Update From Micheles, My Original Msg. Was In 1-05

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I care and I do understand.

 Love, Michele

 

On 4/3/2008 Micheles. wrote:

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at ruffledsheets@yahoo.com. I care and I do understand.

 Love, Michele

 

has your tg ever been undetectible since 04? OR was it ok and undetectible then went up? that's correct that tg lab alone is not the only indicator especially if you have lymph node mets upon orignial diagnosis. Need ultrasounds too.

Did you have three RA131? Or three scans? I didnt understand yoru msg.  Have you had an ultrasound yet?

Good luck. DP

 

On 4/3/2008 Micheles. wrote:

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I care and I do understand.

 Love, Michele

Hi Michele, thanks for the update - glad to hear you are on Armour now!  I am too and I try to remember to tell people if they give you the same dose of it as you were on Synthroid or other synthetic drug it may be too much or too little at first.  Seems like our body's are much like trading in an old car for a new one - driving it exactly the same doesn't work and it takes time to adjust.

Hope all turns out well for you.  And you are totally right about pushing for more thorough tests, more information, etc. and that doctors do not seem to pay very much attention to thyroid cancer, treatment etc.  From my research on the internet I have been giving my docs information that they did not know!  What happened to the years of extra training they receive after medical school for the particular area they are going to specialize in?  My doctor actually got mad that my sister (who is a nurse) and I were asking questions - like we were somehow stepping on his all important, most knowlegeable toes - instead of being concerned about what I was about to go through.  At one point he even said "well if you two are done now I will get back to my lunch."  I'll dare he - I am fighing for my life and he is more concerned with a sandwich that is sitting somewhere?

Thanks for your professional comments that backs up what we all have experienced in the process of working on getting well.

We appreciate you,  KathyMMM

 

On 4/3/2008 denmurpar wrote:

 

On 4/3/2008 Micheles. wrote:

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at ruffledsheets@yahoo.com. I care and I do understand.

 Love, Michele

 

has your tg ever been undetectible since 04? OR was it ok and undetectible then went up? that's correct that tg lab alone is not the only indicator especially if you have lymph node mets upon orignial diagnosis. Need ultrasounds too.

Did you have three RA131? Or three scans? I didnt understand yoru msg.  Have you had an ultrasound yet?

Good luck. DP

Hi DP,

 I have had 3 RA131 tx, my latest US was last Thurs. , and I originally did not have mets to the lymph nodes. No my thyrogobulin has never been 0. With the three tx. it should have been 0. At my doctor's appt. this AM, I was told that after 3 tx. it is troubling that it is not 0, it was down to 7. This is the first time it has gone up and now is at 9. I will have a CAT scan next week, and see the doctor on the 24th to schedule surgery. He says it won't be like a thyroidectomy, but they will make an incision in the middle of the old scar and strip the tissue midline (this is where the 8mm cyst is) about 2" wide up, to under the chin, if that high. He thinks it will be a day surgery. I am very emotional today. I guess I knew what I was facing, but it is still scary. I hope to God that's where it is, and my thyroglobulin will be zero after that. Hey DP, so what's your story?? Michele

                

 

 

On 4/4/2008 KathyMMM wrote:

 

On 4/3/2008 Micheles. wrote:

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I care and I do understand.

 Love, Michele

Hi Michele, thanks for the update - glad to hear you are on Armour now!  I am too and I try to remember to tell people if they give you the same dose of it as you were on Synthroid or other synthetic drug it may be too much or too little at first.  Seems like our body's are much like trading in an old car for a new one - driving it exactly the same doesn't work and it takes time to adjust.

Hope all turns out well for you.  And you are totally right about pushing for more thorough tests, more information, etc. and that doctors do not seem to pay very much attention to thyroid cancer, treatment etc.  From my research on the internet I have been giving my docs information that they did not know!  What happened to the years of extra training they receive after medical school for the particular area they are going to specialize in?  My doctor actually got mad that my sister (who is a nurse) and I were asking questions - like we were somehow stepping on his all important, most knowlegeable toes - instead of being concerned about what I was about to go through.  At one point he even said "well if you two are done now I will get back to my lunch."  I'll dare he - I am fighing for my life and he is more concerned with a sandwich that is sitting somewhere?

