The THYROID Thread

[WDWDancer]

Hi All - Hope you had a great Thanksgiving! I was able to go home and spend some time with my family it was so nice. I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.

My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!

HOW IS THAT POSSIBLE?!? The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays

Thanks all

[mrsklamc]

Are they transitioning you to cytomel at all?

Are you taking your synthroid an hour apart from any other food or pills w/ a full glass of water? Are you taking brand or generic?

[WDWDancer]

Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.

I take brand name synthroid (same pharmacy for past 2 yrs). I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening. I've been shaking my head trying to think what routine I might have changed....

[Christine]

Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.

I take brand name synthroid (same pharmacy for past 2 yrs). I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening. I've been shaking my head trying to think what routine I might have changed....

What dosage are you on?

It's also a shame that with your TSH being over 60, they can't just give you the RAI now.

[luvmarypoppins]

Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.

I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!

Micayla, wishing you all the best.

[luvmarypoppins]

Hi All - Hope you had a great Thanksgiving! I was able to go home and spend some time with my family it was so nice. I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.

My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!

HOW IS THAT POSSIBLE?!? The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays

Thanks all

Sorry to hear that you have to have the RAI, but after it is all done you will know that you did your best and all that you could to kick this in the butt. If you have any questions about the diet, just ask.

I always thought that the worst season to do the diet would be the winter, but if you get really creative, you can do alot of things. Just the fresh fruits might be a little more expensive etc. And if you find the fresh vegetables limited in what you like, I was allowed to have Birdseye Steamfresh ONLY,NOT the sauced varieties, just plain. Read the labels!!

Wishing you all the best. Hang in there!

[ge0rgette2]

I haven't been diagnosed with a thyroid issue, but feel I should be!

I have been tested before and thyroids levels come back 'normal'.
I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.

Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..

I'm going to read thru the thread tonite :)

Hope everyone feels well - enjoy your holidays!
Georgette

[dischick4778]

Visited my endo today, she is happy with my blood levels. Said she is planning for a neck sono in April. If that comes back clear she will not have me do a full scan next year. I'm not sure how I feel about that. Happy I would not have to go on the diet or nervous that something might be missed. She also said if my levels stay as is she will lower my dosage to 175. I know this all seems like good news, but I'm a rather be safe than sorry type.

Hope you're all enjoying the holiday season!

[Christine]

I haven't been diagnosed with a thyroid issue, but feel I should be!

I have been tested before and thyroids levels come back 'normal'.
I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.

Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..

I'm going to read thru the thread tonite :)

Hope everyone feels well - enjoy your holidays!
Georgette

I struggled with anemia a few years ago. Since I already had a known thyroid issue (I don't HAVE a thyroid), I was just sure that all my troubles came from that. I was tested and retested a zillion times (normal), changed medications/brands, it made no difference. I had horrible symptoms that I attributed to low thyroid even though the thyroid had been ruled out. Nope it was anemia and then after the anemia was corrected, low ferritin. I got way more worse symptoms from that than I ever got from being severely hypothyroid. Even though you are getting the IV infusions, that's really only a bandaid. I'm betting it is your chronic anemia problems.

[luvmarypoppins]

Visited my endo today, she is happy with my blood levels. Said she is planning for a neck sono in April. If that comes back clear she will not have me do a full scan next year. I'm not sure how I feel about that. Happy I would not have to go on the diet or nervous that something might be missed. She also said if my levels stay as is she will lower my dosage to 175. I know this all seems like good news, but I'm a rather be safe than sorry type.

Hope you're all enjoying the holiday season!

Jenn, glad your endo visit went well.

My rad. onc. and the endo both believe that if you have 2 clean scans then the blood testing and sonos are fine. My rad. onc. says she will only do another scan at the 5 year mark I think.

Also if you want to TTC again, you should really limit your radiation exposure anyway. With a scan you have the radiation exposure even though its a lower dose etc.

And Christine said this was true too, when I asked, the rad. onc. and endo both told me that the blood tests and sono together are just as good as a scan. The results of both would be about the same.

You will feel so much better when you go from 200 to 175. I definetly felt more normal and less high strung.

Also...is this a 6 month sono? My endo wanted to put me on the 6 months of blood testing and the one year of sono. I told her, no I still want the sono too at 6 months. I am with you on the better safe than sorry stuff and since you also have a rare variant like me, I think I would still ask for the 6 month sono too, because you have yourself covered both ways, blood and pictures etc.

[dischick4778]

Jenn, glad your endo visit went well.

My rad. onc. and the endo both believe that if you have 2 clean scans then the blood testing and sonos are fine. My rad. onc. says she will only do another scan at the 5 year mark I think.

Also if you want to TTC again, you should really limit your radiation exposure anyway. With a scan you have the radiation exposure even though its a lower dose etc.

And Christine said this was true too, when I asked, the rad. onc. and endo both told me that the blood tests and sono together are just as good as a scan. The results of both would be about the same.

You will feel so much better when you go from 200 to 175. I definetly felt more normal and less high strung.

Also...is this a 6 month sono? My endo wanted to put me on the 6 months of blood testing and the one year of sono. I told her, no I still want the sono too at 6 months. I am with you on the better safe than sorry stuff and since you also have a rare variant like me, I think I would still ask for the 6 month sono too, because you have yourself covered both ways, blood and pictures etc.

My first clean scan was this past July. I assumed because of how bad they told me the cancer was that I would at least have two scans. I am happy since we do want another child and the diet is terrible. But I also want to know that I'm ok and cancer free.

We have been doing blood every 2-3 months since my surgery in summer 2010. This will be the longest stretch of not seeing my endo, she told me to return late April for the sono. That will be the first sono since my scan this past July.

My anti bodies are still high, but the number drops every blood test. Currently they are in to 700s. She says as long as the number continues to decrease I should not worry.

[luvmarypoppins]

Well I spent a lot, too much time getting the phone run around and constant holding today.

I cancelled my bp check at the endo today because of the flu symptoms I still have plus no transportation.

Then I scheduled my neck sono for Jan. 9th, and then I will have to do the blood work and Jan. 16th I have the wonderful pelvic sono and next week I have the new specialist to address other pelvic issues I am having.

Then my reg. 6 month endo visit is Jan. 23.

I decided to go back to the regular imaging center instead of the hosp. since the girl I liked in the hosp. is on maternity leave. I guess I am back to Ms. Hurry Up and a Little Grumpy, Non Social sonographer, sigh.

Sorry, I am venting. I am just glad I went to Disney as I knew all this was coming up. Also if the next biopsy I am having for my other issues, not the thyroid stuff, comes back as cancer, which the one dr. said she doesnt think it is, but doesnt know yet, then I will most likely hear that news while my dh is in China again. Sigh. I guess it should be easier to hear the 2nd time around?? I am going to be doing alot of praying for sure.

[Christine]

luvmarypoppins--good luck with all of that and keep us posted. What other problems are you having (or are they personal)?

I had my endo appt. on Tuesday. Said it was time for the neck sonogram. I asked if he had a specific place he wanted me to go to and he said it didn't matter. Last time I had it done at the hospital. The tech was very nice but I HATE setting foot in the hospital. It's very psychological for me. So I'm just going to a radiology center and YAY they had Saturday appointments so it's January 7th for me.

Just waiting on the TSH and thyroglobulin results now.

[mrsklamc]

Waiting is awful.

LMP, how was your trip?

[kimmie]

lovemarypoppins--please feel free to vent any time! Please tell us how your trip was.

You all have listened to me :love:

I have been busy trying to get things straighted out. Not really liking my endo, but I went to my gp today and atleast felt like he was listening to me:woohoo: He is testing the T3 for me. THANK YOU! That's all I was asking for! I can't stand this big fat stomach and 8 lb weight gain in 5 weeks! I have been watching what I eat and exercising. The endo told me its because I am getting older...really? Also said that I am too impatient...maybe so, I almost had to laugh in her face! She did check my level of TSH it was 0.56, but she did not test the T3. I am taking .125 of Synthroid now, not generic. Now she tells me it will take time to build up ..blah blah blah..My doctor now put me on Lexapro for my anger issues!

So thanks for letting me vent:rotfl2:

[luvmarypoppins]

Well after I posted that the wonderful endo called me back. Gosh, this lady is great. Although sometimes I think she blows off my symptoms too. I told her about the stuff with the new bp med. She said its not related. Hmm, she said I could have some of those symptoms. I dont believe her and she is the one who told me last time, you are so sensitive etc. Anyway I am going on Tues. for the bp check. The side effects are slight digestive issues which I have at times etc.

Christine - I am having alot of symptoms. Probably tmi. I guess its a gyn. pelvic or bladder problem or something related to the mesh the other surgeon put in etc. I am going to tell this dr. I want the least amount of testing possible to get the most accurate diagnosis etc. And I will tell her if she needs to talk to my other drs./surgeon etc, then do it.

Micayla - the trip was good. I said a few comments a couple pages back. The last morning we had plumbing problems with the room so that was scary. Glad we were checking out. Met 3 disers, Teena (BC greeter),Ray Sharpton and Lisa, from the Breast Cancer thread. I did a dining report.

Loved the decorations. Liked the story tellers,joyful noise gospel singers, and of course the osborne lights and candelight processional with Michael W. Smith.

Ate Alot!! (Oh and Jenn - I would skip Rose and Crown). We did Chefs, GF Cafe, Hollywood Brown Derby, Kona, Captains Grille, Cape May,Liberty Tree Tavern, Tutto and Cosmic Rays.

I also think, (although I might be crazy) that we saw Justin Bieber at the BC way after midnight on Dec. 3rd. I dont know if he taped the parade that day or the day before.

We booked the BC again for May 17-23. Nothing like spending your b day and anniv. with Mickey and hanging out at Storm Along Bay.:)

[mrsklamc]

Oh yes, now that you mention it I do remember. I saw something last night that made me wonder if the aquarium got fixed, and I wondered if that had worked out for your trip.

[Christine]

.My doctor now put me on Lexapro for my anger issues!

So thanks for letting me vent:rotfl2:

Watch out for some weight gain on Lexapro. This one is notorious for causing that.

[luvmarypoppins]

Oh yes, now that you mention it I do remember. I saw something last night that made me wonder if the aquarium got fixed, and I wondered if that had worked out for your trip.

We skipped the whole living seas. I dont know, a whole week and we never got over there, just too much to do and my dh is like a def. non commando person. Like I am on vacation, if we get to a park by lunch fine, need to check my e mails etc. I guess I always deal with that aspect. But since he works his butt off and pays for the trip I dont say all that much.

[luvmarypoppins]

kimmie - so sorry you are dealing with all this stuff too. I am sorry you are having endo issues. I think that is the key, that you find one you like, you will deal with him/her for a really long time.

I dont go to anyone around here, I go to the univ. which is farther from my house, but worth it. Although in the metro area, less than 30 min is not far. (Jenn can relate).

Good your gp is on board and willing to do the testing. Mine is clueless. I wouldnt trust him with anything.

I am sure the weight gain is frustrating too. I honestly have never gained any weight. I acutaly lost over 60lbs, due to the cancer, coma and bowel obstruction. I think I have put about 30 plus back on.

Also sorry you are dealing with the anger issues. I was really high strung, but it was due to the high synthroid dose (200), now I am at 175 and its so much better for sure. Hope you can work all this out too.

Wishing you all the best.

[luvmarypoppins]

Christine - I know what you mean about the psych stuff. I try to put it out of my mind. But I know I am suppose to have that eye surgery in April, so its back "there" again.

I still dont know how to deal with all this long term. I guess we need your expert advice!!

But I am sure its never out of your mind either, even long term? But you are inspiring to all of us.

Wishing you all the best with your upcoming testing too!

[dischick4778]

So my endo called me this week, after receiving my blood results she wants to lower my synthroid now instead of waiting until April. She lowered it to 188. And also lowered my calcitriol. She says my calcium is too high now. I guess these are good changes. She also said "this lower dose will make you feel a lot better" - she must be referring to my anxiety and anger issues. Well, hopefully she is right, my husband will be thrilled.

Hope everyone is doing well with the holidays coming up and not stressing out too much. I'm off from work til January 3rd so that is helping a lot. Just enjoying the time with my son and getting ready for Christmas. :santa:

[kimmie]

Hi dischick! Glad to hear you are feeling better!

I have had anger issues too. I think I am feeling better now. I think my anger was when I was hypo. It has been in the last few days that I am beginning to feel more "normal". I am really glad to be on brand name synthroid. The generic was just not right for me.

Does anyone have any way to drop some weight? I have been trying but it just sits there!

My endo says it will come off, but I think it is here to stay;)

[Christine]

Hi dischick! Glad to hear you are feeling better!

I have had anger issues too. I think I am feeling better now. I think my anger was when I was hypo. It has been in the last few days that I am beginning to feel more "normal". I am really glad to be on brand name synthroid. The generic was just not right for me.

Does anyone have any way to drop some weight? I have been trying but it just sits there!

My endo says it will come off, but I think it is here to stay;)

kimmie,

Some of the weight will just fall off on its own when your thyroid hormones regulate enough and your TSH gets to normal. Whenever I was REALLY hypo, I would put on about 10 lbs and by the time I got down to a normal TSH it was just gone and I didn't have to do anything.

As far as regular weight issues, which at 47, I certainly struggle with but nothing terrible, the best thing for me was to start logging EVERYTHING I ate into SparkPeople. MyFitnessPal is supposed to be even better so I may try that next time I do this. Anyway, just log everything you eat into it and be honest. Over a 2-3 week period of time, see how many calories you are eating. You will probably be surprised. Most people eat way more than they think. I was hungry a lot but found I was eating about 2500 calories a day, sometimes more. Well, no wonder I was 15 lbs heavier than I wanted to be. It sure would have been easy to blame my "thyroid". Once I saw where I was going wrong, I started to tweak my eating. Not really dieting but cutting back. Then as I got used to that, I got way more strict. After a few weeks, I got my intake down to about 1700 calories per day. A "good" day was 1500 calories but I couldn't often acheive that (I don't do well without food). Around this time, I added in about 30 minutes on my treadmill. It took me weeks but I really ramped up the intensity without adding on much time. The weight began to roll off.

I started this in January, had maybe lost 2-3 lbs by February. By April I had lost about 15-18 lbs. That doesn't sound like much but I really didn't have a lot of weight to lose. I ended up at about 134 lbs at 5'8". I felt to thin so I started adding food back in. I feel best at around 143. Of course, I have gone passed that now so I will probably get myself under control in January again. Seems to be a good time for me.

[kimmie]

Thanks Christine!

I know I should start writing down everything I eat because I am "watching it" but probably consume more calories than I think.
I am ready to get back back in the gym too!

I was hoping that some of this weight would drop off soon.

Thanks for the insight!:goodvibes

[mrsklamc]

It's counter intuitive but some people (me included) gain when hypER...your body is constantly stimulated so it constantly stimulates you to eat.

[luvmarypoppins]

dischick - glad you got your synthroid lowered. My dh was so happy too. I freak out alot less now. Dh went grocery shopping for us when I was sick last week Of course he got so many of the things wrong. I didnt even do my usual flying off the handle at him. I just kind of laughed. We both did, I said, see I knew you wouldnt get it right! Glad you get some time off. Do you know anything about the LIU area in Brooklyn. My ds is thinking about the nursing program there. He would get alot of scholarships, but I dont know if that is a good/safe area etc??

kimmie - I hope you get your weight issues resolved. I really dont even think about my weight. It went down 60lbs. but that was post cancer and post coma and post bowel resection. Now I have gained 30 lbs. of that back. I have stayed about the same for a year. I wont say how much I weigh. Suffice to say its alot. The drs. have never said anything about it. Only the stomach surgeon. He just said to watch it.

Well I went to the endo today for the bp check. The nurse said it was good and she ran the number by the endo and she liked it too, so she told the nurse to have me keep taking the new med. I didnt even have to see her.

So now thurs. its the new specialist for some of my other issues. We will see what happens. I guess I would just like some dr. to figure out whats going on and give me some answers. I think she will wait and see too as I will tell her I am already scheduled for a biopsy and sonogram mid Jan.

