The THYROID Thread

[luvmarypoppins]

Hi Peeps who wants to hear a nice neck dissection story I know you all do so it will come momentarily lol

macraven - I hope you are off the bed rest now and able to move around a little and that the blood clot news is better. Let us know. Prayers for you

singing mom - I guess you are on your way to nice sunny Florida

Christine - glad your ds has a good internship, I am sure there is lots of news in your area today.

Well I survived this surgery. I just wish for once I could just be a normal surgery patient but that will never happen. I told you this surgeon just does not take any time with you. I guess the top NYC cancer surgeons are very much in demand so I guess I should understand.

Ds1 decided to come along so they had to find a room with 2 queen beds they finally did and it gave a good discount for the hospital patients which saved us a lot of money.

We got there in plenty of time leaving at 5 am for the 830 surgery. Got there like 645. They said I would wake up with a cpap machine, fine. Then the or is so small. I felt like it was clowns in the clown car. I counted 8 people and then they were calling another surgeon to put an arterial line in me. The surgery was suppose to take 3 hours and it took 4. They didnt know if I would even get a room and I finally did on the floor. I woke up and had a terrible pain in my R arm. No one seemed concerned about this. They were concerned about this road rash burn looking type thing on my L shoulder. sigh.

Finally got a room on the 13th floor. This is a mother and baby floor. My roomates mom was allowed to stay but dh was not, no males overnight. It was a strange floor. Ds2 saw a little boy leave with a last day of chemo shirt on and then you hear crying newborn babies.

Sat. morning the surgical resident came in and pulled the drain, ouch, ouch and more ouch and then took the neck staples out but on surgical glue and a new bandage. Finally the surgeon came in. He was operating as he had on surgical scrubs. He said he caused the burn/road rash thing on my shoulder because of the grounding. I think from the laryngeal nerve box monitoring. It looks terrible but does not hurt. Then I said look at my arm. He got so mad and I think he was yelling at the nurse out in the hall. It really was not her fault it was the ones before her who did nothing. He said I have thrombo phlebitis in my arm, so now I have antibiotics for 7 days, warm compresses 3 times a day and arm elevation sigh. My neck is sore and I feel week. I try to take the percocet when necessary. He also said it took longer because there was scar tissue and he had to untwist lots of veins and arteries that were in the wrong pace and we will talk about this in the office.

So my next apt. is monday and hopefully we will have the path report back by then. We are leaving at 5 am to avoid the worst traffic and will just hang out in the hosp. lobby until its time to go over to his office.

Oh the food there was really gourmet, Too bad I couldnt eat or swallow most of it, lol. My voice was bad but its getting better. Ds2 and his gf also came sat to see me. We had 5 visitors in the room at once lol.

Hope everyone is doing well.. Check in when you can.

 

[macraven]

Pray the surgery was a complete success!!

You will find out Monday
I can imagine the pain you are going through

Let us know how visit goes

Prayers still being said



About me, another blood clot

I see a new doc tomorrow

 

[Christine]

LMP, glad to hear it all went well and glad it's over with for you.

How did you get the thromboplebitis in the right arm? Is that from the IV line? That is so weird.

Hoping for good news on Monday!

 

[SingingMom]

LMP - God love you! You've been through SO MUCH! I hope this is the LAST one!! The thrombophlebitis angers me. That's something that should have been noticed when you first mentioned it. Grrrr.... I know medical staff is overworked (my mom & sister were both RN's in large hospitals) but that's just careless. I hope you feel better. Take it SLOW. Can you take something other than Percocet? I hate that stuff. Just made me wonky - didn't help the pain, so I stopped taking it. I like morphine. LOL

Enjoyed my visit with DD - did "mom stuff" like pick up her bridesmaid gown to bring home, etc. but the weather was icky. She worked a lot, so we had a few late dinners. I had some free time, so I cleaned her apartment (lol) met my cousin for lunch, went to noon mass on St. Anthony's day at the Basilica, and went shopping at the outlets. DH and I are returning mid-July for a mini-vacation with our friends. DD booked us at POFQ but they called & said they overbooked & would it be ok if they moved us to Boardwalk! Umm... YES! Never stayed there before. She'll stay with us, but I'm not sure of her work schedule yet. She's been working at least 52 hours a week. But, she loves her new spot in Fantasyland. Keep making that magic!

