The THYROID Thread

[luvmarypoppins]

What, what is this lol, yes its my special day, today is my 7 year cancerversary!! God is so good for sure. From almost dying and being in the coma to still being here. Dh said - why are we celebrating this, wth??? Well he is taking me out for dinner tonight only he doesnt know it yet. But I know he will be fine with it.

I told ds3, yeah and now you are working at the place where I almost died, hmm.

And in the more good news dept. ds3 told me last night that he is officially going on days the end of March, So happy!!

And in the sad news dept. my cousin told me that his step brother , my cousin died. I really didnt know him well but know his twin sister. Our family is not close sad to say. He was younger than me and had a stroke. He had 4 kids, 7 grandkids and a great grand child. Wow.

Well in the next few weeks I will be having blood tests and the sono to get ready for the endo appt.

Have a great week end everyone!

 

[macraven]

Happy day for LMP

Have a great celebration today!

 

[Christine]

Congrats LMP!! Enjoy your dinner.

 

[SingingMom]

Back from my visit with my DD. Stayed at Beach Club - room was lovely, but I prefer Yacht Club. Just too spread out to get to the transportation, etc. Was very thrilled to leave the 30 inches of snow!! Weather was great Monday & Tuesday, Wednesday was rainy but we spent it doing errands for DD's new apartment. Thursday was miserable. It poured and poured. We did make it around the World Showcase, but threw the towel after that! Later we had dinner reservations at Narcoosee's to meet her friend, and the weather cleared, so we were able to watch Wishes from the restaurant's porch. Friday & Saturday were much better. Flight home was late and I didn't land until 1am. God bless DH, he was waiting at the airport with a smile on his face. Next time we see DD will be for a long weekend in March - she's flying home to get her Broadway/NYC fix.. lol

Had regular bloodwork done - still have to get my thyroid levels checked. I have a call in to my internist - she called while I was away and left message that my cholesterol was too high and I have to start Lipitor. I have to talk to her about that, since during my visit she said it was last resort. Guess my level was bad. I think its hereditary, my brother has the same trouble. My food choices aren't typically high cholesterol - rarely eat red meat, hardly ever eat eggs, don't add butter... not sure what I can change yet.

Back to the laundry - and then to plan my next visit to see DD!

 

[Christine]

Just got back from my twice-a-year endo appointment. Bad news: the lab that was down the hall from the doctor is no longer there so I'll have to add yet another stop to this stupid appiontment! (Can you sense my frustration?). Drove to another lab and had it done just to get it done with. They are testing my thyroid levels (obviously), Vitamin D, thyroglobulin, and a CBC. The doctor also gave me an order for a neck ultrasound (once very 5 years for me).

I did talk to my doctor about the recent reports that have come out about RAI therapy. I had about a total dosage of 330 mci on a VERY low-level cancer. He seemed bothered as to why I had so much and I told him it was the way things were in the 90s. So my concern is for the secondary primary cancers that are apparently "statistically significant" in people who have had RAI therapy. He told me that they mostly worry about leukemia and lymphoma. The studies say that the risk is "double" in irradiated people but that I needed to remember that in non-irradiated people the risk is 1%. So for me, the risk is now 2%. He basically told me not to worry and that we would do a CBC annually.

So that appointment is done for 6 monhts. I just need to make the ultrasound appointment and wait for the lab results.

It feels so good to have it over with, mostly.

 

[SingingMom]

Just got back from my twice-a-year endo appointment. Bad news: the lab that was down the hall from the doctor is no longer there so I'll have to add yet another stop to this stupid appiontment! (Can you sense my frustration?). Drove to another lab and had it done just to get it done with. They are testing my thyroid levels (obviously), Vitamin D, thyroglobulin, and a CBC. The doctor also gave me an order for a neck ultrasound (once very 5 years for me).

I did talk to my doctor about the recent reports that have come out about RAI therapy. I had about a total dosage of 330 mci on a VERY low-level cancer. He seemed bothered as to why I had so much and I told him it was the way things were in the 90s. So my concern is for the secondary primary cancers that are apparently "statistically significant" in people who have had RAI therapy. He told me that they mostly worry about leukemia and lymphoma. The studies say that the risk is "double" in irradiated people but that I needed to remember that in non-irradiated people the risk is 1%. So for me, the risk is now 2%. He basically told me not to worry and that we would do a CBC annually.

