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Old 05-27-2007, 08:51 AM   #166
claudia
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Originally Posted by ckirkseyblue View Post
Can anyone give me more insight on what it means to have a goiter on your thyroid. I found out last year that I have one. My doctor has told me that there is nothing to do but watch it. If it gets bigger and more bothersome (hard time swallowing, lots of coughing fits) they will remove it, which in turn means removing part of the thyroid an being on thyroid medicine for the rest of my life.

Is it worth having it removed do you think. I am hypo right now (I know I was hyper when I look back on it when I had my 2 baby girl). I have trouble with fatigue, I just can't seem to get motivated. I am gaining weight and having sugar cravings. I do not feel like myself at all and it is effecting me emotionally also. I have 3 daughters and after my 3 baby girl I started with the hypo. Its frustrating because you want to get up in the morning work out eat right and lose that weight but your body will not let you.

Anywho, I would be so grateful to anyone who could give me some advice on dealing with this, because at the moment I am not doing anything but living with it. Should I get the goiter taken out, get a second opinion ( I worry about it being cancerous) my doctor did not do a biobsy on the goiter.

I am so grateful to have found this thread.

Thank you,

Christina
here is a site that you will find a ton of info on...I hope this will be helpful for you.
www.endocrineweb.com
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Old 05-27-2007, 08:33 PM   #167
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Christina,

Are you on med right now? Have you asked your endo what they think is happening? Goiter is a base term for enlarged gland. Do you have nodules? Have you heard the word "hot" mentioned with them?

Since you're just being told this is happening, the exhaustion, the desire to do anything but sleep, and the hair falling out (that's coming, be aware) is normal for a hypo diagnosis. Having three kids doesn't help the exhaustion level, but, it's something to know, you're having normal symptoms.

More than likely your endo will be monitoring your thyroid to see if it's growing, and if it is, surgery will be indicated. With me, it was about two years and after a biopsy, it was determined it was time to come out. If you do go in for a biopsy, make certain that they contact you in a number of days, even if it's a good result. HAVE THEM CALL YOU!!!

I wasn't called and found out three months later that I was positive.

Absorb what Claudia sent you (killer site btw) and don't worry. You have plenty of folks here to help.
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Old 10-18-2007, 11:26 AM   #168
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I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.
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Old 10-18-2007, 12:39 PM   #169
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I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.
You are correct about the biopsy, many come back inconclusive, but better to try to find that out first then remove a healthy thyroid for no reason. My biopsy did come back positive (follicular), so the only option I was left with was to remove the side with the cancer and leave the other or remove it all....and my choice was to remove it all because there is no way I wanted to go through the same thing twice. What type of thyroid cancer did his brothers have? My advice is that it sounds like your doctors are proceding as most doctors would, so I would give them more time. You should have the biopsy results in a week possibly 10 days. Hopefully it will come back negative. They are telling you the truth that most thyroid cancers are highly curable.
I had a 2.5 cm tumor and had a total thyroidectomy. I have been cancer free now for 4 years.
Any questions that you have I will be happy to answer to the best of my ability...you can PM if you would like.
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Old 10-18-2007, 02:00 PM   #170
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They also had Follicular and his 2 masses are 1.2 or under. His one brother has been a survived this for 11 yrs. And other will be at the 2 yr mark. I guess I'm just aggrevated with all the waiting. The waiting and not knowing I think is almost worse then knowing for sure. At least you can deal with it when you have that much. Thank you for letting me vent. I hate to burden him even more when he has enough on his mind to begin with. And thank you also, I may PM you as we get more info. I like to ask questions and know facts. It's nice knowing there are people out there who are or have gone through the same things and you can talk to about it.
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Old 10-18-2007, 02:16 PM   #171
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Well it is good that his nodules are 1.2 cm. The smaller the better! I understand how difficult it is to wait, especially when there is a possibility that it may be cancer. Did the doctor at least give you a time frame as to when the biopsy results will be back? Once the results are back things will move much quicker for you then. Does your endo have a surgeon that they are recommending? One thing that you want to find out is that they have done many, many thyroid surgerys. Here is a wonderful site for you so that you can do some reading that will provide you with many answers to your questions. www.endocrineweb.com.
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Old 10-18-2007, 04:17 PM   #172
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They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.
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Old 10-18-2007, 04:38 PM   #173
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Advice, please

I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.