 

[luvmarypoppins]

macraven - how did the visit with the new doctor go. I hope he had some better insight to your issues and has come up with a good treatment plan that will help you to get to feeling like yourself again. Hang in there. You are in my prayers!

Well peeps gather round for another nice chapter in The Thyroid Cancer Story, hmm this chapter should be titled "Just because you go to a top hospital in NYC and see a top surgeon you will still shake you head and go hmmm! lol

Also I think these trips into NYC are wearing on dh,. I hope the next one in July will be the last one. We have to leave well before 5:30 am to avoid all the traffic and we just hang out there. Dh even came home and took a nap before going into work for a little while.

I am glad we were the first appt. at 9am. Only one other guy waiting. As usual he spends very little time with you. He took the bandage off and said my choking feeling and tightness is due to all the neck swelling which will subside over time. Went over scar care. I said I am not one of those vain type people. Hello dr. - look at my neck already, lol. Then we ask about the path report,. He said he took out 18 lymph nodes and 4 were cancerous. The biggest one was 3 cm. The path report said 3 mm, huh??? Head shake. He said the best part was that there was no extranodal extension and that is all they care about. Obviously when I asked him well what about the columnar cell variant. He said its just met pap. If you want me to have the path people look at the lining for the variant I can ask them to do that. Um shaking my head. Wouldnt they do that anyway at a top place. He said the aggressive variant does not matter. Um. I know this guy is on these top boards of stuff in the country but what DOES matter??? I think what does is the production line of people he had in the waiting room when we left 45 minutes later there were another 6 people waiting. OK His surgical skills are good but everything else, sigh, sigh, and more sigh.

Remember he said he would discuss why the surgery was longer and the tangled arteries and veins. I forgot to ask and dh says why didnt you ask after we left, sigh. The surgeon did not bring it up. Well next visit this will be asked by me for sure.

I made him look at my arm and he said its healing well and the anesthesia people caused that. um ok.

I wanted to shake his hand and say thank you but he seemed to pull back so I ddint pursue that. Strange indeed.

I guess I would go to him again if I really had to because anyone is better than dr. who almost killed me. I saw his reviews on line and people wrote run and stay away from that guy lol. Dont I know it for sure!!

My neck is itchy and sore and swollen and I only had one choky feeling lately where I did almost choke on something. So its a process.

Later dh said lets start planning that october trip to food and wine, what a hubby!

He did say there is a 5 to 10% chance that it will recur. I asked that. He didnt offer that info on his own. That will probably be me again with my history,

Happy First day of summer everyone!

 

[luvmarypoppins]

Greetings fellow thy people!!

macraven -how are you???

Well I am whiny My neck is sore and swollen. Its like a huge lump in a certain area. I touched it a little. It seems like it would be fluid that would drain into the jp drain if it was still in maybe???

Dh is concerned about it. Ds3 said - yes its swollen. I know dh doesnt want to drive into the city, so we did talk about sending a picture to the surgeon if necessary. I know it will take a while but I just dont like the look and feel of it. My next appt is not until July 24th. So I will see if I should do anything.

Ds3 also got a cold from a patient and ds2 has some of it plus allergies so I am telling them both not to get to close to me because I def. dont want that.

Oh and I forgot to type last time that we did ask the surgeon about follow up testing and how the endo feels about it - pet scan. He said if she really wants the pet scan, um I dont. He said it would maybe be 3 years of pet scans once a year and then a sono also once a year. I said I currently do a sono every six months, not her recommendation, she is for a yearly one too but I told him I feel better with 6 months. He also forgot that I told him before my tg goes not register and I am non avid rai now. gheesh. Cant he review the chart again??

he said it will actually take 6 months for any cancer to grow back (thy) so that is the first time you will actually pick it up and see it on any test. He said if I am happy with the every 6 month sono then that is o.k.

And what else did I do today why pay for another endo copay. This time she charged like $225 and that was just to talk surgeons and give me all the print out stuff to take. Didnt even check my neck, gheesh. Also got some nice toll bills for going into the city, Cancer is $$ lol! Dont we know it!!

Check in when you can.

 

[Christine]

Hello, LMP. Yes, you should get the swelling checked out. Probably localized swelling but who knows and you don't want to get into an emergency situation.

