The THYROID Thread

[angwill]

ang - my endo told me just to take a couple of tums a day for the calcium.

My vitamin d must be really low because I have to take a prescription supplement once a week its 50,000 iu and you cant get that high a dose over the counter. Of course my ins. does not pay for it but its not too expensive.

How are your nausea issues? I agree with Micayla. the 200 mci really throws you for a loop!

Maybe try smaller meals more frequently and experiment with things to see what you can tolerate. Do you have any taste issues?

Tums is a good idea I will take those and see if that level goes up because of it. My D was pretty low they noticed because they took on parathyroid and it was really swolllen from the lack of D.

The nausea is better this morning. The first night and first two mornings or when I layed down it was pretty bad. I was just eating the crackers, drinking water, and sucking on sugar free lemon drops till the afternoon when it would feel a bit better.

No taste issues so far. We shall see. I did get 100 mci not 200 thank God.

Thanks for the advice. I appreciate any I get.

Ang

 

[luvmarypoppins]

Well its September and we all know what that means... Oh yeah, Its Thyroid Cancer Awareness Month!!

One of the authors I follow just posted something on her facebook page since she is a thy ca survivor.

Very sad..one of the ladies on the breast cancer boards passed away. She had bladder cancer. I met her with another lady 2 years ago at Epcot. She was there when we were both there in May again but I kept texting and she said the chemo was making her too tired etc. so we didnt get a chance to meet up. Very nice gal.

ang - how are you feeling?

Micayla - I laughed because my ds asked me, what is a husker? I think its something they saw on tv. I said - your cousins are Huskers. They live in Neb. etc. He just said, oh.

Well I went over our trip plans with youngest ds He said, there is just one problem. I said what? He said I have to eat a Mickey waffle! Yeah, you can tell all my ds grew up Disney! So I told him we will go to the Garden Grove buffet since its right in the hotel. I know they have Mickey waffles there etc.

Also youngest ds starts his clinical rotation at the hosp. this week. I wish he would get a thy ca patient. That would be awesome! He cant pick or choose, he just get assigned ones. Hmm, maybe he could ask his instructor? I dont know what the rules are.

 

[luvmarypoppins]

ang - you survived the week! How are you feeling?

Micayla - how are things going?

Christine - is your ds getting adjusted to college life?

Well next week I am going to the internist that my endo picked out for me. So we shall see how that goes. I am sure it will be an experience. I think these drs. kind of shake their heads after I leave and say, what have I gotten myself into with this one After I made the appt. i realized that is the day I usually have my school meeting. Oh well.

 

[DMLAINI]

My husband was just diagnosed with thyroid cancer. He's having his thyroid removed at the end of the month. Any advice for us? Also, is it typical to get the RAI after having your thyroid removed? Thank You!

 

[1Grumpy9]

ang...I have to agree with luvmarypoppins...My endo told me when I felt my calcium go low, chew tums. She also put me on a Calcium emulsion (it has the consistancy of milk of magnesia). That isn't a script per say, but my pharmacy does keep it back behind the counter. I also take a script for calcium called Rocaltrol (generic is Calcitriol) and that I take every day.

When I got out of the hospital with my surgery, I was on 20 tums a day along with 4 caltrate pills. That was really hard to swallow after just having major throat surgery. I also try to have as much calcium based foods as possible. I know it isn't the best for me (like ice cream), but I know I am getting some calcium and vitamin D out of it.

luvmarypoppins...good luck with the new endo. I hope it works out for you. I know changing endo's can be scary esp. if you liked your last one.

 

[SingingMom]

Just came back from my yearly endo appointment. Gained a few pounds (blaming it on perimenopause, not the apple strudel we had on our Germany Adventures by Disney tour!) but everything looks good. Follow up ultrasound before my next appointment next September.

21 years cancer-free!! Hang in there, friends!

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

 

[luvmarypoppins]

My husband was just diagnosed with thyroid cancer. He's having his thyroid removed at the end of the month. Any advice for us? Also, is it typical to get the RAI after having your thyroid removed? Thank You!

sorry to hear that, but glad you found us. I know the difference in metabolism will mean different med. doses than what we mention here.

Guess he had a fna and did they say what kind they think he has?

I know there are a few men on the thyca.org website. That might be a good place for him to go and share with them, just saying that from what I read there they seem to have issues with med dosages and finding the correct levels etc. I dont post there but just read along. My favorite guy there is cflo. I think that is his user name. He has had a recurrence bu the is some fighter!

