The THYROID Thread

[Christine]

Your thyrogen question reminded me of a question I have for Christine if she knows. My doctor said they would not do thyrogen for the therapy dose only for my 6 month WBS to see how the RAI is working. Is there a reason why some doctors use thyrogen for the theraputic RAI and some make you go naturally hypo?

It's one of those "balances of benefits" thing.

Having a "hypo" therapy dose is the best thing for treatment. Being truly hypo with a high TSH cause the thyroid gland to be truly avid and makes it really *want* to suck up iodine. The medical community relies on this to make sure the patient gets the ultimate/best scenario during the first treatment. Optimal treatment during the first dose ensures a much better outcome, long term. This is why many doctors also recommend the LID and have moved away from using tracer doses of RAI prior to the therapy dose. The goal is to make the thyroid absolutely starved.

The thought is that Thyrogen does not produce that sane effect. TSH rates do not generally rise as high as they do during withdrawal and the window for the rise in TSH is about 3 days. While treatment can be given with Thyrogen as well as scans, the general consensus is that the it doesn't do it as well as being off meds. For some, being off meds is a health risk (the elderly or people with other health complications) so a Thyrogen therapy dose is the next best thing for them.

 

[luvmarypoppins]

ang - hmm. I dont honestly remember having to have a 6th month scan post rai.

I do remember having to have blood tests to check the tsh or tg every three months.

I know my onc says it takes the rai up to a year to kill all the leftover tissue. So I am just wondering why you have to have a 6th month scan versus just having a blood test to see if everything is stable.

Christine - maybe you can enlighten us.

Christine - also how are you feeling, both physically and emotionally. I hope you are healing, but I am sure it will be a process.

Just read a little news blurb that obese people are being short changed with the chemo dose.

Hmm and this sheds light also on how do they figure out your rai dose, because I know my onc. said she takes weight into consideration too. She has a whole formula. I am really big anyway so it was a big dose for me plus the aggressiveness. I am wondering if anyone knows the formula. That would interest my dh probably since he always looks at things from a scientific viewpoint etc.

 

[Christine]

ang - hmm. I dont honestly remember having to have a 6th month scan post rai.

I do remember having to have blood tests to check the tsh or tg every three months.

I know my onc says it takes the rai up to a year to kill all the leftover tissue. So I am just wondering why you have to have a 6th month scan versus just having a blood test to see if everything is stable.

Christine - maybe you can enlighten us.

Christine - also how are you feeling, both physically and emotionally. I hope you are healing, but I am sure it will be a process.

Just read a little news blurb that obese people are being short changed with the chemo dose.

Hmm and this sheds light also on how do they figure out your rai dose, because I know my onc. said she takes weight into consideration too. She has a whole formula. I am really big anyway so it was a big dose for me plus the aggressiveness. I am wondering if anyone knows the formula. That would interest my dh probably since he always looks at things from a scientific viewpoint etc.

I had a 6 months scan after my first treatment. That was the way they did things "back then" but I don't think they do that anymore because they now know that it generally takes 1 year to see the full effect. It's amazing how much medical practices change over time.

I'm feeling fairly anxious lately. It's amazing that you think these things don't really bother you and they do. I've been hearing horrible stories (that don't make the news thankfully) from friends in the building. We've been told that we will not get back into the building for "weeks to months". FBI still has possession of the building. After that, it will go back to the Navy and floors 1-4 (especially floors 3&4) will need extensive repairs and cleaning.

Fortunately I have the tools to telework. Many don't so they are trying to figure out what to do with them and are trying to get that to alternate work sites that have the access they need.

It's just really depressing.

 

[angwill]

Christine, Thank you for defining that for me. I am getting it. I think I will ask to put off my 6 month WBS to a year and hope my endo will be open to it. I know they said they saw uptake in my left armpit that the Endo and Surgeon had never seen before so I think they want to check on that at 6 months. There should be no way for the RAI to get to the pit without a trail through the lymph nodes, which it did not show, if it is truly there. After asking on the thyca boards and hearing from someone who worked in nuc med they said that because of the technology not being perfect and how it works off of magnatism sometimes it will throw off a ghost shadow to places like the arm pit that actually is not where the iodine settled. After hearing that I am not worried about it at all and wonder why the Endo talked to the surgeon and not the rad med doctors.