Nothing much going on here. I've been working on a replacement countertop project in my house and it's consuming. My husband painted our 23 year old cabinets so the existing (laminate) countertop looked awful. Moving to granite finally but wanted to keep it on the lower priced end, which has been difficult. In the middle of it all, I've decided to remove some lower cabinets that make up a "desk" in my kitchen. Totally useless. So I'm going to fill that area in with some new (cheap IKEA) cabinets painted to match mine and I'm really excited about those. But just more work!

My son is in week 4 of his internship. He likes the job--hates the commute. Just about 2 hours home each night. Traffic is awful around here. But it's not forever. At the end of July, he goes to Charlotte, NC with the company to some big conference. He has to give some presentation there and "work" the conference. So it's all good experience.

I'm looking forward to the July 4th holiday. Taking off the 3rd to give myself a 4-day weekend.

Hope everyone else is doing well and, macraven, I hope things are improving for you.

 

[macraven]

Hello friends!!!

Well I am 8 weeks and few days out from surgery and the clots finally have dissolved
Stopped Coumadin finally

Knee double the size as I have swelling issues
Ortho doc said it should be better at the time of six months out period

Did get established with family
practice doc as unable to get appt with any endo docs

Let's say it is out of the frying pan and into the fire

He told me I do not need t3 or t4 lab only tsh for prescribing me synthroid and he has given me a referral for a surgeon ent for the parathyroid gland issue

Really do not think I will use this doc as he hasn't limited experience with parathyroid glands

All he is aware of my test results show I need surgery

Thinking of checking Vanderbilt or Emory for this surgery

Had planned to redo flooring in the house for the upstairs rooms
But just looking online for supply costs and once I have that figure will seek out contractors on face book in my area

Figure one of our projects can be started on within the month

And now going to try to find someone to mow our yards
It has become to much for Mr Mac in the heat here
We have almost an acre of land and we only have the push mower
It is a weekly job

Usually late February is when we have to start mowing
Last November end of the month was last of the year for lawn care

But do enjoy warm weather most of the year

Christine, hope your remodeling goes smooth

LMP hope you can do the pics with the surgeon and do not have to make the extra drive to the city to have it looked at

Who all has trips coming up?

Mine is October but need to book a flight
Could not book until dvt issue dealt with
Now I see prices are high for my travel

 

[SingingMom]

Thinking of all of you and hope you are feeling better!!
Spent the long weekend in the backyard - had my family over Sunday for a pool party.
Got back the 900 photos from our Spain ABD - waiting for a rainy day to sort through them all!
We will be in WDW a week from Friday - meeting up with friends. DD got a great CM rate and they moved us to Boardwalk, so this should be fun! I truly don't mind staying at DD's apartment on my monthly visits, but this is more of a "vacation", with DH able to join me. Gives DD a change of scenery, too. She'll stay with us and go to work from the hotel.

 

[macraven]

Looking forwards of your pictures!

So nice for your next trip and you have a great hotel to call your home when there

Mr Mac and I ordered the flooring materials for the upstairs rooms

Now waiting for the contractor to connect with us

Hope all have a great 4th today !

 

[Hisgirl]

Just to share my experience....I had a nodule that came back inconclusive. The doctor decided to operate and remove that half of my thyroid. I was put on synthroid and had pretty severe reactions to it because come to find out, I didn't need it. My other half was producing plenty and the synthroid was throwing me into unhealthy levels (I felt like I was about to have a stroke!)
The actual biopsy was painful, to be honest. They had to go back in and I insisted on heavy meds. The surgery wasn't too bad, and I had zero pain afterwards. The surgeon didn't believe me and was shocked. This was over ten years ago, and I continue to be checked out by my endo. My numbers have stayed in the normal zone and I have not had to take synthroid. I get an ultrasound once a year to keep an eye on another nodule on the other side.

 

[luvmarypoppins]

hisgirl - welcome! That must have been scary about the synthroid and you must have a high pain tolerance level too! Glad they are being diligent and keeping an eye on your nodule.

singingmom - I am sure your pictures are beautiful and cant wait to see some of them too. I hope you have a great trip with your dd. We have stayed at the Boardwalk once. Not the DVC side but the Inn side. The rooms are really big. I didnt go in the pool as the clown creeped me out and we were too busy going to the parks. Cant wait for your Disney update too.

macraven - good for the home updates. We need alot and I am not doing them to the ds all move out. My top things now are a new stove and we do need the driveway looked at. Its showing alot of wear and tear.

christine - hope you had a nice long week end.

