The THYROID Thread

[dischick4778]

Been a while since I've posted here but I hope everyone is doing well. Honestly, I have not been on the computer much, trying to live in the moment and enjoy all of my time with my husband and son. Things are going well with me, but no matter how much time passes since my surgery I still feel so fortunate to be here and to be well.

I still have trouble with my eyes. Dr. says there isn't much he can do for my fried tear ducts. I use drops a lot and he puts in the implants every so often. It doesn't help much.

I finally let my surgeon talk me into fixing my scar. He's a bit of a perfectionist and it bothered him that it wasn't smooth. He did an in office procedure to scrape it flat and since then I've visited twice and he has given me neck injections to reduce the redness. I was hesitant to do this because I kept thinking the cancer would come back and I'd need surgery again. But I finally felt safe enough to do it. And it does look better so I'm happy with it.

My endo says I do not need a scan this year. She did a neck sono back in February and it was clear. My numbers are good and she is happy. I'm currently down to 175 synthroid.

Anyway, hope all is well and I hope to log on more often and catch up with everyone. Stay healthy!

 

[luvmarypoppins]

Jenn - so good to see you. Glad to hear you are doing well despite the eye problems and I am so with you on those as you know from my posts.

Sounds like you were brave to go through that scar thing. I am wanting to be asleep for anything and evrything if it hurts etc. I am turning into a scaredy cat who has had it with pain I think.

I know your trip is soon to AKL and I hope you and your family have a great time.

Its good to hear you are not having a scan this year. Just wondering what your endo/onc. plan of action is, especially since you have the rare variant too.

My onc. said she might only consider a scan at the 5 year mark. Up until the first clean scan and then its only thyrogen and blood testing after that. I think I had that done at year 2 and now at year 3 post rai date, not surgery date. I get nothing this year, year 3, just the normal sono and blood work, Next year at year 4 I am getting thyrogen and blood work from the onc. in addition to the 6 month endo stuff.

Take care. Blessings to you always.

 

[dischick4778]

Good to hear from you luvmarypoppins!

I had a scan last July, which was one year after my surgery. This year my endo did the sono in Feb and said all was clear. I have seen her every two months for blood work since my surgery. So I guess that is how she monitors my situation. Through blood work levels and the sono. She said we would do a scan again at 5 years out unless there was cause to do it sooner (like something appearing in the sono or blood work). This is the first time she told me to take six months before coming back. That feels like a good thing.

We are excited for our upcoming trip to AKV. We are leaving on July 9th. I am so looking forward to it. I cannot wait to relax, have fun, and eat good food. I love vacation meals.

I am going to read your dining reviews now. And I am so jealous of your Nov. trip. I used to go to F&W all the time until the year I got pregnant. I haven't been back since then and I miss it. I was hoping to get back to it this year but we are looking to buy a house so I probably won't want to spend the extra money. Stay well!

 

[dischick4778]

LMP - read your dining reviews and loved them! You mentioned something about FL water not mixing well with the cancer meds. Can you tell me more about that? I didn't notice anything specific during my trip last year but am curious what the effects are for you.

 

[luvmarypoppins]

Well I scheduled my sono. Its going to be July 9th,

hmm Jenn, same day you are going to WDW. Where are you eating?? Of course I am disney obsessed with the food. I really think a lot of it has gone down in quality and up in price. I guess the only good thing would be if your take your little one to a character meal. Its air conditioned and then you dont have to wait out in the heat to meet those characters etc. We use to always go in August. I am sure the July heat is bad too. One word: Pool!!!

Does anyone else feel like this?? You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think. This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.

Still trying to work out something for the F and W. That is not going well. Cant get a decent room or flights etc. I will wait a while longer. Hoping for an ap discount or that we can use some of dh ff miles for a hotel room.

Hope everyone is doing well.

 

[mrsklamc]

I really think a lot of it has gone down in quality and up in price.

I agree. Food was never my 'thing' at Disney but I did have an Italian meal at Epcot years ago that was amazing. Honestly this latest ticket increase is getting kinda crazy too- kid's AP is the same as an adult's? Really? Makes me nervous that they are thinking of doing the same with regular tickets. Eventually they are going to price themselves out of the market, I think.