[mrsklamc]

I think I may try this rice milk the next time I have to do the diet: http://moneysavingmom.com/2011/09/do-it-yourself-homemade-rice-milk.html

I will have to re read the thyca guidelines about rice though. I think they say to use basmati rice or something like that.

[Christine]

Finally got a call back from my endo today on my labs.

Tg = NEGATIVE. That always calls for a :banana::banana:.
TSH = 0.6. My endo said he wouldn't mind seeing it around 0.3. Now, I've been at that before on this dosage so not sure why it's a little "up" these days. Funny, I was sort of sure that he was going to tell me my TSH was very low. I've been feeling kind of panicky, shaky, and just off. I was hoping I was too hyper but NOPE, I think I'm suffering anxiety. I also have not been sleeping well since early November. I'm in one of these insomnia ruts and I think it's got to be perimenopause (I will be 48 next week). It's tough surviving on 5 hours of sleep and working full time.

My Basic Metabolic Panel came out good so I guess all my organs are humming along.

Just wish I felt better. I've got a terrible case of "golfer's elbow" that is really flared up. No, I won't go to the doctor either but I did something to it this past weekend and my hand on the affected arm was turning blue if I held it in certain positions too long. I guess the inflammation was affecting the circulation. Anyway, I iced for awhile and that scary symptoms seems to have disappeared.

I really HATE being a wreck over the holidays.

DD is home from college and just figured out she was 0.5 points off from meeting her target GPA so she may get suspended. Grrrrrr....

[kimmie]

Oh Christine I hope you start feeling better soon.
Can you take melatonin? I take some at night just to help me relax. It really does work. They have a slow release that is supposed to keep you relaxed all night. I was waking up almost every hour! It is better now.

Perimenopause can be a real pain but so is menopause! lol
Take a deep breath and try to enjoy your family.

[mrsklamc]

Christine I am so happy to hear about your results. Sometimes when I get in those ruts I take some benadryl to help me sleep.

[dischick4778]

dischick - glad you got your synthroid lowered. My dh was so happy too. I freak out alot less now. Dh went grocery shopping for us when I was sick last week Of course he got so many of the things wrong. I didnt even do my usual flying off the handle at him. I just kind of laughed. We both did, I said, see I knew you wouldnt get it right! Glad you get some time off. Do you know anything about the LIU area in Brooklyn. My ds is thinking about the nursing program there. He would get alot of scholarships, but I dont know if that is a good/safe area etc??

I actually told my husband that I hear the lower dose should make me a more reasonable and relaxed person. I told him I would not ask, but that if he notices change for the better to please let me know so that I can feel more normal. I am hoping that day comes soon. Although it's been challenging lately bc my son is on a waking up at 2am kick.

As for LIU Brooklyn - is your son going to stay at the campus? It's not the best area but if he's only there for classes during the day he will be fine. It's not a great area to live in and be in at night. But there are areas not too far that are good. Let me know if you have more specific questions.

Good luck tomorrow!

[Christine]

I am about ready to try the melatonin but I'm so sensitive to things that it scares me. I got hives from taking B-12 liquid because of an herb or dye that was in the product. There are only certain iron supplements I can take because I am allergic to a specific filler that some manufacturers use. It's ridiculous. So the melatonin makes me nervous.

I have used Benadryl with some success but once I start using it often it stops working. I also have some Xanax on hand but I don't want to become reliant on that again.

As for the melantonin, how long does the "relaxed" feeling last. My alarm goes off at 4:15 in the morning and I don't want to be groggy. That happened with the Ambien. I just don't have a full 8 hours to be in bed (unless I go to bed at like 7:30).

[kimmie]

Christine,
I get my melatonin from the grocery store, but if you go to GNC or an herbal/whole foods type place I bet that they would be more natural (less fillers and dyes).

It does not make you groggy in the morning at all. It just helps your brain to shut off at night so that you can fall asleep. Ever lay in bed and things are still playing out in your head? This stops that and lets you rest. I love it!

I have not used the slow release (they have them at GNC), but thought about it if I kept waking during the night.

Hope that helps!:)

[luvmarypoppins]

Micayla - yes, you are only suppose to use basmati rice. I read on thyca. that everyone raves about home made almond milk. I drink plain tea so I only miss themilk in cereal, which you cant have anyway, or at least the kind I eat.
Did you find the North Face jacket for your niece? My ds got one for a a gift once, just the fleece one, no hood.

Jenn - he would have to live there and since its nursing school he would have to do clinicals, so I am hoping this school will be on the bottom of his list. He hasnt applied yet but saw how much scholarship $ he could get which makes it really affordable.

Christine - So glad that you got great test results. Hope things work out for your dd. I am sure she will find her fit at the right college and the right major etc. I am glad all the ds have lived at home so far for college. I cringe thinking of dorm fees for 3 kids for 4 years. Only worrying about last ds if he goes away. I hope your dd can get a good plan going for herself. My youngest ds found the comm. college easier than the state univ. and my one ds went to a small local private college. He did well with the small class size and attention, but it was expensive. He didnt qualify for anything. I hope your sleep issues get resolved. Some how I never have a problem with it. I usually make sure dh gives me a back rub so that helps. I use to listen to the radio but cant tune in my favorite station anymore, goodbye Delilah. If you listen to her, you will fall asleep for sure.

Well I am back from the specialist. Found out the new bp med I am on has made me lose like 10 lbs. in the last few weeks. I think this is a side effect of the med. If you eat anything that is high fat, your body quickly gets rid of it. But I also dont feel as hungry. I will discuss this with the endo in Jan. So this dr. thinks everything is ok, but I need a kidney sono and a wonderful invasive procedure in March, Ugh. In March I already have the eye surgery visit prep etc. It never ends. My bp is good so the new med is working. Now this dr. wants me to try a different med for my condition. We shall see. My head spins.

[luvmarypoppins]

kimmie - hope things are going good for you too and that you can get back into the gym soon. One of my ds used to work in a gym. He told me, mom you wouldnt even be able to make it on the treadmill.

wdw dancer - bet you are shopping for all the lid diet stuff. Best of luck and if you have any questions, just ask away. Everyone has some great tips to share if you need them.

[Christine]

[QUOTE=luvmarypoppins;43521481My head spins.[/QUOTE]

No kidding!

I had my appt. with the gastroenterologist. I've been on Prilosec for years. I swear it messes with my intestines. I know, TMI!!! I told her I can no longer eat apples, pears, grapes, and nuts. I may try to wean off but it's hard. Anyway, NOW I have to add a DEXA scan to my list of appointments because long-term Prilosec use can cause osteoporosis. YAY. At least that's an easy test.

[luvmarypoppins]

Wishing everyone a Merry Christmas, and a Happy Holiday Season if you celebrate something else.:santa:

My ds20 is going to be Joseph tomm. night and sun. morning. He just has to stand there. I am just so happy to be alive to see him.

[dischick4778]

Merry Christmas and Happy Holidays to all. Healthy New Year to us all as well! Enjoy!!

[kimmie]

Merry Christmas and Happy New Year everyone!

[luvmarypoppins]

Just wishing everyone a Happy and Healthy New Year.

(Heah I am only having 1 operation so far in 2012, but I am still saying the healthy part:)

Oh and guess what I got it confirmed that dh and I saw Justin Bieber when we were there at the Beach Club Lobby on Dec. 3rd. Yeah, brush with fame! He was so short and tiny and I think Selena was with him. But his leather jacket was awesome and really expensive.

Well I am starting the New Year off right. Dh leaves for China next Friday. On the 9th ds21 is taking me for the neck sono, then I will throw in the blood test and the wonderful pelvic sono and also endo visit. Need to schedule the kidney sono. Oh what fun!!

[dischick4778]

Wishing a Happy & Healthy New Year to all!

Starting off on the right foot, we just booked AKV - Kidani Village for July. My son loved it this past summer and we are so excited to go again in 2012.

[karajeboo]

Thank you Lauren for directing me over here!!!

I'm having a partial thyroidectomy on Jan 25. I need advice!!!! I have a 2mm nodule that came back with "suspicious" cells in a needle biopsy. The kind of cells that if cancer will never show up in a needle biopsy. The pathologist said 15-32% chance that they are cancerous. So......

My entire right lobe will be removed. Dr said that IF the biopsy comes back as cancer, then they will remove the rest of the thyroid, then put me into a hypothyroid state (or hyper, don't really know the particulars at this point!), then do the radioactive iodine after 4-6 weeks......

Here's my concern (aside from the obvious health concerns!!!!) - I have a Disney cruise scheduled for March 30! So I'm praying for the best, but semi-planning for the worst news..... I mean, I'm sure we'd have to cancel the March 30th cruise, but then the DISmoms cruise is May 6.... that may be doable, but I just don't know.

How long does the surgery last for just partial thyroidectomy? I have my mother coming to stay with us for 5 days, just so the household can run normally. The dr has scheduled me for one night in the hospital, so if my mom is here then DH won't have to take time off work, other than the day of surgery and the day after to bring me home.....

I'm thinking the first couple days are uncomfortable, but a fairly quick recovery?

My other big concern... I've NEVER had any kind of surgery before!!!! :scared1:

OK, folks, time to ease this DISmama's fears!!! Let's hear it!

[mrsklamc]

If everything is clear, you will be fine in plenty of time for your cruise. You will probably be back to normal within a couple of weeks other than getting your thyroid hormone level adjusted.

I have never heard of "the kind of cancer cells that wouldn't show up in a biopsy even if they were cancer." Did they elaborate on this at all?

[karajeboo]

If everything is clear, you will be fine in plenty of time for your cruise. You will probably be back to normal within a couple of weeks other than getting your thyroid hormone level adjusted.

I have never heard of "the kind of cancer cells that wouldn't show up in a biopsy even if they were cancer." Did they elaborate on this at all?

Yes, there were 4 possible outcomes from the needle biopsy: 1) definite cancer cells, 2: definite NO cancer cells, then 3 and 4 are two different types of cells, follicular and papillary and I was told neither one would show up in a needle biopsy. They just come back as "suspicious" and will only show clearly in a full biopsy.

[luvmarypoppins]

welcome karajeboo

My experience was definetly not normal so I dont want to comment on all of it.

But I would say try to make things comfortable after surgery, maybe a button down shirt or something that does not interfere with the surgical site etc. Others have said one of those travel neck pillow things help.

If you are too anxious pre surgical ask your dr. for some anti anxiety meds etc.

Also if it ends up that it is cancer, and I am wishing you all the best and that it is not, I would definetly see about doing thyrogen versus going hypo, although some drs. have different ideas about it. My rad. onc. uses thyrogen only. There is a shortage but you can get it. I have read on thyca. org that there are 4 major suppliers. They tell you how to work with the system etc.

We can also help you with an of the lid questions you may have if you have to do the diet.

Just take it easy for a few days post op. Let everyone wait on you.

Surgical wise I would say, as I answered another poster on the cb, I am one of those people who want to hold the mask to go to sleep, They were fine with it.

My cancer did not show up in the needle biopsy too, but it was because they finally figured out I had a rare variant. They only figured it out a few days before and I had to have a core biopsy for that. That was not fun at all, but my dh took me out to outback for dinner after that one.

Have you checked out your surgeon. A good one has done about 100 thyroidectomies minimum. I definetly would not go to a general surgeon etc. I go to a teaching hosp. and my surgeon trained at UCLA and Columbia too. But even with that things happen etc.

Wishing you all the best and hoping your biopsy results are favorable.

[luvmarypoppins]

Neck sono for me on Monday.:)

Yippe I get to go back to Ms. Not So Friendly, all business, my name is G etc.

Um, she is the only one who does sonos at the place. guess she cant remember us, but then she should remember me.

I wish the sono girl at the hosp. was not on maternity leave, sigh.

I think I will do the blood test on Friday as I am thinking of going to see my aunt over MLK week end.

Pelvic sono on the 19th. Dont want to hear any bad news

Endo visit on the 23rd I think.

Oh and since my dh is gong to China today and taking 2 of the ds to New Zealand in March (that is free with ff miles, thank heavens). I asked him, do you think we could have a little Food and Wine Festival getaway (as we have never been). He said yes. Yippee!! I hope it will work out. I want t use the frequent flyer miles to book the Swan for free etc.

Christine - I have to read your thread on the cb about your ds. I know ds#1 figured out by soph year in college what he wanted to do, ds#2 is following in dh footsteps although he is less than thrilled about it and only has a 2.97 gpa and its not the same major as dh but an easier one. And ds#3 is just about there . He is a soph in college and wanted to do pt, but is a psych major, only did that to get into the state college and now he is applying to nursing schools. He actually had a part time job in the physical therapy office and thought it was boring. So maybe some job shadowing or volunteering etc.

Micayla - hope things are going well, you know what I mean:). Did you ever find that jacket for your niece? You are a great aunt. My sis was always like that with the ds. Gosh, I miss her.

Well have a good week end everyone.

[dischick4778]

Thank you Lauren for directing me over here!!!

I'm having a partial thyroidectomy on Jan 25. I need advice!!!! I have a 2mm nodule that came back with "suspicious" cells in a needle biopsy. The kind of cells that if cancer will never show up in a needle biopsy. The pathologist said 15-32% chance that they are cancerous. So......

My entire right lobe will be removed. Dr said that IF the biopsy comes back as cancer, then they will remove the rest of the thyroid, then put me into a hypothyroid state (or hyper, don't really know the particulars at this point!), then do the radioactive iodine after 4-6 weeks......

Here's my concern (aside from the obvious health concerns!!!!) - I have a Disney cruise scheduled for March 30! So I'm praying for the best, but semi-planning for the worst news..... I mean, I'm sure we'd have to cancel the March 30th cruise, but then the DISmoms cruise is May 6.... that may be doable, but I just don't know.

How long does the surgery last for just partial thyroidectomy? I have my mother coming to stay with us for 5 days, just so the household can run normally. The dr has scheduled me for one night in the hospital, so if my mom is here then DH won't have to take time off work, other than the day of surgery and the day after to bring me home.....

I'm thinking the first couple days are uncomfortable, but a fairly quick recovery?

My other big concern... I've NEVER had any kind of surgery before!!!! :scared1:

OK, folks, time to ease this DISmama's fears!!! Let's hear it!

Best of luck and wishing for you that it is not cancer. Worst case, if it is, you will be healed by May. The surgery timing all depends on what they find once they get started. They told my DH it would be 2-3 hours, but after they started and realized how many cancer tumors there were and how they were all wrapped around my vocal cords it ended up being a 6 hour surgery.

Recovery was tough but I was not given any meds to help, I was tired all the time. If you need radioactive iodine you might need a place to stay depending on the dose. My dose was pretty high and I had to be "quarantined" for a week. Not sure this would be an issue for you though.

I completely understand how you feel about your trips as well. I found out about my cancer about a month before we were set to go to Disney. I tried to convince the Dr to let me go and have the procedure when I returned. I was so desperate to enjoy myself and not have cancer surgery. In the end we canceled the trip. That part of it was honestly the worst for me. It's so emotional.

Best of luck again and please ask any questions you have here. There are so many knowledgeable and helpful people. :goodvibes

[Apopper74]

Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck. I was actually surprised by this observation because I have a skinny neck & it is not obvious. The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo. Nurse was not helpful with questions, the Dr really should have been the one to call. Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23. Anything in particular I should be prepared for at the appointment?

Really surprised by all this. While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising. What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs. A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars. I feel that both my weight gain & loss is explainable. Anyone else have similar experience? Should I be concerned? If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure? A little scared but also rationalizing this to not.

Thank you in advance.

[mrsklamc]

Wow I just realized I missed a bunch of posts somehow, sorry everyone!

LMP- I my sister ended up finding the right jacket, but I was the hero on finding a leappad for one of the almost 4 year old (leap day!) twins! No news on the other front yet but will keep you posted. WOW! New Zealand on FF miles! I know your DH goes to Asia a lot but wow. What a great perk. Also I figured our next DW trip would be 2015 or so but we are now looking at 2013- depends on our news on that other front, but so far, there isn't any news.

[mrsklamc]

Yes, there were 4 possible outcomes from the needle biopsy: 1) definite cancer cells, 2: definite NO cancer cells, then 3 and 4 are two different types of cells, follicular and papillary and I was told neither one would show up in a needle biopsy. They just come back as "suspicious" and will only show clearly in a full biopsy.