Well here is a riddle - what is red, white and blue?
Answer - me,. LMP. I am wearing a blue and white shirt and the red part??? Hmm, that is none other than my neck. Oh yeah, just another day in post neck dissection can anything else go wrong saga.

Dh came home monday for a quick lunch. He looks at my neck and says have you seen your neck. I said no. Honestly our mirror is up high in the bathroom. I go in the ds bathroom and look and omg my neck is so red o the surgical side. Dh takes a picture and we call the surgeon in NYC. I talk to the nurse pract. I also happened to have a picture dh took of me thurs. where I was none too happy in a rest. because he wanetd to have me look at my neck up close for some reason. It was fine then but glad we had that pict. Anyway she said she showed the pictures to the surgeon and he could see the bad difference in a few days and was very concerned about it. He said its not a hematoma, it is not a wound infection because that happens 3-5 days post op and he does not know what it is. They said maybe cellulitis? So he put me back on a 10 day course of cipro. sigh. He said if I am having trouble breathing or swallowing I need to go to the emergency room by me. So now we will see what happens and dh marked me and outlined my neck like they did with my arm in the hospital to see if it is spreading which it is not right now. Needless to say I am staying inside right now, My neck feels tight which they said is just the scar tissue, sigh. So its wait and see right now.

 

[Christine]

LMP,

Oh my goodness, you are really have a fun time with this. I hope it turns out okay. Does it hurt or feel funny when you touch it?

I had a pretty good weekend. It was 4 days off in a row for me so that was nice. Got a lot of stuff done. Went and picked out my granite and paid the deposit.

Back to work today. I tell you, it doesn't take but a few hours to stress me out!! I thought it would be a quiet day but it was one thing after another. At least the traffic was light.

@Hisgirl--that's great that you don't need to take Synthroid all your life. When I initially started on this journey, I too, was only supposed to half of my thyroid out. My surgeon did tell me that the remaining tissue would pick of the slack and do all the work, so I guess that's not too unusual.

singingmom--sounds like a nice trip coming up. I was trying to plan one over the weekend (to hit Disney/Universal/beach) on August 12th but I got overwhelmed and gave up!!

 

[SingingMom]

LMP - geesh - stay on top of that redness! Praying for you to feel some relief SOON!!

 

[TexasErin]

Okay, since y'all are well-versed with thyroid stuff, I thought I'd post my issues here. Sorry for the long background information, but I have read that untreated thyroid levels can cause a number of issues.

Up until beginning of May, I thought I was like one of the healthiest people on the planet. But then I got what appeared to be a stomach bug or maybe food poisoning, so I went to the doctor when I started pooping blood.... TMI, I know. The NP did a follow up to make sure I was all better. I was still having some stomach pains, so she sent me for a CT scan with contrast on May 16 to make sure that I did not have any intestinal blockage. The results came back negative for that, but my liver is inflamed three times the size it should be. So she sent me to a gastroenterologist who finally got me in June 22. The specialist sent me for more tests, and I had an echocardiogram on June 22; the specialist's office called back a couple of days later and said there was nothing concerning.

Then I had a liver ultrasound on June 27. It showed the liver inflammation is likely due to right-sided heart failure. I'm very scared. The cardiologist appointment was set for July 14, but they had a cancellation and moved it up to July 12. There is no history of heart failure or disease in my family. I am 45 years old and weighs 130 pounds. I don't drink or smoke. The gastroenterologist called me after this info about possible heart failure and mentioned that she still trusts the echocardiogram results...and that whatever I have has probably been there a long time. Cardiologist appointment coming up.

However my dad had to have part of his thyroid removed and my younger sister has to go every couple of years to have her thyroid checked because it is enlarged and she has some places that they are watching. One of the blood tests that they did only show that my Thyroid Peroxidase AB was 121; the normal range is under 9. So my PCP did a thyroid panel and levels were in "normal" range. My PCP said that thyroid levels can go up and down. She ordered a thyroid ultrasound and it was slightly enlarged. My PCP has started the referral process to an endocrinologist, but they have not called yet.

During all of this, we went to Disneyland. I had some days there where I felt kind of crummy- we even gave up FPs for Space Mountain since I just really wanted to go to bed. This is totally not like me at all, LOL! This was when I first started really noticing my neck feeling swollen, although I had wondered about it in the shower a couple of times several months ago. I've had various other symptoms that have made me wonder whether I have Hashimoto's or lupus. I sure never saw the heart thing coming!

