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Old 08-04-2006, 01:48 PM   #1
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Karen W. HB User
Smile Need Advice

Hello,
I was diagnosed with a goitering thyroid with a nogel almost 2 years ago, when my family Doctor ran some teats and had gotten back the results, he sent me to a neurosurgeon, Well this guy ran more tests and now has me come in once a year for an ultra sound, that it, He never did a biopsy, He never checks my thyroid level, I asked him to but his answer was, well you goiter and nogel are the same so I believe your levels have not changed. I am so tired of my legs and hips aching and my feet being hot, My weight goes up and down like a roller coaster, I cannot handle the heat well and I'm sweating -everyone else is fine, I'm tired allot, finially today I said enough, I'm seeing my Family Doctor next Wednesday, Do You go threw these symptoms??? I also get allot of head aches, But the achy hips and legs drive me nuts, I'm a grocery store manager, when I come home from work at night, I fell like I could use an electric wheel chair, If anyone has some advice, I'd appreciate it, I'd like to fell like myself again.
Karen W.

 
Old 08-04-2006, 02:04 PM   #2
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Re: Need Advice

Hi Karen ~
Are you on an HMO or PPO type insurance? If its hmo, your primecare will have to refer you to an Endocrinologist. (can't believe they haven't done a needle biopsy ) Often an enlarged thyroid is a malfunctioning one. So if you have to go to reg-Doc ask for FREE t3 & 4's along with TSH testing while waiting to see Endo.

If your on PPO, call medical group local headquarters, and ask for the MEMBERED Endocrimologist.

take CARE (((hugs))) Let us know,
Sue

 
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Old 08-04-2006, 02:32 PM   #3
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Karen W. HB User
Smile Re: Need Advice

Hi Sue,
I have PPO insurance, I must say you actually made me feel better, For almost the last two years, I feel like these Doctors haven't been treating my condition right, They had said my levels were low but low enough to be put on medication, he also said that I had to have this ultrasound once every ten months to a year because they are watching for thyroid cancer, I said to him, why don't you just remove the growth and then we don't have to worry about it, His reply was, It so close to your vocal cords, that if he did do the surgery, my voice would sound like Mr. Ed and I would also have voice fatigue, Frankly I was not happy when I left. Thank You for the advice.
Karen

 
Old 08-04-2006, 02:38 PM   #4
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Re: Need Advice

Karen you need a good ENT
I'm in Chicago and know a great one, however I'm not sure where you live. I had 2/3 of my thyroid out and my voice is fine. My ENT/surgeon is fantastic. I think you need to find a different doctor......and yes get the FNA, it is warranted and I'm not sure why it wasn't ordered.

 
Old 08-04-2006, 02:46 PM   #5
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Re: Need Advice

Karen -- I'm pretty new to these boards as well, and just had my thyroid removed about a week ago because of a large goiter with a suspicious nodule. I experienced almost all the symptoms you mentioned, including extreme fatigue, constant sweating, body aches and cramps, headaches, weight gain and many more. It's only been a week, but I'm amazed that my sweating has almost completely vanished, I have no body aches or cramping and am sleeping fairly well. Yes, my voice does sound like Mr. Ed right now, but I'm sure that will go away as several others here have said they experienced the same thing.....that's not a logical excuse for him to use for not treating you. The surgery was a piece of cake....I was very frightened, but it's the easiest operation I've ever had (I've had 4 others).

Hope you can make getting referred to an ENT or Endo a priority....we deserve to feel well! Best of luck!

Intrigue

 
Old 08-04-2006, 02:51 PM   #6
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Re: Need Advice

Oh my, where to start...

1. A neurosurgeon is not the guy to be watching this.
2. No one can tell using ultrasound alone whether a nodule turns cancerous. They can determine only whether it's changing in size, not whether it's malignant.
3. It is possible for a skilled surgeon to do thyroid surgery with a much lower risk of complications than a hack neurosurgeon. (Let's all guess now, which kind you may be seeing. )

Hon, you need a better doctor. Time to go doctor-shopping!

If you have test results and ranges to share here, we can make sense of whether your levels are low enough to treat. I'll bet they are.

Until you find a good MD, get yourself a copy of Thyroid for Dummies. It will help you understand the terminology of thyroid and make sense of what is happening to yours.

 
Old 08-04-2006, 10:07 PM   #7
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Re: Need Advice

Thank You Everyone,
I hope I didn't get your blood pressure up to much but these last 5 posts have taught me allot, I've been worried about this because not only do I have this problem, I have had two masses removed off my neck the last eight years, I really don't like to fart around with some thing like this, I worry about cancer and I fell like this entire ordeal has been not been taken care of properly and this is my health. I'm tired of not feeling well, I will look into and Endo and I'm still going to keep my appointment with my Family Doctor next Wednesday, He can at least do the blood work and we can get the ball rolling and take it from there, I also want a biopsy done, I know I will fell better knowing if it is cancerous or not. Who actually dose the biopsy's? I have no idea what my iodine levels and blood work was two years ago, I'm sure they are not the same now like that doctor claims, Sometimes I can feel my throat is more swollen, has anyone experienced that? It kind of feels like half of a golf ball is stuck in there, I also told the surgeon that, he told me I really shouldn't be feeling anything, I know what I'm feeling, it's not my imagination, Don't you hate that when they treat you like your stupid!!! I will keep you posted because I'm sure I will have allot of questions and you can guide my, When my son was diagnosed with Addison's disease 3 years ago, I learned more from a discussion board than I did from the Doctor, isn't that amazing
Karen

 
Old 08-05-2006, 07:54 AM   #8
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Re: Need Advice

Hi Karen ~
After being sent for u/s that warranted a Nuclear scan, my primecare-Doc refferred me to Endo. He did a needle biopsy right off the bat, that was non-cancerous. Endo then put me on "WATCH" statis. 1.5 years later one lobe was removed due to enlargement.

