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Old 02-25-2010, 09:09 PM   #571
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I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?
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Old 02-25-2010, 09:15 PM   #572
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Hi all! I wonder why I haven't seen this thread! I have had Hypothyroid problems for about 6 years now. I used to be able to keep very slender and I used to have thick long hair. Unfortunately, my hair sucks!! It is stringy, breaks off super easy and just falls out. I struggle to keep the weight down. My levels fluxuate so much. I have been on a dosage as low as 50mcg to 112 and then alternating, now I am on 100mcg and will go back again in 3 more weeks.

I am so glad to find others that are as frustrated like me. I haven't found anything to help with my hair.
I have the same issues as you plus super dry skin. It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry. My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.

I have tried different things with my hair from Nioxin to store brand products for thinning hair. Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.
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Old 02-26-2010, 08:38 AM   #573
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Quote:
Originally Posted by mrsklamc View Post
I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?
Glad to hear your appointment went well.

Yes 127 is really high. But you won't get a true reading until at least 6 months after your RAI treatment. The treatment is still doing its job in your thyroid cells.

I've always had a very low thyroglobulin, even right after surgery many years ago. It has stayed undetectable. Everything I've heard is that they like it to be "undetectable." They will accept anything under 2 and do nothing. Once it starts going above that, they know that they are dealing with residual disease.
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Old 02-26-2010, 08:42 AM   #574
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I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!
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Old 02-26-2010, 08:42 AM   #575
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Originally Posted by angwill View Post
I have the same issues as you plus super dry skin. It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry. My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.

I have tried different things with my hair from Nioxin to store brand products for thinning hair. Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.
I don't have hypothyroidism but I have lost my thyroid due to cancer. Throughout the years I have been on a roller coaster with my TSH and hormone levels. None of it has ever caused me to put on an excessive amount of weight or anything else. I have superdry skin but I've always had that even when I had a "good" thyroid gland. My son also has that so I think it's just us.

I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long. Turned out I had a very subtle case of iron deficiency. I am also deficient in Vitamin D. When I started working on the iron, my hair came back very thick. I don't have or never had anemia, just low iron. I am now working on the Vitamin D but it is a slow process.

My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid. You need to investigate many things before you can decide on that.
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Old 02-26-2010, 08:46 AM   #576
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Originally Posted by Christine View Post
I don't have hypothyroidism but I have lost my thyroid due to cancer. Throughout the years I have been on a roller coaster with my TSH and hormone levels. None of it has ever caused me to put on an excessive amount of weight or anything else. I have superdry skin but I've always had that even when I had a "good" thyroid gland. My son also has that so I think it's just us.

I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long. Turned out I had a very subtle case of iron deficiency. I am also deficient in Vitamin D. When I started working on the iron, my hair came back very thick. I don't have or never had anemia, just low iron. I am now working on the Vitamin D but it is a slow process.

My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid. You need to investigate many things before you can decide on that.
Very true. I have had a horrible time losing weight, and the new endo said "Of course you do. You are very petite and could function well on 1200 calories a day, which is very difficult to do in our society."
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Old 02-26-2010, 09:10 AM   #577
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Quote:
Originally Posted by mrsklamc View Post
I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?
I am glad you liked the endo. Wow, that number does seem high. I think mine was practically undetectable after the RAI. But my scan showed a remenant. I think mine will definetely come back since its so agressive. The columnar cells are 3 times larger than reg. ones. I actually saw a picture of my cancer, oh what fun! Its just a matter of when. I already talked to the dr. about the surgical plan. Yeah, his np told me it could come resistant too. Mine will come back in the R side since all my L side lymph nodes were taken out already.

Was your scan moved up at her request? So it doesnt have to be exactly 1 year? Mine will actually be 13 months when it gets done in May.

Its good you got all your questions answered.
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Old 02-26-2010, 09:11 AM   #578
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Quote:
Originally Posted by mrsklamc View Post
I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!
If you have thyroid cells, they produce a protein called thyroglobulin. Thyroglobulin is the marker they are measuring.

If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.

The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin. Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.

It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI. Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.

Does that help?
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Old 02-26-2010, 09:18 AM   #579
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Quote:
Originally Posted by Christine View Post
If you have thyroid cells, they produce a protein called thyroglobulin. Thyroglobulin is the marker they are measuring.

If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.

The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin. Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.

It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI. Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.

Does that help?
Yes, thank you! That makes so much more sense.
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Old 02-26-2010, 10:59 AM   #580
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Hi, all,

I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April.

How great to find yet another helpful thread on the DIS
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Old 02-26-2010, 12:13 PM   #581
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Hi, all,

I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April.

How great to find yet another helpful thread on the DIS

es45--Welcome!

Out of curiosity, can you tell me what your initial treatment was 20 years ago. I am always curious about the events surrounding a recurrence so far after initial diagnosis.
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Old 02-26-2010, 01:01 PM   #582
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es45--Welcome!

Out of curiosity, can you tell me what your initial treatment was 20 years ago. I am always curious about the events surrounding a recurrence so far after initial diagnosis.
I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.
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Old 02-26-2010, 01:15 PM   #583
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I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.

Thanks, I always like to know.

I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue). It sounds like you did not have RAI either?
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Old 02-26-2010, 01:22 PM   #584
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Thanks, I always like to know.

I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue). It sounds like you did not have RAI either?
No, not until 10 years later for the recurrence. Incidentally, I had 3 tumors before the surgery, so that fits what you were told too.
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Old 02-26-2010, 02:07 PM   #585
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I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.
That's basically what the surgeon said to me yesterday (see post above). Can you talk a little about what you mean about not doing a good job of supression? You have me much more freaked out than I was yesterday!!
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