Now that you say that, I had both follicular and papillary, one they knew ahead of time and the other was in the post surgical biopsy.

I did not comment specifically on surgery or recovery time because mine was known to have spread to my neck and that increased both my surgery and recovery time greatly.

[mrsklamc]

Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck. I was actually surprised by this observation because I have a skinny neck & it is not obvious. The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo. Nurse was not helpful with questions, the Dr really should have been the one to call. Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23. Anything in particular I should be prepared for at the appointment?

Really surprised by all this. While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising. What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs. A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars. I feel that both my weight gain & loss is explainable. Anyone else have similar experience? Should I be concerned? If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure? A little scared but also rationalizing this to not.

Thank you in advance.

My thyroid hormones were totally normal even w/ the cancer so your weight loss/gain may be totally normal. Of course, lots of people have nodules without cancer so don't jump to that yet.Statistically, it is unlikely you have cancer.
I also had neck swelling observed during a visit for something else, and my neck swelling was also hard to see. Some medical professionals just have an eye for it.
One thing I've learned on this thread is that treatment experiences vary greatly, but my fine needle biopsy was at a diagnostic center. They just do medical imagining there, but yeah, it's an outpatient procedure.

[luvmarypoppins]

Apopper - welcome

Its good you are going for the blood test. That is also a good indication of what is going on.

I did lose alot of weight before my diagnosis.

Make sure the endo is someone you like, because they may want to keep an eye on you etc.

If you have to do a biopsy it depends. My endo does them herself. That is one of the reasons why I picked her. But I never have had her do one.

I always go to my ENT surgeon. I had 2 tumors one in the thyroid and one on the L side of my neck, so I got the double whammy biopsy and since they couldnt get enough cells they did it again. Oh what fun!!:)

The worst part would be if you get a dr. who thinks they dont have enough cells for the sample and then they "shake up" your neck as they call it. Not fun but does not last long thank heavens.

Its not as bad as it seems. They give you a lidocaine numbing shot first.

Glad they are on top of things and covering all their bases with you.

Wishing you all the best.

[mrsklamc]

I'd compare the biopsy to the dentist - doesn't hurt cause you are numbed up but just someone poking around is kinda annoying.

[karajeboo]

Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck. I was actually surprised by this observation because I have a skinny neck & it is not obvious. The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo. Nurse was not helpful with questions, the Dr really should have been the one to call. Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23. Anything in particular I should be prepared for at the appointment?

Really surprised by all this. While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising. What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs. A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars. I feel that both my weight gain & loss is explainable. Anyone else have similar experience? Should I be concerned? If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure? A little scared but also rationalizing this to not.

Thank you in advance.

Just had the needle biopsy done the week before Christmas so it's fresh in my mind. I was a basket case going into it.... Mine was done with ultrasound in the hospital. I had to wait 2 1/2 hrs because it was the week before Christmas and they were short staffed - I knew this going in but what a pain!

The procedure, from the time the dr walked in until I walked out was no more than 10-15 minutes. They numbed me first - then the teeny tiny needles they used for the biopsy (they did 4 sticks) were barely felt. Dr told me not to swallow, he stuck it in, wiggled it around, and pulled out - probably 10-15 seconds each time. A little pressure but no pain at all. They ran another ultrasound afterwards to make sure there was no bleeding, I got up and walked out. Some doctors will make you wait 30 minutes and then do another ultrasound to check for bleeding, but I was outta there!

This was Dec 23 so I had stuff to do this day and I was fine. A little tenderness and bruising but nothing that a little tylenol couldn't fix....

Good luck!

[Apopper74]

Karajeboo, MrsKlamc & LUVMaryPoppins,
Thanks for sharing your experiences & advice. This is was not on my list of things to do, but I guess it is now. At least I am a positve person so I am looking at everything in the positve so I haven't been dwelling too much but it is in my thoughts. All I want at this point is Disney in May.

Thank you again,
Adrienne

[luvmarypoppins]

Well I went for the sono today. It was a new tech and she asked me, why are they doing this again so soon? I told her I have a very aggressive variant, columnar cell. She said , o.k. I was going to tell her I asked the dr. and she said it was ok to do it twice a year etc.

They didnt do any more pictures, so I am hoping for the best.

I am going for the blood test on wed. I had to do it earlier.

There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.

[Christine]

Well I went for the sono today. It was a new tech and she asked me, why are they doing this again so soon? I told her I have a very aggressive variant, columnar cell. She said , o.k. I was going to tell her I asked the dr. and she said it was ok to do it twice a year etc.

They didnt do any more pictures, so I am hoping for the best.

I am going for the blood test on wed. I had to do it earlier.

There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.

Hope everything get better for you soon.

I had my neck ultrasound on Saturday. The endo hasn't called me with the results yet but the tech did tell me that she didn't see anything abnormal. So I'm feeling okay on that.

My DEXA scan results came back normal so that was good. Between the long term thyroid hormone use, the long term Prilosec use, and a family history of osteopenia I was a tad worried.

Next week it's the gyno and mammogram. YAY. I love getting older.

On that note, getting older does really stink but it's better than the alternative as they say. Everyday, something on me hurts. Be it my knee, my elbow, my neck, my back. Then there's some newly arising issues that I am SURE are due to starting perimenopause. Uuuuggggghhhhhhh....I want my young body back.;)

[kimmie]

I know exactly what you mean Christine! I am 52 and feel...very old. My knees are giving me a lot of trouble right now. Really hard to lose weight.

Wondering what it feels like to be hyper instead of hypo?
i am having some issues again and can't slow myself down! No heart palps though.
Thanks!

[mrsklamc]

There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.

You bet.

On that note, getting older does really stink but it's better than the alternative as they say. Everyday, something on me hurts. Be it my knee, my elbow, my neck, my back. Then there's some newly arising issues that I am SURE are due to starting perimenopause. Uuuuggggghhhhhhh....I want my young body back.;)

Yeah since I was 29 sometimes I wonder what's aging and what's radiation when it comes to my memory flaking out on me.


Wondering what it feels like to be hyper instead of hypo?
i am having some issues again and can't slow myself down! No heart palps though.

It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.

[kimmie]

It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.[/QUOTE]

Thanks. I do not want to call the endo again. She is trying but I am not sure we are on the same page:confused3

[mrsklamc]

It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.

Thanks. I do not want to call the endo again. She is trying but I am not sure we are on the same page:confused3[/QUOTE]

That is SO frustrating. My first endo was like that. My new one is such a gift, she became an endo because she had thyroid cancer at 23, so she knows exactly what it's like.

[kimmie]

That's what I find frustrating in the "thyroid world". The doctors do not know how much synthroid to give a patient so they "try" different doses until they happen upon the right dose. Why? In the mean time you are either crazy, sleepy, fat, angry....the list goes on. I am amazed at how much the do not know!

Sorry for another rant but I want to be who I was 4 months ago, and I know that is not possible.

[mrsklamc]

Rant away; We've all been there.

And, really, that happens even with my doctor who knows what's going on; it just takes time for your hormones to level out to new doses and if that's not right they have to try again, etc. Plus, I'll get leveled out and then thyrogen messes with my levels.

My GUESS is that not as much money goes to thyroid cancer research because it tends to be less lethal than other cancers; but that's just a guess.

[kimmie]

Rant away; We've all been there.

And, really, that happens even with my doctor who knows what's going on; it just takes time for your hormones to level out to new doses and if that's not right they have to try again, etc. Plus, I'll get leveled out and then thyrogen messes with my levels.

My GUESS is that not as much money goes to thyroid cancer research because it tends to be less lethal than other cancers; but that's just a guess.

Thanks! I think you are right. Its just a very important gland with hormones that you REALLY need. :sad2:

[luvmarypoppins]

Went for the blood test today. My endo appt. is on the 23rd. Now I have the wonderful pelvic sono on Thurs. Then maybe will have to schedule the kidney sono.

kimmie - I can relate too. Its frustrating when you dont feel well and they are trying to adjust the meds. I had 3 adjustments. I think I went from 150 to 200, and 200 was really making me crazy. Now I am at 175. I feel alot less crazy. My endo will not lower it anymore she said until I think I am at the 5 year mark since mine is aggressive etc. So I just have to put up with it. Hang in there. They will find the best level for you. Just keep telling the endo your symptoms etc.

Christine - good your bone scan came out well. I dont know if I have to do them anymore since I am getting the yearly reclast infusion. Hope your drs. visit and testing goes well.

Well with everything going on I dont even know if we will be able to take our May trip. If we do we might have to cancel the bounceback rate and maybe just pay for a rack rate room with frequent flier miles. I have to check out all the financial stuff.

[luvmarypoppins]

Well I just saw that the 2012 Thyca conference is going to be in Chicago.

Micayla is that really far away from you and maybe Kimmie that might be close to you to go to?

I have never been to Chicago but sometimes dh has gone there on business trips.

We need an Orlando thyca conference!!

[mrsklamc]

Chicago is not far - I will have to go look and see when it is.

[kimmie]

Well I just saw that the 2012 Thyca conference is going to be in Chicago.

Micayla is that really far away from you and maybe Kimmie that might be close to you to go to?

I have never been to Chicago but sometimes dh has gone there on business trips.

We need an Orlando thyca conference!!

Thanks for the reminder! I am about an hour out of Chicago! I will go and check the dates and stuff ;)
I am very interested in going...anyone want to join me?

Hey if they have one in Orlnado, sign me up for that one! It would be nice to get out of the cold for awhile. The snow is coming down like crazy today!

[luvmarypoppins]

Anyone see the little article about thyroid stuff that was in the newspaper magazine. Forgot the name, but it was about thyroid stuff, not necessarily cancer.

They did say that not all thyroid goiters are cancerous, yeah right, mine was though.

Oh well, any press is good press to me. I actually saw they expect the newly diagnosed to increase steadily this year (read that somewhere else). Hope they can say one day..more patients and so we need more research etc.

I have not been eating or sleeping well due to the personal family problem. Also between the hot flashes and the other night my heart seemed to be racing too long, usually that does not happen often. I am sure even the endo will think I am a mess next week, we shall see.

[dischick4778]

Sorry for another rant but I want to be who I was 4 months ago, and I know that is not possible.

I feel like I say this very same thing all the time! I used to be such a calm, level-headed, reasonable, sweet person. Now I feel like I'm in someone else's personality and I cannot get out!

The new lower dose, 188, is starting to take effect but it is a slow process. I have noticed a bit more patience with things that I would have screamed about a month ago. But I am still not "me". Hmm, how long until I get used to the new me?mm:confused3

Stay well all!

[karajeboo]

Wait a minute.... so the thyroid affects personality? I've noticed over the years that I've turned psycho, seriously. I fly off the handle over the least little thing, and my husband told me over the weekend that I'm not the most pleasant person to be around! That, and the racing heart..... In fact, my dr started checking my thyroid when I was complaining of a racing heart, and the stress test came back normal.... that's when the nodule was found. So it's possible that my moods could level out after this nodule is removed?????

[kimmie]

dischick - I was a happy person until all of this too! I am better now, but I now take Lexapro:sad2:
I am better now because things are starting to level off. Weight is still an issue with me.

karajeboo - I hope things are better for you once they remove the nodule. The thyroid is an amazing thing and DOES control hormones.
I am still very new to all of this but the others here can give you more insight.

[Christine]

I tried to post earlier but it got lost in space somehow.

If your nodule is affecting your thyroid hormones, then certainly your mood will be affected. If not, it is probably something else.

[dischick4778]

Wait a minute.... so the thyroid affects personality? I've noticed over the years that I've turned psycho, seriously. I fly off the handle over the least little thing, and my husband told me over the weekend that I'm not the most pleasant person to be around! That, and the racing heart..... In fact, my dr started checking my thyroid when I was complaining of a racing heart, and the stress test came back normal.... that's when the nodule was found. So it's possible that my moods could level out after this nodule is removed?????

Thyroid definitely impacts your personality. And depending on your synthroid dose after surgery that is a huge thing too. I was on such a high dose bc of the extent of my cancer situation that I was nervous and anxious and angry all the time - which is very unlike me. Now I am at a lower dose and finally feeling a bit normal, but man it has been a rough couple of years.

And I do feel badly for my husband bc I am not the person he married. And I know for better or worse, but no one expects the worse to come so soon. He is a saint for dealing with me through all of this. And I just want to be me again. :sad1:

[karajeboo]

Thyroid definitely impacts your personality. And depending on your synthroid dose after surgery that is a huge thing too. I was on such a high dose bc of the extent of my cancer situation that I was nervous and anxious and angry all the time - which is very unlike me. Now I am at a lower dose and finally feeling a bit normal, but man it has been a rough couple of years.

And I do feel badly for my husband bc I am not the person he married. And I know for better or worse, but no one expects the worse to come so soon. He is a saint for dealing with me through all of this. And I just want to be me again. :sad1:

Thanks everyone for the great info! I have my preop visit on Thursday so I hope to get a lot more info then, but I'm curious, will I be on meds with them only removing part of my thyroid? I was under the impression that the thyroid can "catch up" if part of it remains?

I am so sorry to hear of everyone's situations, but this is such a positive thread and I thank you all for posting your stories! It really makes me (and I'm sure many others!) feel better and have a much more positive outlook!

[Christine]

Thanks everyone for the great info! I have my preop visit on Thursday so I hope to get a lot more info then, but I'm curious, will I be on meds with them only removing part of my thyroid? I was under the impression that the thyroid can "catch up" if part of it remains?

I am so sorry to hear of everyone's situations, but this is such a positive thread and I thank you all for posting your stories! It really makes me (and I'm sure many others!) feel better and have a much more positive outlook!

Yes, half or part of your thyroid can do the work of a whole thyroid gland. They will probably want to monitor you very carefully after having part of it out to make sure that it's picking up the slack.

[lovemygoofy]

Hi everyone! I haven't been around in a long time. My life is so screwy I should have my own reality show.

I have a question for thyroid people in the know please. Can thyroid medicine just stop working or maybe having the opposite effect. I'm now up to 50mcg and I feel crazy again. My heart races, bad hot flashes, face flushes, my hair is falling out enough to make a curly haired wig, my sex drive is back down, and now my blood pressure is on the rise.

I googled synthroid and high blood pressure and got some interesting responses but wanted information from someone in the know.

I have made an apt with my PCM because the reproductive endo and I have parted ways. I'm moving in less than 8 weeks and know that can cause stress but I just feel like something is wrong.

Any help would be most appreciated. Thanks for letting me jump back in for guidance.

[mrsklamc]

Tina- Yes, it definitely sounds like your levels need to be adjusted.

Just curious- has anyone noticed a seasonal affect on your levels? Mine has been lowered the last two Januarys- I blamed the thyrogen but I'm feeling kinda hyper-ish and I haven't had it this year.

There was an article in the local paper Sunday that mentioned how thyca is the 'good' kind of cancer to get. Boy did that Dr get ripped in the comments with people letting him know just how 'good' it is.... :rotfl:

[Christine]

I have a question for thyroid people in the know please. Can thyroid medicine just stop working or maybe having the opposite effect. I'm now up to 50mcg and I feel crazy again. My heart races, bad hot flashes, face flushes, my hair is falling out enough to make a curly haired wig, my sex drive is back down, and now my blood pressure is on the rise.

Too much and too little thyroid hormone can often have overlapping/shared effects. Based on your heart racing, bad hot flashes, face flusing, and increased BP, I'm going to go with the thought that you have too much thyroid hormone.

Too little OR too much can cause hair loss, changes in sex drive. It's possible that being hypo could cause increased BP, but most often it goes the other way. With too little hormone you get bradycardia (slow heartbeat) which can often help BP levels. But having too little thyroid hormone also stresses the body so it could increase it.

If I were a betting woman, I'd go with too much hormone.

Tina--you're in the rotten position of still having your own (malfunctioning) thyroid gland that, on most days probably isn't working well enough for you but then periodically it might start working. When you are dealing with both a thyroid gland and supplementation, you get these problems. Many of us here have totally dead thyroid glands or none at all, so the supplementation process isn't quite the rollercoaster ride that people with funky thyroids get.