My advice, make sure he has a good surgeon.
Dont rush stuff post op. Get things that are easy to swallow at first like pudding, yogurt, mashed potatoes etc.

I guess then after the surgery you just play a waiting game until you get the path report. Then you will see what the plan is etc.

Make sure you have a good endo too. You will be seeing him/her a lot so its good to find someone you are on the same page with.

Also dont push the voice after surgery. Your dh will need time to heal.

I can see you are being supportive already!

Wishing your dh all the best.

 

[luvmarypoppins]

1Grumpy9 - I am glad the new med is working. Like you I can only get a 30 day supply of meds unless I do mail order and I dont want to do that as it has to be generic I think. I know I would save money but I feel like it will hurt the local economy here, one being my neighbor who is a pharm tech etc. Maybe in the future if I really need to save money I will do it

SingingMOm - congrats on the great report! Like Christine, glad to hear of the long term survivors here! Wow, your Adventure by Disney sounds Amazing. Can you share a little? I have been on the cruise and was not that wowed. It sounds interesting! I would need something not too much walking etc Doubt that is what they would call an adventure!

 

[luvmarypoppins]

1Grumpy9 - I forgot to say, I am not getting a new endo. I am getting a new internist instead of my gp who I cant stand and never go to. He totally misdiagnosed my cancer.

I love my endo. I dont know what I would do without her. She is pretty new so I think she will stay for a while and I saw they just got a new endo. A female. I think because I saw there are just so many people around here being dx with thy ca.

 

[SingingMom]

SingingMOm - congrats on the great report! Like Christine, glad to hear of the long term survivors here! Wow, your Adventure by Disney sounds Amazing. Can you share a little? I have been on the cruise and was not that wowed. It sounds interesting! I would need something not too much walking etc Doubt that is what they would call an adventure!

This was our second ABD! We'll never travel to Europe without them!! (Except next month, when I fly solo to visit DD20 during her semester in London!)

Germany was gorgeous! Never imagined how beautiful. Can't find words to describe the mountains and adorable cities! LOTS of walking, but the guides take care of EVERYTHING! You "show up"! The extra perks of special tickets, personal tours, hidden gems, no lines at many high profile sites, fabulous dinners. We had such fun!!

Last year was London/Paris with ABD, and that was equally wonderful. If you ever have the opportunity for an Adventures by Disney tour, we highly recommend it!!

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

 

[Christine]

SingingMom--Have you done tours to Europe without using ABD? I'm just wondering how they compare. I'm trying to encourage my parents to go on a trip to Europe and was wondering how ABD compares to any other tour you may have been on.

 

[SingingMom]

SingingMom--Have you done tours to Europe without using ABD? I'm just wondering how they compare. I'm trying to encourage my parents to go on a trip to Europe and was wondering how ABD compares to any other tour you may have been on.

No, we have only traveled to Europe twice, both with ABD. I truthfully never had a desire to, but DD has the travel gene! It was a belated HS graduation gift and ended up being the trip of a lifetime. Definitely a good introduction to international travel! Disney takes care of everything and then some! We felt it was worth the cost. We met wonderful people we still keep in touch with and adored our guides! Any specific questions, just ask!

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

 

[mrsklamc]

My husband was just diagnosed with thyroid cancer. He's having his thyroid removed at the end of the month. Any advice for us? Also, is it typical to get the RAI after having your thyroid removed? Thank You!

Yes, RAI is pretty standard. Make sure he has a very experienced surgeon, it's a lifelong pain in the rear if parathyroids get damaged. If he has to go on the low iodine diet, we can offer more advice. Sorry you're going through this.

 

[DMLAINI]

sorry to hear that, but glad you found us. I know the difference in metabolism will mean different med. doses than what we mention here.

Guess he had a fna and did they say what kind they think he has?

I know there are a few men on the thyca.org website. That might be a good place for him to go and share with them, just saying that from what I read there they seem to have issues with med dosages and finding the correct levels etc. I dont post there but just read along. My favorite guy there is cflo. I think that is his user name. He has had a recurrence bu the is some fighter!

My advice, make sure he has a good surgeon.
Dont rush stuff post op. Get things that are easy to swallow at first like pudding, yogurt, mashed potatoes etc.

I guess then after the surgery you just play a waiting game until you get the path report. Then you will see what the plan is etc.

Make sure you have a good endo too. You will be seeing him/her a lot so its good to find someone you are on the same page with.

Also dont push the voice after surgery. Your dh will need time to heal.

I can see you are being supportive already!

Wishing your dh all the best.