So that appointment is done for 6 monhts. I just need to make the ultrasound appointment and wait for the lab results.

It feels so good to have it over with, mostly.

And, I DIDNT have the RAI therapy in 1992 and the radiologist had a hissy fit because I refused it! He went ballistic in the middle of the hospital. I've never met a ruder doctor in my life! Fortunately, my endocrinologist supported my decision. Now that's not now it would have been treated anyway. Don't you want to scream? I think you just have to educate yourself and try to follow the best advice that makes the most sense. Don't worry about the statistics, Christine. It could drive you crazy.

I have to get my thyroid labs done this week to see if the new synthroid dosage is correct.

 

[Christine]

And, I DIDNT have the RAI therapy in 1992 and the radiologist had a hissy fit because I refused it! He went ballistic in the middle of the hospital. I've never met a ruder doctor in my life! Fortunately, my endocrinologist supported my decision. Now that's not now it would have been treated anyway. Don't you want to scream? I think you just have to educate yourself and try to follow the best advice that makes the most sense. Don't worry about the statistics, Christine. It could drive you crazy.

Yeah I always feel like I'm the wrong end of everything.

 

[macraven]

christine,

 

[Christine]

Good morning all. Called my endo today for results. I don't have anything in hand (that will come later when the lab posts to their site), but all is good/normal.

Thyroid levels are very stable, CBC is very good, thyroglobulin is negative.

The best news is that after supplementing each day with only 1000 mg of Vitamin D, I've gone from 24 to 35 on my Vitamin D levels. I didn't think I'd get such a good response since I was as low as I was. I'm pretty happy about that! I may increase my dose of Vitamin D just to get it into a more optimal range.

Glad to have that over with!

 

[macraven]

That's very good news !

 

[luvmarypoppins]

Christine - so happy for your great test results. That was great about the Vit D. I have to take 50,000 twice a week now, gheesh. I am sure the rai is always in the back of your mind. I didnt read the new info. What does it say? I look at it like they had to do it since mine was so aggressive and already spread and made a new tumor etc. I am still here and loving life, except when the ds drive me crazy so its all good and I thank God each day.

macraven - Just saw your moderator status. Hmm, did I miss something. What are you the moderator of? I am sure you will do a great job and congrats!!! Did you find a new endo yet? I hope you can find one you can be comfortable with. Maybe there is a group so if you dont like one you can use another in the group.

singing mom - glad you had a great time visiting your dd. I like the Yacht Club better too. Quieter, you get a balcony, you get on the bus first and its closer to the boat dock etc.

I am sick of the snow. It snowed almost a foot on friday, now 4 inches today and 2 tomm. Ds2 hurt his foot at work. He is following up with the ortho on thurs. So far the er said nothing was broken but he is limping.

I got a nice $800 bill from the lab. Seems they dont have my new ins. info so I will have to send it to them. I guess the hematologist didnt bother to do that, sigh.

Dreaming of Flower and Garden. May cant come fast enough!

 

[macraven]

What a pain to sort out insurance issues LMP
You would think your doc included that info when he has you do the labs

Ouchie for your son
Glad no broken tootsies

Thanks for the vote of confidence on my mod job

I'm at the 4 darkside forums
Universal Orlando parks, etc, hotels, trip reports and discovery cove/sea world forums

It's a calm part of the disboards with many nice posters

I feel your pain with the snow you are having
Snow was the main reason we moved from the north to the South

 

[Christine]

Christine - so happy for your great test results. That was great about the Vit D. I have to take 50,000 twice a week now, gheesh. I am sure the rai is always in the back of your mind. I didnt read the new info. What does it say? I look at it like they had to do it since mine was so aggressive and already spread and made a new tumor etc. I am still here and loving life, except when the ds drive me crazy so its all good and I thank God each day.