You probably need to get a quick thyroid panel done just to see where you are. Many, many years ago when I was first dealing with this, my biggest clue of too much thyroid hormone was my flushed face (and ears). It was awful. If the room even got the slightest bit warm, I had a face like a fire engine. Bumping down a dose helped immensely.


I have made an apt with my PCM because the reproductive endo and I have parted ways. I'm moving in less than 8 weeks and know that can cause stress but I just feel like something is wrong.

Sorry to hear you no longer have the reproductive endo--that sounded so promising.

Get thee to a doc and have that TSH done. You'll feel much better when you get this under control.

[luvmarypoppins]

Tina - I am so sorry you are going all through this again:hug:

As the others have said, def. go and get a new blood test for sure.

Sorry to hear that you and the repro. endo were not on the same page about things. Hopefully you can find a new one after you move. Have you checked out those that are associated with a teaching hospital.

I know even when my own endo didnt know what to do about my bp problems, she honestly admitted to me that she shared my case with another endo since its a teaching hosp. and its a large staff etc. The other dr. told her to add a different bp med to the one I already take.

So in your case also it might help if there is more than one dr. looking at you, maybe a team or dept. etc. Wishing you all the best.

Just wondering if you are taking the name brand synthroid or a generic?

Also when everyone says face flushing, just wondring if its full blown face flushing etc. I always had my reg. md say I had rosacea etc.

Well I went for the sono today. They found nothing wrong except for a small fibroid they said. I asked why I had all these problems etc. They said sometimes peoples bodys just go crazy, as in getting cramping and bleeding 3 years after the tt which threw me into medical menopause as they call it.

So PTL, so far so good and I didnt have to hear the word cancer again.

Mon. is my endo visit.

[luvmarypoppins]

There was an article in the local paper Sunday that mentioned how thyca is the 'good' kind of cancer to get. Boy did that Dr get ripped in the comments with people letting him know just how 'good' it is.... :rotfl:

Did you comment too Micayla? I know that is such a topic on thyca.org I too would like to give people a piece of my mind and actually can you believe the person at the rad. onc. when I made my first appt., said to me: "You know you arent as sick as some of the other people we have here". Yeah, gee thanks. So I guess my coma and almost dying post op didnt count right? Honestly this lady had a son in one of my ds grade school classes so I didnt say anything. If it was anyone else they would have gotten an earful from me.

People who say things like that really irritate me!!

[3prettyprincesses]

Hello ladies,

I am looking for a bit of advice and support. My thyroid has been plaguing my life for the last eight years. It all started after I had my last DD and I went severely hyperthyroid (post-partum thyroiditis). Well, then began the roller coaster of crap as I like to call it. My levels have swung back and forth till finally it settled on permanently hypothyroid. My meds used to be 139 mg of levoxyl and now I'm down to 112 because I was having hyper symptoms again this past summer.

The last few months I feel even more hyper. I can't sleep, my heart races, multiple bowel movements (including d.), I'm hot all the time and my periods are very light which is abnormal for me. Last time I had my TSH, FT3 and FT4 checked, I was borderline hyper but my doctor felt that if he lowered my dose, I'd swing hypo. I'm miserable, weepy and trying to hold myself together.

My question is this: Can some of you who still have thyroid glands and are taking levoxyl or synthroid describe your symptoms of hyper? My doctor seems really hesitant and is kind of disregarding my symptoms. I had bloodwork yesterday and am awaiting results. Thank you so much for your time and this thread.:goodvibes

[mrsklamc]

Did you comment too Micayla? I know that is such a topic on thyca.org I too would like to give people a piece of my mind and actually can you believe the person at the rad. onc. when I made my first appt., said to me: "You know you arent as sick as some of the other people we have here". Yeah, gee thanks. So I guess my coma and almost dying post op didnt count right? Honestly this lady had a son in one of my ds grade school classes so I didnt say anything. If it was anyone else they would have gotten an earful from me.

People who say things like that really irritate me!!

Actually since it had been thoroughly covered I commented on the fact that the article said you could have part of your thyroid removed if you had been diagnosed & that's no longer considered appropriate treatment.

[mrsklamc]

I can't sleep, my heart races, multiple bowel movements (including d.), I'm hot all the time and my periods are very light which is abnormal for me. Last time I had my TSH, FT3 and FT4 checked, I was borderline hyper but my doctor felt that if he lowered my dose, I'd swing hypo. I'm miserable, weepy and trying to hold myself together.

My question is this: Can some of you who still have thyroid glands and are taking levoxyl or synthroid describe your symptoms of hyper? My doctor

What you describe plus I'm always tired but can't sleep, and I have anger issues....

A start would be switching to synthroid rather than levoxyl. This is the one med where, yes, generics have to be within a very small window of active ingredients, but our bodies are sensitive enough to thyroid hormones that 'extremely close' isn't good enough.

[Christine]

What you describe plus I'm always tired but can't sleep, and I have anger issues....

A start would be switching to synthroid rather than levoxyl. This is the one med where, yes, generics have to be within a very small window of active ingredients, but our bodies are sensitive enough to thyroid hormones that 'extremely close' isn't good enough.

Just wanted to say, Levoxyl isn't a generic. It is often priced as low as a generic but it is not a generic. I've been using it for over 5 years now when I became sensitive to a filler in Synthroid (povidone). I TSH is *slightly* higher on the same dose of Levoxyl as it was on Synthroid. Instead of always being at 0.3, it hovers at 0.5 on the same dosage.

[mrsklamc]

Just wanted to say, Levoxyl isn't a generic. It is often priced as low as a generic but it is not a generic. I've been using it for over 5 years now when I became sensitive to a filler in Synthroid (povidone). I TSH is *slightly* higher on the same dose of Levoxyl as it was on Synthroid. Instead of always being at 0.3, it hovers at 0.5 on the same dosage.

I did not know that! I wonder if my endo would let me switch.

[kimmie]

Levothyroxine is the generic, not Levoxyl, right?
I cannot take levothyroxine. As mrsklamc stated, my body is just too sensitive to the generic dosage.

[luvmarypoppins]

Just curious, does anyone celebrate their cancerversary??

I got the idea from the breast cancer sistas.

Mine will be a week from tomm.:):)

The other year the one ds made me a cake to celebrate.

I usually say the day is the date I had my surgery to get these tumors out etc.

Some people say its when treatment is over etc.

I dont do anything special to celebrate etc. I just feel that me acknowledging it makes me deal with it better etc.

[Christine]

I did not know that! I wonder if my endo would let me switch.

Your endo should be happy with you on any of the brand names: Synthroid, Levoxyl, Levothroid, Tirosint, to name a few. All brand names, all proven effective, and they won't vary month to month.

I actually started out on Levothroid because they made a dose that Synthroid didn't. Levothroid was also $10 per month cheaper for me. Then Levothroid went up in price and, somehow I got on Synthroid. I don't know why. But I took that for years. Once I discovered I had a sensitivity to povidone and it was in my Synthroid, I looked for a thyroid med that didn't have it. That was Levoxyl. And it runs me $10 per month on my insurance or $20 for a 90-day supply.

[Christine]

Just curious, does anyone celebrate their cancerversary??

I got the idea from the breast cancer sistas.

Mine will be a week from tomm.:):)

The other year the one ds made me a cake to celebrate.

I usually say the day is the date I had my surgery to get these tumors out etc.

Some people say its when treatment is over etc.

I dont do anything special to celebrate etc. I just feel that me acknowledging it makes me deal with it better etc.

Not really. I'm not even sure what day I would choose. Usually when August passes I say to myself "another year goes by without a recurrence." August is the month I had surgery to remove it all.

[kimmie]

Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)

[Christine]

Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)

Well, it took me awhile to figure out it was povidone but here's the story:

I used to take ibuprofen all the time for menstrual cramps, aches and pains, etc. In fact, I'm sure I abused. Anyway, one day after I took it, about 20 minutes later, I gut an itchy hive on my chest. I didn't think much of it. Figured it might have come from playing with the dog. Then I started to notice that it happened EVERY time I took ibuprofen. So I figured I was allergic to iboprofen and I switched to extra-strength Tylenol. I was fine for a bit on Tylenol but even then I started to get the hive. It was always somewhere on my chest. Occasionally I would get one on my back right at the same level as the one on my chest. It was also only be one singulary, very itchy hive and would disappear in about two hours.

At this point I was getting suspicious but still didn't know what to do. On top of all that, my chest was kind of breaking out all the time and splotchy. I tend to be that way anyway so didn't make much of it.

Then my doctor prescribed Feosol, an iron supplement. I took this and I got a HUGE, and I mean HUGE, hive on my chest. I then realized that I could not be allergic to all of these things. So I made up a spreadsheet of everything thing I took and tried to find the commonality in the meds that caused the hive. The most glaring one was povidone. What threw me is that Synthroid and Sudafed also contain it, yet, I was not having big hives with either of them. After talking to my doctor, he said that it could be a "threshold" thing. Synthroid and Sudafed probably have tiny amounts. Feosol probably has a large amount, and ibuprofen and Extra Strength Tylenol have moderate amounts. But there's no way to tell. I stopped all the other meds with the exception of Synthroid and Sudafed (as needed). I was able to tolerate Children's Liquid Motrin and Regular Strength Tylenol as neither have povidone. I still had a slight, rashy look even after stopping things so I stopped the Synthroid and went to Levoxyl. I still get rashy occasionally, but not like I was. I will occasionally use Sudafed if I have a bad cold and I seem to be okay with it.

[kimmie]

Thanks Christine! Sorry you had to go through all of that.

I am having some trouble with facial ticks towards the end of the day sometimes. My right eye to be specific. I keep twitching it closed. If I make sure I am aware of it I can stop doing it! Really strange.

Anyone have this happen? Or muscle contractions? I find myself all tensed up sometimes.

[Christine]

Thanks Christine! Sorry you had to go through all of that.

I am having some trouble with facial ticks towards the end of the day sometimes. My right eye to be specific. I keep twitching it closed. If I make sure I am aware of it I can stop doing it! Really strange.

Anyone have this happen? Or muscle contractions? I find myself all tensed up sometimes.

Are your calcium levels okay? I think low serum calcium will cause this (damage to parathyroids more specifically).

[mrsklamc]

Your endo should be happy with you on any of the brand names: Synthroid, Levoxyl, Levothroid, Tirosint, to name a few. All brand names, all proven effective, and they won't vary month to month.

I actually started out on Levothroid because they made a dose that Synthroid didn't. Levothroid was also $10 per month cheaper for me. Then Levothroid went up in price and, somehow I got on Synthroid. I don't know why. But I took that for years. Once I discovered I had a sensitivity to povidone and it was in my Synthroid, I looked for a thyroid med that didn't have it. That was Levoxyl. And it runs me $10 per month on my insurance or $20 for a 90-day supply.

Good to know....we are still TTC though so for right now I will probably stay on the Synthroid just so I am minimizing TSH changes that are under my control.

[kimmie]

Are your calcium levels okay? I think low serum calcium will cause this (damage to parathyroids more specifically).

Yes my calcium levels were ok. When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.

I go back to the endo next month, so I will be sure to ask her.

last blood work on 12/14 was:

CA (calcium) 9.4 (8.4 - 10.6)
TSH .056 (.03 - 4.00)
Free T4 1.23 (.71 - 1.85)
Free T3 3.1 (2.4 - 4.2)

Do these seem ok? The doctor seems to think so.

[Christine]

Yes my calcium levels were ok. When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.

I go back to the endo next month, so I will be sure to ask her.

last blood work on 12/14 was:

CA (calcium) 9.4 (8.4 - 10.6)
TSH .056 (.03 - 4.00)
Free T4 1.23 (.71 - 1.85)
Free T3 3.1 (2.4 - 4.2)

Do these seem ok? The doctor seems to think so.

Yes, they seem really good. Is your lab range really .03 - 4.00? Mine runs 0.3-4.00. If your range is really 0.3-4.00 and your TSH is .056, then you could be dealing with a hyperthyroid issue which could explain the symptoms.

[kimmie]

Oh, you are right. It reads .3 - 4.0.
My TSH is .56.
Oops!

[luvmarypoppins]

Back from the endo.

I think I got some of the numbers wrong because it was just crazy busy there and I had a resident on top of that too.

The endo said my sono was great and my bp was great too 128/70, so the new med is really working well.

She said my labs were great too. She said my Tg was less than 0.2 so that is undetectable. (I hope I have that number right) and then she said that my tsh is .05. This is where I cant remember. It could have been .5. But she said that I am still too hyper and since all my testing has been coming out good, she has to balance out the high synthroid dose with the heart palpatations and worse the osteoporosis, since the high dose ruins your bones, which in my case it probably is doing due to the dexa scan and already getting one reclast infusion. She said she wants to get the tsh down to 0 too??

So she is lowering my synthroid to 150. I have to get a blood test in 6 weeks. She said dont throw out your old synthroid yet, because we might have to sub the higher dose a day or two a week etc. Its a balancing act she has to work n but she said she will work on it etc.

I did ask her if she had any other patients with columnar cell variant. and she said she had a few, but they only have really small, small tumors. She said, yours by far is the biggest one I have (12.5 plus the other 4 cm one.) I joked and said, well I guess its good to be remembered for something.:)

She commented - Oh I knew you were going to do really well?? Hmm, the rad onc. never even said anything like that to me, not once ever. Of course the surgeon never said anything all that much, especially since he almost killed me.

Dh said, she said, well its been almost 4 yeas. I honestly didnt hear her say that, but its really only almost 3 etc.

So we shall see how this all works out, but I am praising God for the good news. With everything else that is not going well with our family, I sure could use that good news, its like a ray of sunshine:)

Dh said, lets go out to dinner to celebrate.:banana:

[kimmie]

luvmarypoppins:thumbsup2:thumbsup2:thumbsup2

[Christine]

luvmarypoppins--that's great news!

[mrsklamc]

Has anyone ever taken cisplatin? Just read an article describing it as the leading treatment for a list of cancers including thyroid, & I've never heard of anyone taking it. From what I can google I'm guessing it my be a treatment for recurrence & if that's it then here's hoping we never do.

[luvmarypoppins]

I think one of the breast cancer girls did that chemo.

Is that chemo for anaplastic or medullary or for late stage pap or follicular? Just curious as to what the article said.

One of my surgeons told me that if mine was not responsive to the rai then they might try external beam on me. The rad. onc. never mentioned even that to me.

[luvmarypoppins]

Jenn - and if you are reading along, can you please comment on what the tear duct plug procedure entails.?

I know my eye surgeon didnt mention it, but due to all my personal family problems now, I dont know if I can go through all of that surgery right now, so I am thinking I might ask her about this option. I am suppose to call soon for an appt. as I think her maternity leave is over soon.

Specifically I am interested in the procedure, pain or more needles in the eyes? Do you notice them etc. etc.

Thanks so much.

[karajeboo]

Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

I have my followup on Wednesday and I get the biopsy results then. Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid? Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?

Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......

[kimmie]

karajeboo - Glad it went well!:yay:

[luvmarypoppins]

Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

I have my followup on Wednesday and I get the biopsy results then. Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid? Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?

Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......


So very happy to hear that everything went well for you. I cant believe the drain came out so easy too. My one in the hospital hurt a little, but the other one I had in for weeks. I had the dr. give me a shot of lidocaine before he took it out. Didnt hurt at all then.

Wishing you all the best with the results on wed. Keep us informed.

Glad you are feeling better, but I would take it easy for a little bit. Heah, let everyone wait on you for a while!

[mrsklamc]

Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

So happy it went well!


LMP- the article described that drug as "the leading treatment for" and listed several types of cancers, including thyroid.

[luvmarypoppins]

Good morning everyone.

I am here today because there is gong to be a virtual...party::rockband::dance3::cheer2::cheer2: party to celebrate...

my 3 year cancerversary!!!

Praise God that 3 years ago today I had 3 surgeries in 14 hours, 11 hours of surgery and was in the coma for 2 days after nearly dying and I am still here today!!

Thank you all for letting me vent, for Chrstine for your wealth of knowledge and for those who have gone through all of this and will go through this too, thanks for being inspiring and listening and encouraging etc.

You are all a great bunch of dis'ers.

Blessings to you all always

Now you can all have a virtual piece of :cake: to celebrate along with me.

[luvmarypoppins]

Well I started the first dose of the 150 synthroid today.

