The THYROID Thread

[luvmarypoppins]

Oh Micayla, I am SOOOO Happy for you.!!!!

Its time to celebrate.

Just keep letting the rai do its thing.My rad. onc. said something like its dead, but it just doesnt know its dead yet (referring to the remmnant. She said it would take up to a year for it to be gone.

Blessings to you always.

 

[es45]

So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!

I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago? But I will take good news as I get it!

Great news!

 

[luvmarypoppins]

Well my bff in texas asked me about the thy ca conference again. I cant believe she would still do that for me.

I printed out the list of talks. Has anyone seen it? Really I dont want to "bore" her listening to all this plus its a hike for her to get there and I would want to pay her registration fee etc.

My one goal was to find out stuff about, of course, my rare variant. Well there is only ONE workshop/talk etc. on the rare variants. Hmm, is it so rare there is not any info etc?

Just wondering if anyone has looked at the program of talks etc. If you did what would you want to listen to yourself, etc.etc.

I would feel bad asking her to go just to listen to one talk, but her friend, who has follicular and has distantly spread - spine etc. and has been to md anderson might want to go, she didnt ask her yet. I would also feel bad if she dragged that girl there because she said she takes morphine for the pain all the time etc.

Any opinions, thinking of you Christine and Micayla and es.

 

[mrsklamc]

No, I've not looked, just because I knew I wouldn't be able to go.

 

[luvmarypoppins]

So how does this sound?

Friday oct 15th:

9:45-10:45 Open Mike Survivors/caregivers roundtable (This would only be of interest to her friend I think. These are the only sessions then.

10:50 - 12:00 pm - Session 126 - Understanding Variants of Differentiated Thyroid Cancer (Hurthle, Tall Cell, Insular, Columnar, etc. ) and their managemet issues. (THIS is the ONE I really want!!)

12:15-1:00 - Lunch and Learn Roundtables, Bring your own lunch?

Session 131 - The Thyrogen Story: users, Benefits, Challenges, and Limited Access (You know I am biased about this one too!!)

1:15-2:25

Session 143 - Surgical Treatment of Thyroid cancer - I dont really care about this. Maybe she could actually go for lunch. The only thing I would be interested in hearing is about a neck dissection on both sides, since that could possibley happen to me in the future.

2:40 - 3:50 - 153 Treatment Options for TargetedTherapies for Advanced Cancers, Including what Patients can expect from these treatmets and what they should look for in pursuing Care (This would be for her friend)

4:05 - 5:15 - Long Term Management of Differentiated Thyroid Cancer.

There are classes on sat. that would be o.k. if that is the only day she could go. I will type that later and ask your opinions too much typing right now.

 

[mrsklamc]

I agree with your choices....down to not being very interested in surgery. Hoping to be done with that!

 

[Christine]

So how does this sound?

Friday oct 15th:

9:45-10:45 Open Mike Survivors/caregivers roundtable (This would only be of interest to her friend I think. These are the only sessions then.

10:50 - 12:00 pm - Session 126 - Understanding Variants of Differentiated Thyroid Cancer (Hurthle, Tall Cell, Insular, Columnar, etc. ) and their managemet issues. (THIS is the ONE I really want!!)

12:15-1:00 - Lunch and Learn Roundtables, Bring your own lunch?

Session 131 - The Thyrogen Story: users, Benefits, Challenges, and Limited Access (You know I am biased about this one too!!)

1:15-2:25

Session 143 - Surgical Treatment of Thyroid cancer - I dont really care about this. Maybe she could actually go for lunch. The only thing I would be interested in hearing is about a neck dissection on both sides, since that could possibley happen to me in the future.

2:40 - 3:50 - 153 Treatment Options for TargetedTherapies for Advanced Cancers, Including what Patients can expect from these treatmets and what they should look for in pursuing Care (This would be for her friend)

4:05 - 5:15 - Long Term Management of Differentiated Thyroid Cancer.

There are classes on sat. that would be o.k. if that is the only day she could go. I will type that later and ask your opinions too much typing right now.

Sounds good. If I get a chance I might take a look at the whole agenda and see what looks good. I work in a government financial position and we are closing out the fiscal year tonight. This week has been tough!

 

[luvmarypoppins]

Well its october and we all know what that means..National Thyroid Cancer Awareness Month

On my hospitals website is a little article by my rad. onc. She states..the survival rate for 5 years is 90-95%, extols thyrogen and says the hosp. is the only place in the county to get the rai. Dieticians help with the lid (yeah, I drove that girl Crazy Said what signs to look for etc. I guess it got listed on the bottom of all the other cancer awarenesses for the month of october, but heah, it was something. Last but not least kind of thing.