Christine were you working on the Navy base where the shooting took place? I am so sorry if you had to live through that tragedy. I am glad that you can telework at least but so sorry you are going through all that madness.

LMP,
That is interesting about the Chemo and those that are obese. I would think they would have formulations like with anethesia? I just googled formulation for RAI dose and came up with this http://jnm.snmjournals.org/content/44/3/451.full Maybe that will keep your husbands scientific mind busy. Let us know what he learns.

Ang

 

[Christine]

Christine, Thank you for defining that for me. I am getting it. I think I will ask to put off my 6 month WBS to a year and hope my endo will be open to it. I know they said they saw uptake in my left armpit that the Endo and Surgeon had never seen before so I think they want to check on that at 6 months. There should be no way for the RAI to get to the pit without a trail through the lymph nodes, which it did not show, if it is truly there. After asking on the thyca boards and hearing from someone who worked in nuc med they said that because of the technology not being perfect and how it works off of magnatism sometimes it will throw off a ghost shadow to places like the arm pit that actually is not where the iodine settled. After hearing that I am not worried about it at all and wonder why the Endo talked to the surgeon and not the rad med doctors.

Christine were you working on the Navy base where the shooting took place? I am so sorry if you had to live through that tragedy. I am glad that you can telework at least but so sorry you are going through all that madness.

Ang

Ang,

How deep did they think the armpit thing was? Reason I ask is that many women can have breast tissue under the arm and breast tissue does take up iodine so if you had breast tissue there, that might be the answer. Usually it's fairly superficial and not as deep as a node.

Yes, I was in the Navy Yard BLDG 197 during the shooting. That's the building I work in. I work on the 5th floor and the shooter never came there, thank god. But a woman on my floor was shot exiting the stairwell. If you watched the news, she was the one shot in the shoulder and airlifted off the roof. Our captain was behind her in the stairwell and got her back up after she was shot (because they weren't going to go down where he was).

 

[angwill]

Ang,

How deep did they think the armpit thing was? Reason I ask is that many women can have breast tissue under the arm and breast tissue does take up iodine so if you had breast tissue there, that might be the answer. Usually it's fairly superficial and not as deep as a node.

Yes, I was in the Navy Yard BLDG 197 during the shooting. That's the building I work in. I work on the 5th floor and the shooter never came there, thank god. But a woman on my floor was shot exiting the stairwell. If you watched the news, she was the one shot in the shoulder and airlifted off the roof. Our captain was behind her in the stairwell and got her back up after she was shot (because they weren't going to go down where he was).

They didn't say how deep the armpit thing was. So would that mean the breast tissue might have cancer in it? Wouldn't the RAI destroy it then or would it need to be removed as well? I do have a big chest so I would not doubt it is in that area. That is not a possibility anyone on thyca gave so it is good to know. I had actually forgotten about the pit spot till today.

Wow I can not even imagine being in that building period. How terrifying. I take it the woman from your floor lived? I am glad someone was there with her to get her out of there. I am going to have to go to the news channels like CNN or HLN to see full coverage. In IL we just got brief info and mostly about those who passed away and of course they sensationalize the perp. I am sorry you had to live through that and hope things get back to as normal as possible for everyone quickly so they can process and heal.

 

[Christine]

They didn't say how deep the armpit thing was. So would that mean the breast tissue might have cancer in it? Wouldn't the RAI destroy it then or would it need to be removed as well? I do have a big chest so I would not doubt it is in that area. That is not a possibility anyone on thyca gave so it is good to know. I had actually forgotten about the pit spot till today.

Wow I can not even imagine being in that building period. How terrifying. I take it the woman from your floor lived? I am glad someone was there with her to get her out of there. I am going to have to go to the news channels like CNN or HLN to see full coverage. In IL we just got brief info and mostly about those who passed away and of course they sensationalize the perp. I am sorry you had to live through that and hope things get back to as normal as possible for everyone quickly so they can process and heal.

