The THYROID Thread

[SingingMom]

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.

I love to read. Always reading! But thyroid cancer is too personal for me to read for enjoyment.

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

 

[luvmarypoppins]

bridget - welcome, although I cant comment about the graves disease. Wishing you all the best no mater what you decide. Hope you get to feeling like yourself soon

ang - hooray for the great scan. Just curious if your friend who had the bad scan did the lid or not.

3 disneybuggs - I am sure the waiting is the hardest. I am sure it will be a decision made after alot of research and thought.

Micayla - I am assuming your scan is tomm? Hows the little guy?

singingmom - your trip sounds wonderful. That is great that you have no scar.

Christine - I am reading a book I won from goodreads. Its a western and boring. I thought I would try something different. Its the authors first book. I think she needs a little work on her craft, lol.

My scar is big of course. Looks like a giant smile in front and then of course up the L side from the lymph nodes and near death experience. I am sure it wasnt pretty getting that 12.5 cm tumor out of there, lol.

Dh still doesnt want to see the movie.

Well my dh is home. Yeah. And now oldest ds has just informed me that his position is being terminated by his employer. How nice of them when they know he probably needs a hip replacement and all the college kids just graduated and probably have a head start now on interviews, searches etc. I did a little research myself right now since he is in the shock and awe stage. I found one job for him. He is lucky that his job now is only in the next town. He probably wont find that ever again for sure. Its going to be a long summer and I am sure going to be praying alot.

I have 2 meetings this week. Sadly I think it will be the last year for our little school here. I also have a new appreciation for teachers because I am also working on my bible school stuff for the kids in July. I love 3rd grade. They arent too bad at that age.

 

[angwill]

singing mom, Your feelings on not wanting to see the movie are completely understandable.

LMP, Thanks for the congratulations on my good scan. My friend with the bad scan only did LID the first time she got RAI and now for the second round she is doing it again. She got thyrogen shots and no LID diet for the testing WBS.

It might be wise to listen to your husband about the movie. Sometimes those around us know us better than we know ourselves. So sorry about your son losing his job. My son lost his job like 3 days before Christmas over another person's error and something his company was doing illegally. He had to fight 3 months for his unemployment since his employer felt he didn't deserve it. Sadly, he is still looking for a job over 5 months later and he has applied everywhere including fast food. We are in a really bad area for employment. Small town USA where the economy wiped out our jobs first and they never recovered. We are still hopeful. We had to close down our company almost two years ago and DH is now driving 2 hours each way for work. We tried to sell our house for the last 3 years and have yet to sell it either so that drive will continue. I will add your son to my prayer list and hope he finds something soon with excellent insurance.

I used to work at a school for Learning and Behavior issue teens, middle to high school. I had previously worked in the special needs classes in elementary school and thought there was no way I could handle the teens but surprisingly I loved it. It really shocked me that it was as rewarding as it was but the school I worked at was small and excellent at working with the kids.

 

[mrsklamc]

I guess I should clarify a little bit; You do find out at the very beginning of The Fault In Our Stars that Hazel, the main character, has terminal thyroid cancer, but overall thyroid cancer is not discussed very much at all, and it is a lovely, beautifully written story. In fact her specific course of treatment/the drug she is on doesn't even exist. I saw a prescreening of it tonight, and was quite pleased with the job they did overall. Usually I love books so much that I'm not at all pleased with the movie version. There are a few things I would nitpick but not a bad job at all. Probably lousy timing though, they did do a very brief flashback of scenes when she is getting treated and with my testing going on I had a moment of "Oh, God, please, I can NOT do this again."

I had thyrogen yesterday and today and a blood test Friday; if that's ok, I won't be doing a scan this go-round.

Baby boy is growing so well and I will be just crushed if I have to be away from him for a scan.

LMP, is the son who lost his job the nurse or is it your younger son that is studying to be a nurse?