I got some blood work done yest just for general stuff from my gp so we will see how that goes.

Christine - saw your thread about the ins. My endo charges $220 a visit. I only have a $30 co pay.

 

[dischick4778]

I have been reading all your posts but have been in denial lately. Since I went back to work and things have been kind of normal it is easy to pretend like this thyroid thing never happened. And then someone asks about the scar on my neck. Back to reality.

I had my first endo visit this past week. She says the numbness I feel is due to lack of calcium. She thinks the parathyroids have basically died off and apparently they control how your body absorbs calcium. So now I am taking calcitriol (a prescription to help calcium absorbtion) along with 2,000 mg calcium every day. Additionally she changed my synthroid dosage from 150 to 188. I recently met someone taking natural thyroid. Anyone have experience with this? I asked my endo and she said it isn't controlled enough or studied enough for her to trust it. But the woman I met who takes it swears by it. I don't know much about it.

Anyway, hope you are all feeling and doing well.

 

[es45]

I have been reading all your posts but have been in denial lately. Since I went back to work and things have been kind of normal it is easy to pretend like this thyroid thing never happened. And then someone asks about the scar on my neck. Back to reality.

I had my first endo visit this past week. She says the numbness I feel is due to lack of calcium. She thinks the parathyroids have basically died off and apparently they control how your body absorbs calcium. So now I am taking calcitriol (a prescription to help calcium absorbtion) along with 2,000 mg calcium every day. Additionally she changed my synthroid dosage from 150 to 188. I recently met someone taking natural thyroid. Anyone have experience with this? I asked my endo and she said it isn't controlled enough or studied enough for her to trust it. But the woman I met who takes it swears by it. I don't know much about it.

Anyway, hope you are all feeling and doing well.

What are the specifics of the numbness?

As for natural thyroid, I began taking Armour a few months ago. I was on synthetic for 20 years before making the switch. Early on, the synthetic was fine; the last 5-8 years it been very difficult to maintain my levels. For me, taking Armour was an incredible change, my overwhelming fatigue is reduced, my mind is clearer. The change was so marked that my DH sent a message to my endo pleading with her not to take me off of it after the first month. I've read that there were some problems with availability, but I've yet to experience that.

Please research making such a switch carefully because as with any medication, there are advantages and disadvantages to consider.

 

[Christine]

Christine - saw your thread about the ins. My endo charges $220 a visit. I only have a $30 co pay.

That post was actually in regards to my son's pediatric pulmonologist. I just stated that it was for me because I didn't feel like going into details about who/what it was for since most post was already lengthy!

Get this--my endo charges $90 per visit. $25.64 is not covered. The "considered balance" is $64.36 so I only pay 20% of that. At $12.87, that visit is a DEAL!!!!!

On the other hand, my son's pulmonologist is now charging me $367 for the visit which does not include the breathing tests. They no longer participates so I have to pay 20% of the allowable charges and then pay the non-contract (non-allowable charges). Every visit will cost me $223.00.

 

[Christine]

I recently met someone taking natural thyroid. Anyone have experience with this? I asked my endo and she said it isn't controlled enough or studied enough for her to trust it. But the woman I met who takes it swears by it. I don't know much about it.

Anyway, hope you are all feeling and doing well.

If you have had thyroid cancer, it will be *very* difficult to convince an endo who treats thyroid cancer to give you Armour Thyroid (natural thyroid medication). People being treated for hypothyroidism often have doctors who will allow them to play around with it. Since thyroid cancer and your TSH needs to be so tightly controlled, most endos are totally against using Armour.

Simplified, it is made from bovine thyroid glands. It is done in a lab so I'm not trying to make it sound like some farmer is mixing it up in his barn.

Most endos believe that since it is make from the anatomy of a living organism, that the dosage cannot be titrated properly.

What it has going for it, is it contains T3 which Synthroid and similar meds do not. Most people do not need T3 as your body will convert it from T4. There is a small subset of the population who does not convert T4 to T3 and it will be very evident when you have your thyroid panels done. If you T3 is in the normal range then you are converting.

I have referenced Dr. Ain's listserv before to mrsklamc and you may want to read up on this. He is 100% against the use of Armour for various reasons and if he has a patient who is a non-converter, he will prescribe Cytomel (synthetic T3) to supplement the T4.

I don't really have a feeling about it all but before you make a choice you should read both sides of the debate on this to see how you feel about Armour.

If offered to me, I would probably try it and see how I felt. However, some of the things about it (bovine in nature) kind of bother me.

