The THYROID Thread

[Christine]

Hi everyone!

Micayla--CONGRATS!!!! You must be absolutely over the moon. Please keep us posted on how things are going.

luvmarypoppins--I never did see an oncologist so I can't help you on that one. What book are you reading? I've been going through quite a few books that I get from the library on my Kindle. It's just so convenient to pick them out on line and have them just pop up on my Kindle. Love it!! And the Kindle is so great for "old lady" eyes!!!

I've been having a very rough time lately. I'm having some HUGE issues at work that are extremely stressful. The worst I've ever experienced and it's not going to end soon. I can feel anxiety creeping into my life and I've had some "digestive" issues. The problem is, it all started to go downhill right after my Levoxyl was recalled and I changed to Tirosint.

Now, I cannot tell if I'm just flipping out because of work or if the Tirosint is causing my problems. I have managed to change medications before and I never, ever noticed a thing. I've gone from Synthroid to Levothroid to Synthroid to Levoxyl with nary a complaint. I've just been feeling so weird the last three weeks. I've checked with my endo and he said I should take a little less Tirosint because it is more "pure" and it can be stronger at the same dosage. So we shall see. I had a very bad episode on Wednesday when I took my son on his college orientation.

I really wish that recall hadn't happened at the same time my work life exploded. I've been on the thyca message boards and have been reading some of the posts where people have been having troubles after getting off Levoxyl. That's not helping my anxiety.

Oh well, the weekend is here and I'm going to try to chill.

 

[luvmarypoppins]

Christine - so sorry you are dealing with the stress and the medication issues.

I am sure its hard to figure out if its the med or the stress. Worse reading how everyone else is having difficulty with the switch too.

Funny I was just reading the thy ca website the other day too. I just read, dont post anything.

Sorry you are going to have to be dealing with the constant stress at work. Doesnt help things health wise I am sure.

I wish I had a Kindle. I have hinted about the family getting me one. No luck. I think I may just go and get myself one someday.

Right now I am reading The Hearts Journey by Barbra Cameron Its an Amish fiction book. aww, visions of C. Ann from the community board.

The new book I won is Lock, Stock and Over a Barrel by Melody Carlson. Its a christian fiction book. Its suppose to be funny and light reading.

The other book I just finished I promised the author to write a review on goodreads and amazon which I did.

 

[mrsklamc]

Thanks ladies! After 4 years, we are so happy!

There aren't a lot of details to share yet, but due 2/6.

 

[luvmarypoppins]

Thanks ladies! After 4 years, we are so happy!

There aren't a lot of details to share yet, but due 2/6.

Just wondering, do they have to adjust your thy medication?

 

[angwill]

mrsklmac,

Congratulations on your pregnancy. That is wonderful.

 

[angwill]

Just wanted to update. I found a new doctor who I saw today about the mass on my thyroid that previous doctor wanted me to do an RAI scan on. The new doctor agreed with me that the last doctor was wrong not to send me directly to biopsy. I will be getting that as soon as the hospital can get me in next week, hopefully. I am extremely relieved not to have to get the RAI scan that new doctor said she feels should be reserved for later after thyroidectomy, if needed. I also found out either old doctor or her nurse was not benig honest with me on a bunch of things. I am just relieved this doctor seems to know what she is talking about and cares enough to answer my questions and explain things.

 

[SingingMom]

Just wanted to update. I found a new doctor who I saw today about the mass on my thyroid that previous doctor wanted me to do an RAI scan on. The new doctor agreed with me that the last doctor was wrong not to send me directly to biopsy. I will be getting that as soon as the hospital can get me in next week, hopefully. I am extremely relieved not to have to get the RAI scan that new doctor said she feels should be reserved for later after thyroidectomy, if needed. I also found out either old doctor or her nurse was not benig honest with me on a bunch of things. I am just relieved this doctor seems to know what she is talking about and cares enough to answer my questions and explain things.

