The THYROID Thread

[annegirl]

Hi! I just found this thread and hope to be able to go back and read through a lot of it.
A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse.
After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
I am on a med for my heart to slow down my heartrate.
I went to the endo and was put on methimazole- two pills a day.
I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
I went to the dr but he said he had never heard of that happening as a side effect.
I went off of it for two weeks and then went back on at a lower dose- only one pill.
It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
He told me that I have Graves disease.
It is still up in the air about whether I will do the iodine radiation.
I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
I just want to feel normal again! And to have a heart that never skips!

 

[Christine]

Hi! I just found this thread and hope to be able to go back and read through a lot of it.
A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse.
After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
I am on a med for my heart to slow down my heartrate.
I went to the endo and was put on methimazole- two pills a day.
I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
I went to the dr but he said he had never heard of that happening as a side effect.
I went off of it for two weeks and then went back on at a lower dose- only one pill.
It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
He told me that I have Graves disease.
It is still up in the air about whether I will do the iodine radiation.
I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
I just want to feel normal again! And to have a heart that never skips!

I am not an expert on Graves Disease by any means, but many patients opt to have the thyroid shut down by radioactive iodine for the reasons you have already listed. You end up taking multiple medications to try to slow down the thyroid and to smooth over the symptoms caused by the hyperthyroidism. If you have an ablation, you will "baseline" your thyroid gland and then have a lifelong dependence on T4 medications (Synthroid is one brand name). This has it's own issues for some people but, in general, it is not as much of a roller coaster as trying to live with your overactive thyroid gland.

 

[angwill]

Hi! I just found this thread and hope to be able to go back and read through a lot of it.
A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse.
After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
I am on a med for my heart to slow down my heartrate.
I went to the endo and was put on methimazole- two pills a day.
I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
I went to the dr but he said he had never heard of that happening as a side effect.
I went off of it for two weeks and then went back on at a lower dose- only one pill.
It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
He told me that I have Graves disease.
It is still up in the air about whether I will do the iodine radiation.
I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
I just want to feel normal again! And to have a heart that never skips!

I think most people I have seen post have hypothyroidism and most with removal of the thyroid due to cancer. I could be wrong though.

I don't really know much about hyperthyroidism and Graves and have only been hyper twice in about 20 years. I can tell you when I was hyper I did have the awful joint pain and sometimes it would be sore for several days afterward. It is extremely painful and sadly my endocrinologist said it is not a side effect of thyroid problems but I know it is and he says that about everything that I know is related to the meds and/or condition. He just doesn't want to be bothered with the side effects and wants a general practitioner to handle it as something non related.

I have never had heart issues related to my thyroid that I know of.

I do hope you get your answers and get your thyroid back on track where it should be.

Ang

 

[luvmarypoppins]

singing mom - that is so great about the musical. You are very talented indeed! Glad you have your singing voice, sadly I lost mine, oh well. Did you decided which Adventure you are going on?

3disneybuggs - I hope you get good results from the fna

Nora - Its good they are still checking on your nodules.

annegirl -I am sure there is a lot to consider with the ablation. Wishing you all the best.

Christine - how was your dd's graduation? What are you reading? I am reading another Amish story. Kind of boring right now. I just read a historical romance about WWII. I just won a few more books so they are in the tbr pile.

Anyone planning to see the movie, The Fault in Our Stars? Dh says we shouldnt go because it hits too close to home etc

I am beyond exhausted. I was having so much bone pain from the reclast. You could actually hear the bones cracking and popping. It was scary. I called the endo. Of course I got some other on call dr. who called me back. She was useless, said these symptoms should subside,very usual, blah, blah, yeah, yeah. I also had a problem with thesynythroid refill again. Found out they only ordered 3 months. She usually does 6. So f course I hate electronic scrips. I am going over each one next time. Lesson learned.

I also said there is no way I am having this reclast infusion next year unless she gives me a script for a narcotic pain killer for the bone pain. Its too much on me at times.