I know its going to take a while for my body to see any kind of adjustment. I am most interested to see if my heart palpatations will get less. I also feel like I am a bunch of nerves lately, but then I think that is directly related to all my familys personal problems right now.

[dischick4778]

Jenn - and if you are reading along, can you please comment on what the tear duct plug procedure entails.?

I know my eye surgeon didnt mention it, but due to all my personal family problems now, I dont know if I can go through all of that surgery right now, so I am thinking I might ask her about this option. I am suppose to call soon for an appt. as I think her maternity leave is over soon.

Specifically I am interested in the procedure, pain or more needles in the eyes? Do you notice them etc. etc.

Thanks so much.

So glad you are doing well and here's to many many more years cancer free!

What I have had done so far with the tear ducts was nothing major at all. In the eye doctor's office without any needles or anything he popped in a small temporary tear duct plug in each eye. It took seconds and I did not feel a thing. They are supposed to last 90 days then they dissolve and they can put in new ones.

The bad news is I don't think it's working. My eyes tear all the time and this cold weather is not helping. The skin around my eyes is so sore from all the wiping/dabbing I do. I'm actually thinking of calling eye dr to get his opinion on why it isn't working.

[luvmarypoppins]

So glad you are doing well and here's to many many more years cancer free!

What I have had done so far with the tear ducts was nothing major at all. In the eye doctor's office without any needles or anything he popped in a small temporary tear duct plug in each eye. It took seconds and I did not feel a thing. They are supposed to last 90 days then they dissolve and they can put in new ones.

The bad news is I don't think it's working. My eyes tear all the time and this cold weather is not helping. The skin around my eyes is so sore from all the wiping/dabbing I do. I'm actually thinking of calling eye dr to get his opinion on why it isn't working.

Just curious, do you also notice any blurriness at night while driving. I havent even attempted that yet because my eyes are constantly tearing and blurry. I can handle it and driving during the day but not at night.

Do you experience anything like that?

I hear you on the weather. As soon as I go out and hit the cold, the eye starts tearing and feels really tight with the skin etc. And then if its in a place with bad humidity, it starts up too.

I really want to do this and get it over with once and for all. I guess I will have to wait and see what other meetings etc. we will have to go to that are mandatory and required. I know my dh could go with our ds but I want to be there too etc.

[dischick4778]

Just curious, do you also notice any blurriness at night while driving. I havent even attempted that yet because my eyes are constantly tearing and blurry. I can handle it and driving during the day but not at night.

Do you experience anything like that?

I hear you on the weather. As soon as I go out and hit the cold, the eye starts tearing and feels really tight with the skin etc. And then if its in a place with bad humidity, it starts up too.

I really want to do this and get it over with once and for all. I guess I will have to wait and see what other meetings etc. we will have to go to that are mandatory and required. I know my dh could go with our ds but I want to be there too etc.

I do have blurriness pretty much all the time if I don't carry a tissue. I am constantly wiping away the tears to see clearly. It's very annoying and embarrassing in work meetings so I am going to have to call and see if there's anything else the dr can do. Dr. did say there are permanent tear duct plugs but he said something about not attempting that until menopause but I don't know why. I have to ask. Good luck!

[karajeboo]

Good morning everyone.

I am here today because there is gong to be a virtual...party::rockband::dance3::cheer2::cheer2: party to celebrate...

my 3 year cancerversary!!!

Praise God that 3 years ago today I had 3 surgeries in 14 hours, 11 hours of surgery and was in the coma for 2 days after nearly dying and I am still here today!!

Thank you all for letting me vent, for Chrstine for your wealth of knowledge and for those who have gone through all of this and will go through this too, thanks for being inspiring and listening and encouraging etc.

You are all a great bunch of dis'ers.

Blessings to you all always

Now you can all have a virtual piece of :cake: to celebrate along with me.

Congrats! Imagine a virtual glass of wine toasting you many more anniversarys to come!

Today I get my stitches out and get the biopsy results. To say I'm nervous is an understatement......

[luvmarypoppins]

karajeboo - wishing you all the best today!

Update us when you can.

[karajeboo]

karajeboo - wishing you all the best today!

Update us when you can.

Thank you ALL for your support and kind words. Dr walked in with big smile and said, "NO cancer, however...."

It seems that the pathologist tested the thyroid itself, when the nodule came back negative, and found a micro carcinoma (papillary) on there. It's gone now and Dr feels its best to let it go for now but follow up annually with ultrasounds, just to keep an eye on the left lobe and the cluster of very small nodules there.

He said that they've seen autopsies where people have these micro carcinomas that have probably been there 30-40 years..... so even had it not come out, we wouldn't have known about it and it would probably have been fine. But since it's out, and there is nothing to test on the other lobe, we are moving on now!

Also, no thyroid hormone? He told me to wait a couple months and follow up with my family dr for the blood work, and they can then send me to an endocrinologist if needed. Is this normal?

Remember, I had all this done by my ENT......

[luvmarypoppins]

:yay: so happy to hear your good news!

[Christine]

Thank you ALL for your support and kind words. Dr walked in with big smile and said, "NO cancer, however...."

It seems that the pathologist tested the thyroid itself, when the nodule came back negative, and found a micro carcinoma (papillary) on there. It's gone now and Dr feels its best to let it go for now but follow up annually with ultrasounds, just to keep an eye on the left lobe and the cluster of very small nodules there.

He said that they've seen autopsies where people have these micro carcinomas that have probably been there 30-40 years..... so even had it not come out, we wouldn't have known about it and it would probably have been fine. But since it's out, and there is nothing to test on the other lobe, we are moving on now!

Also, no thyroid hormone? He told me to wait a couple months and follow up with my family dr for the blood work, and they can then send me to an endocrinologist if needed. Is this normal?

Remember, I had all this done by my ENT......

Congratulations!! Yes, it is normal. Your remaining thyroid gland will put out enough thyroid hormone that you will be fine.

[luvmarypoppins]

I am having some "issues" with this new medication dose.

Anyone else have this? Mostly my biggest complaint would be that I am feeling constantly cold. Like before I had my thyroid out cold. Also I am feeling more sleepy and have taken a few small naps during the day.

I know my body is always sensitive to medications etc. the endo knows this well for sure.

Sp did anyone else notice a change from 175 to 150 like this?

The endo did say not to throw the 175 away, since she might have me take that dose maybe 2 days a week. she will decide after the 6 week blood test.

I dont know if I should call her and tell her my symptoms etc.

[Christine]

I am having some "issues" with this new medication dose.

Anyone else have this? Mostly my biggest complaint would be that I am feeling constantly cold. Like before I had my thyroid out cold. Also I am feeling more sleepy and have taken a few small naps during the day.

I know my body is always sensitive to medications etc. the endo knows this well for sure.

Sp did anyone else notice a change from 175 to 150 like this?

The endo did say not to throw the 175 away, since she might have me take that dose maybe 2 days a week. she will decide after the 6 week blood test.

I dont know if I should call her and tell her my symptoms etc.


Sorry for such a delay in posting. I tried two times this weekend and just got "hung up." In disgust, I just shut down and logged off.

So, based on when you started the new dose and you posted the above, it was only about 5 days. While I do think changes occur in that amount of time, you absolutely could not be hypothyroid to cause those symptoms.

More than likely, on the 175 dose, you are running "high" and you've gotten used to that version of normal--which is NOT normal. While I know most parts of the country are having a mild winter, it is February and it is normal to be feeling cold a lot. I am slight hyper and am not feeling cold much at all yet all the normal people around me seem to be cold. My carpool mate is constantly flipping my heated seats and I'm sweating.

I have upped my dose by only 1/2 tab a week. I was okay for about 4 weeks but the last 4 have been rough. I get warm really fast, I barely ever get cold and when I get warm, the palms of my hands are getting beet red. Not fun, but I am getting used to it.

My rambling point in all this is that I think you should tough it and try to get used to what your new normal might be. It's normal to feel kinda chilly and it *can* be normal to feel sleepy especially when you've taken yourself down a notch. I would tough it out and give it some time.

[luvmarypoppins]

Thanks for your insight Christine.

I am toughing it out but guess what..

I fell asleep during the superbowl yesterday watching the Giants!! and while I was sitting there with a blanket on me because I was cold etc.

Gee, somehow I am not liking this new normal for sure.

[Christine]

Thanks for your insight Christine.

I am toughing it out but guess what..

I fell asleep during the superbowl yesterday watching the Giants!! and while I was sitting there with a blanket on me because I was cold etc.

Gee, somehow I am not liking this new normal for sure.


It will probably level out a bit soon. Have you checked your heart rate lately. Is it considerably slower than normal?

[1Grumpy9]

I haven't posted much lately because I am kind of in flux right now. My endo left the office she was in and is going out on her own. The company she was with is merging with a local hospital and they have a endo that I had gone to before (and hated) and she wasn't going to deal with that again. I need to go get my labs done for an update on my latest change in meds. The bad thing is finding a lab to do my lab work. I also have to schedule an appointment when she has her office up and running.

[luvmarypoppins]

1Grumpy9- sorry you have to deal with all of this. I know it can be frustrating dealing with doctors, insurance, tests etc.

Will you be staying with your old endo or do you have to go to the group one?

Will your ins. pay to have you get the blood tests at a local hospital? I know mine really wont unless its something special, like the radiation testing, (pregnancy etc).I am blessed that I just have to go to the next town for my tests.

I hope it will all get straightened out. Try not to stress too much and I hope your new labs come out well for you.

[luvmarypoppins]

Yest ds20 and I were watching the show The Revolution. They had a gal on who had a rare and aggressive form of thyroid cancer. Of course right during the segment they interrupt it here to have us watch our Giants team coming home.

I think they are continuing it about her losing weight etc. I am glad thy ca is getting a little publicity. I also looked at her scar and it looked really good.

Also I know wdwdancer has been mia around here, but I did see her post on the thyca. boards yest. She had 150 mci of radiation and she said her endo made her stay on the lid for 3 weeks before the rai and then another 2 or 3 weeks after, Wowsa!! I cant remember, but it was a really long time for sure.

I am so glad my rad. onc. says 2 weeks before, really 15 days (I got a free day the one time for testing). And then just a day or 2 post rai.

[lovemygoofy]

Hi everyone! Sorry I haven't posted an update since I asked my questions last month. My life is nothing but choas right now.

Anyways I did see my doctor and got some bloodwork. Today she went over the results. I guess we are supposed to "brainstorm" in another appointment. Six months ago my thyroid was 9.xx and these results have it at 1.02 which to me seems like a big drop in a small amount of time.

I flat out told her I was not mean to be a chiuaha or jack rabbit. That I am simply unhappy. However I have to have surgery next week AND I'm moving in less than a month. No stress in my house, none at all.

I told the doctor I would see her for last follow up and get my paperwork for the move.

I'm not sure how or what I should drop my synthroid. I guess gradually go backwards or just stay at this dose until I get to my next post.

Thanks for listening and all your tips. I always appreciate them.

[Christine]

Hi everyone! Sorry I haven't posted an update since I asked my questions last month. My life is nothing but choas right now.

Anyways I did see my doctor and got some bloodwork. Today she went over the results. I guess we are supposed to "brainstorm" in another appointment. Six months ago my thyroid was 9.xx and these results have it at 1.02 which to me seems like a big drop in a small amount of time.

I flat out told her I was not mean to be a chiuaha or jack rabbit. That I am simply unhappy. However I have to have surgery next week AND I'm moving in less than a month. No stress in my house, none at all.

I told the doctor I would see her for last follow up and get my paperwork for the move.

I'm not sure how or what I should drop my synthroid. I guess gradually go backwards or just stay at this dose until I get to my next post.

Thanks for listening and all your tips. I always appreciate them.

How long were you on the dosage that got you from 9.xx to 1.02? When I was first muddling through all this, I was taking a dosage of .125 and I felt pretty good. However, I had my TSH tested and I was at 8.xx. I felt darn good but, obviously, my doctor was unhappy. I did ONE dosage adjustment up to .137 and within 8 weeks I was hyperthyroid and I had to tweak the .137 so I could get in the correct range.

So if it's only been 6-8 weeks since your last check, the TSH plummet isn't really too fast.

A TSH of 1.02, provided all the other numbers in the thyroid panel are within range, is a very good TSH to have. I used to hear that 2.0 was considered desirable for conception. That was before they lowered the normal range of thyroid levels so I'm not sure what is "optimal" now.

What I will say is that ANYTIME I've gone through an adjustment in meds, whether it be upping my dose to take more, or backing off, it is pretty rough, emotionally. Luvmarypoppins has just posted about her drop in dosage and, within 5 days, she wasn't feeling right at all.

Remember that thyroid hormones are VERY powerful and tweaking them affects every organ in your body. One of my doctors told me a long time ago that, even though my TSH may be "right" at some point, it often takes the organs in the body 6 months to "catch up" to that. Of course, I was fairly hypothyroid and damage is done (temporary) to the body when you are hyper or hypo. It takes the body awhile to repair. When he told me that, it didn't make a lot of sense at the time, but after going through the ups and downs for so many years, I get what he means now.

The rapid changes in your TSH probably account for much of your personality/mood changes. Give it some time to stabilize. Remember for many years you have probably been technically hypothyroid and that feeling became what seems normal to you. You will feel normal on your new dose (as long as it's in the normal range) one day. Couple all that with regular stress and it can be a rollercoaster ride. I upped my thyroid dose in December and about mid-January, I started feeling it. Pretty badly. I finally had to get into my endo this past Friday to get the blood work done. My face is turning red easily, my palms are beet red when I get warm. Then to top it off, after feeling high strung all week, my daughter's apartment at college was broken into and they all had their laptops stolen. I spent most of last weekend gathering the police data, dealing with insurance, trying to purchase her a laptop from 4 hours away. I sure didn't need that but it all feels worse when the thyroid is being messed with.

[lovemygoofy]

How long were you on the dosage that got you from 9.xx to 1.02? When I was first muddling through all this, I was taking a dosage of .125 and I felt pretty good. However, I had my TSH tested and I was at 8.xx. I felt darn good but, obviously, my doctor was unhappy. I did ONE dosage adjustment up to .137 and within 8 weeks I was hyperthyroid and I had to tweak the .137 so I could get in the correct range.

So if it's only been 6-8 weeks since your last check, the TSH plummet isn't really too fast.

A TSH of 1.02, provided all the other numbers in the thyroid panel are within range, is a very good TSH to have. I used to hear that 2.0 was considered desirable for conception. That was before they lowered the normal range of thyroid levels so I'm not sure what is "optimal" now.

What I will say is that ANYTIME I've gone through an adjustment in meds, whether it be upping my dose to take more, or backing off, it is pretty rough, emotionally. Luvmarypoppins has just posted about her drop in dosage and, within 5 days, she wasn't feeling right at all.

Remember that thyroid hormones are VERY powerful and tweaking them affects every organ in your body. One of my doctors told me a long time ago that, even though my TSH may be "right" at some point, it often takes the organs in the body 6 months to "catch up" to that. Of course, I was fairly hypothyroid and damage is done (temporary) to the body when you are hyper or hypo. It takes the body awhile to repair. When he told me that, it didn't make a lot of sense at the time, but after going through the ups and downs for so many years, I get what he means now.

The rapid changes in your TSH probably account for much of your personality/mood changes. Give it some time to stabilize. Remember for many years you have probably been technically hypothyroid and that feeling became what seems normal to you. You will feel normal on your new dose (as long as it's in the normal range) one day. Couple all that with regular stress and it can be a rollercoaster ride. I upped my thyroid dose in December and about mid-January, I started feeling it. Pretty badly. I finally had to get into my endo this past Friday to get the blood work done. My face is turning red easily, my palms are beet red when I get warm. Then to top it off, after feeling high strung all week, my daughter's apartment at college was broken into and they all had their laptops stolen. I spent most of last weekend gathering the police data, dealing with insurance, trying to purchase her a laptop from 4 hours away. I sure didn't need that but it all feels worse when the thyroid is being messed with.

Christine,

I am so sorry to hear about your daughter's apartment and your stress dealing with everything. I hope you are getting everything straightened out without too much headache.

As for me and the meds, I haven't been tested since early October. Then the TSH was 3.60 which the doctor said was okay for me. I've been taking 50mcg of synthroid since September and haven't been tweaked.