Happy to hear you are now on the right path and are more confident with your new doctor! Good luck!

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

 

[mrsklamc]

Just wondering, do they have to adjust your thy medication?

Yes, they will be checking my levels once a month. I was quite surprised that my dose had to be raised already after my first test, as I've actually lost two pounds.

 

[luvmarypoppins]

Micayla - do they want your numbers to still be close to 0 or are they giving you some room so to speak?

angwill - I am glad you are getting the biopsy. I know you said you had no ins. That is why I was mentioning that you might want to check where they send your sample to. Some places have different prices for sure. My surgeon did both, sent it out and did some inhouse at the univ. I think the ones he did inhouse had a shorter turn around time. I know my one was over $3,000. Wising you all the best and I hope you get good results.

Christine - can you believe I just one another 2 books. I gotta get a move on it but this next week I am teaching vacation bible school at my church so the only reading I am going to be doing is the lessons that I am teaching all week for now.

 

[mrsklamc]

You know, when trying I know she was keeping it around one...my TSH was four point something at my first test while expecting so she upped me from 112 to 125, but I didn't actually ask what she was aiming for!

 

[angwill]

Update: Had the biopsy this morning with 9 biopsies. Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid. Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan. Anyone know if that is a day surgery or would I have to stay overnight? Anyone want to share details of theirs thyroid surgery and any advice? Thanks so much,

Ang

 

[SingingMom]

Update: Had the biopsy this morning with 9 biopsies. Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid. Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan. Anyone know if that is a day surgery or would I have to stay overnight? Anyone want to share details of theirs thyroid surgery and any advice? Thanks so much,

Ang

Remember every surgery is different. Mine was 20 years ago and it was a total thyroidectomy, lasting four hours. I was in the hospital for two nights, in the "step down" unit. Bloodwork was done around the clock to make sure calcium levels were good. My friend had her surgery in the past few years and it was same day. Personally, I think it should be a hospital stay. I was pretty weak for a few days.

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

 

[mrsklamc]

Sorry for your diagnosis. 1. They shouldn't still be taking out half a thyroid for cancer. They need to take out the whole thing. That used to be accepted treatment, it's not any more. 2. Mine was what they call a 23.5 hour stay, which makes it less than 24 hours for insurance purposes. (Though IIRC, you're not currently insured?)

 

[mrsklamc]

Sorry my answer last night was brief but I wanted to get the info to you ASAP- removing half a thyroid is no longer considered appropriate treatment for thyroid cancer. They used to leave half a thyroid if it looked fine, but it just comes back, so they don't mess with having people go through two surgeries anymore.

 

[Christine]

Sorry about your diagnosis.

Definitely get the whole thing out. Hopefully your surgeon will know this. I know you've mentioned your lack of insurance so I hope you are able to find a surgeon experienced with thyroidectomies. It's important.

Also, visit www.thyca.org. This is an organization devoted to thyroid cancer patients and survivors. There are messge boards there where you can learn a LOT and also get recommendations from people in your area on surgeons.

 

[luvmarypoppins]

angwill - sorry about your diagnosis. As the others have said, I would def. get the whole thyroid out, not one side.

I would see about staying overnight at the bare min. That way they can check your calcium levels. Also check for any surgical complications.

My surgery was not normal and I had to stay in the hospital for a week.

Try to find a surgeon who does about 100 thyroidectomies a year. Mine did and he still still ran into so many complications with me.

Wishing you all the best

 

[luvmarypoppins]

So how is everyone doing?

Angwill - did you get to make an appt. with a surgeon yet?

I made an appt. for the blood test sat.

After lunch I will look into making the sono appt. Ds2 or 3 will take me to that. I will do it while dh is away.

Need to look into making an internist appt. too.

micayla - how are you feeling?