The data suggests that those of us that have RAI after thyroid surgery have a "statistically signifiant' risk of developing secondary cancers due to the RAI. It seems that thyroid patients WITHOUT RAI have a higher chance too, but it is a noticeable difference if you had radiation. This has caused the medical field to pause and decide whether it's worth it to treat less risky thyroid cancers with RAI. In your case, I'd say it was a definite "must do." In mind, most likely not; however, my endocrinologist said that while mine was small, I had the "multifocality" feature which makes it more tricky.

Anyway, he tried to calm me by saying that for instance for leukemia or lymphoma, the risk is double if you've had RAI. BUT....the risk of leukemia/lymphoma is 1% in the general population so if you've had RAI, the risk is now 2%. So it's not like it goes from 1% to 70%. Most of the secondary cancers appear within 10 years of RAI treatment.

So I do feel better. He said he's treated patients since 1988 and he has never had one thyroid cancer patient treated with RAI come back with second primary cancer. So while the risk is "statistically significant" (which means it's measurable), it's very small.

 

[SingingMom]

The data suggests that those of us that have RAI after thyroid surgery have a "statistically signifiant' risk of developing secondary cancers due to the RAI. It seems that thyroid patients WITHOUT RAI have a higher chance too, but it is a noticeable difference if you had radiation. This has caused the medical field to pause and decide whether it's worth it to treat less risky thyroid cancers with RAI. In your case, I'd say it was a definite "must do." In mind, most likely not; however, my endocrinologist said that while mine was small, I had the "multifocality" feature which makes it more tricky.

Anyway, he tried to calm me by saying that for instance for leukemia or lymphoma, the risk is double if you've had RAI. BUT....the risk of leukemia/lymphoma is 1% in the general population so if you've had RAI, the risk is now 2%. So it's not like it goes from 1% to 70%. Most of the secondary cancers appear within 10 years of RAI treatment.

So I do feel better. He said he's treated patients since 1988 and he has never had one thyroid cancer patient treated with RAI come back with second primary cancer. So while the risk is "statistically significant" (which means it's measurable), it's very small.

And I think the main thing you have to embrace is that you most likely were treated with the best trends of the time. We'll go crazy if we second guess ever decision. And each situation is different. You both sound like you still might be treated the RAI now, considering your circumstances. My situation was a little different - my arrogant radiologist actually said that he only wanted to do RAI on me as an "insurance policy" - my after surgery body scan came back as "just over" the 2% that they used as their benchmark for doing RAI in 1992. When DH & I explained that we'd take our chances, as we hadn't had children yet and didn't want the RAI in my system if it was only an "insurance policy" , but that I'd continue to be under the care of an endocrinologist to check status, the radiologist went ballistic. How DARE I question HIM! However, if my body scan had shown significantly over the benchmark, I am sure we would have agreed at that time.

I guess the best rule is to be educated and understand so that you are a partner in the medical care of YOU. (and I always add God to my medical team! )

 

[Christine]

And I think the main thing you have to embrace is that you most likely were treated with the best trends of the time. We'll go crazy if we second guess ever decision. And each situation is different. You both sound like you still might be treated the RAI now, considering your circumstances. My situation was a little different - my arrogant radiologist actually said that he only wanted to do RAI on me as an "insurance policy" - my after surgery body scan came back as "just over" the 2% that they used as their benchmark for doing RAI in 1992. When DH & I explained that we'd take our chances, as we hadn't had children yet and didn't want the RAI in my system if it was only an "insurance policy" , but that I'd continue to be under the care of an endocrinologist to check status, the radiologist went ballistic. How DARE I question HIM! However, if my body scan had shown significantly over the benchmark, I am sure we would have agreed at that time.

I guess the best rule is to be educated and understand so that you are a partner in the medical care of YOU. (and I always add God to my medical team! )

I was told that RAI was "icing on the cake" for me. The cake was good but the icing made it so much better.

 

[luvmarypoppins]

Well its been crazy here.

So much crazy weather here last night. Felt like the house was shaking the winds were so strong. At least by the front door anyway.

Sickness is going on here. I finally caved and had dh take me to urgent care as the regular dr. group is not there on wed. And you dont get an appt. the same day anyway. I have been miserable for 2 weeks. They said I have a sinus and ear infection so its an antibiotic for 10 days. No dairy 2 hours before or 2 hours after you take it. Oh and now with my nice new ins. that cost $50, before it was free.