NBC 4 Washington is just now giving a great summary of what happened and you can probably just watch that on line. At least what's going out today is much more factual.

As for the RAI stuff, all sorts of tissue uptakes RAI--breast tissue, salivary glands, the stomach, colon. If they ever show you your scan, it's very interesting. The thyroid, by far, lights up the most. No, it doesn't mean that you have cancer there. It doesn't even mean if your thyroid area lights up that it has cancer it in--it just means you have remnant thyroid tissue, which could be perfectly normal. The Tg test is the one that has the marker for cancer.

 

[luvmarypoppins]

I had shadows on my scan. The one shadow was in the salivary gland area.

They also had to take more pictures of my stomach because the tech said they "saw something". I did tell him that I had a draining stomach wound at the time. My rad. onc. knew this so that probably did not concern her either.

So sometimes they see something and then it turns out to be nothing. This was the case with me too.

Christine - wow. All the news here seems to be focusing on the perp guy because he was from around here in the NY metro area. I am glad you can telecommute. Are they offering you any kind of counseling.

Well I just ordered my wheelchair and the town car for Disney. We need a vacation and my dh just got home from Siberia. It looks like it will be very warm weather next week end in Florida. Yeah! I love it hot! My goal is to also swim in Storm Along Bay.

 

[luvmarypoppins]

dmlaini - how is your dh doing? I hope he is healing and not in too much discomfort. How is his voice?

Christine - hope you are healing emotionally. I am sure it will take a long time.

Anyone see the little blurb on yahoo shine news about thy ca. It was a simple article. I did have some issues. They said thy ca is the quiet cancer. Yeah I guess mine was too until it started roaring like a lion

They did quote something from thyca as one of their sources. They also said there is only 1 kind of aggressive thy ca. Hmm, didnt mention aggressive variants of thy ca. etc., just anaplastic as being aggressive.

Well we leave for Disney in 4 days and my wonderful dh has started to get a really bad cold. I thought he sounded sick when he got back from Russia. He said it was really cold there so I know he must have got it there He usually never gets sick all that much I hope he gets better real fast because I just dont want any of us to be sick there. I guess I will bring lots of cold med stuff etc.

Ds3 took me for the blood tests on friday that the new internist wanted. 6 tubes of blood. Yikes!

Micayla - wishing you all the best with the sono on wed.

Hope everyone is doing well. Check in when you can.

 

[luvmarypoppins]

Well this is a total dis post that is not thyroid related. Heah its good to get your mind off thy cancer once in a while right?

I was just going to look at some dining reservations and see if we could get into the crystal palace for dinner sat. night. We have the plaza right now. Well low and behold what pops up but none other than Be Our Guest.!!!!

I am shouting for dh to get me his credit card asap. Mine was in another room. So on sat. dh, I and the 2 ds wil be eating there. I know I hear the food is not great but dh has been asking about it and it will be good to try it out and not wait in the lunch line.

I am beyond. When they first opened up adrs when they opened I was on hold for 4 hours back and forth and never got anything. Have never seen anything available for dinner on all our other trips etc. Maybe its better for 4 than just 2 (dh and I ).

 

[Christine]

Well this is a total dis post that is not thyroid related. Heah its good to get your mind off thy cancer once in a while right?

I was just going to look at some dining reservations and see if we could get into the crystal palace for dinner sat. night. We have the plaza right now. Well low and behold what pops up but none other than Be Our Guest.!!!!

I am shouting for dh to get me his credit card asap. Mine was in another room. So on sat. dh, I and the 2 ds wil be eating there. I know I hear the food is not great but dh has been asking about it and it will be good to try it out and not wait in the lunch line.

I am beyond. When they first opened up adrs when they opened I was on hold for 4 hours back and forth and never got anything. Have never seen anything available for dinner on all our other trips etc. Maybe its better for 4 than just 2 (dh and I ).

Sounds great. I can't wait to hear your opinions when you return.

My DD is applying to the Disney College Program. My pessimistic nature thinks she won't get in but she is really hoping!

 

[luvmarypoppins]

Christine - wishing your dd all the best. I know one of ds1's friends got accepted and he declined!!! Don't know why.

