The THYROID Thread

[kimmie]

Oh so glad to hear you are busy planning your trip!

 

[mrsklamc]

I saw on the YES thread on the budget board that someone's Youth Education Series class was cancelled due to maintenance on the aquarium so maybe it will be fixed by then? Where are you staying this time? Never stayed on site, gotta live vicariously!

 

[luvmarypoppins]

I saw on the YES thread on the budget board that someone's Youth Education Series class was cancelled due to maintenance on the aquarium so maybe it will be fixed by then? Where are you staying this time? Never stayed on site, gotta live vicariously!

We are staying at the Beach Club. My dh has a really good job and of course he treats me like the cancer princess for sure. We booked this with the bounceback rate in May so we got like 40% off the room. Dh will also only sleep in a queen sized bed. We are both big people. I hope we get to swim in Storm Along Bay at least once. And in our May vacation we had the 6 nights of the hotel for free with dh frequent flyer miles. So we have more for the vacation budget this trip.

I am most looking forward to the CP and seeing Michael W. Smith. Of course its all about the food so we have a lunch and dinner adr each day. I love looking at all the christmas decorations. Dh just wants to chill and eat, but of course he is on the phone and laptop. I already laid down the rules. If he wants to work, then I might meet him in a park etc. Last time he was working in the lobby from like 6am to 9 am on the wireless at the YC.

The only 2 new places we are eating at this time are Rose and Crown and Yak and Yeti. I think dh will not like Y and Y. I didnt want that. But he said no Tusker House again. I am also hoping to meet one of the breast cancer gals for a few minutes one day. Met her dd in May (she works at Splash Mtn).

Well with all the drs. visits and procedures I have coming up and the surgery in April, I need this vacation for sure. Hopefully I will be healed enough to go back in May too as she said the post surgical stuff is 6 weeks etc. RAI, dont ya just love it??, except when it scars and damages your tear duct

 

[kimmie]

We will need you to update us on your trip/plans. It is wonderful to hear about your plans!

My Dh is like yours, but I figure if he wasn't a hard worker then we wouldn't have those trips. Our 30th anniversary trip to California was pretty much ruined by his work, and then they let him go 2 weeks after we got back! He is back to consulting where he can leave the work at the end of the day!

Anyway, please keep us updated on the trip!

 

[luvmarypoppins]

Just wishing everyone a Blessed Thanksgiving,

I am just so thankful to God that I am still alive after all I went through.

My cup of blessings is overflowing this year for sure.

I know its weird but now everytime we go to Disney I get my picture taken with the Beast. It just reminds me that I am still here and kicking the beasts butt aka cancer

 

[dischick4778]

Hope everyone had a wonderful and blessed Thanksgiving. I was never a terribly emotional person before cancer but now I'm a big mush. Thanksgiving was wonderful and I feel very blessed to be alive and have my family to enjoy life with.

On the note of cancer related issues, I recently found out my tear ducts were damaged from the RAI as well. My eye doctor put in tear duct implants (not sure what they are called) and gave me eye drops. He says the implants dissolve in 90 days. If they work and make me feel better he can continue to put them in every 90 days or I can have surgery to permanently replace them. Not sure what I want to do yet.

Glad to hear Disney trip plans are being made. That is what keeps me sane. We are planning to go back in July, staying at Animal Kingdom Lodge again, Kidani Village was beautiful. Hope you are all doing well!!

 

[luvmarypoppins]

Jenn - sorry to hear you are having all the eye issues too. I know my friends friend called them plugs? but I think she is having the permanent thing done now.

My surgeon called them stents. I dont know what the correct term was. Surprisingly my surgeon did not even talk about a temporary option. I guess I just want to get it done with once and for all. She also said if I am getting more radiation, she will just do the other eye ahead of time, so I dont have this problem again etc. I dont know if that would be the temporary or permanent procedure??

Back from Disney. I love it at Christmas time. The weather was decent. Loved our room except on the last day when the room started gurgling and brown stuff was coming up out of the shower. Hmm, this is the Beach Cub?

Loved the Candelight Processional with Michael W. Smith. Enjoyed a lot of the food. Chefs,Grand Floridian Cafe,Brown Derby etc.

Got to meet Teena from the Beach Club, Lisa from the Breast Cancer thread on the CB and Ray Sharpton, famous scooter decorating diser!

We booked the Beach Club again for our usual May and Dec. now turning into late November trips. Hope they get the plumbing issues resolved.

And while there I experienced the unusual stomach pains. Once it took my breath away. I dont know if this is a gyn problem or the surgeons problems. I guess I will wait and see what is happening. Its scary and frustrating all at once.

 

[dischick4778]

Plugs, that sounds familiar, perhaps that's what my Dr. called them.

Sounds like your trip was wonderful! I've been a few times in Nov. and it is so nice to see all the decorations without dealing with the Christmas crowd. I'm surprised to hear about the bathroom issue at Beach Club, I would expect better. Perhaps it was just a fluke.

