The THYROID Thread

[Christine]

She said she has to go on the lid every five years for testing., Christine, is this the norm??

Probably the norm for a low-risk patient who has had successive clean scans for a few years. It's probably the schedule I should be on.

 

[Christine]

Okay just read the Heather Muse article. It said at the bottom that she has been in remission for 15 years. So, she has obviously been clean for 15 years; hence the 5 year testing schedule. And, at Stage 2 papillary, she's pretty low risk.

 

[mrsklamc]

The comments on that article are astounding. It's amazing the number of people that think they know what they are talking about that have no clue.

Interesting how the diet varies- of course, it's been years, but no one ever said anything to me about spinach or kale.

 

[luvmarypoppins]

I never heard about the spinach or kale either. I would like fresh spinach in a salad. I cant remember eating any however.

My LID is a combo of the thyca, nih and my rad. onc own rules.

I dont have the list now, but I remember the dietician told me no rhubarb.

 

[Christine]

Hey everyone, how is it going?

The Thyroid Thread has been TOO quiet?

What's everyone up to?

Micayla, how did you do with the Thyrogen? Side effects? What was the outcome or did I miss it?

I've been doing a bunch of boring things. This time of year is my "doctor" time. Last week I had my GYN appointment and mammogram. Thankfully all was normal. On the 31st, I see my endo for my twice a year thyroid check. I'm sure he'll send me for an ultrasound or something since it's been awhile. Still dealing with a hurting back but am trying to just live through it. Fortunately walking and being upright is the best thing for it and I have less pain when doing things like shopping! I've been trying to lose a little weight or eat better and that's going okay. I think I've lost about 3 lbs in the last 3 weeks and have been on my treadmill regularly. I may never look fantastic but I sure do feel better!

My poor dog was diagnosed with hypothyroidism. Can't wait to get her T4 and see her perk up!

 

[luvmarypoppins]

Hi Christine,

Its quiet here because Micayla is at Disney World while dischick and I are enduring more snow and more on tues too? We are so over snow around here.

Sounds like your back issues are bearable. Wishing you all the best. Great for the weight loss. My dh is in china and san francisco right now with 2 of the ds so I miss his back rubs for sure. I havent taken any tylenol yet.

Hope your endo visit goes well. I think I am on the 6 month ultrasound schedule too. Hope you get a good report!!

I finished up my antibiotic on tues and so far , so good. Praise God. I go to see the stomach surgeon Feb. lst. I hope he says no surgery for now.

My blood test is sat. for now if the weather and roads are o.k. Then the endo visit in about 3 weeks.

Oh and I made the air popped popcorn in the microwave last night but put lots of butter on it, so I now have another lid option for next time. I think es told me to try that last time but I didnt get around to it. So I have a mew snack option for next lid time. Its a little hard to swallow for me, so I will use alot of soda.

Hope everyone else is doing well too.

 

[Christine]

Well good to hear from you!! I was wondering why it was so quiet. Oh, to be in WDW!

I know how you feel about the snow. We got slammed last winter and I started to go crazy. We aren't hardly getting anything this year and I'm okay with that.

I do hope your stomach stuff goes well. My mom's coworker had extensive abdominal surgery last year and he sort of goes through the same things that you do. He has these internal drains and there always seems to be some low level infection going on. Very frustrating.

 

[mrsklamc]

In line for snow white right now..... Not sure I have ridden before but giving it a shot since they are tearing it out. Told 'em not to call with my test results til Monday when we are home.

 

[mrsklamc]

Still no results, which I find confusing because it's never taken more than a week before but the nurse was dismissive of me-- 'honey, the test they ordered for you takes awhile.'

Does anyone think the thyrogen made you feel hypo? I thought it wasn't supposed to but I think it's mildly had that effect but can't find any documentation of others experiencing that.