Has anyone heard of this? I think I just read it (forgot where), it was really her personal comment but then someone else said something etc. I think. She said she had a hard time breast feeding her kids etc. Someone else said there might be a link to that and thy ca??? Never heard of this before. Has anyone else. Just curious as to what everyone elses experiences were. I already had the fibroadenoma out on my L said so that side was not working and I tried breast feeding the first ds and he never gained weight and became a permanent fixture on my chest so after 3 months I gave up. I didnt even think about it with ds 2 since we were in the middle of moving cross country and ds 3 forget it since my sister died 3 days after he was born. But wondering if there is some kind of link???

Christine - I just won 6 books, 2 of them from Goodreads, so I will have a busy summer. Just started one, its short - The Butler based on the upcoming movie. I got a review copy and I got a signed by the author copy of Bomb Shell by Catherine Coulter!

Ok back to the regularly scheduled thyroid thread!

 

[angwill]

Hi, I didn't get notification of everyones posts sorry.

I did see the surgeon and my surgery is July 30th for a total thyroidectomy and at least a day and three quarters in the hospital. The sugeon then said two rounds of radiation but from what I am reading and seeing on utube from the pros one should be enough so I will most likely talk to him about that. I am dreading that the most. Well I have never been in a hospital so the surgery is freaking me out too though.

I too read and saw on utube that you should find a surgeon who does at least on thyroidectomy a month because that is the most important part with thyroid cancer. That freaks me out too because I asked the surgeons nurse if he does them often and she said oh yeah there is no worry there in the last 10 years I worked for him he has done at least 10-15 which means 1 to 1.5 per year. My doctor did tell me if she were going to get the surgery she would go to him insurance or not that he is the best she knows in the area.

Here are the issues, first I live in the middle of nowhere so that is probably why he has not done more than that and most likely nobody in the area has done more. There are no thyroid specialists anywhere within at least a 2 hour radius and even if there were I am a cash pay customer and the one surgeon I got is the only one the doctor knows of anywhere near me that takes cash paying patients on a payment plan. No other surgeon will even talk to me without payment up front and that is not possible for me. Gotta love the American health care system.

 

[luvmarypoppins]

angwill - I am glad you have a surgery date. I would have some concerns about the surgeon. It seems like that is not a good enough number of surgeries for him/her to deal with any complications etc. Is this a general surgeon, ent surgeon etc. But I guess this is the best option for you.

I am sure one dose of rai will be enough. They will tell you what your dose will be etc. They will address all the issues/concerns etc. since you said you live far from the hosp. There is only 1 hospital in our county that does the rai and it happens to be the one where I had my surgery so it worked out well and its close to my home.

I lived pretty close to the hospital. about 20 minutes, but since I also had a draining stomach wound at the time which was unrelated to the cancer but from another surgery I stayed overnight for the rai. It was a creepy experience but had to be done. I dont think I will never look at blue plastic in quite the same way again.

Its probably all overwhelming but just take it one step at a time.

Hang in there!

 

[aym4Him]

I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!

I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!). I just wanted to say hi and thank the OP for starting this. The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive. Most others are like, "Don't you just take a pill? It could be worse!"

My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs. My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal. Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family. However, looking back, I can see symptoms popping up even before that---maybe even in childhood.

On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5. Cholesterol didn't budge much at all. I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis). I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night. It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings. I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies. I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy?? Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!! DH sees him as well .

Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work. Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist. Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone). "Hashi-what??" Turns out, my antibodies were over 1800.

Today, they are in the 400s and I see the "doc" 1x a year. One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month. She has urged me to ask to have mine scanned. I plan to talk to "doc" the next time I see him.

Thank you for indulging me. I'm sorry if this was long. Believe me, they way I talk, it could have been much longer!!

Do any of you have secondary chronic issues? I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels. This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot. Heel spurs. I went from wonky arches with the plantar fasciitis (finally finding out my feet Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel. We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo. Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe. Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).

Ok. Really going now. Nice to "meet" all of you!