Busy graduation time for us. Friday was ds3 nursing pinning. It was nice. But long and then we went out to diner with some of his friends. It was after midnight by the time we even started home in a terrible rain storm and I hurt my knee getting in the van so I will def. be using the knee brace a lot more.

Yest. as the actual graduation. Dh and I got smart and I brought my grandmas wheelchair and I sat in it. He actually got the hard plastic chair. When we sat on the chairs fri. we said it was worse than Southwest Airlines. lol. My dh got one of the last parking places in the lot and thank heavens s was called up toward the begging wit the nurses gong first. So we only had to stay there over 3 hours.

I get to do this all over again Fri with ds2 graduation. We are only going to his small dept. ceremony where he gets the actual degree. I am not going to the massive stadium ceremony. Its suppose to be cold and there is also no way I could tolerate sitting all that long. He doesnt communicate well so I dont know what the dinner plans or anything else is.

Then tomm. my dh is leaving for Michigan so he will miss my b day and our anniv. I am so not happy about this. He comes home for the graduation and then next week he is off to Calif. again. My head is spinning lately.

Check in when you can.

 

[SingingMom]

Peter Pan was a success! The younger students especially got quite a kick out of me on stage as a drunken pirate. ;-)

Still up in the air with summer vacation plans. Our friend got his schedule later than last year & unfortunately his ABD tours were all sold out. We are holding out a little longer for a cancellation, but it looks like we might try Disney Aulani in August. Dd20 wants to go to Disneyland and Hollywood, but that doesn't interest me right now. We go to WDW in January, I'd like a beach somewhere!

My internist changed the dosage of one of my medications, because I've gained 20 pounds in two years. :-( BP is elevated too, might need to increase those meds. See cardiologist and endocrinologist in September. Two weeks from now is gynecologist appt and oral surgeon to start procedure for an implant. This week appt with orthopedist for DD20 after 6 weeks of PT on her knees. Enough of doctors!!! Lol

Stay well, all!

"SingingMom" ....Sent from my iPad using DISBoards

 

[luvmarypoppins]

angwill and Micayla - how did your scans turn out. I remember both of you commenting about the thyrogen etc.

My dh friend is getting his thyroid out at Sloan Kettering. Its not cancerous but its full of nodules and hurts him. Dh notices his voice is getting raspy etc. He also has some blood clot issue so I guess its good he is going there. I think its scheduled for July as of now.

 

[Christine]

LMP--Graduation was beautiful. Very nice weather and great speakers! My son was feeling awful so that put a real damper on the day, but otherwise it was a nice day. We've got her moved out but she immediately went on a trip with her friends to Gulf Shores, Alabama. She should be home (permanently) tomorrow. This will be something!!

I am currently reading a book called The Husband's Secret by Liane Moriarity. It's an okay book. Next up will be a book a friend lent me called The Anti-Cancer Life book or something like that. Supposed to be very good.

It should be a fun summer with both "kids" at home. My house feels VERY cramped.

 

[SingingMom]

Well, I spent this evening doing what I do best - spend my DH hard-earned money!! We were disappointed our ABD plans didn't work out the way we wanted this summer, so we went with Plan B. (and Plan C. )

Booked a four night "Mother-Daughter" Trip to WDW in July and a family vacation to Disney's Aulani in August!! Never been to Hawaii, so this will be a neat experience. DD will turn 21 during the trip, so she can enjoy a few "adult beverages" with us.

 

[mrsklamc]

Hi there! I need to figure out how to change this thread's settings so it updates me every time there's a post! I don't know how I changed it. Thyrogen is Monday, which coincidentally means my blood draw will be the same day The Fault in Our Stars comes out. I didn't identify with Hazel when I read it, really, since her cancer is so aggressive, but LMP for you your husband may be right since your experience was outside the norm as well. I loved the book and do plan to see it. It is set in Indy but was not filmed here so it will be interesting to see how they do that.