 

[Christine]

I have had the odd Thyroglobulin test take 11 days before. Then I've had it take 3 days. My hospital/lab does not perform the test. They send it out, say, every Wednesday. So if my blood was drawn on Thursday, my lab doesn't ship out to the Tg lab until almost a week later. Then it takes that lab several days to run the test.

I think as time has marched on, labs are sending out more often and so my results have become quicker. You also have to keep in mind that with all the weird weather that the country has been having, shipment/delivery could have been delayed, lab times could be delayed, and so on.

As for Thyrogen, yes, I felt very hypo for 3 days. I thought that was very typically. I remember a lot of people asking if you through you into hypothyroidism. I don't think it does, I think it's just side effects.

 

[mrsklamc]

Well, I was very tired the afternoons of the days I got my shots. But I've been extra tired and crabby this week too... But so have my co-workers with normal thyroids so maybe it's just the lousy weather.

 

[luvmarypoppins]

Micayla - sorry you are still waiting for your results. I am still waiting too but its only been a week and my endo usually does not call etc.

So while everyone is waiting or just needs something to do in this snowy cold winter January, you can all come on in because you are invited to

my 2 year cancerversary today!!, 2 years ago I had the 3 surgeries in 14 hours, had 15 minutes left to live, 7 blood transfusions, on the ventilator and in the induced coma for 2 days, but Praise God I am still here today!!

Tues I am going to the stomach surgeon. I am sure he will b as happy as I am. It seems the antiobiotic has worked. No draining or pain right now so that is so good!!

Micayala - give us a little Disney update when you get a chance

 

[Christine]

Congrats on the 2 year mark. I always feel a little better with each passing anniversary myself!!

 

[mrsklamc]

My gosh- I really thought I remembered to post here! I really think the thyrogen messed w. me more than it is publicized to- and I think they know it too, as they are going to check my TSH 6 weeks out and possibly adjust my synthroid.

Anyway, my thyroglobulin was 'less than 0.5' which she thought was great- the last 2 tests were 6 and 4. I would have preferred undetectable but she seemed to think it was an excellent result and I will take what I can get.

Disney was great except I always try to cram more into the week than really fits. Maybe we need to start going more often.

We visited Typhoon Lagoon for the first time and it was SO nice- Should have known a Disney waterpark would be as nice as any other Disney park.

 

[Christine]

My gosh- I really thought I remembered to post here! I really think the thyrogen messed w. me more than it is publicized to- and I think they know it too, as they are going to check my TSH 6 weeks out and possibly adjust my synthroid.

Anyway, my thyroglobulin was 'less than 0.5' which she thought was great- the last 2 tests were 6 and 4. I would have preferred undetectable but she seemed to think it was an excellent result and I will take what I can get.

Disney was great except I always try to cram more into the week than really fits. Maybe we need to start going more often.

We visited Typhoon Lagoon for the first time and it was SO nice- Should have known a Disney waterpark would be as nice as any other Disney park.

Well, it actually sounds like your result WAS undetectable. Each lab has different levels that they can measure down to. When I first started having Tg done, back in the 90s, the labs could only measure as low as 2.0 or something. So I would get a result of "less than 2.0." As the tests got better and better, that lab value got lower and lower. Different labs have different sensitivities. It sounds like this lab does not/cannot measure anything below 0.5. So, for their lab, they did not detect any thyroglobulin in your sample. I can't remember how low my lab goes but I am going on Monday so I will try to remember to ask my endo.

I think that's fabulous news and you are definitely on the right track.

As to the waterparks, I've been going to them for years and I love them. Typhoon Lagoon is my favorite one, although Blizzard Beach is close. There just seems to be much more concrete and Blizzard Beach.

 

[Christine]

Just got back from my twice-a-year endo appointment. Barring an "upsets" on the thyroglobulin front I don't have to go back for a YEAR!!! My doctor says that based on the "new recommendations" that are out, people in my situation don't need testing so often as it was proven not to have any benefit. Now, this is just for people who are way out from initial diagnosis, who've had several clear scans, and undetectable Tg. I am to have a neck ultrasound every 3-5 years. Since I had that in 2009, I won't go do that until 2012.