I guess it was starting in early November that I started to feel bad again and then by December I was really not feeling well.

This is a little TMI by I normally have the same "flow" every month for 5 days and this past month I barely was at 2 days. For someone that wants to be pregnant, I thought I was successful but now I'm thinking it's because my thyroid numbers are messed up again.

I don't know that I'm going to change the meds right now with all I have going on. I will only see this primary care doctor one more time before the move and right now I'm focused on the other surgery and don't want to risk more changes and will just wait until I get to TX and processed to the new clinic.

Thank you so much for the insight. I know that I have to wait for meds to adjust and you are right my old normal is not my new normal but I do think that there is a happy medium that isn't necessarily the perfect number especially if my thyroid functions some and then it doesn't.

[Christine]

Christine,

I am so sorry to hear about your daughter's apartment and your stress dealing with everything. I hope you are getting everything straightened out without too much headache.

As for me and the meds, I haven't been tested since early October. Then the TSH was 3.60 which the doctor said was okay for me. I've been taking 50mcg of synthroid since September and haven't been tweaked.

I guess it was starting in early November that I started to feel bad again and then by December I was really not feeling well.

This is a little TMI by I normally have the same "flow" every month for 5 days and this past month I barely was at 2 days. For someone that wants to be pregnant, I thought I was successful but now I'm thinking it's because my thyroid numbers are messed up again.

I don't know that I'm going to change the meds right now with all I have going on. I will only see this primary care doctor one more time before the move and right now I'm focused on the other surgery and don't want to risk more changes and will just wait until I get to TX and processed to the new clinic.

Thank you so much for the insight. I know that I have to wait for meds to adjust and you are right my old normal is not my new normal but I do think that there is a happy medium that isn't necessarily the perfect number especially if my thyroid functions some and then it doesn't.

Yes, I always forget how hard it must be to manage thyroid levels when you've still got your own gland in there doing it's job occasionally. A light menstrual flow is definitely a sign of hyperthyroidism. You definitely want to work on those levels since you are TTC. What I've also found is that the TSH and other numbers take awhile to catch up to what's going on in the body.

About three years ago, I started having a run a pretty significant heart palpitations. After I had them for about 2 weeks, the first thing we checked was my TSH. It was 0.50 which is pretty much where it has always been. So, we decided it wasn't my thyroid levels. I then spent the next two months visiting a cardiologist who could find nothing wrong with me except, yes, my heart was having benign palps all day long. I went back to my endo, who ran another thyroid panel. At that point, my TSH had dropped to 0.03, fairly close to zero, the lowest I've ever been. He then pulled me off my thyroid medication for 4 days straight and then had me start up again on a lesser dose. I felt better within days and have never had it happen again. So, it really was my thyroid yet the numbers were behind.

You could actually have a much lower TSH at this point, given your menstrual symptoms.

It's just so frustrating, isn't it? I hope you are able to find someone better to work with you in your new location.

I'm sorry that you spent all this time here and I didn't even get to meet you? Are you happy to be leaving? And how do you like this weather? When you first got here, it was Snowmageddon. This year, it's like living in South Carolina. Weird weather!

[luvmarypoppins]

Tina - so sorry you are going through all of this. I am sure its frustrating. I hope your surgery goes well and that your move to Texas goes well too. Are you going to Fort Hood? We lived in the Dallas area for 4 years. I really loved Texas.
I did not enjoy the fire ants, ice storms or tornadoes. The people there are so nice. I hope you get adjusted to your new home. I honestly wish I lived there again. I have a few friends from our old church there. One I e mail alot. Check out San Antonio when you can and Dallas too.

Christine - sorry you had to deal with all that stress about your dd on top of your not feeling all that well. I know my cousin got the lojack stuff on her kids laptops at college so they could get found if stolen too. I am sure its scary and frustrating for all of you at the same time. Hoping it all works out.

I am stressed beyond stress right now. I really dont handle stress and problems well at all for sure. At least now our big meeting that was suppose to be on Friday is postponed till March 30 so that will help a little I think. Now our brand new washer is broken. That is beyond stressing me out. I am having dh call tomm. I think I would go nuts talking to someone right now.

Hoping everyone else is doing o.k.

[1Grumpy9]

1Grumpy9- sorry you have to deal with all of this. I know it can be frustrating dealing with doctors, insurance, tests etc.

Will you be staying with your old endo or do you have to go to the group one?

Will your ins. pay to have you get the blood tests at a local hospital? I know mine really wont unless its something special, like the radiation testing, (pregnancy etc).I am blessed that I just have to go to the next town for my tests.

I hope it will all get straightened out. Try not to stress too much and I hope your new labs come out well for you.

I am actually going to stay with her...My family doctor is even going to be sending patients to her even though she is no longer affiliated with the same group. He really likes her and doesn't like the one that is going to be affiliated with them when the switch is done.

I am not sure about the bloodwork yet, but there is a place near the mall called Quest Labs that apparently does really good work. I am not a difficult patient when it comes to getting blood taken. I have a really good vein in the inside of my arm that never "hides" or rolls.

I haven't stressed too much about her moving...I have been more stressed with the pharmacy. I had a nice go round with them last month when I got my script filled (they didn't fill the entire thing and then said they did and told me that I had to let them know when I picked it up that there might be more than one). I have since moved my script to another pharmacy because I have had problems with the one pharmacist that is at that is at that pharmacy.

I should be scheduling an appointment with her here shortly (within the next couple of weeks). After I get my labs and I see her I will get an update to everyone.

[WDWDancer]

Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell! I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times. The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!

The RAI was anti-climatic - I got my pills and went home to bed :) I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.

I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc. I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold. This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy ;)

So for my ranting - I hope you are all feeling good - I am off to nap!

[Christine]

Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell! I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times. The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!

The RAI was anti-climatic - I got my pills and went home to bed :) I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.

I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc. I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold. This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy ;)

So for my ranting - I hope you are all feeling good - I am off to nap!

WOW, 188. The highest mine got was 148. The flu-like feeling is from the RAI. I remember that distinctly. Yes, the hypo is bad enough but that just pushed it over the age. The taste issues, salivary glands and flu-like stuff is from that.

I am also living in NoVA. I have a good endo (but never went through the hypo with him--my old endo retired). I really like him and his staff so if you need a recommendation, let me know.

Who is the Cleveland Clinic doctor?

[Christine]

After months of what I call "doctoring", it is finally over.

Starting in November, I had to go to the gastroenterologist, then the endo, then the resulting DEXA scan and neck ultrasound, then it was the GYN, which resulted in a mammogram. Then there was my GP because my hands were turning blue.....

Anyway, I finally got the last of my results today.

Last night, I got my mammogram results by letter (NORMAL--WHEW) and today my endo called me back to discuss the very small increase in thyroid meds.

At my last check, my TSH was at 0.5. My doctor wanted it lower so I increased my dosage by 1/2 tablet of .137 a week. About 4 weeks later, I started having minor heart palps and I got warm very easily. My hands were turning bright red whenever I got hot. Then the day before my blood draw, I went for a walk and as I was going up the hill, I got the strongest heart palps ever. I felt fine but it actually made the top of my chest feel like a weight was on it. Not fun.

So I had my re-test and just 1/2 tab extra per week drove my TSH down to 0.07. Based on my symptoms, my endo is moving me back to my usual dose and we will just be happy with a TSH of 0.5.

For the next few months I have NO appointments!!!:woohoo:

[luvmarypoppins]

wdwdancer - good to see you posting. Sorry you are having all those post rai issues. If your salivary glands are swollen, you could try a warm compress. I hope your check up goes well tomm. and that you find an endo that you like and can work with. I know Micayla had alot of the taste bud issues, so she might be able to chime in about that. I just felt generally crappy post rai but no specific issues. My salivary glands are permanently damaged from the rai. I just deal with it. Mostly lack of saliva issues.

Christine - I am glad you have no more appts. I hear you loud and clear. I am sure you are so happy. A good reason to celebrate. I always breathe a sigh of relief with my mammo too. I already had one non cancerous tumor out so they always see lots of scar tissue with me. Hope things have settled down with your dd too and things can get back to normal.

I have a month till the blood tests. I noticed I am still so tired. Fell asleep last night in the chair. So cold all the time and out of breath alot and can feel the heart palp when I was walking to a meeting yest. We shall see

[WDWDancer]

Christine - That is so exciting that you are "doctor free" for the next few months!!

I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.

I had my appointment yesterday with the endo - I wouldn't call it a productive appointment - I went for more bloodwork today so now just waiting for those results. You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet! Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen ;)

I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged. Not sure what the plan is when I asked she said we need to wait on the lab results?

So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see"

Hope you all are feeling better

[Christine]

Christine - That is so exciting that you are "doctor free" for the next few months!!

I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.

I had my appointment yesterday with the endo - I wouldn't call it a productive appointment - I went for more bloodwork today so now just waiting for those results. You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet! Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen ;)

I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged. Not sure what the plan is when I asked she said we need to wait on the lab results?

So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see"

Hope you all are feeling better

Oh good Lord, you've GOT to tell me who you are seeing. My last two endos have both used T3. Neither one of them are fans of using it while on T4 *if* the T3 levels are normal, but would use it if a patient was found to be a non-converter. But they definitely give it to you if you are prepping for a scan.

Are the lymph nodes recently enlarged? This could definitely be due to the RAI.

This doctor sounds like a nightmare.

[mrsklamc]

Christine- I'm glad you got good results.

Lovemygoofy and WDW dancer...I'm sorry you're joining this roller coaster with us...but you couldn't have better folks to walk you through...Don't know what I would have done w/o this board.

[luvmarypoppins]

O.K. I officiallly get the stupid thyroid award of the day, or something like that:).

Yesterday I was doing my pills for the week. I keep all the bottles in one big baggie and then put the weeks supply into the individual days in the pill holder that ds20 game me.

Well this morning when I got up to take the synthroid, I thought to myself, gee, this pill looks so purple to me, yes a bright purple.

So I wake up and really looks at it without my glasses and with my tearing eye and head cold etc. I see, why yes, its none ofter than the 175 dose, which I am not suppose to take. I got it mixed up with the new 150 dose which is a dull purple.

Well then I went back and looked at the 175 bottle. I honestly dont know how many I had left, but it looks like most of those are there, I think it was a little less than half a bottle left.

So now I am wondering if that mistake if I even made one in the other week etc. might mess up the blood test in a couple weeks. I sure hope not.

I dont know if I should even tell the endo this unless the blood test is bad. Not to say I dont want to tell her, I just think I might have not actualy taken any more of the 175 etc.

Oh well, another woncderful day of my thyroid cancer world.:)

[luvmarypoppins]

Anyone see the thyca home page with the little blurb about the ladies running at the WDW Marathon for thyca research.

I thought that was really neat.

hmm, if they are disers then they need to find this thread and join us!

[luvmarypoppins]

Hope everyone is doing well.

I am still tired and cold. I was so cold yest. I had some soup for lunch.

Next week is the blood test. Great. I will also tell the endo my symptoms when she calls with the results.

Also I read one poster on the thyca website say that the eye surgery I am suppose to have didnt work for her:scared1:. I really dont want to go through all that for nothing etc. And then she commented that there is a little tube sticking out of your eye area? Hmm, the surgeon never discussed this with me. I definetly lurk alot over there.

Well due to my family problems and my dh always traveling I havent called the eye surgeon for a follow up yet. The surgery is suppose to be in april with a 6 week recovery time and 3 days minimum on pain killers etc.

I am so on the fence about this right now.

[WDWDancer]

Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well :)

Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome! I tend to lurk over there a lot too to read all the different experiences. So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.

My TSH is still crazy high...64 when I had my labs done 2 weeks ago. My T3 is low and T4 is on the borderline of normal/low. The endo did up my Synthroid to 137 mcg. I tend to have a couple good days followed by really bad days. It is so frustrating and has been making work almost impossible.

My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move....I assume that it is normal when hypo. I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.

[Christine]

Hey, does anyone here watch New Girl? It's my secret guilty pleasure!!!

Anyway, on this past Tuesday's show, Nick gets a football injury and ends up at the GYN for an exam (don't ask;)). The doctor feels a lump on his neck and immediately suspects a thyroid tumor (even thought where she felt was NOT the thyroid). The rest of the show is about him and his friends thinking he's got cancer and is going to die and they are googling thyroid tumors. It was kind of funny. Not overly accurate but definitely a thyroid cancer awareness raiser!

WDWDancer--You poor thing, that is a high TSH to be having for so long. I hope this new dose works quickly. I bet you might need to go to .150 eventually.

[Southernmiss]

Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well :)

Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome! I tend to lurk over there a lot too to read all the different experiences. So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.

My TSH is still crazy high...64 when I had my labs done 2 weeks ago. My T3 is low and T4 is on the borderline of normal/low. The endo did up my Synthroid to 137 mcg. I tend to have a couple good days followed by really bad days. It is so frustrating and has been making work almost impossible.

My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move....I assume that it is normal when hypo. I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.


I just migrated here from the Community/Budget boards. And couldn't help reading your post and wanted to let you know that I have been hypo since the age of 10. That's over 30 years ago.

For the most part, I trucked right along with my dose of Synthroid until after one of my pregnancies 13 years ago. Something went crazy with my dormant thyroid and my GP couldn't figure it out so he referred me to an endocrinologist. It is sooo good to talk to a dr. who actually gets the thyroid.
She got me back on track and I have just needed an annual checkup since then.

I was at my endo checkup last year and complained of the bolded. My #s were in range with Synthroid but I just couldn't shake the body aches. She lowered my Synthroid dose and added some Cytomel daily for the t4.

It has been a Godsend! No body aches, lost a few pounds and much more endurance for daily activities plus a few extra activities.

Maybe you should ask about it?

[luvmarypoppins]

Southernmiss - welcome to the board

Christine - sorry you are not feeling well, saw your other thread on the cb

Well guess who called me twice already, none other than the eye surgeons staff. I havent called back yet. Dh and I talked and with all going on, we are thinking maybe August. In May is our Disney trip, in June I am prepping to teaching in July for VBS at my church and then there is august. I dont want to ruin my whole summer either.

Made the blood test appt. for saturday.

Even my ds commented to me that I am not looking or sounding good, gheesh. I told him yes I am out of breathe alot and my bones ache and I am tired etc.

I am sure the endo is gonna love hearing all of this for sure.

Hope everyone is doing well

[mrsklamc]

Had my TSH tested last week, it's at 0.03, I think she wanted it around 1 so I wonder if she's going to lower the dose. I see her Tuesday so I'll let you know. At least we are having gorgeous weather here and extended family is looking at Disney for next year so I have something to plan. :goodvibes

[luvmarypoppins]

Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.

Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.

Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.

Hope everyone is well.

[Christine]

Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.

Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.

Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.

Hope everyone is well.

I hate when they don't tell you the numbers. I'd be interested in hearing what they are considering you have been feeling so poorly.

I'm finally coming out of my 4 week "cold". It started as some cold but I think turned into sinusitis for the last two weeks. I knew it wasn't an infection and I am totally against antibiotics for that type of thing so I just toughed it out. It finally "lifted" on Monday. I think me pushing the Sudafed helped although that stuff does a real number on me. It's nice to feel sort of normal for a change.

[mrsklamc]

Glad to hear things are going well for you, Christine and LMP. Visit was uneventful, she doesn't feel anything in my neck and I'm not shaking, said my dose was right where she wants it, she wants another TSH and an unstimulated Tg test in 6 weeks.

[luvmarypoppins]

Micayla, glad to hear your visit went well. Just curious as to why you have to have another test in 6 weeks?

[mrsklamc]

Micayla, glad to hear your visit went well. Just curious as to why you have to have another test in 6 weeks?

She's just monitoring it closely b/c of TTC.

[1Grumpy9]

I got my bloodwork done a week ago and my endo called me with the results. My TSH levels are a little high, but she didn't want to change my meds thinking that if she lowers it any more, it will throw it back to low. My calcium is still low, but I am getting a little more continuous number at 6.9. She just tells me that if I feel bad to push some more Tums or my calcium carbonate when I feel crappy from low blood calcium (which is the tingling face).