Also one of the gals on the breast cancer threads dd got in and worked at Cosmic Rays.

Also I think one of ds2's friends just got accepted. I havent heard the details of that one yet.

I know ds1s friend had a lot of customer service skills. He worked in an ice cream place for a long time and a candy store sometimes too all during high school.

 

[DMLAINI]

dmlaini - how is your dh doing? I hope he is healing and not in too much discomfort. How is his voice?

Christine - hope you are healing emotionally. I am sure it will take a long time.

Anyone see the little blurb on yahoo shine news about thy ca. It was a simple article. I did have some issues. They said thy ca is the quiet cancer. Yeah I guess mine was too until it started roaring like a lion

They did quote something from thyca as one of their sources. They also said there is only 1 kind of aggressive thy ca. Hmm, didnt mention aggressive variants of thy ca. etc., just anaplastic as being aggressive.

Well we leave for Disney in 4 days and my wonderful dh has started to get a really bad cold. I thought he sounded sick when he got back from Russia. He said it was really cold there so I know he must have got it there He usually never gets sick all that much I hope he gets better real fast because I just dont want any of us to be sick there. I guess I will bring lots of cold med stuff etc.

Ds3 took me for the blood tests on friday that the new internist wanted. 6 tubes of blood. Yikes!

Micayla - wishing you all the best with the sono on wed.

Hope everyone is doing well. Check in when you can.

DH saw his surgeon today & was cleared to go back to work tomorrow. His voice is back to normal. Have a great trip to Disney!!

 

[luvmarypoppins]

dmlaini - glad your dh voice is back to normal and that he can go back to work.

micayla -hope your sono goes well today and hope things are coming along for your mil treatment

Well the internist called me. Hmm, its not like I was expecting any good news right. Well she said 3 things are borderline and 1 test might be a false positive. She wants me to repeat something and if its still positive then she wants me to have more tests and if those are bad then she wants me to see a liver specialist, huh? Sometimes I am thinking that the leave no stone unturned philosophy is a little too much. I guess I will have a talk with her at my next appt. about how far is to far to look for stuff etc. think its good but she does seem a little too overly aggressive in stuff. Maybe that is just her philosophy. Like super preventitive?? Well the one good thing is that she actually allled me back personally.I almost fell over.

My former dr. waste my time only called me when I needed to be hospitalized for the blood transfusions etc. He never called with blood tests results personally or his staff otherwise. Maybe if they did it was weeks later or I would have to call myself.

Well tomm. is packing day. My poor dh sounds so sick. I doubt this will be an enjoyable vacation but we will make the best of it.

 

[angwill]

I need to check in more often here I am so behind.

Christine, I am not sure how deep the under arm area was on the WBS but I will ask when I call in for my blood work. I do need to get the records for it too. It is good to know it might very well be just excess breast tissue.

I hope all is well with you and your co workers.

LMP,
How is your DH feeling with his cold? I am not sure when your leaving for your WDW trip but I hope you have time to relax and enjoy. That is so great that your getting into Be Our Guest, do let us know how you enjoy it. I did read that around 1:30-2p the lines for lunch die down. How old are your DS's? They sound older like my son who is 18.

I am sorry to hear the test results came back the way they did. I sure hope you have some good health insurance. I am always impressed with doctors that call you themselves especially with bad news. Remember the doctor who found my mass had her nurse call me to tell me about it and then she said she was sure it was cancer and wanted me to go get a WBS before biopsy. Then when I said I wanted a biopsy since a WBS won't tell if it is cancer the doctor told the nurse to tell me it was her way or the highway. Some doctors should not be in the field. The new doctor I saw told me the other doctor was nuts and sent me for biopsy called me back to tell me it was indeed cancerous. I told her just how much her personal call meant to me. It makes a huge difference. I really don't appreciate an agressive doctor myself so I understand where your coming from. Oh and I don't know how true it is but I just read an article this morning about healing the liver. It claimes that lemon in water helps create liver enzymes that are helpful along with garlic, tumeric and I forget the other two foods. Hey it never hurts to try simple things.