 

[Christine]

Does anyone else feel like this?? You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think. This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.

YES!! This is a huge deal for me. I put the cancer away and then the doctor's appointments roll around and it all becomes real again. I'm lucky that I am so far out from my diagnosis that I don't see a doctor much anymore but, at least once a year, I'm in a big turmoil. I *hate* it. My whole sense of well-being is gone.

As for the Disney food, that sucks. I've been getting a sense of that just reading the dining reviews. I'm hoping that since I stick to mainly signature dining that I won't notice it as much. I hope Citricos and Artist Point are as good as ever. I sensed most of the disappointment with the moderate-type restaurants.

I have found two places off-site, yet close to Disney that were pretty good. Both were in Celebration and it was so nice because they seemed "off the beaten path" and quiet. Once was a diner that had something for everyone, and the other was a small Italian restaurant with a wood-fired oven that had some excellent food. It was really nice to get away and have dinner there.

 

[SingingMom]

YES!! This is a huge deal for me. I put the cancer away and then the doctor's appointments roll around and it all becomes real again. I'm lucky that I am so far out from my diagnosis that I don't see a doctor much anymore but, at least once a year, I'm in a big turmoil. I *hate* it. My whole sense of well-being is gone.

As for the Disney food, that sucks. I've been getting a sense of that just reading the dining reviews. I'm hoping that since I stick to mainly signature dining that I won't notice it as much. I hope Citricos and Artist Point are as good as ever. I sensed most of the disappointment with the moderate-type restaurants.

I have found two places off-site, yet close to Disney that were pretty good. Both were in Celebration and it was so nice because they seemed "off the beaten path" and quiet. Once was a diner that had something for everyone, and the other was a small Italian restaurant with a wood-fired oven that had some excellent food. It was really nice to get away and have dinner there.

It's been Almost 20 years since my cancer diagnosis, and I still feel like that every year before my endocrine appointment. I think it is natural. I pray and try to stay calm, and then let out that huge sigh of relief! Hang in there!

 

[Christine]

It's been Almost 20 years since my cancer diagnosis, and I still feel like that every year before my endocrine appointment. I think it is natural. I pray and try to stay calm, and then let out that huge sigh of relief! Hang in there!

Oh wow, another "oldie"!! I am at 17 years out.

 

[SingingMom]

Oh wow, another "oldie"!! I am at 17 years out.

Define "oldie"

I was 30 when I was diagnosed. (after graves disease and hepatitis caused by an allergic reaction to PTU. Such fun!)

Had my surgery that Feburary, got pregnant with our only child that November and had our daughter a week before my 31 st birthday. She'll be 19 in August and will be 50 !

 

[Christine]

Define "oldie"

I was 30 when I was diagnosed. (after graves disease and hepatitis caused by an allergic reaction to PTU. Such fun!)

Had my surgery that Feburary, got pregnant with our only child that November and had our daughter a week before my 31 st birthday. She'll be 19 in August and will be 50 !

I was 31 years old. My second child was about 8 months old, I was in a good groove, feeling great, continuing to go to college even though I had a 3 year old, a baby, and a full-time job. That was the straw that broke the camel's back right there. Took me YEARS to feel right.

 

[SingingMom]

I was 31 years old. My second child was about 8 months old, I was in a good groove, feeling great, continuing to go to college even though I had a 3 year old, a baby, and a full-time job. That was the straw that broke the camel's back right there. Took me YEARS to feel right.

I hear ya, with that "took me years" ! People without thyroid trouble can't appreciate the havoc it wrecks! Thank the good Lord, I am doing much better, and have found an endocrinolgist who I am happy with. My original doctor was an ANGEL. When he left private practice for research, I hated the replacement, but foolishly stayed. This year I FINALLY changed and am much happier!

 

[luvmarypoppins]

Christine and Singing Mom - I am glad we all have both of you to look up too.

I hope I am around for many more years to come too.

Well today I made my first adr for our nov/dec trip. Le Cellier for lunch. Hmm, what is it about that chese soup and pretzel bread??

And my game plan for Tuesday...get up and start dialing around 7 am for the Candelight Proessional. I am going to try for Whoopi Golldberg, really not a fan, but our other choice was Neal Patrick Harris and we already saw him and there is one TBA, but I want to spend that night in MK for our last night etc.