 

[SingingMom]

So sorry to hear of those losing their jobs. :-(
Such a difficult thing to go through.
My DH entire department was eliminated 10 years ago and it took him a year to find another job. We were lucky that I was working at the time (for peanuts, at DD parochial school) nod was able to get health insurance for the time period. He had an excellent severance package, so we were never without, but it is a scary feeing. Prayers that all of your sons, etc, find employment soon!

Had oral surgery this week and am up at 3am now, very uncomfortable. Ugh.

 

[luvmarypoppins]

Micayla - I am assuming you didnt get any side efrects from the thyrogen like nausea or headache. Best of luck with the blood test on Friday. I guess you will have to wait for the results?? That is hard for sure.

My oldest ds is the one losing his job. He is in banking/marketing
Middle ds will probably not have a job by october as the internship is not being refunded. He is an engineering science major. I think he needs to go to grad school to specialize in something.
Ds 3 will look for a nursing job once he passes the nclex, Hopefully on the first time since he took a practice test and passed. He will probably do home care since he will only be an rn working on the bsn.

Ds1 told us that he has until august for his job to be terminated so that is good. He could research the hip replacement more.

I told him to look into cobra about the health insurance and he said, what is cobra, oh gheesh.

I have been so tired lately and I dont know why. I am hoping my tsh is not up again. My blood test is next month.

 

[mrsklamc]

No side effects from the thyrogen at all... I think I felt a bit more tired than usual last time, but I don't think I would notice this time

I am sorry you are feeling tired.

 

[branv]

Hi everyone! I was hoping to get some insight on your thoughts on what my new endo had suggested? You were so helpful last year when I was going through my suspicious test results while pregnant, hoping you can extend some more wisdom.

To rehash:

2001: benign FNA on two nodules, mild hypo and hashi DX. Only under care of GP from 2002-2012.

Dec 2012: have been off meds for 2 years bc TSH has been normal. New sono shows nodule growth. FNA shows one nodule benign, other suspicious bc it has hurthle cells and scant colloid (hurthle cells can be benign or malignant but this can only be diagnosed by thyroid removal, not FNA). Also shows extensive lymphocytic background, meaning chronic thyroiditis damage. Affirma test can't rule out cancer either. ENT considers thyroidectomy during 2nd trimester, but consult with super thyroid cancer expert at MD Anderson says don't touch it for now, he can't say there's not cancer, but that hurthle cells are common in hashimotos. He also has some issues with Affirma. Says to just monitor for growth. Perinatologist says TSH is 3.8, but in my situation he wants to see me under 2, and puts me on Levo.

No new growth during pregnancy. In fact, some incremental decrease in size of nodules.

One month after delivery, new sono still shows no change in nodules. Began experiencing issues about 2 months postpartum which I assumed was just normal post pregnancy hormone flush. Realized later it was so so so much more. Obviously went into postpartum thyroiditis ie I went hyperthyroid before going hypo a few months later. Sono in April showed a new 2 cm nodule (though later they realized it had already been there, but was hidden by the other nodules, and just grew enough to finally reveal itself). FNA just says changes consistent with Hashimotos. FINALLY doctor runs not just a usual thyroid test, but also antibodies. My T3 and T4 are normal, but TSH is 10.6 despite being on 50 mcg of Levo, and one of my antibodies that is supposed to be under 9 is over 700!

For the first time of being hypo, I am definitely now experiencing obvious symptoms that affect my quality of life.

SO, finally saw an endo (wow is it hard to find a good one). Very first meeting she tells me I should have my thyroid out. Not just bc of the "suspicious" one, but bc she says I will just keep going through this with new nodules/growth/FNAs, and constant med adjustment. I'm just surprised she said that so fast. Like... eh, it's just a thyroid. I told her I wasnt set against it, but with an 8 month old it wasn't a good time. She said no rush and upped my meds to 1 MCG and switched me from Levo to synthroid.

