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Old 08-08-2011, 04:15 PM   #1
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Question Life without a thyroid?

Hi there,

I have a 1 cm node that's suspected to be papillary thyroid cancer on my right lobe. Am either having TT or partial thyroidectomy but either way I am pretty freaked out having read some of the stuff online about people living debilitating lives on a hormonal rollercoaster without their thyroid. Basically hormone replacement doesn't effectively replace the thyroid despite what endos say. But, everyone I've heard of or known whose had it removed is functioning okay. So, please inform me of your experiences. Do you feel like you're a different person now? Are you able to sleep okay? Depressed? Severe fatigue? heart problems? shortness of breathe? Major weight gain?

I hope this doesn't turn out to be the post you don't wanna hear the answer to...*sigh*

 
Old 08-09-2011, 04:29 PM   #2
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Re: Life without a thyroid?

I had thyroid cancer 6.5 years ago. There was a 4-6 month med adjustment period----but now all is the same.

 
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Old 08-09-2011, 05:06 PM   #3
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Re: Life without a thyroid?

My mother and her friend recently had their thyroids removed. They are both feeling fine and don't notice any significant differences. They did have an adjustment period, getting used to the meds, but it was very mild and passed quickly.

 
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Old 08-14-2011, 06:14 PM   #4
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Re: Life without a thyroid?

Hi,
Total thyroidectomy, Sept. 2010. Basically, I am still struggling to find my regulation. I am on natural thyroid hormone, which is supposed to be the closest to our own thyroid. I simply could not function on synthetic hormone. Sometimes life is good, without a thyroid, but when it turns, it can be quite annoying. Yes, you can live without a thyroid, but honestly, it is not the same. I would tell anyone who still has their thyroid to fight to keep it. Do your research, and trust in the doctor that you are seeing, before coming to a firm decision.

 
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Old 08-16-2011, 04:16 PM   #5
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Re: Life without a thyroid?

The doctors so far have been really insistent on TT and lymph dissection. I have been trying to convince them otherwise and to do partial lobectomy where 1 cm node lies but no success yet. Can you elaborate on the annoying parts? I assume it's regular hypo/hyper symptoms. Have you had major weight gain? Heart issues? Is your TSH stable?

 
Old 08-16-2011, 04:37 PM   #6
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Re: Life without a thyroid?

Hi there,

Life is just not the same. At any given time, a strange symptom can appear that you just cannot explain. Some of the symptoms that I have experienced are heart palps, choking sensation, upset stomach, indigestion problems, heat flashes, swelling in ankles and feet. I never had any of the above symptoms until my thyroid was removed. The thyroid as small as it is, is a very important part of the body. It supplies iodine to every cell in the body. It regulates temperature, and metabolism. You will have to take thyroid hormones for the REST OF YOUR LIFE. You will also have a difficult time controlling your weight. I do not have this problem as of yet, because, I have been working out most of my life. I also watch my diet. I had a total thyroidectomy last Sept 2010. I am still trying to regulate my thyroid hormone so that I can feel optimal. It is no easy task. Good luck with your decision. Make a wise one.

 
Old 08-18-2011, 07:30 PM   #7
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Re: Life without a thyroid?

I had a TT september 2008, when I was diagnosed I had major hair shedding but actually it was trigger by a violent flu infection that took a while to get recover from, 2 months later the major hair shedding. Once I started to take t4 the shedding stops completely by the month and a half later. This before my thyroid surgery. Now without a thyroid my hair sheds on and off, anything can trigger it no matter all the tests I had nothing is wrong with me but maybe for a low ferritin which I'm sure had before my thyroid was removed. I'm sure if I had my thyroid right now, or part of it, I wouldn't be dealing with this annoying hair shedding. I guess everybody reacts differently, my mother feels optimal now that her thyroid was removed. Me not so much.

 
Old 08-19-2011, 02:20 PM   #8
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Re: Life without a thyroid?