Ds 20 found some old, really old rolls of films ad took them to get developed today.

They was one of disney, so cute, chef mickeys etc. Well he said, heah mom, look here is your picture with a thyroid, you can really tell the difference,You dont have a big gap in your neck.

OK, gotta love cancer and neck dissections

Micayla - do you have a big gap??

I am thinking because the lst surgeon either cut out so much because that is where the 2nd tumor that was 4 centimeters was or it was from the other surgeon who told my dh he had to go in there and start chopping me up to save my life and look for the bleeder. Oh well. In that picture you can really see the puffiness though. Of course my gp never thought it was all that much and we all know how things went from ther for quite a few years. Never did a blood test etc. Just a sono once in a while.

 

[mrsklamc]

I'm so sorry you had to go through that! No, I don't have a big gap. I have a white scar from about an inch under my left earlobe , to just under the left side of my chin. It changes there, and for the last few inches it appears to just be the 'crease' in my neck.

 

[luvmarypoppins]

Well if you look at the breast cance on the community board thread page 43, does your neck look like that. You can see the large gap to the collar bone etc.

 

[Christine]

Well if you look at the breast cance on the community board thread page 43, does your neck look like that. You can see the large gap to the collar bone etc.

I just found your picture. I actually passed it by at first because I was looking for someone with a horrible thyroid scar and couldn't find one! But I did look harder at it and I do see an indentation. If it is bad, then the picture is not showing it. Really, it doesn't look bad.

I also have, in my mind, a bad indentation. I see other people who have had thyroidectomies and they have a totally flat neck with just a hint of a scar. Mine indents in right in the center where the collar bone meets.

I went to an ENT once (who also is a plastic surgeon) for my sinuses and she was really interested in my scar. She told me that the reason that it didn't turn out well was because when they remove the thyroid cartiledge, the overlying skin as nothing to stop it from attaching to the trachea and that's what mine did. She said she could fix it easily but, at that point, I was not in the mood for any surgery. No, it did NOT make my day that someone pointed out that my scar was not done right.

Anyway, I am fairly self-conscious about it but my friends swear to me that they don't even notice it. As I age, I think it looks worse but really what am I gonna do about it. One day, if I get savvy enough, I'll post a picture.

 

[jepressley]

Hi Everyone,

I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly.

Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.

Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?

I really appreciate your time and feedback.

Thank you,
Jill

 

[SingingMom]

I'm so sorry you had to go through that! No, I don't have a big gap. I have a white scar from about an inch under my left earlobe , to just under the left side of my chin. It changes there, and for the last few inches it appears to just be the 'crease' in my neck.

I was extremely lucky with my scar. My surgeon was excellent - specialized in head and neck surgery. It is not noticeable unless you really get in my face. Lol. I used vitamin E (oil) and sunscreen. He was really amazing. Very confident and maybe a little arrogant, but treated his patients like gold. Only time he faltered a bit was when I told him my concern of losing my singing voice. He said he couldn't promise there wouldn't be a change, but he would be extremely careful of my vocal chords. Apparently he really meant that, because when the chief surgical resident who assisted him came to see me after surgery, he mentioned the surgeon said " I have to be extra careful - she's a singer."!

 

[mrsklamc]

No, I don't have a gap like that, but I agree with Christine, I don't notice it as looking 'off' in your picture. I, too, should get savvy enough to post a pic.

 

[mrsklamc]

I was extremely lucky with my scar. My surgeon was excellent - specialized in head and neck surgery. It is not noticeable unless you really get in my face. Lol. I used vitamin E (oil) and sunscreen. He was really amazing. Very confident and maybe a little arrogant, but treated his patients like gold. Only time he faltered a bit was when I told him my concern of losing my singing voice. He said he couldn't promise there wouldn't be a change, but he would be extremely careful of my vocal chords. Apparently he really meant that, because when the chief surgical resident who assisted him came to see me after surgery, he mentioned the surgeon said " I have to be extra careful - she's a singer."!

Singing for me actually got better (not a singer, just in church.) I hadn't realized how much it was compressing my airway. (I was 29 and they said I had probably had it for 20 years.)