Ugh... Sorry for the novel. But, i'm just a little confused and unsure if this endo seems to be erring on the side of caution or cavalier. I'd love your BTDT opinions.

 

[Christine]

Actually, I happen to agree with the new endo's consensus.

Your thyroid gland is nothing but trouble. You have several nodules that are changing and at least one you can't get comfort on. My friend had her thyroid out last year and her nodule had the exact same reading as your (Hurthle, colloid, etc). She had many biopsies done. She finally had it out because the nodules were getting large and she could feel them. The one with Hurthle and colloid did have thyroid cancer in it (papillary). It was a microcancer so no one was concerned but, with NOT getting the surgery, she was facing year after year of follow ups, biopsies, ultrasounds, etc. She just didn't want to do it.

Your gland is not going to get better and you will be struggling to regulate for the rest of your life as it swings from functioning one day to not functioning the next. I also don't know if you plan to have more children, but if you cannot get it under control, it could impede that process.

As for the timing of having it removed, it will never be a good time. When my youngest was 8 months old and my oldest was 4 years old, I had to have mine removed because of thyroid cancer. It was no picnic for sure; however, I can't think of any time during their childhood that would have been better. Maybe when they were in middle school? Now, when they are in college is probably the best time!!! To be honest, it might be better to do this when your child is not so mobile. But I understand that this is a lot to take in and I certainly don't want to make it sound like it's an emergency. Just really think about when it would be a good time.

 

[mrsklamc]

I agree with Christine. The surgery itself was not bad to recover from.

 

[branv]

Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh.

I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery

Thank you again.

 

[SingingMom]

Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh. I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery Thank you again.

Each person is different, but I will say from MY experience, my csection and recovery was 10x worse than my thyroidectomy!!

I was in the hospital for two nights. Not sure they even do that anymore. The worst part that I thought was the parade of people taking blood. I was bruised up and down my arms like I was in a bad street fight! But that always happens when they take blood. I bruise terribly. But, the actual surgery and recovery weren't bad, and I had never been in the hospital before that.

Having my darling little girl, however, was a story I rarely tell people unless asked, because if all experiences were like mine, there probably wouldn't be any more babies on the world. Lolol. Just kidding. She was worth every moment of it, but 21 years later, it still is in my mind! Lol

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

 

[Christine]

Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh.

I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery

Thank you again.

My friend had her surgery this past August. It was at NOON on a Wednesday and she was checking out by 1PM the next day. Her family waited while she had surgery and got into her room. Then she just wanted to be alone and she sent them home and told them not to come back until she was being released. She did just fine, she felt fine, and I was surprised at how well she did (she was 48 at the time of the surgery). I think you are fine to rely on nursing staff. I do think that they will want someone at the hospital while you are in surgery so is there anybody you have that can take care of your son for the day. Most likely your surgery will be in the morning and your husband could leave before dinner time.

 

[mrsklamc]

My mom is saying she has 21% nodules. She gets confused sometimes, has anyone received a report like this? They told her the nodules are neither hot nor cold, so they are just going to do it again later.

 

[luvmarypoppins]

branv - I would be wanting to get it out too because you will always deal with all the uncertainty, med adjustments and testing.

I think its true what Christine said, I would rather do it when the baby is less mobile. Probably the only thing you would have to worry about is having him pull on your neck or having him butt his head into your neck etc.

I know what you mean about watching the baby. When we moved to Texas I was up the same creek. I did find a lot of nice girls at church. I didnt even eave my sons at mothers day out until they were at least a year old. My mom came when we were having #3 but my sister suddenly collapsed (she later died) and I had to ask one of the girls at church to watch my boys because my mom had to head back on the plane etc. But mine were almost 2 and 4 by then, so a little older. I am sure eventually you will find someone who you will be comfortable with and trust etc.

Micayla - never heard those percentages used before. Maybe your mom is a little confused with information? Also I am sure you are anxiously awaiting your blood test results.