What does fna mean? I know the nodule is less than 1 cm & right in the middle of his thyroid. It also has calcification.

 

[SingingMom]

What does fna mean? I know the nodule is less than 1 cm & right in the middle of his thyroid. It also has calcification.

Fine needle aspiration?

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

 

[mrsklamc]

Micayla - how are things going?

Well, since we aren't dealing with enough DH's mom has breast cancer. It's a kind that should be very treatable, but it's frustrating. It's the busiest time of year for DH's work and I don't know if I am allowed around her if she needs radiation/chemo, etc.

 

[luvmarypoppins]

Micayla - so sorry to hear about your mil. You and your dh have too much on your plate right now for sure. Wishing her all the best. Sending prayers. When is her surgery?

Well I am back from the new internist today and guess what...I gained more weight!!!

Christine ...since the tsh went up, do you think I should ask the endo again about the weight. This is the 3rd doctor and 3rd time its gone up since June I think. Very frustrating to me.

I wasnt to impressed with this dr. personality for sure. Neither was my dh. But she has great credentials, John Hopkins, Columbia etc. She just was all business like, not very compassionate.

I had an ekg, lung test, pulse etc. She says she doesnt see anything sticking out at her, but I have a "complicated history". Yeah, like I dont know that!

So I went out of there with her saying: I have a lot of homework for you and lets call this the 100Kmile check up

She wants me to have:

blood work
x ray of the R hip, R knee and chest
holter monitor
sleep study
echocardiogram
thallium stress test

Oh and she didnt even mention a flu shot!

My head is spinning right now. I know some things I have to see about my ins. because they are mentioning one place to go and I dont think my ins. covers some of those places etc. So it will be a process. I am not looking forward to all of this at all.

Oh Christine. Thought of you because my dh has to go to the Dept. of (sorry I never say that on a public forum). He has to give a little speech/presentation. He said he has never been to this one particular place before so it should be interesting. He is going with other people. He is just part of an entire presentation. I think that is mid oct.

Well everybody check in when you can.

 

[mrsklamc]

Gosh that's a lot of tests! I have no idea what some of them are.

DMIL's surgery is Friday, and we've decided to go since DFIL is not so great with medical stuff. So I have an ultrasound first thing tomorrow, then driving all day, the surgery is Friday, we'll stay Saturday and drive back Sunday.

 

[Christine]

Christine ...since the tsh went up, do you think I should ask the endo again about the weight. This is the 3rd doctor and 3rd time its gone up since June I think. Very frustrating to me.

As you know, everyone is different, however, your TSH (even elevated) isn't in the range to set off any alarms that it would cause weight gain. However, it *is* a change and your metabolism does slow down when your thyroid hormone is reduced, so it could cause something slight in the gaining area. Alternatively, my endo says that a lot of his 'hyper' patients gain weight because they are so hungry all the time yet they don't quite burn it all off.

I wasnt to impressed with this dr. personality for sure. Neither was my dh. But she has great credentials, John Hopkins, Columbia etc. She just was all business like, not very compassionate.

Sounds very typical of most doctors these days...sigh...

blood work
x ray of the R hip, R knee and chest
holter monitor
sleep study
echocardiogram
thallium stress test

Looks like QUITE the cardiac work up. The Thallium stress test is the one where you don't actually have to run on the treadmill, correct? It simulates that for you?

The echo and holter are all easy enough. Are they looking for cardiac issues? Guess the sleep study goes along with that in order to rule out apnea. A friend of mine is going through all of these tests because he's having unexplained shortness of breath, fluid retention, and a host of other symptoms and they can figure it out. I know he just had to do the sleep study too.

Oh Christine. Thought of you because my dh has to go to the Dept. of (sorry I never say that on a public forum). He has to give a little speech/presentation. He said he has never been to this one particular place before so it should be interesting. He is going with other people. He is just part of an entire presentation. I think that is mid oct.

Well, I wonder if he will be in my neck of the woods!!

 

[luvmarypoppins]

Christine - I posted on the other thread. I am so happy to hear you are safe but so sad about those who were lost in this senseless act. I am sure you are an emotional wreck. I hope you can rest and recover emotionally. I am sure you are drained. Thinking of you.

Micayla - how did the ultrasound go? Hope things are going well. How was your mil surgery? I am sure that is hard on your mil. The breast cancer girls on the comm. board thread are really encouraging. They are a wealth of information and I always admire their strength and courage. Sending prayers.

I am going to try and get my blood tests on Friday. I know they wont be thyroid stuff, lol.