Needle biopsy of thyroid? Personally, I wouldn't let anyone other than an Endocrimologist do it, cuz I would NOT want to have to do it twice
Sue

Last edited by sudufu; 08-05-2006 at 07:57 AM.

 
Old 08-05-2006, 08:58 AM   #9
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Re: Need Advice

Quote:
Originally Posted by Intrigue50
Karen -- I'm pretty new to these boards as well, and just had my thyroid removed about a week ago because of a large goiter with a suspicious nodule. I experienced almost all the symptoms you mentioned, including extreme fatigue, constant sweating, body aches and cramps, headaches, weight gain and many more. It's only been a week, but I'm amazed that my sweating has almost completely vanished, I have no body aches or cramping and am sleeping fairly well. Yes, my voice does sound like Mr. Ed right now, but I'm sure that will go away as several others here have said they experienced the same thing.....that's not a logical excuse for him to use for not treating you. The surgery was a piece of cake....I was very frightened, but it's the easiest operation I've ever had (I've had 4 others).

Hope you can make getting referred to an ENT or Endo a priority....we deserve to feel well! Best of luck!

Intrigue

Hi,
I'm glad your doing so well, did they say your voice is going to come back to normal??? How Long did you have your goiter with nogel before they decided to do the surgury??
Karen

 
Old 08-05-2006, 09:03 AM   #10
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Karen W. HB User
Cool Re: Need Advice

Quote:
Originally Posted by sudufu
Hi Karen ~
After being sent for u/s that warranted a Nuclear scan, my primecare-Doc refferred me to Endo. He did a needle biopsy right off the bat, that was non-cancerous. Endo then put me on "WATCH" statis. 1.5 years later one lobe was removed due to enlargement.

Needle biopsy of thyroid? Personally, I wouldn't let anyone other than an Endocrimologist do it, cuz I would NOT want to have to do it twice
Sue
What dose it feel like when they do a biopsy? Is it really pain full? Do the put you under for something like that or are you awake?
Karen W.

 
Old 08-05-2006, 05:57 PM   #11
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Re: Need Advice

Wow, Intrigue50 - you're post made me feel really hopeful! I, too, have the horrible aching in all my joints, but the hips are the worst. Pain in my legs/feet, hands/arms, has been miserable for a very long time. Finally, I am scheduled for a TT on August 21st, and I am so hopeful it will make my pains better.

Karen,

I have a FNA evey year due to a cold nodule. I had to take the initiative myself, bc my Endo at that time ignored the recommendation of the doc who read my uptake, who said to have it checked either by US or FNA. SHe chose neither, so I chose FNA. Only the FNA will show changes in the cells, which may be cancer, but the US shows only size, shape, and/or enlargement of the gland. It can't tell if the enlargement is due to cancer, or to benign growth. Only a biopsy can tell if a malignency is present. So, if you are worried, insist on a FNA - and that should be done every 6-12 months.

Good Luck!

Ora

 
Old 08-05-2006, 06:50 PM   #12
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Intrigue50 HB User
Re: Need Advice

Karen and Ora -- I had my first ultrasound in 2003 after my primary physician found the goiter during a routine exam. She said I needed to have another ultrasound twice a year, but I just blew it off (I hate doctors and thought it was no big deal). Finally, about six months ago, I started having real difficulties with my breathing and swallowing. I went in for another ultrasound in June and the goiter had more than doubled in size. I finally got an appointment with an excellent ENT and saw him on July 5th. When he saw the ultrasound, he scheduled surgery, which I had on July 25th. He didn't do a pre-surgery biopsy, since he was going to remove the goiter anyway. As I said earlier, the surgery was a piece of cake -- the post-op pain was waaaay less than I'd psyched myself up for and, within four hours of surgery, I was sitting up in a chair, laughing with my family at some of the off the wall things I said right after surgery (evidently I asked the surgeon if I'd left my tennis shoes on the operating table).

About my voice....my breathing and voice have improved even since I left that post. The ENT really feels it will return to normal within a month or two, because it was totally normal within a few hours of surgery....it just got this way the day after surgery. He believes the cord is just badly bruised. Since my breathing is already improving, I'm sure he's right....last night I slept all the way through with no breathing problems at all and my voice sounds a tiny bit better today.

Even with just starting the synthroid, I don't feel nearly as drained today as I have in the past six months and I am just so excited to see what the days ahead bring. I know it won't all be rhapsody and roses, but the way I feel this evening, I'd have the surgery again in a heartbeat!

Best of luck to both of you and keep us updated!

Intrigue

 
Old 08-05-2006, 07:50 PM   #13
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Re: Need Advice

Hi quick reply, as my battery low.. I too have hyper thyroid..was wired and tired..hot..i am on methemizole and doing great..DON"T let them convince right off the bat to have RAI or surgery(sorry to those who have done great with those), but I have done a lot of research and American Dr's want to do those two things without rying meds, if it is hyper..I get tested every 2-3 weeks, and yes it is a pain, but I will gladly do this the rest of my life, rather then go through the other treatments with no guarantees
Sue

 
Old 08-07-2006, 11:28 AM   #14
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Karen W. HB User
Question Re: Need Advice

Hi ,
I have one more question while I'm thinking of it, Do you get flu like symptoms off and on, I do, I'll have a busting head ache, ache all over and fell really tired, Do you also find your immune system seems to be lower with a thyroid condition?
Karen W.

 
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