I am exhausted but I did alot this week end for sure. So that is probably why.
Anyone go see the movie? If you did what did you think etc? Tell me if you think I could handle it, especially if it deals with the dying part. That is dh biggest concern.

Christine - what are you reading? I am almost done with the western. Good, put me out of my misery. I am still going to give it 4 stars because she described the setting etc. so well (texas ranch). and I just won 2 more books from goodreads. Lots of summer reading for me!!

 

[Christine]

Anyone go see the movie? If you did what did you think etc? Tell me if you think I could handle it, especially if it deals with the dying part. That is dh biggest concern.

Christine - what are you reading? I am almost done with the western. Good, put me out of my misery. I am still going to give it 4 stars because she described the setting etc. so well (texas ranch). and I just won 2 more books from goodreads. Lots of summer reading for me!!

I'm going to go see the movie this weekend. Having read the book, I'm prepared. One thing to keep in mind: this isn't really a story about thyroid cancer. It's a story about youth, love, and, yes, the unfairness of it all. At least with the book, I never thought "this is a story about thyroid cancer and OMG I have it and this could happen to me." It sort of along the lines of Brian's Song, Stepmom, Terms of Endearment--just really the injustice of it all and the relationships that we form with our loved ones.

I can't know how the movie will portray all this but I have to say that it was the best book I read of 2013 and it's a wonderful book to read. I cried at the end (I hardly ever cry) but it wasn't over the thyroid cancer issue.

As for what I'm reading now: China Dolls, by Lisa See. I really enjoy all of her books which deal with Chinese Americans and their plight in the U.S. around the time of the WW2. Not a subject I would normally care about, but she tells a great story.

 

[angwill]

MrsK, I never heard of percentages being used for nodules either??? I try and write down what is said when I hear from the doctors of I remember stuff differently than what was said.

I began reading The Fault in Our Stars the end of last week. It has me sucked in. As Christine stated it is very much a love story but also the effects of cancer on everyone involved. When the main character talks about how she feels about herself there are times I have to stop and put the book down or I will be crying like a baby. I rarely cry and don't like when I do. I really think the movie will be like the book and more based on the love story and acceptance.

 

[branv]

Thanks again everyone. I think my brain has finally accepted this is going to happen. Just had to put on my big girl bloomers and get over whining about it

I do wish there were someone but because of distance, logistics and *ahem* family members who would cause more problems than assistance (don't we all have some of those), it really is just us. That being said, DH has a lot of vacation stored up, so at least he can take that time off to be SAHD afterwards. Sheesh. Sure would rather be using that vacation for Disney! I'm afraid we're already in the mobile stage, crawling and creeping like mad, at 8.5 mos he doesn't seem far from walking

Singingmom, I shudder to imagine your story. Though you are a thoughtful rarity in not telling your story -- when I was pregnant, moms came out of the woodwork to share their horror stories, lol!

As silly as it sounds, another reason I'm think of waiting until the end of September is that part of me wants to be sure I have a voice to sing Happy Birthday at his year birthday. I know voice loss is rare, but my father lost his voice to lung surgery, and 20 years later has just a thin gravely voice still.

I simply can't read the Fault book bc I cannot handle even beautiful but sad stories anymore. I made the mistake of reading The Book Thief in the thick of postpartum hormones and I think I cried every 20 pages. Though to be fair, I can't even stand to read the news anymore.

 

[mrsklamc]

Bloodwork was clean! Hooray!

 

[luvmarypoppins]

Micayla - I am so happy for you Good news to celebrate for sure! Hope your dh enjoys his first fathers day too.

Well my ds is going for the 2nd opinion for his hip tomm. I guess we will be looking into the state ins. for him soon. My head spins.

I am still dealing with the tiredness. I know before that the endo said, oh you are always tired etc. So why should I have to feel this way? If the tsh is normal again, then I dont know what her game plan will be etc.