The THYROID Thread

[macraven]

angwill, will have you in my thoughts!
hope the next 6 weeks and the treatment will be bearable for you.
my brother just finished up a long round of radiation.
i hope it doesn't wear you out.

lmp, that is tough your christmas turned out the way it did.
start giving out checks to the sons instead of surprising them with gifts.
that is what i have started doing.
i hate shopping then having to do returns too.
money is never returned to me when i give it at christmas to my sons.

hope you get a kindle real soon.
maybe for valentines day?

christine, i'm still in the dark, i love books.
don't know if i could change over to the modern way now and go with the kindles.

singing mom, how was your vacation?
hope it went grand.

i don't know a lot of the posters on this thread but i do wish all that read here, the best 2015 has to bring!

 

[SingingMom]

Happy New Year All!

Christmas time was hectic but nice. Only problem was tree fell down two days after Christmas! Looks like the trunk got waterlogged and tipped over, bending the screw in the stand! Only three ornaments broke, and thankfully not the ones from our Adventures by Disney trips to London & Germany!!! It was sac seeing the tree on the curb so early, since we leave ours up at least until Epiphany ! Lol


We are all packed & ready to go first thing Tuesday morning! Hopefully the weather will cooperate - calling for snow showers. We have plans to meet up with some of our CM friends - so excited to spend some time with them! DH needs a vacation. Been very busy at work. Looking forward to the three of us having some Disney fun. Last winter break of college for DD. One more semester before graduation!


Ang - prayers for your treatments to go quickly and worry free. My friend found a nightly soak in the tub really helped during her radiation series for uterine cancer. She's healthy & doing great three years later.

 

[squeegee]

Had my lymph node FNA today.

The procedure went well , but I'm terrified that he didn't get the right node.

I do ultrasound myself (though not thyroid/lymph node), and had been obsessively scanning the nodes that the tech pointed out to me. The largest, most suspicious one was lateral to my jugular, about the middle of my neck. The punctures from this FNA are way further down, above my collar bone.

I tried showing him the node with the ultrasound, and he said that it was the one he got. I didn't press on to ask why the punctures are so far away. Am frustrated out of my mind.

Keep your fingers crossed for me.

 

[luvmarypoppins]

squeegee - I am glad to hear that your fna is done. I would be a little concerned. I dont know how they categorize everything but I know the lymph node levels are 1 to 4?

Maybe you can just call the office tomm. Is there a nurse or np etc. to talk to. Wondering if the node was at say Level 2, then why does it appear the biopsy was done on the node at level 4? etc.

My biopsies seemed to be all where the nodes were. One node was popping out so that was a no brainer one and I had to have a core biopsy of the thyroid tumor itself, can you say caulk gun going into your neck sideways? lol.

I lost my jugular vein due to the surgeons mistake and bleeding out and almost dying. So if I need another fna on that side I know it will only be high up near the ear area or very low down too by the collarbone. I dont think I have much left over there anyway. I had over 40 lymph nodes taken out there.

Wishing you the best and I hope you get the fna results back much faster than last time. Have your thyroid blood tests been within all the normal limits. My onc. and endo said they are more concerned with the blood tests because any deviation from 0 (has to be less than 1) makes them look for things etc.

Ang - This is for you. I know you can do this. 2 down already!! I am sure it is not easy with all you have to go through. Thinking of you and sending you my thoughts and prayers.

 

[squeegee]

squeegee - I am glad to hear that your fna is done. I would be a little concerned. I dont know how they categorize everything but I know the lymph node levels are 1 to 4? Maybe you can just call the office tomm. Is there a nurse or np etc. to talk to. Wondering if the node was at say Level 2, then why does it appear the biopsy was done on the node at level 4? etc. My biopsies seemed to be all where the nodes were. One node was popping out so that was a no brainer one and I had to have a core biopsy of the thyroid tumor itself, can you say caulk gun going into your neck sideways? lol. I lost my jugular vein due to the surgeons mistake and bleeding out and almost dying. So if I need another fna on that side I know it will only be high up near the ear area or very low down too by the collarbone. I dont think I have much left over there anyway. I had over 40 lymph nodes taken out there. Wishing you the best and I hope you get the fna results back much faster than last time. Have your thyroid blood tests been within all the normal limits. My onc. and endo said they are more concerned with the blood tests because any deviation from 0 (has to be less than 1) makes them look for things etc.