That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?

Thanks in advance,
Alisa
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Old 10-18-2007, 05:36 PM   #174
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Originally Posted by onesadduck View Post
I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.

That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?

Thanks in advance,
Alisa
The test was probably to measure your TSH levels and a 7.4 would indicated that you are hypo. You can ask her for a copy of the labs and see what values they use, but usually anything over 3 would indicate some problem. Next thing you should do is get yourself to an endocronologist and have an exam and testing. Synthroid caused problems with me as I was allergic to the dyes and fillers. I am currently taking Armour and I love it. And yes, you can switch your meds anytime you need to.....just get that appointment with the endo, you really need to find out why your are hypo and let someone who specializes in this treat you.
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Old 10-23-2007, 06:42 PM   #175
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Originally Posted by frdeb1999 View Post
They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.
I am so sorry you are going through this. It is hard time waiting for the results. I had both Folicular and Papillary Thyroid Cancer in 1999.
One thing that really helped me keep my sanity was an organization called
THYCA (Thyroid Cancer Survivors Assocation). They have great e-mail support groups. I was able to ask questions that I needed answered and this was from people who went through the same thing.

There web site is www dot thyca dot org

Gail
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Old 10-23-2007, 07:23 PM   #176
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Thank you. I did'nt realize that you could end up with both kinds. It is nice hearing about people though who have it in the past tense. I have been looking into groups where I can talk to people. He just does'nt see the need to. I guess it's a man thing! It's aggrevating as they said it would be 3-4 days and it's now been 5 and still nothing. We called today and they said tommorow, but more likely Thursday as they don't count weekend days in that total. That would have been wonderful to know ahead of time. Hopefully we can move foreward in this shortly...because the waiting is just horrid!
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Old 10-24-2007, 07:31 AM   #177
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Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.
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Old 10-24-2007, 08:40 PM   #178
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Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.
YOu definately want to go to the ThyCa Website and join the e-mail support group list. It is a Man Thing your husband doesn't want to do it! I am dealing with the same thing with my father with Prostate Cancer.

Also they really can't tell anything til after they remove the Thyroid and the final pathology report is back. The Thyca people on the e-mail support group list are great! The main thing you want is a surgeon that does lots of thyroidectomies.

If you have questions about the surgery feel free to PM me


Gail
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Old 10-28-2007, 11:39 AM   #179
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Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.
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Old 10-28-2007, 12:40 PM   #180
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I had follicular cancer on the left side of my thyroid and decided to have the entire thyroid removed, with my surgeon suggesting that was the best way to go. (She told me that this was normal procedure for follicular cancer) Personally for me, I would just not want to have to go through another surgery and worrying that the cancer could spread there was something I didn't want to deal with. Here is a passage from endocrineweb.com that I thought you might want to read:
Editorial Note from Dr. Norman: Virtually all patients with follicular thyroid cancer should be treated with a total thyroidectomy. If your surgeon says that he/she is going to take out all of the thyroid gland on the side of the neck that has the cancer and "some or most" of the thyroid gland on the other side... then find another surgeon. The only reason for a surgeon to not remove the entire thyroid is because they are afraid of injuring the nerve to the voice box... This usually means that they don't do this operation enough. If your surgeon is afraid of doing the complete operation because they may injure something, then think twice about finding another surgeon that does this operation more frequently. Do not let a surgeon remove your thyroid if they don't do this operation very frequently.

This is from the American Cancer Society:
Thyroidectomy

This operation removes all (total thyroidectomy), nearly all (near-total thyroidectomy) or most (subtotal thyroidectomy) of the thyroid gland. It is the most common surgery for thyroid cancer. It is often used even for differentiated thyroid cancers because papillary thyroid cancer tends to be present in more than one part of the thyroid gland and because follicular cancer is more aggressive. They also state that:

But having some thyroid left can interfere with some tests to look for cancer recurrence after treatment, such as radioiodine scans.

For me I am glad that I chose the total thyroidectomy. Please do more research online to come to a decision......
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