Angwill did you have your scan already w/o thyrogen? If not PM me and I will give you the info on the grant that is paying for mine. I didn't think I would qualify but you can have income up to 500% of the poverty level.

LMP I hope you had a happy birthday. Your husband must do very important stuff!

 

[angwill]

Hi there! I need to figure out how to change this thread's settings so it updates me every time there's a post! I don't know how I changed it. Thyrogen is Monday, which coincidentally means my blood draw will be the same day The Fault in Our Stars comes out. I didn't identify with Hazel when I read it, really, since her cancer is so aggressive, but LMP for you your husband may be right since your experience was outside the norm as well. I loved the book and do plan to see it. It is set in Indy but was not filmed here so it will be interesting to see how they do that.

Angwill did you have your scan already w/o thyrogen? If not PM me and I will give you the info on the grant that is paying for mine. I didn't think I would qualify but you can have income up to 500% of the poverty level.

LMP I hope you had a happy birthday. Your husband must do very important stuff!

I don't get updates all the time either. I noticed unless I check in on the dis daily it doesn't send them.

I did get my scan with the thyrogen. I would not have done it without there was no way I was going back to hypohell. I would literally rather die. I can not imagine our bodys going through supression like that does not do more permenant damage to our body system such as the heart, mind etc.

I did get the grant as well thankfully and am so glad to hear you qualified as well. What a blessing it is.

LMP, My scan came back completely clean thanks for asking. The spot under my armpit is gone, I think it was a ghost shadow, and there is absolutely no tissue showing in my neck. What a blessing. A friend who went through TT at the same time as me had bad news from hers and it spread quit a bit she had to go back in and get things scraped and cut out. It is just so sad to watch her go through all that. She is going for a higher dose of RAI as well and has little children at home. My heart just goes out to her.

 

[bridgetzoe]

Hi All!

I'm happy to have stumbled upon this thread to share my thyroid story with people who also have a passion for Disney. I was recently diagnosed with hyperthyroidism/Graves Disease a little over a month ago - and I had never heard of it before then. I've seen three endo's and I think I finally figured out that I will end up doing the RAI (radioactive iodine) treatment, even though I wanted to just do the surgery at first. I've been off the methimazole for five days now, but still taking the beta-blocker. Hoping to do the actual treatment within the next month!

It's been a roller coaster because my husband and I wanted to start trying for a baby this year, but that has now been placed on hold until after the treatment and the waiting of at least six months before we can try now.

My thoughts and prayers are with all of you who are going through or have had to go through something like this...it's the worst feeling, and it's hard to explain it to people when you aren't showing any outward signs of problems.

 

[SingingMom]

Hi All! I'm happy to have stumbled upon this thread to share my thyroid story with people who also have a passion for Disney. I was recently diagnosed with hyperthyroidism/Graves Disease a little over a month ago - and I had never heard of it before then. I've seen three endo's and I think I finally figured out that I will end up doing the RAI (radioactive iodine) treatment, even though I wanted to just do the surgery at first. I've been off the methimazole for five days now, but still taking the beta-blocker. Hoping to do the actual treatment within the next month! It's been a roller coaster because my husband and I wanted to start trying for a baby this year, but that has now been placed on hold until after the treatment and the waiting of at least six months before we can try now. My thoughts and prayers are with all of you who are going through or have had to go through something like this...it's the worst feeling, and it's hard to explain it to people when you aren't showing any outward signs of problems.

Best wishes to you! I was diagnosed with Graves Disease and had the dosage of RAI Aug 1991, then a nodule was found and had a a total thyroidectomy for papillary carcinoma. My surgery was Feb 1992, I got pregnant in Nov 1992, and our beautiful, healthy little girl was born Aug 1993.

I will say, I choose NOT to gave the massive RAI treatment after my thyroidectomy, since my body scan came back just over 2% of thyroid tissue present. Since I knew I would be diligent in seeing my endocrinologist for the rest of my life, I decided to take a wait & see if needed approach. Over 20 years later - still good!