Bloodwork has always been at goal, there was never any suspicion there, so that's good. I was very surprised to find that there were any suspicious nodes at all, since the bloodwork had been good.

I'm going to go to work and take a look with my own machine today, see if maybe I can make things line up better. I'm going to see what the pathology says when he comes back, and might request a do-over if this one comes as benign, this time with his tech in the room to assist, instead of his MA.

The node I'm worried about just looks so ugly - over 2cm, microcalcifications, peripheral vascularity, cystic areas - most of the classic ultrasound characteristics of malignancy (though I know one can't diagnose by us). It looks so much like my original tumor. *sigh*

On with the waiting game.

 

[squeegee]

Got the results back - much quicker than I expected- but unfortunately positive for metastatic papillary thyroid cancer.

So, *ding, ding* round two!

At least we're past all of the major holidays this time. *sigh*

Keep your fingers crossed for me. Will post here off n on as I go.

 

[SingingMom]

Got the results back - much quicker than I expected- but unfortunately positive for metastatic papillary thyroid cancer. So, *ding, ding* round two! At least we're past all of the major holidays this time. *sigh* Keep your fingers crossed for me. Will post here off n on as I go.

So sorry for your results. Prayers that everything goes smoothly. Keep positive! ((Hugs))

 

[mommasita]

HI everyone...

It took me a while to post this, because I am honestly just so confused, and lack a lot of courage..I also tend to ramble.. Apology in advance

I quit smoking May 31, and promptly starting gaining weight, so I honestly just attributed it to that. .THen I noticed my hair .. This took a while to notice the loss, as I have enough for ten people. I had to start washing it in kitchen sink and take pictures with my cell phone for the Dr to say that ISN"T normal.. So my dr took a full bloodwork ,and all was ok.. I thought I was crazy, my hair loss was worse.. I am just exhausted.. By now I have gained 50 pounds. I am so short and small, this can't be ok.. I am eating more, but this can't all be the quitting smoking.. I don't gain like this, and I feel terrible, depressed, I cry ALL the time. I don't want to see a soul.

So before Xmas I do it again.. Now the call came by T4 and TSH was off by a lot.. He wanted me to wait 3 weeks and redo in case.. I did it , and he called today and said it was worse.. IN the meantime, I picked up a copy of the first report.. the range for tsh is 0.27-4.20. MINE is 6.26.. the t4 is 12-22 .. MINE is 12.. Also my Cholesterol is high, so naturally I google (shouldn't) and see Hashimoto's.. I see my Rhemy next week anyway, and just am being extra worried.. Should I be?

My GP is supposed to call me back tomorrow, and then I guess I will be asked to go in.. is my range bad? My MOther had Hashimoto's, then THyroid cancer.. RIght now I am dealing with a possible hysterectomy and other issues, so this kind of came at me out of nowhere.. I shouldn't say that, because I was shocked when my initial bloods came back ok, as I had signs of a lot with the hair and weight gain..

Thanks everyone.. I have experience in a ton of medical, I was young when my mother went though it, so quite honestly I can't remember it..

 

[macraven]

momma, don't worry, it will work out.
i have hasimoto also for the past 28 years.
it's a very common condition with the thyroid disease.
my numbers go up and down frequently.

once you are started on the correct meds, you will be on the right track for feeling better.
it won't be automatic but will over the first 2 months you are on meds for the condition.

if you have two testings within a 2 month period, and shows the same, your doc will probably start you on meds soon.

i switched from an interist to a endo doc due to my levels going all over the place.

you'll find others here that will be able to give you more info and can share their thoughts with you.

congrats on the quitting smoking.
that's a tought thing to go through.
did it myself 4 years back.

