# Hi... New here and a ton of questions



## lillyjackmom (Mar 13, 2010)

Hi everyone. I am new here and have a million questions I was hoping you could weigh in on. Basically for the last 10 years (at least) I have been feeling horrible. I am tired all the time almost to the point of feeling sick. I am unable to lose weight not matter what I do. I have blood sugar issues and have been told I have reactive hypoglycemia. I also have terrible skin issues on my hands that I have been told his Excema or Psoriasis. I could go on and on with my symptom list. Last year I was diagnosed with Hashi's my antibodies were 1266. All my hormone levels were tested and I was told they fall within the "normal range" so my thyroid "could not" be causing any of this. At the same time last year my endo did an ultrasound and found multiple nodules that he said were "too many to count". There were two larger ones that were biopsied and they were normal. Now I am having trouble swallowing and I went to see the endo and he suggested that the thyroid come out because the nodules are getting larger and compressing on my throat. He also thought the risk of cancer was higher with so many nodules and my grandmother had thyroid cancer. So one of my questions was what was the recovery like and did you feel better after having it out? I have two small children and I am worried about the recovery time. Also, if you guys thought there might be a difference once having it out? Like will I finally feel better and will some of my symptoms go away? I have been miserable for so long and I am really needing some help. I was also wondering if it was hard to get your levels right once you have the surgery? Thanks for your time in reading this and I appreciate ANY comments or advice.

Thanks again
Stacie


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## Andros (Aug 26, 2009)

lillyjackmom said:


> Hi everyone. I am new here and have a million questions I was hoping you could weigh in on. Basically for the last 10 years (at least) I have been feeling horrible. I am tired all the time almost to the point of feeling sick. I am unable to lose weight not matter what I do. I have blood sugar issues and have been told I have reactive hypoglycemia. I also have terrible skin issues on my hands that I have been told his Excema or Psoriasis. I could go on and on with my symptom list. Last year I was diagnosed with Hashi's my antibodies were 1266. All my hormone levels were tested and I was told they fall within the "normal range" so my thyroid "could not" be causing any of this. At the same time last year my endo did an ultrasound and found multiple nodules that he said were "too many to count". There were two larger ones that were biopsied and they were normal. Now I am having trouble swallowing and I went to see the endo and he suggested that the thyroid come out because the nodules are getting larger and compressing on my throat. He also thought the risk of cancer was higher with so many nodules and my grandmother had thyroid cancer. So one of my questions was what was the recovery like and did you feel better after having it out? I have two small children and I am worried about the recovery time. Also, if you guys thought there might be a difference once having it out? Like will I finally feel better and will some of my symptoms go away? I have been miserable for so long and I am really needing some help. I was also wondering if it was hard to get your levels right once you have the surgery? Thanks for your time in reading this and I appreciate ANY comments or advice.
> 
> Thanks again
> Stacie


Gosh; you have been through it for a long time. It sounds like that thyroid should come out and they will whisk it off to pathology too to check for cancer. If the nodules are fast growing, that sure would raise the eyebrow of suspicion as well.

High TPO in some instances can be linked to cancer.

http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

I for one feel great. I have no thyroid. It did take some time to get on track afterwards but w/determination and a good doctor, I did it. Thyroid disease badly damages the body so the average "healing" time is about 18 months. But, at least you are healing rather than the other way around.

Many here have recently had thyroid surgery (ablation) and they are doing well, very well actually!


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## lillyjackmom (Mar 13, 2010)

Thanks so much for your response and encouragement. Sorry is has taken me so long to thank you, I have been down with the flu for a few days.

I am stressed out about the surgery,but I am hoping that I will finally feel better. I don't know what it would feel like to feel "normal" or "good". I am really hoping this will help me. Even if it takes a while. I had another question for you. My doctor said I could have 25-30 nodules. Is that a lot? I mean for people who have multi-nodular thyroid disease? I really don't know if that's a lot or not. Thanks again for answering my questions. Stacie


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## Andros (Aug 26, 2009)

lillyjackmom said:


> Thanks so much for your response and encouragement. Sorry is has taken me so long to thank you, I have been down with the flu for a few days.
> 
> I am stressed out about the surgery,but I am hoping that I will finally feel better. I don't know what it would feel like to feel "normal" or "good". I am really hoping this will help me. Even if it takes a while. I had another question for you. My doctor said I could have 25-30 nodules. Is that a lot? I mean for people who have multi-nodular thyroid disease? I really don't know if that's a lot or not. Thanks again for answering my questions. Stacie


Yes; that is a lot. But it would be interesting to do a poll on that as I never asked anybody that.

