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Old 09-10-2004, 04:15 PM   #1
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sarashepard HB User
removal of thyroid

I would like to hear from anyone that has had their thyroid removed. I am in the process of finding out if I have to have mine removed and am a little nervous about it. Would just like some supportive input. Thanks.

 
Old 09-10-2004, 04:47 PM   #2
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Flipppy HB User
Re: removal of thyroid

Hi Sara
Mine was removed via RAI 3 years ago this month. I still don't think my Synthroid is the right level, but that's mainly because of my doc not acting very fast < his quote not mine>. Sometimes it takes awhile to feel "normal" again. Good luck.

 
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Old 09-12-2004, 08:36 PM   #3
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rebekkabobekka HB User
Re: removal of thyroid

Sara,
I had my half my thyroid removed in may and the other half in june because I had thyroid cancer. I am still not back to myself and I have a on going battle with my calcium...Some days I just feel like crap...other days I do ok...I take 150mcg of synthroid and am going to have it uped again to 250mcg...I do suggest you get a few opinions...turns out after all I went through that my cancer was so small that I didn't even need RAI and I would have been fine with just the one half being removed...although it's to late to do anything about it now I am greatful that my surgeries went smooth...I never had any pain in my incision it really just felt as though I had a bad case of strep throat for about 5 days or so... When they took my last half out he transplanted my parathyroids into the muscles of my neck...and now they work about half way..that's why my calcium is so hard to keep steady..My hair falls out...my joints lock up from time to time...i can't be in the sun for long or i get sick and i had some paracardium thinking around my heart..although I was assured by the doctors at OSU that most people with thyroid problems have that...most just don't know it...and it goes away usually on it's own...Honestly knowing what I know now...I would have never had it done...In my case it was being mis judged by my doctor...but as I said...as far as the surgery goes I found it to me a piece of cake...It's just getting back into the swing of things again that takes time....
In the end I am sure you'll be fine... but thats my story...hope it may have helped...
bekka

 
Old 09-13-2004, 07:21 AM   #4
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wendybx3 HB User
Re: removal of thyroid

I had mine removed in July. I was sore for a couple of days. Waking up from the anesthesia was the worst part. My doctor did a great job with the inscision. Just a thin line on one of my creases in the my neck. The worse part now is still feeling tired and fatigued all the time, but from what I have read on here it takes a while. Good luck

 
Old 09-13-2004, 07:28 AM   #5
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Re: removal of thyroid

I had half my thyroid taken out 2 years ago because there was cancer in that side. It turns out, we didn't know there was cancer until after the surgery. I knew I had a suspicious nodule. (The Fine needle aspiration only showed some normal cells and some abnormal.) SO after the surgery, they biopsied it and found cancer. We watched the other half and 2 more suspcious nodules popped up. The surgeons and endo said we could just watch it and see f they ever grow. They grew a little, and I was pregnant, and it was stressful. So as soon as I had the baby, I said 'ke out the rest of this thyroid. I can't sit here and wait for it to become cancer especially after having had cancer in the other side. 'The only thing is, my thyroid function was fine all along. I never had symptoms of any hyper or hypo problems. But I insisted on taking out the remaining thyroid, against my surgeons suggestions. I had to. My Mom was dying of cancer, and I couldn't just sit here and wait. Turns out the remaining thyroid was negative, so no cancer, no radiation.(Thank God) Just medication. NOW I have problems.......I gained 11 pounds in 4 weeks, tried different levels of Levoxyl, and am now on ArmourThyroid. We'll see how I do. I haven't gained any more weight, and I actually started losing a little, now I am up again. That is really the only problem I am having. The surgery itself was fine. The first half was more painful for me than the total ********ctomy. It feels like a really bad sore throat for a few days. My scar is healing well... I had this done in June this year. I still feel I did the right thing getting it out. I didn't want to wait for cancer to develop. So I have piece of mind about that. Now I just have to get my meds right which I am trying to do. Good luck with everything.