 

[Christine]

mommasita,

Your numbers are definitely indicative of hypothroidism; however, they numbers aren't "bad." Your TSH definitely shows it but it is a mild case. Your T4 is still in range, but at the low end of normal. The better test is the Free T4 versus the regular T4.

For Hashimoto's, you will need antibody tests done. It really won't matter, though, if you have it as it doesn't change the treatment or put you at any higher risk for things.

Your TSH is elevated, although not sure it's elevated enough to be the sole cause for the significant weight gain and hair loss. But everyone is different. I have had TSH levels MUCH higher than that and did not lose hair.

Do not underestimate the bodily effects of quitting smoking. It is a proven fact that one *benefit* of smoking is an increased metabolism. By stopping, you are slowing that down and many people do demonstrate a marginal increase in caloric uptake because they aren't smoking, but snacking. Couple that with your age, and you've got the perfect storm.

I urge you to work with an endocrinologist on your thyroid issues (of which you do have). MDs and other doctors just try to slap a band-aid on it and it can actually be kind of difficult getting you to a level where you feel great.

Please don't let the thyroid stuff scare you--it really will be okay.

 

[luvmarypoppins]

squeegee - so sorry about your results. I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you.

mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist.

singing mom - Are you still on our trip??

macraven - how wonderful that you gave up smoking!!

Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.

 

[SingingMom]

squeegee - so sorry about your results. I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you. mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist. singing mom - Are you still on our trip?? macraven - how wonderful that you gave up smoking!! Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.

Yes! In the middle of our trip. Weather has been terribly cold. I'm not complaining in the fact that it is BITTER cold back home, but I really wish I had packed a warner sweatshirt. We are layering, but I had a bad chill today due to the sun not being out like yesterday. Hoping that tomorrow starts the warm swing! We had a great time today visiting with our ABD guide from Germany! We were super lucky that her trip overlapped with ours. So wonderful to spend time with her & her friend today. Tomorrow my friend who lives here is picking us up to go to mass at the basilica, then we'll go to dinner. Dd & DH are going back to AK tomorrow, but I might stay at the resort to relax & soak in the hot tub if the weather cooperates! Lol. We have lots more planned for the next six days!

 

[mommasita]

Thank you ladies

My Doctor actually wasn't in today... We have had some horrendous weather.. Ice storm this week, snowwwwwwwwwww and some extreme cold, even for us...

I think the worst (aside from the weight, as I expected some, not 50) things are the hair loss and the mood swings.. I always was very evenly tempered, and it is almost like I have this PMS out of nowhere all the time. I hate it, I hate myself, and I have no control.... I apologize to my husband and kids, but It really isn't who I am, and I don't like myself, if that makes sense.

My husband decided to take it upon himself to book a holiday.. He says that we need a break.. This is our 20th year of marriage, and we are leaving next Sunday on a cruise... I have a week to get things prepared, and it is for 12 days.. I have never left both kids.. THey are nearly 16 and 19, so they will be ok.. It is more the grocery purchasing and so on.. I think the break will honestly do so much good, he is right.. This week I have an internal ultrasound (the real word will get blocked) and my Rheumy appt, and then he says I can take the 12 days off, and see the ENdo when I get back... With the -35 temps, I can't say I mind..

I will speak to my Doctor Monday and get in to see him before my Rheumy to get the copy of the second set of bloods for the comparison...

I thank you again.. It is deeply appreciated..

 

[macraven]

momma, sometimes a wonderful trip like Mr Momma plans for you will make a world of difference.

you'll be relax and just enjoy the sites and be together.


make your trip be as free as a bird.


deal with what could happen after you return from this lovely special get away together.

 

[squeegee]

Met my surgeon today, and got the results of the CT.