I go to her new office on May 16th for my next appointment. As you all know it is very hard for those of us with Hypo to lose weight. Well, since I have finally got my meds straightened out, I am down 15lbs!!! That is a big accomplishment for me!!!

[kimmie]

1Grumpy9 So glad to hear things are getting under control! I am jealous of your weight loss! lol I am losing my extra weight very slowly. I have to watch everything I eat. My endo is keeping my levels a bit above normal (go figure). I am tired sometimes, but I keep going!
I am starting to feel like my old self again. I do not like waking up early to take my meds, but I need coffee when I get out of bed. Am I right in thinking I have to take meds 1 hour before eating or drinking? Does it really have an effect on things? Does anyone take it at night?

[Christine]

Am I right in thinking I have to take meds 1 hour before eating or drinking? Does it really have an effect on things? Does anyone take it at night?

I take mine right when I get out of the shower (about 4:30 a.m.). I don't have my tea/coffee until I get to work at 6:00 a.m. so it's never an issue for me.

On the weekends, I take it right when I get up but I have my tea within about 15 minutes.

I think as long as your not using loads of creamer or milk, it's probably fine to take it close enough to your coffee.

I don't know about you but I take Levoxyl and that stuff starts disintegrating right on my tongue. I seriously doubt that it lays around in my stomach for more than another 10 minutes. Once it's absorbed through into bloodstream, I would think coffee would be fine. Coffee does not bind to T4 (however, calcium does). So, stay away from the dairy products for a bit.

[kimmie]

Thanks Christine. I am taking Synthroid. I figured that even 30 minutes would be fine. I do take non dairy creamer but it has soy in it. That's not good either, right?

I think the pill gets stuck on the way down! I hate drinking water when I am not even awake! lol;)

[Christine]

Thanks Christine. I am taking Synthroid. I figured that even 30 minutes would be fine. I do take non dairy creamer but it has soy in it. That's not good either, right?

I think the pill gets stuck on the way down! I hate drinking water when I am not even awake! lol;)

Correct--soy also interferes with T4 absorption into the bloodstream but it is not really at the "stomach" level but more in the "bloodstream" level. It binds to the T4 in your bloodstream so you would definitely want to space out the soy creamer from your T4 ingestion.

HOWEVER, having said that, if you know you are going to have soy/calcium/whatever every day and you can't space it 2 hours apart, you can just do what you do but realize that you will probably need to take a higher dose of T4 to compensate for that. Many people just do that.

[1Grumpy9]

I am one that once I get out of the shower in the morning I take my meds (around 5:45am) and then don't eat anything until 7am. Of course this is during the work week and on the weekends, usually I take it when I get up to go to the bathroom and then back to sleep I go...LOL!!! I like to sleep in on the weekends a little bit more than during the week.

I have been still dealing with not going to sleep at a reasonable time during the week. It is usually around 11:30 or midnight until I finally fall asleep. It sucks during the work week because I have to get up at 5:15 for work.

[kimmie]

I have been still dealing with not going to sleep at a reasonable time during the week. It is usually around 11:30 or midnight until I finally fall asleep. It sucks during the work week because I have to get up at 5:15 for work.[/QUOTE]

I know what you mean. I take some melatonin at night. It does help me settle in and fall asleep.

[mrsklamc]

Stupid thyroid cancer.

I've practiced good oral care over the past year but my teeth have still really gone downhill. Dentist says my saliva 'is not working at all.' :(

[luvmarypoppins]

1 Grumpy9 - Congrats on the weight loss

Micayla - my dentist said to rinse with Act. I know some people use Biotene too. I make sure I floss alot. My salivary glands are fried too.

kimmie - glad you are doing well too.

Christine - I hear you on the college stuff. (Saw your other posts). We are doing stuff with ds20. He got accepted into 2 nursing schools so far and we are waiting for 2 more.

Well I took a mini nap at like 5 pm yest. I know this is so not right. I feel tired right now too at like 11 am. I have not called the endo back yet. Just too much going on.

I am so stressed out right now. The meeting which was suppose to be tomm is delayed again. Last night dh hit a deer, there goes our new to us van (it is a 2009). The one we got in Sept. after the girl on the cell phone totaled our van. I just thank God we were all o.k. I was int he front and ds22 was in the back. It was on the drivers side. I am sure the deer died. It was actually 2 deer. I know it will need some work to get it fixed. And my dh is leaving on another 9 day trip to the west coast next week, wont be here for easter. Ds22 might go with him.

Well at least I finished all the adrs for our trip. (Chefs,Tutto,Liberty Tree and Kona) I will really need a a vacation after all of this.

[kimmie]

:grouphug: luvmarypoppins

[SingingMom]

Just found this thread and it is very interesting to know others are/have gone through similar things.

I started with Graves Disease, put on PTU and had a "2 million in one chance side effect" of hepatitis!! Took me off of that and had radioactive idodine, which of course, put me hypothyroid. After a few months of trying to figure out proper synthyroid levels, dr detected a nodule, after fine-needle biopsy, discovered papillary carcinoma of the thyroid.

Had a total thyroidectomy with 7 out of 10 lymph nodes involved. That was 20 years ago, and I am doing very well. So , hang in there, ladies. :hippie:
I wish you all good health!

[Christine]

Just found this thread and it is very interesting to know others are/have gone through similar things.

I started with Graves Disease, put on PTU and had a "2 million in one chance side effect" of hepatitis!! Took me off of that and had radioactive idodine, which of course, put me hypothyroid. After a few months of trying to figure out proper synthyroid levels, dr detected a nodule, after fine-needle biopsy, discovered papillary carcinoma of the thyroid.

Had a total thyroidectomy with 7 out of 10 lymph nodes involved. That was 20 years ago, and I am doing very well. So , hang in there, ladies. :hippie:
I wish you all good health!

YOWZA!!!

You had one heck of a misbehavin' thyroid gland!!

[Christine]

LMP--

You are having a rough time of it. My biggest fear in life is to hit a deer. My carpool buddy laughs at me all the time about it. I actually get very anxious when driving during deer season. Uuuugggh.

I think that's awesome that your son is applying to nursing school. I have tried to push my son in that direction as I think he has the smarts and empathy to be in the medical field (he has so many issues himself) but he gets all weird when I mention nursing and thinks it's a "girl" thing. I told him "Think of all the women you'll meet!!"

[Pembo]

I was routed to your thread from the CB. Found out today that my 25 yo niece has been dx with thyroid cancer. I don't know much more than that. She sees an oncologist on April 9th. I tried calling her today but haven't heard back.

I've read a little of the thread and have lots of questions for her.

[luvmarypoppins]

I was routed to your thread from the CB. Found out today that my 25 yo niece has been dx with thyroid cancer. I don't know much more than that. She sees an oncologist on April 9th. I tried calling her today but haven't heard back.

I've read a little of the thread and have lots of questions for her.

Just wondering if you have been able to speak to your niece.

[Pembo]

Talked to my niece this weekend. She saw a dr on Monday. She is to have a thyroidectomy with some lymph nodes out as well. She is going on a cruise at the end of June so she wants her surgery asap. Right now she is scheduled for April 27.

I gave her links to this thread as well as to the thyca.org site.

She is worried about the scar and gaining weight after surgery. She gained 15 lbs in 4 months which is the reason she went to the doctor in the first place.

It's hard to be an aunt to a very independent niece.

[mrsklamc]

Things vary, but I was in no shape to cruise 8 weeks out from my surgery. As for the scar-- for mine they drew blood prior to the surgery, spun out a certain kind of cell, and injected it into the incision. That helped a lot and the scar on the front of my neck is minimal. The side of my neck is a different story but I just wear my hair over it.

[luvmarypoppins]

Pembo, I am glad you got to speak to your niece too.

My scar is really not the greatest, but then again my case was not normal. I have the normal scar plus a drain hole scar and then I have a jagged scar on the L side due to all my complications and surgeries.

If her surgeon is very experienced he or she should be able to do a good job.

Also I was in no shape to go any where about 2 months post op.

I would be thinking she would be starting to get ready for rai if she is having it, thus med withdrawl, or thyrogen shots and lid diet etc.

Has she told her surgeon of her vacation plans? I think she should and maybe look into postponing the trip etc. Hopefully it will not be a financial hardship to change it or cancel it.

Wishing your niece all the best.

[KAMLEM]

Pembo-

Everyone's case is different so I wouldn't say she should definitely cancel her trip. I have had 2 thyroidectomy's and a radical neck dissection and I would have been fine to go on vacation 3 weeks later each time. As far as the RAI, she may not even be having that so that may not be a factor. If she can wait to see how she feels after her surgery I would definitely suggest that.

I wish her luck!

[luvmarypoppins]

I am so miserably sick with a cold,cough and respiratory thing.

What tricks do you have to make it more comfortable with coughing etc. and having a neck dissection?

[mrsklamc]

I hate congestion :( ...I don't have any complications from my surgery though when it comes to coughing. Typically I don't notice my incision at all.

I usually take lots of showers, CVS has little vapor tablets I put in there too to help clear out some of the congestion for a little while.

[Christine]

Coughing is the worst but, fortunately, doesn't bother my incision area.

Many years ago, I got whooping cough. That was awful. I coughed so hard I lost consciousness once and almost blacked out a few other times. Finally my doctor did give me some Flonase nasal spray because the drainage was affecting the obliterated bronchial area. That did cut my cough down in half, which was better than nothing.

If you can get the drainage to slow down, the coughing will decrease if it is caused by mucous. Have you have tried the Neti Pot? That is great when you have a cold.

[Haimia]

Hi, new to this thread and looking for help. Endo is on vacation and I don't see him until May 8. I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks! :crazy2:

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

[Christine]

You T3 is below normal but, given the entire panel, you aren't necessarily hypothyroid. An endo needs to interpret the whole thyroid panel. What did your TSH and T4 levels look like.

Statistically, the odds are in your favor. Multinodular is a good sign, liquidity is a good sign, and in general, thyroid cancer is rare. All in your favor.

However, as soon as I say they, there is someone that beats those odds and you're left scratching your head. At this point, I think it's wise to be evaluated but I don't think you need to worry. A solitary, hard, non-functioning nodule is the one to worry most about.

[Haimia]

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed.

I need to stay off the internet search sites!! Only a little over two weeks to wait. Guess I need to be more patient!

[KAMLEM]

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

My doctor would consider that TSH high, she says that normal is anything between .3 and 3. When mine gets in the range of 3 I really start to drag. She likes to keep me right around .3.

[Christine]

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed.

I need to stay off the internet search sites!! Only a little over two weeks to wait. Guess I need to be more patient!

Yes, these days the lab limit is 3.0. You are borderline so, while I wouldn't call you hypothyroid, you're certainly not functioning optimally.

My male coworker has a 4.25 TSH and they won't treat him due to the fact that he feels good and is over 60 years old so there are complications there with cardiac issues. Each case is different.

[Haimia]

Okay, this is good to know. I have the symptoms of hypo - fatique, weight I can't lose, rough/dry skin, irritable - so it would make sense. I wonder why the hospital has listed that normal is 4.2 or below, when new norm is 3. It is not a small band-aid station hospital.

Will have multiple questions in hand when I see the endo in May!

[Christine]

Okay, this is good to know. I have the symptoms of hypo - fatique, weight I can't lose, rough/dry skin, irritable - so it would make sense. I wonder why the hospital has listed that normal is 4.2 or below, when new norm is 3. It is not a small band-aid station hospital.

Will have multiple questions in hand when I see the endo in May!

All the labs are still mostly listing the 0.4-4. It's the American Academy of Clinical Endocrinologist who have changed the "normal" range to 0.3 - 3.0. And endocrinologist will usually look at your numbers and decide what to do based on what endos think. They also take into account your whole situation so some may treat and some may not.

[Pembo]

My niece is scheduled for her thyroidectomy on Friday. She was told the surgery would last 4 hours, is that normal? We also learned today that she has stage 2, not sure what type. I know she will be having lymph nodes taken out as well. I've read the difference between stages on thyca but what does that mean in real life?

Also, anything you really needed or had that you would suggest to a new surgery patient? I want to give her a bag of things and am looking for suggestions. (ie. after my surgery for a brain tumor, I needed chapstik).

[luvmarypoppins]

Pembo - wishing your niece all the best on Friday.

I would say make sure she has button down pjs and shirts on hand. Its not fun trying to "slip" a shirt over your head post op.

If she is going to have a drain, then a shirt or pjs with a front pocket could help.

Maybe a pen and paper to write things down if she is too tired to talk

I liked playing cards with my 3ds when I was feeling better post op. I had to stay in for a week

Maybe some lifesavers or jolly ranchers as I am sure she will be having saliva issues.

If you are under 45 I think you are a 1 or 2 stage.

I was a stage 3B I think, but really the oncologist said I am a stage 4?? I dont want to question her. She said, she doesnt care about stages anyway.

If she needs to have RAI, then I would definetly have her start seeking out thyrogen etc. There was a lengthy post on how to get it on thyca. I honestly was blessed as my onc. is the 4th largest user in the US she said, so she has a great supply. Some drs. do not use it however. I have never had a problem with it except the nausea.

[Christine]

My niece is scheduled for her thyroidectomy on Friday. She was told the surgery would last 4 hours, is that normal? We also learned today that she has stage 2, not sure what type. I know she will be having lymph nodes taken out as well. I've read the difference between stages on thyca but what does that mean in real life?

Also, anything you really needed or had that you would suggest to a new surgery patient? I want to give her a bag of things and am looking for suggestions. (ie. after my surgery for a brain tumor, I needed chapstik).

My first surgery was about an hour (partial) and my second surgery to get the rest along with a lymph node and "clean up" was closer to 2 hours. Four hours seems a bit long to me; however, maybe he is just giving you worst case scenario.

I was only in the hospital overnight and didn't really feel like I needed much. I'm a reader so books, magazines would have been good.

There is no difference in prognosis from stage 1 to stage 2. Stage 2 usually means you have lymph node involvement. Not sure how the doctor knows this unless they had done some pre-scanning. Or maybe it is the size of the nodule. Anyway, same prognosis. After-surgery treatment with RAI will usually take care of it!

[luvmarypoppins]

Pembo - I forgot to add that my surgery was 6 hours originally, just as the surgeon said. 4 hours for the thyroidectomy and 2 hours for the neck dissection and lymph node removal. I think I had almost 50 lymph nodes out. They wanted to take all mine out as the surgeon told my dh the cancer was more extensive than the testing showed and worse when he got in there etc.



Haimia - Just wanted to say Welcome too. I am clueless as far as numbers go and sometimes my endo does not even tell me the numbers. I always ask Christine.

[mrsklamc]

My cancer was in my lymph nodes and it took 5 hours. The surgeon said she dug from my jawbone down to my collarbone trying to get as many out as she could, and I could feel it the day after. They were swollen to the size of quarters when they should have been about the size of peas.

Anyway Pembo, in terms of what she will need; My MIL bought me a nice new pair of sweatpants and a zip up sweatshirt, and that did nicely. Anything would have worked that didn't have to be pulled over my head but it was nice to have something new.

My surgeon recommended a bottle of vitamin e capsules, break one a couple of times a day and massage the scar once it is healed...I've read that it's the massage that breaks down the tissue and minimizes the scar more than the oil itself.

I didn't really have any trouble eating whatever I wanted, that I remember.

What are her instructions post op? I had to go hypothyroid (no thyrogen for my radioactive idodine treatment) and that was far worse than the surgery - being hypo and the radioactive iodine diet were horrible. Do you know when she is doing all that?

Another thing that really helped post surgery- My MIL is a nurse and the made sure I got up and walked - just the hallway in our house; to get the anesthesia out of my lungs. I came home and slept for a few hours, then she washed my hair. After that she said, "Now you're going to rest for awhile and then your husband's going to give you a bath." And she started weaning me off my pain meds.

Left to our own devices, I had two weeks of pain meds, and my DH would have let me lay on the couch popping pills for two weeks. I really think that made a huge difference in my recovery.

[Haimia]

Haimia - Just wanted to say Welcome too. I am clueless as far as numbers go and sometimes my endo does not even tell me the numbers. I always ask Christine.

Thanks for the welcome. This is all new to me and Christine's notes are great! My mom had issues and thyroid removed, but I was only 12 and it was not a subject that was discussed. She lived over 30 more years after surgery. I think (but don't know for sure) that her thyroid was pre-cancerous. How I wish, now, that it was discussed!