"SingingMom" ....Sent from my iPad using DISBoards

 

[3DisneyBuggs]

Waiting is really the worst. 2 weeks after my FNA my Dr calls on Memorial Day to say it is the same atypical result as 6 months ago. So they are doing the Quest molecular testing again. He said a week or 2 for those results. He said the results showed some atypical but now Im wondering if I could possibly have follicular cancer. I will be getting all my reports and will get a 2nd opinion because not knowing and relying on tests is just not for me. I feel like I should get this nodule removed regardless. Thanks for listening.

 

[angwill]

Waiting is really the worst. 2 weeks after my FNA my Dr calls on Memorial Day to say it is the same atypical result as 6 months ago. So they are doing the Quest molecular testing again. He said a week or 2 for those results. He said the results showed some atypical but now Im wondering if I could possibly have follicular cancer. I will be getting all my reports and will get a 2nd opinion because not knowing and relying on tests is just not for me. I feel like I should get this nodule removed regardless. Thanks for listening.

Yes waiting really is the worst. I am sorry you have to go through all that. I have found over the years with my doctors that if the results are bad I hear in about 24-48 hours from testing. If they are good it can take up to 2 weeks to hear back. My FNA cancer results were told to me by my doctor over the phone the same day I had it done. She then asked if I wanted to schedule an appointment to talk to her one on one. I always see having to wait more than 2 days means my results are good.

It is understandable that you are anxious for a definite diagnosis and sometimes a second opinion will make you feel better so go for it. I fired my first doctor who sent me for my ultrasound which showed a mass on my thyroid. She refused to call me herself and her nurse told me I had cancer without a FNA. Then this doctor wanted me to get a WBS before FNA and I told the nurse I wanted a biopsy to tell if it was cancer done right away and didn't want to waste time on a WBS that would not tell us if it was cancer. She told me the doctor said no I had to do it her way. I said no I needed to find a new doctor who listened and explained things to me and I did. She had no clue why the other doctor wanted to waste months on a WBS and sent me for FNA right away. We are our own best advocates.

Good luck and let us know how it goes.

 

[mrsklamc]

It's just occurred to me that I see no surgery scar in ads for The Fault in Our Stars. If I am correct I will find it a disappointing oversight.

 

[SingingMom]

It's just occurred to me that I see no surgery scar in ads for The Fault in Our Stars. If I am correct I will find it a disappointing oversight.

I am late to the party ... Is the movie about thyroid cancer?

I must admit, I have no visible scar. You have to look REAL closely to see it. My surgeon was amazing.

"SingingMom" ....Sent from my iPad using DISBoards

 

[mrsklamc]

The female lead in The Fault in Our Stars is dying of thyroid cancer. In the book she's had a radical neck dissection. You can barely see my scar on the front, but up the side it's much more noticeable. I'd think you'd almost certainly see one on someone with a pixie cut who had that particular procedure, but I could be wrong.

 

[SingingMom]

The female lead in The Fault in Our Stars is dying of thyroid cancer. In the book she's had a radical neck dissection. You can barely see my scar on the front, but up the side it's much more noticeable. I'd think you'd almost certainly see one on someone with a pixie cut who had that particular procedure, but I could be wrong.

Thanks for the heads up. I am cancer free for 20 years, but there's no way I'm watching a movie about someone dying from thyroid cancer!!

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

Thanks for the heads up. I am cancer free for 20 years, but there's no way I'm watching a movie about someone dying from thyroid cancer!!

"SingingMom" ....Sent from my iPad using DISBoards

Spoiler Alert: Don't read any further if you don't want to know. Text is in white.









No one dies from Thyroid Cancer....

It's a wonderful, beautiful story (I've read the book) and I wonder how the movie will do.

 

[angwill]

I had no clue what the person in The Fault in our Stars was suffering from. I thought possibly cancer or cystic fibrosis or some other lung disease. Now I am going to have to read the book and see the movie and it's all this threads fault. lol

I am always looking for good books.