Thanks for your professional comments that backs up what we all have experienced in the process of working on getting well.

We appreciate you,  KathyMMM

 

Thank-you Kathy, for your response. I am on my pity pot today, and hope to start on a more positive note tomorrow. At my doctor's appt. this AM, I was told that after 3 tx. it is troubling that my thyroglobulin level is not 0, it was down to 7. This is the first time it has gone up and now is at 9. I will have a CAT scan next week, and see the doctor on the 24th to schedule surgery. He says it won't be like a thyroidectomy, but they will make an incision in the middle of the old scar and strip the tissue midline (this is where the 8mm cyst is) about 2" wide up, to under the chin, if that high. He thinks it will be a day surgery. I am very emotional today. I guess I knew what I was facing, but it is still scary. I hope to God that's where it is, and my thyroglobulin will be zero after that. We've all got to share information! Technology is moving so fast, and unfortunately, some doctors settle for "what used to be" and don't want to be bothered. I hope you are doing well. Take care, Michele

Your story sounds so much like mine, except mine started in 2006.  One thing i don't understand is that you talk about your thyroglobulin level, I am looking at my last blood tests and I don't see thyroglobulin only himoglobulin levels and nothing shows zero or close to it.  can you explain more so i can understand what i am looking at.

thank you

j

 

On 4/4/2008 Micheles. wrote:

 

On 4/4/2008 KathyMMM wrote:

 

On 4/3/2008 Micheles. wrote:

It's been awhile since I have been on this site but I am encouraged by everyone communicating about thyroid cancer. I had a thyroidectomy on 11-29-04 for thyroid cancer, I chose to have I-131 tx to get rid of the rest of my thyroid cells, the last tx was 9-06 (I have had 3 tx.). I have kept regular appts. with my endocrinologist, which has proved to be a good thing, as, last month my thyroglobulin level went up (it should have been 0 by now)! So last week I went for an US of the neck and we found an 8mm cyst. More than likely it is cancer. I will go to my ear, nose and throat doctor tomorrow morning. I am hopeful we will be able to remove it and I will no longer have a level of thyroglobulin. It's been a long road, but doable. Being hypothyroid is very draining, my last tx was 100 millirads (?) of radiation and was by far the hardest tx. I found the best thing to do was drink lots of water to get it out of your body as quickly as possible, and to suck on hard candy to keep the salivary glands working. I did have trouble with numbness of my tongue, my bladder seemed very sensitive and I have had kidney stones since then.I still have trouble regulating my body temperature, but most of my other symptoms are better with my switch to Armour thyroid, I was on Synthroid. Just a note here, the change to Armour thyroid was not as easy as I expected, I became very hypothyroid when I switched. I am now at the right dose.

 As a nurse I have found that not much attention is given to thyroid cancer, blood tests don't always show what's going on, and you still have to remain diligent and proactive in your care. Finding a doctor that listens to you about signs and symptoms you are having, and not just going by lab reports is important. My doctor also consults with many other professionals including, radiologists, surgeons and other doctors. If I can be of help to anyone, please email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I care and I do understand.

 Love, Michele

Hi Michele, I don't see it as a pity party at all - I see it as discouragement at not "knowing" what to expect....... I have been feeling much the same way!

My journey started in Dec. 06 with surgery in Mar 07 & now here it is Apr 08 & I am "discouraged" that the start of each year is LID & medical tests & focus on this thing called cancer instead of on my goals & plans for the year! 

My job is taking aura (energy field) photos & doing readings around the country. Usually I start in January & go through October.  Now I have had to put my plans on "hold" last year & this one because of surgery, treatments, etc. 

