I go back for bloodwork next week. I'm just hoping that once we get it straight I'll be able to lose some weight. I really don't eat a lot either, I don't have much of an appetite.
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Old 09-25-2008, 02:48 PM   #244
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ugh - I know when mine's been low I feel the same way you're talking about, plus it seemed like I hardly ate and gained weight! I have struggled w/my weight since I've had it out. My endo says it's not related. For what it's worth.

Good luck with getting your dose right!!
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Old 09-25-2008, 02:57 PM   #245
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Your symptoms are almost identacle to my symptoms! After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems. It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...). I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal. I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.
Good luck with the biopsy. I have heard it isn't too bad. Let us know how it goes.

I find it so strange that all my blood work keeps coming back normal. I was sure it would show something. I go in 2 weeks for my biopsy, Ill let you know how it goes. Good luck with your scan. Have you started any meds yet or waiting until the scan is done? I'd call your PCP about the ultrasound. My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).

I will have to look up Graves Disease. Good luck.

BTW, where in ME are you?
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Old 09-25-2008, 04:00 PM   #246
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Old 09-25-2008, 04:11 PM   #247
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I think the blood work depends on what they order and who's looking at it. Do they look at your TSH and T4 levels?
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Old 09-25-2008, 09:38 PM   #248
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I find it so strange that all my blood work keeps coming back normal. I was sure it would show something. I go in 2 weeks for my biopsy, Ill let you know how it goes. Good luck with your scan. Have you started any meds yet or waiting until the scan is done? I'd call your PCP about the ultrasound. My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).

I will have to look up Graves Disease. Good luck.

BTW, where in ME are you?
I started methimazole this past Friday. I am not sure if it is helping yet. It feels good to be doing something though. You'll be getting your biopsy around the same time that I am getting my thyroid scan. We'll have to keep each other posted on the results.

I live in the Bridgton, ME. Where in Maine are you?
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Old 10-05-2008, 02:20 PM   #249
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I think the blood work depends on what they order and who's looking at it. Do they look at your TSH and T4 levels?
I'm not sure what they are looking at when they do the blood tests. I just know they tell me they are checking my thyroid levels???


Dougsmom98, I live in Southern Maine...York area. Good luck next week. I'll post again after my Dr appt.
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Old 10-05-2008, 04:01 PM   #250
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My husband is going on the 1 yr mark next month since having his thyroid removed and still isn't feeling 100% yet. They keep slowly upping his meds and he does great for about a month after and then it seems to level out again and he's right back in the same boat. His endo told him though it would be between 18-24 months before he started totally feeling like himself again. He's improving steadily, just gets him upset that it's not as fast as he'd like it to be. And the weight thing....he eats less now then he did prior to surgery and still manages to gain. I really feel bad for him....endo says same thing....not related....but I just don't agree. Hopefully all will level out soon. Just am thankfully that his first round of scans came back clear....next ones are in Dec..Hopefully it will continue same course!
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Old 10-06-2008, 06:50 AM   #251
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It's very frustrating that it can take so long to get the meds right. My dr. upped mine and I went for bloodwork last week and my TSH is at 26.83. I guess that explains why I still feel so horrible. She doesn't want to up it too quickly because too much at once gives me palpitations, I can't sleep and I have awful anxiety.

frdeb1999-Hopefully your husband will feel better soon. I just had my thyroid removed 4 months ago so I think I have quite a ways to go.
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Old 10-06-2008, 08:57 PM   #252
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Thank you KAMLEM. And hopefully yours will slowly improve too. It's a tough road at times. Just don't be too hard on yourself and take things slowly. I keep telling my husband that. But he gets really upset when he forgets things or has bad days. And I always remind him that it will improve and just to take it one day at a time.
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Old 10-07-2008, 02:05 PM   #253
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Just my own experience: I had Graves when I was 13 years old. Took the meds (PTU) for it until I was 19 and felt good. For some reason a doc wanted to do RAI to burn it out and I did it. Young and stupid? I think so. Now, I'm 40+ and would NEVER do that again!!! I was fine for several years and then all went haywire. Meds dont work right, test dont work right, I certainly have not felt right in years. Id NEVER do the RAI if given the chance to go back.
In my experience doctors understand Graves fine, until they screw things up. Then Graves becomes a thing they dont understand. I feel cheated that they didnt paint the whole picture for me.
My advice is simple: Research EVERYTHING before you do it.
Know your options and which sounds right TO YOU.
Know what tests mean and how to read them, and get copies of yours.
Do not accept "everything is in the normal range" until you see it.
It is your body after all... you will have to live with this (whatever you do) forever.
Good luck to all.
Remember... I give this advice without standing to make a dime off it.
Can the doc say the same thing?
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Old 10-07-2008, 03:59 PM   #254
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When you go to your doctor, please make sure if they're doing bloodwork, that they are doing a TOTAL T3 and T4. The regular thyroid blood test is not as accurate.

Also, if your Synthroid is not working for you, ask your doctor or find one who will prescribe Armour thyroid. Armour is made from the thyroid glands of animals. It was a miracle for me. I'd taken Synthroid and felt just as bad after taking it as I did before I took it.

I found a different doctor, he prescribed Armour thyroid and my life changed for the better. Most doctors say that the dose isn't as good or isn't as accurate as Synthroid but I'm here to say that every single person that I've asked has said the Armour changed their lives for the better too.
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Old 10-07-2008, 04:10 PM   #255
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I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half! You're not getting generic are you?

Kamlem - did you mean your TSH levels were that high? (you typed TSG) Yikes! Are you sleeping 18 hours/day?

frdeb1999 - I'd be frustrated still feeling like that after a year too. Do you like the endo he has? Congrats on the clear scan! I always get nervous before mine. Is he taking his meds on an empty stomach an hour before eating and NOT taking generics?

The weight thing stinks - that's all I can say about it. I am sure some of it w/me is age but I really don't believe that's the biggest part (no pun intended!) when I hear the same thing from so many w/the same thryoid issues. It comes on easy, and is much harder to get rid of. Some of the things say they "increase your metabilism" always make me think "but my metabilism comes from my little pink pills..." I don't know how it can be increased but I DO know that a cold knocks me out longer than most people, and I think that's b/c my body uses some of the "stored" stuff to help while I'm sick and then has to "rebuild" after. I don't know if this makes sense...
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