Hi mustlovecats,
I truly understand what you are going through. When I was on Synthroid, I suffered with hair loss. I was only on synthetic hormones for about four months, then I switched to natural thyroid hormones. I did this because I felt like I was dying or that life was not worth living, while I was on it. I ached, was tired, and a host of other things. I also lost hair during that time. I also found out that my iron was terribly low. This in itself can account for hair loss. Also, a lack of iodine in the diet can also cause hair loss. I am not losing hair any more, since I am on both of these things, plus natural thyroid hormone. If your iron is low, perhaps you should try supplementing with iron. It just may help. Are you also taking other vits, such as B's C's, Cal, Mag, Potassium. I know, it sounds like a lot, but we have to give our bodies back what it cannot give us due to not having our thyroid. It was a small gland, but it was oh so mighty.

 
Old 09-06-2011, 02:24 PM   #9
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Re: Life without a thyroid?

HI.. I feel better without my thyroid and my meds were only tweaked once. TT Nov 09. However I also take Vit D and B complex to help with energy. I see you're from Canada too. The best site when I was researching for help was www.thyroidcancercanada.org. I also went to their AGM in toronto last year. Be informed, but be positive... that is just as important as any treatment.

 
Old 10-06-2011, 03:03 PM   #10
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Re: Life without a thyroid?

I'm waiting to get a date for my TT and I just cannot wait to get it out. My biopsy showed suspicious for papillary but also features of medullary. Even though I've normal calcitonin the endo can't rule out medullary. I probably won't know until after surgery which type I have - papillary where I'm highly likely to live a normal life, albeit without a thyroid or medullary where the prognosis will depend on what stage I'm at (I've had for 7 years, originally misdiagnosed), but is pretty poor, certainly not normal life expectancy. I found this out on Friday and have been through hell. So sick could not eat, which of course scared me that was sign of disease progression! I know life without a thyroid will be challenging, esp as I'm thin and have real body issues relating to my weight, but I actually feel I'd be ecstatic if they removed and turned out not to be cancer at all.
But that's my bad situation. If yours is only papillary maybe you can do your research and see what the risks are in waiting and holding onto thyroid a bit longer? From what i've read partial doesn't help that much with adjustment vs total, but I could be wrong. Personally I'd want to get any hint of cancer out of my body, but maybe there are more invasive biopsy options to confirm diagnosis before you go down this route?

 
Old 10-06-2011, 05:28 PM   #11
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Smile Re: Life without a thyroid?

Hi Catnap 73. Being a thyroidless person, I can truly sympathize with what you are going through. If it helps at all, when I was going through my fears, was to just focus on getting the surgery, and getting well. I just wanted whatever, was foreign in my body, gone. So, I started focusing on how well I would be after it was all over. Focusing on what has not been confirmed as of yet, only tends to keep you upset, and unable to live in the now. Most of the things that we fear, mostly, never happens anyway. I know that this is no easy journey. I've been through it. I went from being a person who never got sick, even with a cold, to having to learn to live without a thyroid. This has been my most challenging fete ever. You say that you have a problem with weight. Just think. It just may be your thyroid issue that is keeping you from gaining weight. So many people have been where you are, and they are now fine. Think positive. That is the key to wellness. God bless you. When you are scared, and sick, talk to God. I did. HUGS.

 
Old 10-08-2011, 11:49 PM   #12
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Re: Life without a thyroid?

Hi, I feel great after my TT and so glad i did the surgery as it turned out to be papillary carcinoma variant hurthle cell, the largest tumour being over 3cm. I was hypo for 10 years and on erfa the last 5. Since having a TT I felt healthier than I have in years and lost 20lbs and its stayed off without me really doing anything and I have lots of energy which i didn;t have before. I think this is due to me being on erfa rather than synthroid and because I was already on it before the TT. I'm having RAI (100 mCi )next month which i am really nervous about but know I don't have much choice as it can spread. Just make sure you do tons of research.

 
Old 10-09-2011, 11:29 AM   #13
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Re: Life without a thyroid?

I am sooo happy about the positive outcome of your surgery. Yes, now you can start to live, without being robbed of your life, by an inadequate thyroid. May you continue to do well. Hugs.

 
Old 10-09-2011, 01:45 PM   #14
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Re: Life without a thyroid?

Yes its definitely not what I was expecting. I also found out that I am gluton intolerant which apparantly goes hand in hand with hypothyroidism and I'm sure that has alot to do with the weightloss and feeling much healthier.

Last edited by lorrainep; 10-09-2011 at 01:47 PM.

 
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