My speaking engagements & aura photo readings are my only income & I am single!)  In my work I "see" upcoming events for people, such as a new baby being born before they even know they are pregnant - including a man that was 75 - his younger wife got pregnant with his baby. Sometimes I see a new romance.  For Roger Clemens I saw him leaving the Houston team & saying goodbye to friends.   I have even helped people discover health issues & sent them to the doctor to have it verified.  I speak at conferences around the country.  BUT because of cancer I am stuck at home "waiting" for test results so I will know whether I can schedule my out of town work OR  put my life on hold once again for treatments! 

So my dear Michele, I don't see it as a pity party at all - I see it as frustration that we have to sit around & "wait" & the only thing that helps is talking to each other!

You all make a difference in my life as I read & learn & at least feel like I can contribute to getting myself well again through your stories!

Thanks, Kathy

Hi Michele, thanks for the update - glad to hear you are on Armour now!  I am too and I try to remember to tell people if they give you the same dose of it as you were on Synthroid or other synthetic drug it may be too much or too little at first.  Seems like our body's are much like trading in an old car for a new one - driving it exactly the same doesn't work and it takes time to adjust.

Hope all turns out well for you.  And you are totally right about pushing for more thorough tests, more information, etc. and that doctors do not seem to pay very much attention to thyroid cancer, treatment etc.  From my research on the internet I have been giving my docs information that they did not know!  What happened to the years of extra training they receive after medical school for the particular area they are going to specialize in?  My doctor actually got mad that my sister (who is a nurse) and I were asking questions - like we were somehow stepping on his all important, most knowlegeable toes - instead of being concerned about what I was about to go through.  At one point he even said "well if you two are done now I will get back to my lunch."  I'll dare he - I am fighing for my life and he is more concerned with a sandwich that is sitting somewhere?

Thanks for your professional comments that backs up what we all have experienced in the process of working on getting well.

We appreciate you,  KathyMMM

 

Thank-you Kathy, for your response. I am on my pity pot today, and hope to start on a more positive note tomorrow. At my doctor's appt. this AM, I was told that after 3 tx. it is troubling that my thyroglobulin level is not 0, it was down to 7. This is the first time it has gone up and now is at 9. I will have a CAT scan next week, and see the doctor on the 24th to schedule surgery. He says it won't be like a thyroidectomy, but they will make an incision in the middle of the old scar and strip the tissue midline (this is where the 8mm cyst is) about 2" wide up, to under the chin, if that high. He thinks it will be a day surgery. I am very emotional today. I guess I knew what I was facing, but it is still scary. I hope to God that's where it is, and my thyroglobulin will be zero after that. We've all got to share information! Technology is moving so fast, and unfortunately, some doctors settle for "what used to be" and don't want to be bothered. I hope you are doing well. Take care, Michele

 

 

On 4/4/2008 Learn Something New Every wrote:

Your story sounds so much like mine, except mine started in 2006.  One thing i don't understand is that you talk about your thyroglobulin level, I am looking at my last blood tests and I don't see thyroglobulin only himoglobulin levels and nothing shows zero or close to it.  can you explain more so i can understand what i am looking at.

thank you

j

Thanks J for your response to Michele - I often do not know what the symbols mean either so like it when everyone explains things that I have not yet dealt with or do not understand......

Throglobulin is a substance produced by thyroid tissue - either cancerous or normal.  Following thyroidectomy your doctor will typically get a thyroglobulin level.  After ablation therapy with I-131 your thyroglobulin level should be close to 0.  Just remember that ablation therapy doesn't always kill ALL remaining thyroid tissue, though that is the goal.  So if your thyroglobulin level is greater than 1 it doesn't necessarily mean there are cancerous cells present, it just means that there are thyroid cells present.  However, once your thyroglobulin level has been measured, 6-12 months following ablation, your thyroglobulin level can be tested again.  If your thyroglobulin level is increasing, it can be indicative of cancer recurrence.  This is a specialized test, one that typically requires you go off your thyroid replacement or have injections to elevate your TSH, it will not be a test typically run when they measure your TSH to titrate your thyroid replacement dosage.  Hope that helps.