Ang


DMlaini,
Good to hear your DH is doing well and can go back to work. Don't be surpised if he comes home exhausted and just needs a nap.



LMP,

 

[luvmarypoppins]

Christine - saw some videos on tv. My heart goes out to you and your coworkers.

Well I was 2 minutes late checking in. So my poor ds are going to have like B50 in the southwest cattle car of our sold out flight, sigh. Didnt think anyone was going down now. Gosh, its school etc.

ang - My ds are 24,23 and 21. The 23 and 21 yr. old are coming just friday to sunday.

My dh has very good ins. We did have an hmo once and it was terrible so we picked a different plan from his work. Its more money but much better.

Well my stuff is laid out and I will have dh help pack it.

 

[SingingMom]

Luvmarypoppins - have a great time and relax. Isn't it f&w right now? That might be why all the people?

I leave next week to visit Dd20 in London with a side trip to Disneyland Paris !!!! Once in a lifetime Mother/daughter adventure as poor DH stays home to work and then gets ready for his knee surgery when I return.

 

[Christine]

Christine - saw some videos on tv. My heart goes out to you and your coworkers.

Thanks for the thoughts. Yesterday I had to go to a contractor facility near the Navy Yard and sit on an interview panel that we had started before the shooting.

At the end of one of the interviews, one of the applicants just broke down crying. It's so stressful for everyone. I guess it's some form of PTSD. They are pushing the counseling very hard. Many offices have been going as groups to just talk about it as a group with counselors. I haven't been yet, myself, because I really don't want to drive back up to work.

 

[mrsklamc]

Christine & angwill- still thinking of you. Emotionally painful, extremely difficult times for sure.

LMP I hope you are loving your trip. Looks like it's warm enough for swimming.

Mixed good/bad news from the sono- good news is that most of the markers for DS were NOT there, heart, brain, and lungs and umbilical cord look good, but it doesn't look like there's a nose bone so that does point to DS. Still praying for a miracle though.

AND my cervix is shorter than it should be- not short enough to be labeled 'incompetent' though but short enough that I have to go in once a week to have it checked. It seems like there is always just one more thing.

 

[luvmarypoppins]

micayla - praying for you. Is this one of those sonos where it looks like a real picture? Sorry, I am not up on the new tech stuff. Are they thinking of stitching you up? My friends dd had to do that. She lost like 2 babies and they finally figured it out. I am glad they are watching you very carefully though so that is good they are on top of everything.

Its nice weather here. It was more like a commando week end with the 2 ds. They were good for the most part and pushed me in the wheelchair a lot. They said sit down and let us push you because if you walk we will only be able to see half the stuff we want to etc.

Friday we got to met up to my cousins I havent seen them in years. Well the guy and his dd and her 2 kids and also his son who is my sons age. So it was a quick time like about 20 minutes after the Mickey Thomas and Starship concert. Loud but fun.

Sat. we went to Hollywood Studios in the morning and then Magic Kingdom at night. We all loved Be Our Guest. We were seated in the more quieter darker West Wing. Fine with us. I can see that there rally arent many tables for 2, so I guess if we try again I am gonna put in 3 or 4 etc. It was set up nice in there and we got to have a picture with the beast. The ballroom is much brighter but more like a cafeteria, so noisy and crowded an jammed together. Our room was so dark.

Then later on my dh lost me. It was a interesting night. Ds 2 finally found me in tomorrowland. Where I waited thinking dh would remember that is the last place we were together. He had taken my phone too.

Yest. we had breakfast at the hotel with the characters and then we went to AK. The Swan was nice and now we are off to the Beach Club. Yeah, I wont have to get dressed in the bathroom again because the ds are gone.

The Food and Wine festival is expensive. My gosh! We bought each of us a $25 card and we burned through it in no time. I was sharing with the ds a lot. So far I only had the lobster slider from Hops and Barley and the sausage and streudel from Germany. I gave them my card. They had something from Africa and Australia I think.

Well I got so sick from eating at the Coral Reef last night so I will see what happens today. That place is def. off our list now.

Hope everyone is doing well.

dmilani - I am sure you will probably be getting the path report this week for your dh.