I did have blood work done so we'll see how the Tg is doing. I'm always waiting for that other shoe to drop. Other than that, it makes me VERY happy. Not that my doctor's appointments are a huge deal but it just gets tiring and I'm tired of using vacation time for doctor's appointments.

 

[mrsklamc]

Christine, that is WONDERFUL news. I am so happy for you!

Thanks for the clarification on the results, too. That was good to hear as well.

I would have responded sooner but we were preparing for 'icepocalypse.' They are telling us to prepare for a couple of inches of ice as well as downed trees and power lines! Anyone else have a scary forecast?

 

[luvmarypoppins]

Micayla - I am so HAPPY for you. Looks like the 200 rai certainly did the job and bombed the cancer for sure. I did not have those hypo side effects, or maybe I did but it was not noticeable since I am always so tired anyway. Did you get the headache or quesy feeling with the thyrogen? At least its good they are doing a follow up blood test in 6 weeks.

Christine - I am so HAPPY for you too. Wow that is amazing that you dont have to go for a year. I would love to hear those words one day too.
Just wondering what are the "new guidlines"? I know my rad. onc. stated once she did not agree with the 1 week versus 2 week lid.

I am going to the endo probably thurs. and just want to know what to ask etc. I am sure she and the rad. onc. wont let me get away with anything since they say mine is so rare and agressive. My endo thought it would come back by 3 years if it would? But then again she only has had 1 other pt. with my type and it was a guy.

My stomach surgeon visit went very well today. He said its healed well and dont come back for 3 months.

 

[Christine]

Micayla - I am so HAPPY for you. Looks like the 200 rai certainly did the job and bombed the cancer for sure. I did not have those hypo side effects, or maybe I did but it was not noticeable since I am always so tired anyway. Did you get the headache or quesy feeling with the thyrogen? At least its good they are doing a follow up blood test in 6 weeks.

Christine - I am so HAPPY for you too. Wow that is amazing that you dont have to go for a year. I would love to hear those words one day too.
Just wondering what are the "new guidlines"? I know my rad. onc. stated once she did not agree with the 1 week versus 2 week lid.

I am going to the endo probably thurs. and just want to know what to ask etc. I am sure she and the rad. onc. wont let me get away with anything since they say mine is so rare and agressive. My endo thought it would come back by 3 years if it would? But then again she only has had 1 other pt. with my type and it was a guy.

My stomach surgeon visit went very well today. He said its healed well and dont come back for 3 months.

Great news on the stomach issue. That's got to make you feel good!

As for the new guidelines, I don't know if they are the American Academy of Endocrinologist guidelines or if they are some consensus of local endocrinologists or what. But he mentioned that the data didn't show that all that testing was of any benefit. Again, this pertains only to a certain subset of thyroid cancer patients, i.e., clean for many years, never any detectable Tg, nonaggressive form at diagnosis, etc.

 

[luvmarypoppins]

Well I am back from the endo.

She says my levels are great, Praise God! She wants to see me in July and have the ultrasound around then and the blood work too.

I told her the rad. onc. was not planning to do the scan in May, just the thyrogen and blood test etc. She says...(visions of Christine, I asked her specifically) about the scan. She says...we believe the scan doesnt show any additional data that the blood test would show etc. So you would probably have just a scan every 5 years and then the ultrasound every 6 months since yours is agressive.

I am also going to ask the rad. onc. what she says about this since they are on my team etc.

The endo. did get to see my eyes tearing so bad again today. I told her I went to the eye dr. She wants me to go see one of the univ. eye doctors as she feels the radiation has definetely affected my eyes somehow. Has anyone else had this problem, christine, any insight? She said they might have to put dye in them to see??

And I will probably have to get the reclast infusion as soon as they can get the med etc.