Ds2 is the sickest. On top of the foot which is getting better he went to the urgent care and they tested him for strep and flu and said he had something viral. He insisted on going out to valentines dinner with his girlfriend. He could hardly eat or walk. We talked him into going to the emergency room. They have him 2 liters of fluid and said he has mono. He had spots all over like a dalmatian and of course he refused to stay home from work and rest. Now he has a cold too. No one ever stays home when they are sick where he works. They all keep getting each other sick.

I made the appt. for the sono for next friday and will probably do the blood tests on next sat. Forward motion. I am sure I will feel better by then. My endo appt. is March 13 or 16. Somewhere around there.

I am in desperate need of a dental apt. I didnt go because of the blood thinner and my constant bleeding gums but its going to be something bad I am sure. I have the worst teeth. They always crack etc. This will be costly I am sure.

Check in when you can.

 

[luvmarypoppins]

Well I caved in and am going to the dentist tomm. I can't take the pain anymore. She said since its an emergency visit they are only going to take an xray and see what is wrong.

Its a group and I dont know what dentist I will get. 2 of the ds have been there and said its an ok place.

Also I am wondering if this antibiotic is strong enough. I woke up this morning crying in such sinus pain, glad dh is back from Boston. I asked him to go get me 2 tylenol. If this does not improve I will go see the regular internist.

I am sick of feeling sick, sigh.

 

[luvmarypoppins]

Well I am back from Doogie Howser dentist, lol. So young. He graduated from the Univ. Hosp. dental school.

I knew it would not be good news and it wasnt. At least it is only one tooth in question.

He said basically the tooth is dead but if I want to try and save it I would have to go to a root canal specialist who would have to use special things/procedures to try to find the root if it can be found since its hard to see on the xray and appears calcified and it seems there is an infection on top.

Then option 2, I could go to the oral surgeon and most likely they will pull the tooth completely out and I would have a hole in my mouth until the implant is done which takes 3 months???

He said I should discuss the rai issues with him since I said what would happen etc.

Ds2 has been to the oral surgeon and they are highly respected and well known, the group I specifically asked about before they tried to refer me to a different group.

So decisions, decisions. I did have a root canal before and it was really painful. I am thinking should I just get it pulled and done with???

 

[Christine]

Well I am back from Doogie Howser dentist, lol. So young. He graduated from the Univ. Hosp. dental school.

I knew it would not be good news and it wasnt. At least it is only one tooth in question.

He said basically the tooth is dead but if I want to try and save it I would have to go to a root canal specialist who would have to use special things/procedures to try to find the root if it can be found since its hard to see on the xray and appears calcified and it seems there is an infection on top.

Then option 2, I could go to the oral surgeon and most likely they will pull the tooth completely out and I would have a hole in my mouth until the implant is done which takes 3 months???

He said I should discuss the rai issues with him since I said what would happen etc.

Ds2 has been to the oral surgeon and they are highly respected and well known, the group I specifically asked about before they tried to refer me to a different group.

So decisions, decisions. I did have a root canal before and it was really painful. I am thinking should I just get it pulled and done with???

I would probably consult with the root canal specialist before I made that decision. My friend had to have one done and went to the specialist and apparently it was a fantastic experience. I would do that before deciding on losing a tooth.

 

[SingingMom]

I had a root canal and ended up having to have a dental implant two years later. The implant procedure is very long and drawn out. It was a very annoying experience, to say the least! Mine included some bone grafting, which was painful. The root canal was a breeze. Too bad that didn't take care of it.

My bloodwork came back where she wanted it, so endocrinologist is keeping me at the current level of synthroid. My internist did not like my cholesterol, so now i'm on Lipitor. Since my diet really isn't cholesterol high, she feels it is hereditary. Hopefully this will take care of that. I feel too young to have to use this dang daily pill box! lol

DD is coming home for a quick visit next week, and then I'm flying back with her to spend a few days at POFQ. DH and I have a week planned at the end of April - four nights in Tampa area on the beach and four nights to see DD, staying at Animal Kingdom Lodge. I find I can deal with DD being in Florida as long as I have one trip always planned for the future before the last one is finished. LOL