To me, one nodule is one too many and that would by my guideline. LOL!! Wow!!explode


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## lillyjackmom (Mar 13, 2010)

I agree that one is too many...LOL! That would be a very interesting poll. I for one have no idea if I am in the average or the minority.


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## Andros (Aug 26, 2009)

lillyjackmom said:


> I agree that one is too many...LOL! That would be a very interesting poll. I for one have no idea if I am in the average or the minority.


And to make matters even more interesting; does the surgeon or pathologist "really" count the nodules?:tongue0015:


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## lillyjackmom (Mar 13, 2010)

Oh that is so right!!!! I asked if I had more nodules than last time and he said he didn't know because he didn't count them. Then when I asked how many he said there were "too many to count". He estimated 25-30. So who knows really?


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## M123K (Mar 17, 2010)

Hi Stacie,

I had the surgery 14 years ago for multinodular goiter that had become pappillary cancer. When they finally got it out, the cancer was in both lobes and the isthmus, so they figured it had been there for quite a while. I also had issues with the size of my thyroid gland. I was waking up at night regularly, choking. Apparently, it was due to the location and weight of my gland on my trachea.

But, after the surgery and the recovery, things have been very good. Everyone who saw me after the surgery said that I looked like I had lost a lot of weight - but I hadn't lost a pound. It was just the size of my neck that had shrunk significantly. I can't promise anything with the weight. That's still an ongoing challenge. I had one endo who told me that her thyroid cancer patients often struggle with weight, even though they are maintained on a fairly high level of synthroid. But, I feel great and that's what really matters. There was a time when I wasn't sure if I would ever feel good again.

M123K


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## lillyjackmom (Mar 13, 2010)

Thanks M123K, your response actually made me cry. It's so nice of you guys to respond. I love to hear that you and Andros are both feeling great. I have felt horrible for so long I don't even know what it would be like to feel great. It's so hard to even imagine. I feel like I am at the end of a long journey which is knowing something was wrong and being told there was nothing wrong, and now I am starting a new journey which is finally starting to heal. I am so glad to hear that your cancer is gone and you are doing well. It really helps because that is something I am worried about. It looks like I won't have the surgery until early May so I won't know until then about any cancer. I just hope once they get the thyroid out I will feel like a new person. I am 38 and I feel like I have missed out on my thirties entirely. I have two small children and I would love to have more energy just for them. Would you mind telling me what the recovery after the surgery was like for you? Thanks so much for your encouragment. Stacie


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## Andros (Aug 26, 2009)

M123K said:


> Hi Stacie,
> 
> I had the surgery 14 years ago for multinodular goiter that had become pappillary cancer. When they finally got it out, the cancer was in both lobes and the isthmus, so they figured it had been there for quite a while. I also had issues with the size of my thyroid gland. I was waking up at night regularly, choking. Apparently, it was due to the location and weight of my gland on my trachea.
> 
> ...


Hello and welcome to the Board!! Thank you for sharing your experience.

Where is your TSH at and do you get your FREE T4 and FREE T3 checked as well? You cannot lose weight unless you are euthyroid.


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## lillyjackmom (Mar 13, 2010)

Would you mind telling me what is "Eurthyroid"? I am trying to learn as much as I can.


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## Andros (Aug 26, 2009)

lillyjackmom said:


> Would you mind telling me what is "Eurthyroid"? I am trying to learn as much as I can.


Not at all! It is my pleasure and that is what I am here for.

Euthyroid is Ta da!!! Drum roll please......................"When you feel perfectly well."

The state of having normal thyroid gland function.

arty0045:


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## lillyjackmom (Mar 13, 2010)

Well that makes sense. Thanks for filling me in. I know this is a really stupid question, but when I start to feel better is it an immediate thing like all of the sudden I feel great? Or is it a really slow process? I know you said healing takes on average of 18 months just wondering what to expect.