 
Old 09-25-2004, 05:07 PM   #6
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Dear Maggie HB User
Get a second opinion & consider a chemical exposure

Is there time to get a second opinion?

I noticed a couple of comments on fatigue. I know that thyroid ailments all by itself can cause fatigue; however, it itself may be secondary to the root cause of fatigue, such as CFIDS, 'gulf war syndrome' vets have, etc:

I believe it to be 2-butoxyethanol poisoning that we can easily come into contact with.

There was a comment also by one of you on another thread about 'diabetes'
Sometimes it is an expression of endocrine disruption, which this chemical also does. Learn about acquired autoimmune hemolytic anemia and check for blood in urine, low ferritin after a long time; track the 'retic' ratio; in particular look in depth into what is happening with the red blood cells.

All the best. If anyone wants to answer my 'preliminary health survey' on this topic, we can do it here.

Please check the several posts I made TODAY. There is a lot of information. AND if any of you have doctors who are interested in this hard to find fatigue, and the odd, multiple symptoms of this chemical, please pass it on!

 
Old 09-26-2004, 01:09 PM   #7
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Keiwei HB User
Re: removal of thyroid

Hi Sara,

I had my thyroid destroyed by means of RAI. I say destroyed because having it completely removed seems to have destroyed my life. I have gained 30 odd pounds in 2 and 1/2 months. I am not a happy camper. And honestly, If it wasn't for my eyes bulging out due to the Graves' Disease, I doubt that I would have had the RAI therapy. But that whole eyes bugging out thing scared me, and the endocrinologist really didn't give me any other options. If I had known then what I know now, I would have only opted for the surgery but only would have had a partial thyroidectomy. That way I could have at least had a fighting chance at losing this weight. But now with NO THYROID, it's going to be impossible. And I keep hearing conflicting stories about Synthroid medication. I hear that "it's possible" to lose weight on it, but mostly that nothing is really going to help me lose the weight that I've gained since the RAI...not even diet and exercise. I am very depressed over the situation and if I had known all of this...I wouldn't have done a thing. Please weigh ALL of your options and ask your doctor a MILLION and ONE questions. Don't let him/her hustle you into a decision that will alter YOUR life drastically.

 
Old 09-26-2004, 11:29 PM   #8
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Flipppy HB User
Re: removal of thyroid

Quote:
Originally Posted by Keiwei
Hi Sara,

I had my thyroid destroyed by means of RAI. I say destroyed because having it completely removed seems to have destroyed my life. I have gained 30 odd pounds in 2 and 1/2 months. I am not a happy camper. And honestly, If it wasn't for my eyes bulging out due to the Graves' Disease, I doubt that I would have had the RAI therapy. But that whole eyes bugging out thing scared me, and the endocrinologist really didn't give me any other options. If I had known then what I know now, I would have only opted for the surgery but only would have had a partial thyroidectomy. That way I could have at least had a fighting chance at losing this weight. But now with NO THYROID, it's going to be impossible. And I keep hearing conflicting stories about Synthroid medication. I hear that "it's possible" to lose weight on it, but mostly that nothing is really going to help me lose the weight that I've gained since the RAI...not even diet and exercise. I am very depressed over the situation and if I had known all of this...I wouldn't have done a thing. Please weigh ALL of your options and ask your doctor a MILLION and ONE questions. Don't let him/her hustle you into a decision that will alter YOUR life drastically.
I've said this before on other posts, after my thyroid was removed my entire body went to hell in a hand basket. First thyroid removal. A year later diabetes. A year after that ITP. Everyday is christmas.

 
Old 09-27-2004, 06:42 AM   #9
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puton10 HB User
Re: removal of thyroid

So what can we do about the weight gain? I am gaining, gaining, gaining...I cannot stand it. My husband tells me to exercise.....I told him that if this were 6 months ago before I got my thyroid removed, I would have lost 20 pounds by now because I am barely eating. And I have 4 kids under the age of 5 so It's not like I am sitting around all day!! I am still trying to get my meds under control, and it has only been 4 weeks that I am on Armour. I thought that switching to Armour would help me lose the weight. I am up 11 pounds so far, and nothing is helping. I feel like all I do is complain, and people around me are telling me I am obsessed...I am not, but I don't want to keep gainign weight either. Is there ANYTHING we can do?