Could heart issues and joint pain be from thyroid stuff?

 

[luvmarypoppins]

TexasErin - welcome, wow you have a lot on your plate for sure. I used to live in Texas for years. Still miss it. I dont really know the answers to your questions. My family also had heart issues and my sister died from a genetic syndrome which I dont have. I know with Hashi's your levels will fluctuate. I know Christine here is much more well versed on all of these things then the rest of us. Its good you are going to an endo. I think they will be a good source of information for you too and order any other tests that could be needed. Hope you start to feel well soon.

singing mom - have a great trip. I am sure it willb e hot but then its pretty hot in the tri state area now too

Christine - your kitchen reno sounds great

macraven - your floor reno sounds greast oo. Did you choose a dark or light color.

We will probably got alot of this place again before we sell it after the ds move out. Or at least do it slowly at some point lol.

Well guess who called me yest, well actually 7 pm at night. I didnt answer because my old hone didnt ring as usual. It was the POA from the surgeons office in NYC. She said the surgeon and then I heasrd he catch herself before speaking the message and I know she wanted to say is concerned but she said he would like to see pictures of your scar and can you send them to him. I told dh I know exactly wh they called because today actually only 1 more doe of the cipro left, So last night we e mailed him 2 picturs. I am not concerned if he does nt call me back. I figure it he will beconcerned then he will call and leave a message. Also it willb e good to see over the week end if I get worse again without the antibiotic.

In toher news, hmm how much does a lymp node removaol cost and 1 daya t the NYC hosp. Well apparently they billed my ins. company $89,000!! Wowsa. Of course they are not getting that from them. So far I have only had to pay $100 but they said like $5k of stuff is pending so we shall see. Thank God dh has good insurance.

 

[luvmarypoppins]

sorry for the typos, I always have so much trouble posting stuff here

 

[macraven]

LMP, I must have gotten off cheap
My TKR was $62,000

Finally got a referral to an endo
now I have to wait for an appointment

My family doc has been looking for the last 4 weeks to find one taking new patients
He sent a doctor request for setting me up with an appointment

I assume the wait for being called with the appt date will be weeks from now

For the orthopedic surgery, first appt was January 12, first opening for that surgery was April 27

Things go slow here .....


TexasErin
Once you are working with an endo, you'll find out what your issue stems from

I'm on synthroid for the past 30
years as I have hasimoto

My synthroid level changes frequently as my levels are always changing which is common with an autoimmune situation
I have blood draws every 12 weeks
No issue with my other organs due to hasimoto but I also have as my main medical issue as being hyperparathyroidism


Hope you are seen by the specialist soon and learn more !

Hopefully others will be able to add their knowledge and experiences as it will help you

I started to seek out info on sites as I was desperate for help and answers
Anything that another person experienced I was interested in so I could learn more than just what was on medical websites

Some of the symptoms I get might not be the same as others experience

 

[luvmarypoppins]

Hi fellow thyroidians, lol is that even a word

Well this is actually the first time I have been feeling like myself in a long while post surgery. I must have looked really bad before because people at church were saying oh you are looking good at church yest. Hmm, I guess I must have been looking pretty bad and they didnt want to say anything lol!!

Guess who sent us a nice e mail and said he liked the pictures of how my neck was looking, yup no other than Dr. P my surgeon. Hmm, I am impressed with this guys follow up for sure. He said see you on the 24th!

Well dh is kind of bursting my Oct. Food and Wine Bubble. He has to go to South Korea for a week for business sigh. That does not even include the travel time days. And then of course there is all the prep he has to do ahead of time. So there hopefully not goes our trip. I know he will try to accommodate me. I have a feeling this will not be going well sigh.

 

[Christine]

LMP--so glad things are on the upswing for you!! It's been a rough few months for you.

Not much going on here. Just working and then working on my kitchen on the weekends. Almost done. I'm still trying to figure out my vacation. It's actually cheaper for me to fly to Florida and do Universal or Disney then it is to rent a place at the beach (eastern shore) for the week. I would go to Florida but my son (22 y/o) is whining that he has no one to ride the big rides with him. It's true. So, no point going when he's going to have an attitude. I guess I'll end up doing nothing.