 

[dischick4778]

I have been experiencing numbness ever since my surgery. It started in my hands, but it also happens in my legs, back, and even face. Usually it happens if I lean on my leg wrong or if I talk too much my face gets numb. The blood work shows my calcium levels are very low. The Dr. feels that I'm not absorbing it and that's why I get numb.

Thanks for the advice on natural thyroid. I really don't know much about it but am reading into it just to know everything I can.

 

[mrsklamc]

I am sorry to hear about your paras.

My endo, who became an endo after having thyroid cancer herself, also would not recommend the 'natural' thyroid.

 

[Christine]

I am sorry to hear about your paras.

My endo, who became an endo after having thyroid cancer herself, also would not recommend the 'natural' thyroid.

My last endo also had thyroid cancer. How convenient!! He was very much opposed to Armour. I haven't even discussed it with my new endo but I feel okay for the most part. At any rate, dischick, it's not something I would try until well after surgery and diagnosis. Gotta wait till everything else evens out, I think, before you start throwing in new thyroid meds.

 

[luvmarypoppins]

My psa of the day....if you are taking name brand synthroid make sure your endo writes daw on the script!! I had 2 scripts from her. One was older and I handed it in at the pharmacy and didnt notice it wasnt daw, so I also had the new one from last month. Thank heavens I noticed at her office she didnt write it. I had to wait for her to finish with the other patient and then she came to fix it. I guess she assumes that everyone wants generic etc.

I wrote an e mail to my friend about the conference. I didnt want to actually ask her to go etc. I just said, oh is your friend going etc? We will see what she says.

Dischick - sorry to hear about your paras too. Also wondering..how is your voice doing?? I also had to have my synthroid upped from the original post op dose. I started at 150 and now its 200. I am really hyper and emotional!! I know what you mean about the reality stuff. Sometimes I put it out of my mind until its another blood test, sono, endo or rad. onc. visit etc. Its almost 2 years and I have a hard time dealing with it. I am glad I have my faith to bring me alot of comfort. Hang in there!

 

[mrsklamc]

My brain is still having little 'glitches.' DH says it happened last time too but I don't remember.

I hope it's temporary.

 

[Christine]

My brain is still having little 'glitches.' DH says it happened last time too but I don't remember.

I hope it's temporary.

Yep, it is. Takes a while to get back!

 

[dischick4778]

My psa of the day....if you are taking name brand synthroid make sure your endo writes daw on the script!! I had 2 scripts from her. One was older and I handed it in at the pharmacy and didnt notice it wasnt daw, so I also had the new one from last month. Thank heavens I noticed at her office she didnt write it. I had to wait for her to finish with the other patient and then she came to fix it. I guess she assumes that everyone wants generic etc.

I wrote an e mail to my friend about the conference. I didnt want to actually ask her to go etc. I just said, oh is your friend going etc? We will see what she says.

Dischick - sorry to hear about your paras too. Also wondering..how is your voice doing?? I also had to have my synthroid upped from the original post op dose. I started at 150 and now its 200. I am really hyper and emotional!! I know what you mean about the reality stuff. Sometimes I put it out of my mind until its another blood test, sono, endo or rad. onc. visit etc. Its almost 2 years and I have a hard time dealing with it. I am glad I have my faith to bring me alot of comfort. Hang in there!

Thanks for asking! My voice is still not great. It is difficult because my job requires me to do a lot of presentations and now I cannot do them without a mic. I'm also noticing it's hard in social situations. We had a wedding last week and I literally said nothing the whole night. Anytime I tried to talk no one could hear me, so why bother. At restaurants it challenging too. And people who don't know what happened to me ask if I have a cold or soar throat. What do I say - no I had cancer? They really don't want to hear that.

I don't know if it has just been a busy week or what, but ever since my dosage was upped I feel more tired. It's only been one week, but I hope this feeling doesn't last.

Any luck with your friend going to the conference?

 

[luvmarypoppins]

Well my friend couldnt go to the conference , well she could but not the time that talk I wanted the info was on. Oh well and her friend was not going even though her dr. from md anderson was going to be there. Wow if I lived like over 5 hours from my dr. I would def. go like 45 min. to see him etc. But I got a little introduction to her. She said her cancer is not "cureable".

Just wondring if your surgeon or oncologist has stressed "cureable" versus "treatable". I get mixed messages. Surgeon says I am good for next 10 years. Oncologist, give her usual - its agressive so we will treat it agressively and endo says it was coming back in 3 years?

Also when do you all get regular blood work done, not thyroid? I just got it done like 2 weeks ago and they still havent called me. I guess I will give them a call. This goes along with my post about when is time to get a new dr. on the comm. board.