 
Old 09-27-2004, 06:55 AM   #10
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Re: removal of thyroid

It seems like if your gaining weight (which is very depressing in itself) maybe your thyroid levels are low. When is the last time you had them checked?

 
Old 09-27-2004, 07:10 AM   #11
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puton10 HB User
Re: removal of thyroid

I went about a month ago, and I am trying to hold out for the 4-6 weeks like the doctor had said, before getting them checked again. Funny, last time I went for the blood work, my levels were on the high end of normal. I was on Levoxyl then, and I asked to be switched to Armour. The doctor said sure, but I started at 75 mg as a "sart off." My next blood test will tell if I should be on a higher dosage. If my thryoid levels are low, they should increase the meds right?

 
Old 09-27-2004, 07:24 AM   #12
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Re: removal of thyroid

Yeah they better increase them if your levels are low. Of course with the tsh it will be high if your levels are low.

But then ya can't go by just the tsh. My bloodtests showed my tsh is normal but my ft4 is low. They didn't put me on any meds because they think that my levels are okay? Now isn't that about totally ridiculous. I am getting them tested this week and if they are still low and I don't get meds. I am going to be pretty sarcastic.

 
Old 09-27-2004, 10:50 AM   #13
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Keiwei HB User
Re: removal of thyroid

Puton10...did a physician tell you that you would lose weight on the Armour? My Internist, the one I work for, told me that as soon as I started on the Synthoid that I should start to see a change in my weight for the better. HA! When I hit him with some research that I've read on the internet, his story changed for the worse. All of a sudden it went from positive news to negative news about my weight. Then he was like, "well, nothing is for certain, you'll just have to get started on it and wait and see. Watch what you eat and exercise." I told him, "but doc...I've been reading message boards, I've seen what others have to say...I've even inquired about it with online docs...there are conflicting stories, but mostly everyone gains weight whether they eat right, exercise or starve." He just shrugged. UGH! It's so infuriating! No one neither can nor will give you a straight answer it seems. Yes...everyone is different...but weight gain seems to be an overall concern amongst those with hypothyroidism...you would think that some doctor would take this into account and want to help us since it is their job to help.

 
Old 05-30-2008, 10:21 AM   #14
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Re: removal of thyroid

I had my thyroid removed Oct. 23rd. I've had a very hard time with it. I lost one of my vocal chords and I have had a very hard time getting my synthroid level right. I have aches every day. Everything I had before with aches and pain and arthritis seem to be worse now. I am fighting for my disability right now. I miss myself I use to be but I did get rid of the thyroid cancer. I miss my voice though and I miss feeling energetic. I can't do things I use to do. I'm 56 so maybe it's harder when your older. I just don't feel like the same person. I know that might sound crazy but I just don't. I guess there is happier stories out there but mine didn't turn out so happy. Make sure you go with a Doctor that specializes in the field. My primary Doctor sent to me a general surgeion when he should have sent me to a specialist beings I do have a EAR, NOSE and THROAT Doctor. Well life goes on. Good luck and wish you all well. Josi

 
Old 08-05-2008, 09:11 PM   #15
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tbren HB User
Re: removal of thyroid

I am not sure if you already had this out but unless you knew for sure you were going to get cancer I would not do it. I did it 13 years ago. I am going through a very rough time right now and wish everyday I would have never had mine out. I had a total thyroidectomy in 1995 for a little bitty nodule that they said they could not tell or not if it was cancerous. IT turns out it was not cancerous. So many times now, I wish I still had my thyroid. Maybe I would not be such as mess! Good luck on your decision.


Quote:
Originally Posted by sarashepard View Post
I would like to hear from anyone that has had their thyroid removed. I am in the process of finding out if I have to have mine removed and am a little nervous about it. Would just like some supportive input. Thanks.

 
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