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## Lovlkn (Dec 20, 2009)

lillyjackmom,

When do you go meet with your surgeon? Are you from the USA?

Have they offered you any thyroid replacement yet? You have alot of symptoms and will heal better if in a euthyroid state pre op/post op.

lovlkn


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## lillyjackmom (Mar 13, 2010)

Hi. Yes I'm from the US. My consult with the surgeon is 4/6. I have not been put on any thing yet. My hormone levels have all been normal and me Endo says there is no need. He also feels that none of my symptoms are related to my thyroid because of the normal levels. In my heart I know it's not true but he is the first doctor in over 10 years to do ANYTHING for me.


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## Andros (Aug 26, 2009)

lillyjackmom said:


> Well that makes sense. Thanks for filling me in. I know this is a really stupid question, but when I start to feel better is it an immediate thing like all of the sudden I feel great? Or is it a really slow process? I know you said healing takes on average of 18 months just wondering what to expect.


No................it's more likely to be insidious just like when you were getting sicker and sicker w/ your thyroid.

That is why labs will be so important in the months to come. 8 weeks is a reasonable time span to continually get labs and get your thyroxine titrated. Every now and again, the doc should run your Free T4 and Free T3 also.

Then, when you are stabilized and you consider your self euthyroid, you can see doc every 3 months.

No question is silly; it is silly not to ask the question.


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## lillyjackmom (Mar 13, 2010)

Yikes! That is what scares me. I don't think my doctor is one that will follow me that closely. He already told me that if I decide NOT to have surgery to come back in a YEAR!!!! I went through so many doctors just to get to this point. I only found out about the Hashi's because my GP gave me the additional tests to appease me because my other test were within normal limits. She just pretty much said I had Hashi's, no big deal, and that is WAS NOT causing my symtoms. She refused to refer me to an ENDO. Then I found another Internal Med doc who was willing to listen and she sent me to the Endo. That is how I got to this spot after years and years. My Endo said we would find the right hormone levels after surgery and that would be it. I guess I will see how it goes and hope that I am wrong. Now that things are finally happening I want to make sure I feel better in the end. Thanks for your help!!! Sorry for the vent.


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## Andros (Aug 26, 2009)

lillyjackmom said:


> Yikes! That is what scares me. I don't think my doctor is one that will follow me that closely. He already told me that if I decide NOT to have surgery to come back in a YEAR!!!! I went through so many doctors just to get to this point. I only found out about the Hashi's because my GP gave me the additional tests to appease me because my other test were within normal limits. She just pretty much said I had Hashi's, no big deal, and that is WAS NOT causing my symtoms. She refused to refer me to an ENDO. Then I found another Internal Med doc who was willing to listen and she sent me to the Endo. That is how I got to this spot after years and years. My Endo said we would find the right hormone levels after surgery and that would be it. I guess I will see how it goes and hope that I am wrong. Now that things are finally happening I want to make sure I feel better in the end. Thanks for your help!!! Sorry for the vent.


Hey; listen. If this guy won't work with you, find someone who will. The doctor does not have to be an endo. I see a rheumatologist/immunologist. You could see a DO, a GP, Internist..............heck, even a veterinarian could do this.

All they have to do is have the desire to help you and a modicum of thyroid knowledge and "we" can supply more info and knowledge to that doctor along the way.

You have to have labs every 8 weeks and meds adjusted until you feel well. It would be unconscienable to turn you loose on your own.

We might have to kick some butt here and I am ready to "rock and roll!" Are you?:evilgrin0036:


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## lillyjackmom (Mar 13, 2010)

I love your spunk! Thanks for the support. Yep!!! I'm ready!


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## Andros (Aug 26, 2009)

lillyjackmom said:


> I love your spunk! Thanks for the support. Yep!!! I'm ready!


That is why we are here; to help you advocate for your self. Knowledge, emotional support and spunk coming your way.

Also,we are here to "validate" you. No one knows their body like the owner of that body. Listen to your instincts at all times. 99% of the time, the first instinct is the right instinct.


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