Did you eat at Rose & Crown? How was it? I've been trying to convince my family to go there, but in looking at the menu they are not sold. We are staying 8 nights in July and need one more dinner place to pick so I look forward to your comments on R&C.

Hope you are feeling better!

 

[mrsklamc]

Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.

I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!

 

[dischick4778]

Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.

I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!

Great news! Thanks for sharing. Wishing you all the best along the way. I hope it's not too complicated for you.

 

[WDWDancer]

Hi All - Hope you had a great Thanksgiving! I was able to go home and spend some time with my family it was so nice. I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.

My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!

HOW IS THAT POSSIBLE?!? The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays

Thanks all

 

[mrsklamc]

Are they transitioning you to cytomel at all?

Are you taking your synthroid an hour apart from any other food or pills w/ a full glass of water? Are you taking brand or generic?

 

[WDWDancer]

Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.

I take brand name synthroid (same pharmacy for past 2 yrs). I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening. I've been shaking my head trying to think what routine I might have changed....

 

[Christine]

Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.

I take brand name synthroid (same pharmacy for past 2 yrs). I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening. I've been shaking my head trying to think what routine I might have changed....

What dosage are you on?

It's also a shame that with your TSH being over 60, they can't just give you the RAI now.

 

[luvmarypoppins]

Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.

I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!

Micayla, wishing you all the best.

 

[luvmarypoppins]

Hi All - Hope you had a great Thanksgiving! I was able to go home and spend some time with my family it was so nice. I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.

My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!

HOW IS THAT POSSIBLE?!? The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays

Thanks all

Sorry to hear that you have to have the RAI, but after it is all done you will know that you did your best and all that you could to kick this in the butt. If you have any questions about the diet, just ask.

I always thought that the worst season to do the diet would be the winter, but if you get really creative, you can do alot of things. Just the fresh fruits might be a little more expensive etc. And if you find the fresh vegetables limited in what you like, I was allowed to have Birdseye Steamfresh ONLY,NOT the sauced varieties, just plain. Read the labels!!

Wishing you all the best. Hang in there!

 

[ge0rgette2]

I haven't been diagnosed with a thyroid issue, but feel I should be!

I have been tested before and thyroids levels come back 'normal'.
I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.

Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..

I'm going to read thru the thread tonite

Hope everyone feels well - enjoy your holidays!
Georgette

 

[dischick4778]

Visited my endo today, she is happy with my blood levels. Said she is planning for a neck sono in April. If that comes back clear she will not have me do a full scan next year. I'm not sure how I feel about that. Happy I would not have to go on the diet or nervous that something might be missed. She also said if my levels stay as is she will lower my dosage to 175. I know this all seems like good news, but I'm a rather be safe than sorry type.

Hope you're all enjoying the holiday season!

 

[Christine]

I haven't been diagnosed with a thyroid issue, but feel I should be!

I have been tested before and thyroids levels come back 'normal'.
I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.

Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..

I'm going to read thru the thread tonite

Hope everyone feels well - enjoy your holidays!
Georgette

I struggled with anemia a few years ago. Since I already had a known thyroid issue (I don't HAVE a thyroid), I was just sure that all my troubles came from that. I was tested and retested a zillion times (normal), changed medications/brands, it made no difference. I had horrible symptoms that I attributed to low thyroid even though the thyroid had been ruled out. Nope it was anemia and then after the anemia was corrected, low ferritin. I got way more worse symptoms from that than I ever got from being severely hypothyroid. Even though you are getting the IV infusions, that's really only a bandaid. I'm betting it is your chronic anemia problems.

 

[luvmarypoppins]

Visited my endo today, she is happy with my blood levels. Said she is planning for a neck sono in April. If that comes back clear she will not have me do a full scan next year. I'm not sure how I feel about that. Happy I would not have to go on the diet or nervous that something might be missed. She also said if my levels stay as is she will lower my dosage to 175. I know this all seems like good news, but I'm a rather be safe than sorry type.

Hope you're all enjoying the holiday season!

Jenn, glad your endo visit went well.

My rad. onc. and the endo both believe that if you have 2 clean scans then the blood testing and sonos are fine. My rad. onc. says she will only do another scan at the 5 year mark I think.

Also if you want to TTC again, you should really limit your radiation exposure anyway. With a scan you have the radiation exposure even though its a lower dose etc.

And Christine said this was true too, when I asked, the rad. onc. and endo both told me that the blood tests and sono together are just as good as a scan. The results of both would be about the same.

You will feel so much better when you go from 200 to 175. I definetly felt more normal and less high strung.

Also...is this a 6 month sono? My endo wanted to put me on the 6 months of blood testing and the one year of sono. I told her, no I still want the sono too at 6 months. I am with you on the better safe than sorry stuff and since you also have a rare variant like me, I think I would still ask for the 6 month sono too, because you have yourself covered both ways, blood and pictures etc.