Good news is that there were no surprises on the CT. The only real findings there were the expected nodes in my neck, in the left. There was an incidental finding of some mild degenerative changes in my spine, but am not worried there.

Surgery, a modified radical left neck dissection, is scheduled for Monday the 26th. He expects 1-2 days in the hospital, and didn't specify how much time off work - that's something I forgot to ask about. I figure 2-3 weeks, but I see my endo to begin radiation on March 6th, so asked if I can just have the FMLA paperwork keep me "off" until then. Will see.

As for the radiation, the surgeon said there was some test they'll run on the removed tissue to see if it's iodine-avid. He gave me the name, but I can't remember it. Anyone heard of it?

If it's iodine-avid, I'll just go through the regular I131, but if it's not, that opens a whole 'bother can of worms. Will cross that bridge when I get to it, I suppose.

Spent most of the day getting the pre-op bloodwork, chest X-ray, and EKG out of the way. Am lucky to be based in a hospital for my work, so was able to get most of it done there this afternoon.

And now, all that's left is to wait for Monday the 26th.

 

[luvmarypoppins]

squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again.

One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first.

I dont know about that test but I am glad they have it. It will answer alot of questions for you.

Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study.

My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too.

You are a fighter and you can do this!! Prayers for you

 

[squeegee]

squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again. One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first. I dont know about that test but I am glad they have it. It will answer alot of questions for you. Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study. My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too. You are a fighter and you can do this!! Prayers for you

I had 150 of the rai last time, after withdrawal and lid. The original tumor was only in the left lobe and 4/5 lymph nodes.

I've heard if the alcohol ablation thing, but if surgery gets all the nodes physically out, am not sure what they'd inject?

Thank you for the encouragement and well-wishes. Will do my best to keep everyone updated as things go on.

 

[mrsklamc]

Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS!

I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.

 

[squeegee]

Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS! I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.

My little girl is almost four now and still doesn't leave me much time for posting. LOL.

With my little girl at home, I've requested a longer stay inpatient. She has been a "high needs" child from day 1, and I don't fancy the idea of going home with a drain in my neck - an "accident" while she's glommed onto me is almost guaranteed. Have already been trying to prepare her for the fact that she won't be able to climb all over me and hug for a little bit, that I won't be able to pick her up. She's going to have to be gentle with mommy, and sometimes sit next to me instead of on me. LOL.

I figure a month or so for the surgery recovery sounds about right, especially with regards to driving. I remember turning my neck with the TT was bad enough.

 

[luvmarypoppins]

squeegee - wishing you all the best on Mon. Sending you my prayers and good thoughts. Hoping everything goes smoothly and hopefully not too much pain.

Angie - thinking of you too and hope your rads are going as good as can be. You can do this! You have so much strength and courage. Hang in there!

Micayla - I am glad you stopped in. Come by more if you can, but with your little guy I am sure he is your top priority and keeping the mommy you very busy!

singing mom - we need a trip update

macraven - would love to hear about your trip too

Christine - saw yur comments on the guinea pig thread! We used to have a long haired litte guy. It was a chore to get my kids to clean the cage. But he loved talking to me and of course I always gave him lots of treats. As soon as we opened the refrig. door he would go crazy! Are you reading anything good? I am actually reading two books right now but I dont know if I will do that again. I want to keep them straight. One is an amish fiction christmas story and the other I won from goodreads - an arc of a historical fiction. Its good so far.

Next month I have my endo visit, so blood test in a few weeks not to mention the procrastinating bone scan I need to schedule.

And in other news, I am going to give this one a because ds3 got the nursing job he applied for. Its in the worst hospital around here, but he is still thrilled. He is going to be on med/surg telemetry unit. He is doing full time days 3 days a week 7am to 7pm. So he is happy with that. His one friend from nursing school might be on the same unit or at least the same floor so he is double happy. He said she is engaged and a nice girl. Hope they can work as a good team together.

Check in when you all can. Thinking of you all.