[luvmarypoppins]

Well today I called the emdo to reschedule my visit. It was for the end of July. Got a letter in Feb. that they cancelled it.

Of course I got an earful about what took me so long to call back. I told them I go through this all the time when they cancel on me (the other time it was like 3 times). I told them the endo said just talk to her and double book me. She says, oh..ok..October.

I said..no way, I have cancer and I am every 6 months and I am doing sono and blood work too etc. So they said they will call me back. Um, yeah alright.

I was just looking at our hosp. cancer stats. 2010 is the latest I could find. They have 177 new thyroid cancer pts. 43 are male. Does that seem like a little high male wise, just that they were commenting that there could be an increase if there were 911 responders from here etc. (article once in the paper)

I just think that they might have to get another endo to join the practice just to keep up with the patients etc. The last staff they added was my endo and that was like 3 years ago.

And thats my thyroid news for the day.

Oh and I am going to Disney 3 weeks from today:yay:. I need a vacation for sure.

[luvmarypoppins]

Pembo - have you had any updates on your niece. Hope all went well for her.

[left210]

I am hypothyroid. I am looking for a new endo as my current dr. only tests tsh and t3/4. I am currently on Synthroid and still having lots of symptoms. What tests should I have done and what questions should I ask when looking for a new endo?

[mrsklamc]

I am hypothyroid. I am looking for a new endo as my current dr. only tests tsh and t3/4. I am currently on Synthroid and still having lots of symptoms. What tests should I have done and what questions should I ask when looking for a new endo?

What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.

[left210]

What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.

I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.

[Pembo]

Hi again. My niece had her surgery last Friday. They took the whole thyroid and 40 lymph nodes. She is still in the hospital as she has a chyle leak. Any experience with that here?

My sister in law said she looks good, is in very little pain and is eating well. The drains are bugging her and she is very impatient with having to stay in the hospital. We are going to visit on Friday. Today the surgeon said she'll probably be in the hospital until the weekend. (that's a week). She was also told she is to be off work for 3 weeks.

Thanks for all the knowledge shared on this thread.

[luvmarypoppins]

Pembo - glad your niece made it through the surgery.

Looked that up but I have heard of it. (the leak)

I was in the hosp. too for a week post op. Mine was 3 surgeries and the coma so it took a while to recover for sure.

I had 2 drains too. One they pulled in the hospital with no lidocaine. Ouch and then some!

The other drain I had in for about 3 weeks because the dr. who saved my life had to rip my neck open in a few minutes etc. A real mess.

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

40 lymph nodes is alot but that is a good quadrant of them. I had around that many too.

I know one guy on thyca boards refers to it as scorch the earth aka get rid of everything that you have to etc.

Wishing your niece all the best. Keep us updated when you can.

[Haimia]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

[mrsklamc]

I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.

I was hoping Christine would weigh in on what 'other thyroid type measures' would be. Keep in mind that because there are SO many things your thyroid does, there are many thyroid symptoms that can be caused by other things as well. But you definitely need a good endo ASAP. I see Dr.Dawn Ayers in Noblesville, but the last I knew she was not accepting new patients.

[Suzanne033]

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

I had two drains as well and when they pulled my drains before I was released from the hospital there was no pain at all. It just felt... weird (for lack of a better word).

I totally agree with your comment about the scars. My drain scars are nearly non-existant now (11 years post-surgery). However, my surgery scar hypertrophied meaning it got thick and raised. It wasn't as bad as some of the pics you see of Keloid scar but bad enough that I was VERY self-concious of it. I tried everything to get it to go away (vitamin ointments, scar patches, even a consult with a plastic surgeon). For many years (probably 5 or more) I only wore shirts that had a very high necklines. Every time I looked in the mirror that was all I saw glaring back at me. I guess over time I just started to forget about it or got used to it or maybe it was that when I did wear a lower neckline no one seemed to notice it. That probably gave me confidence to just let it out more and more.

Now I kind of see it as a badge of honor. It was something I went through and survived. I have a 13yo daughter, who was 1 1/2 at the time, that I get to see blossom into an amazing woman and if all I have to do is deal with a scar and take some medicine everyday than so be it. Bring it on!!!

BTW, all those year I was wearing high collars shirts I was hiding one of my best assets... AMAZING CLEVAGE!!!! :rotfl2:

[luvmarypoppins]

Suzanne - I :) when you said the badge of honor comment. My dh calls it the badge of courage.

My dh just about passed out when they pulled the 2nd drain. He didnt see the first. I dont know why it affected him so much. He he is so used to this stuff He did 300 bandages for my other surgeries, sat and held my hand when I was in the coma for 2 days, watched some dr. oking needles in my eyes last year etc. I guess the drain just creeped him out.

I am going to the oncologist on Thurs. Going to tell her how tired I feel. I am sure she could care less. She is pretty unemotional and detached from all the patients. I am glad I dont have to see her alot. I am sure she will just say, well tell the endo. And of course I cant even get that office to call me back to reschedule my appt. So I will call them again this week, sigh.

Oh well I will be in Disney in 11 days:yay: I think we have 9 adrs, and we are gonna be spending time at the Flower and Garden show and of course star wars week end and I am definetly going to be spending some serious time in Storm Along Bay at the Beach Club. I so need a vacation.

[Pembo]

luv-Have a great trip.

My niece is still in the hospital, it's been 10 days. There was talk of another surgery to try a chyle leak repair however they decided to wait the weekend and it appears the waiting was a good thing. Her leak has slowed way down and there was talk of her going home on Tuesday. They pulled one drain on Thursday but the other was still running. Her calcium levels are good.

Thank you all for your advice and I wish you best of luck on your journeys.

[hcmommy]

So, I went for a follow up ultrasound a few days ago on the nodules and goiter found on my left side last year.

Another one was found on the right 2.3cm subrasternal. An FNA was done. My pathology results say thyroid follicular cells; colloid material; low risk for follicular neoplasm.

Seeing my Endo late this afternoon and i am freaked out.

If you had a substernal goiter with follicular cells present would you push for surgery?

[talulabelle]

Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...

I just had an ultrasound done today of my thyroid. I went to my doctor because I was feeling so bad. I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests. Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me. SO then she sent me for an ultrasound which I just had done today. I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen. There were alot of them. I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about . I am worried about what I will hear. However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...

Can anyone tell me from experience how worried I should be?

[Christine]

Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...

I just had an ultrasound done today of my thyroid. I went to my doctor because I was feeling so bad. I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests. Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me. SO then she sent me for an ultrasound which I just had done today. I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen. There were alot of them. I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about . I am worried about what I will hear. However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...

Can anyone tell me from experience how worried I should be?


You shouldn't be *too* worried. The black spots are cysts or nodules of some sort. Multinodular goiter is a common and, statistically, multiple nodules are less likely to be cancerous than just have one solitary lump. That's not to say that cancer isn't a possibility but it's more likely you have a nodular condition.

They ultrasound should give a pretty good description of whether the lumps are solid or liquid (or both) and then depending on that, you may get a recommendation to have a fine needle aspiration just to see what they are made of.

[luvmarypoppins]

hcmommy - what did your endo say at your visit?

talulabelle - I had 2 solid masses but as Christine said the multi thing is probably better. What surgery does your ds have to have? My ds had knee surgery. I think they just fixed the acl or something. He did well but has a rare condition that the ortho said he will proably need a knee replacement by the time he is 40. His cartlidge is way too soft and unusual they said. But he wa out with friends the next day and did his pt at his job. He recovered very quickly.

Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min:)

My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k:scared1:. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions.
So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.:rotfl2:

[Haimia]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

I am reposting this as I got no response. Any takers?

[angwill]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo. T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo. Did your endo redo the tests? How did they come back the second time?

I never had nodules so I can't help there but I do know of someone who had so many nodules that the surgeon said it didn't look good for her and felt it was cancerous but the tests came back that it wasn't so don't give up hope.

As for your plans never put your life on hold. Keep making plans and living you can not put it on hold because of a stupid thyroid, right? You do that and you are bound to become depressed.

[Christine]

All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo. T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo. Did your endo redo the tests? How did they come back the second time?




Actually the T3 and T4 tests are not opposite of what you would think. Only the TSH is that way. TSH is low = HYPER. TSH is high = HYPO. For T3 and T4 measurements, those are the direct measurements of the thyroid hormones. If they are low, they you are hypo.

[angwill]

Actually the T3 and T4 tests are not opposite of what you would think. Only the TSH is that way. TSH is low = HYPER. TSH is high = HYPO. For T3 and T4 measurements, those are the direct measurements of the thyroid hormones. If they are low, they you are hypo.

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. :confused3 I will have to talk to her about it when I see her in a few months.

[talulabelle]

ok - so my Drs office just called and said the ultrasound was "benign". I asked "what was benign?" thinking they meant the nodules or some mass. And the dumb secretary said "the ultrasound" uh-huh. I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large? I hate doctors offices.

[mrsklamc]

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. :confused3 I will have to talk to her about it when I see her in a few months.

I know sometimes I know exactly what I mean to say but it comes out the exact opposite. :) But yes, the lower your TSH the more hyper you are.

[mrsklamc]

ok - so my Drs office just called and said the ultrasound was "benign". I asked "what was benign?" thinking they meant the nodules or some mass. And the dumb secretary said "the ultrasound" uh-huh. I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large? I hate doctors offices.

There are any number of thyroid disorders, unfortunately, but benign just means 'not cancerous.' So yay- although it can be frustrating figuring out what ELSE is going on. Although many people have nodules that don't bother them at all.

[mrsklamc]

h

Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min:)

My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k:scared1:. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions.
So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.:rotfl2: :)

So glad he has some options.

[mrsklamc]

Haima- sorry no one responded to you. Unfortunately your symptoms are outside of my area of knowledge. Although maybe that's NOT unfortunate cause what I know about is pretty much thyroid cancer. :rotfl2:

My potassium is low- neither of my doctors was too worried about finding out why. Anyone else had this symptom?

[luvmarypoppins]

Haima - sorry I am clueless as far as the numbers go. Usually my endo will either tell me the numbers or have the secretary or nurse call and just say, oh your numbers are good or ok etc. When you say the biopsy is the 10th, do you mean today?? If so, wishing you all the best. Its good that hopefully you will get some definitive answers from this. Although my first biopsy was inconclusive, so I had to have 2 more, the third one being a core biopsy, but I had 2 solid tumors. Wishing you all the best.

talulabelle - glad you got a good ultrasound report. Those are the best!!

Well I am back from the oncologist. She said all is well. She also observed my wonderful tearing eye. Told her I was at the surgeon, need surgery etc. She says I should get it done because you have to worry about infections etc. I didnt want to get into it with her. The eye surgeon told me it could wait as long as there were no infections (which I havent had any)

She wants the endo to check my thyroglobulin in July. (I have to look but I think the endo already ordered that test for me). If its not on my lab sheet I will call and ask ahead of time)

The oncologist said her plan is for next year to give me two thyrogen shots and a blood test again. Of course, you know my oncologist never has a shortage of thyrogen:). That will happen sometime next June. Made sure it was after our Disney trip, No diet, just the shots.

[Christine]

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. :confused3 I will have to talk to her about it when I see her in a few months.

Yeah, you should. TSH is the only one of the thyroid tests that is "inverse". That's because TSH is not a true thyroid hormone, it is a pituitary hormone. So if you are hypo, the pituitary pumps out a lot of TSH to try to make your thyroid work--hence, high TSH means low thyroid. If you are hyperthyroid, the pituitary puts on the breaks and shuts down TSH production so low TSH means HIGH thyroid.

The other hormones: T3 and T4 are direct thyroid hormones and the level of them is measured in the bloodstream. If they are low, you just don't have enough, so hypo.

[Haimia]

Thanks, everyone, for your help. I know sometimes a post gets overlooked. Not a problem. Just trying to find out information as this is all new to me.

Endo is thinking I am hypo but the tests confused him. He was looking at the FT4 and says "hmmm, that's interesting." No explanation. I had the TSH and FT4 tests redone per endo. The results are:
TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

Yes, also had the FNA biopsy yesterday. The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh. They took two samples from each of the two larger nodules. Results to get at the doctor by next Wednesday (my next endo appointment).

[Christine]

Thanks, everyone, for your help. I know sometimes a post gets overlooked. Not a problem. Just trying to find out information as this is all new to me.

Endo is thinking I am hypo but the tests confused him. He was looking at the FT4 and says "hmmm, that's interesting." No explanation. I had the TSH and FT4 tests redone per endo. The results are:
TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

Yes, also had the FNA biopsy yesterday. The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh. They took two samples from each of the two larger nodules. Results to get at the doctor by next Wednesday (my next endo appointment).

Your TSH and FT4 actually look very good. You are right in the middle of both ranges.

[luvmarypoppins]

Haimia - glad to hear the FNA is over. Wow, I never had a cloth on my face. I have seen them do that with pic line insertions One being my hospital roomie once. I think that would have freaked me out. Needles dont bother me in the least.

Wishing you all the best. I am sure next wed. cant come soon enough for you. Waitng is the hardest for sure. Hang in there.

[mrsklamc]

Just heard that Yahoo's ex or soon to be ex CEO has thyca. They say it's why he's stepping down but unless it's anaplastic I would guess it's has more to do with lying about his academic records.

[sjlupin]

Hi!

I can't believe I found this thread!! I didn't know you all were here! :goodvibes

I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday.

I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???


Thanks!
Sandy

[luvmarypoppins]

Sandy - welcome, but sorry you have to be here. I am surprised you only had to be on the diet for a week. I had to be on it for 2 weeks and I think Micayala had to be on it almost 3.

But glad you got thyrogen. That is all I have always gotten too.

The scan you will just lay on the table for a long time maybe up to an hour? Some places let you bring music etc, I just rested and sang my favorite contemporary christian songs to myself. The one part of the machine will get very close to your face. Just lay still and close your eyes. Its not bad, just weird.

How much is your RAI dose going to be? I suppose they gave you all the instructions etc.

Wishing you all the best. Keep us informed when you can.

[sjlupin]

Thanks for the welcome! :goodvibes

I was surprised about the diet too. I started last Wed and have to continue through this coming Friday. Originally he said 1-2 weeks prior to RAI, but ultimately said 1 week was enough. Not sure what the deciding factors where for that? :confused3

I am sooo glad I got the Thyrogen too. I wasn't sure awhile back - it didn't look like insurance would cover it and it is $2500! :scared1: It turns out it is covered and I was able to do it and not go off my Synthroid. Phew!

I'm not sure what my dose is. I was wondering that as well. I'll try to find out tomorrow.

Thanks for the info on the scan. I appreciate it!

I'll check in while I am isolated. I am going to be LONELY!!! I hate being cooped up and/or away from my family. I will actaully be in my house, but will just be staying away from everyone. It will make me sad. Lol

[1Grumpy9]

I head back to the Endo tomorrow for a check up to see how things are going. I will probably have to go get bloodwork tomorrow after my appt. I have been feeling pretty good (still not sleeping too well..actually not really wanting to sleep at a normal time). Hopefully everything is going to be good. This is my first visit in her new office (her very own practice).

[sjlupin]

I had my RAI dose this morning. I think the dose was 32.4. He said it was lower than he thought he was going to give me. He said there was new research and guidlines released a few weeks ago that lead to a lower dose and lesser restrictions afterwards.

He was telling me too that they feel that for Thyroid Cancer patients, the RAI passes through within the first 24 hours (since we have very little thryoid tissue to absorb it, we hold on to it less time, verses someone doing RAI due to hyperthyroid with the gland still present). I only have to sleep alone for 3 night and stay away from general public for 5 days. I can go back to the office on Monday!

So, I basically feel ok. My mouth is a little sore. The tip of my tongue feels a bit weird (almost numb-ish) and I have a few sores inside my upper lip. My mouth is susceptable to this type of thing when I am stressed or eat alot of acidic foods - all of which have been true lately with the LID, etc. So, it could be coincidence. :confused3 Also, I am really, really tired this morning. I think that just may be a result of stress/anxiety. Anyone else have mouth issues after RAI? Just curious.

Sandy

[Christine]

Hi!

I can't believe I found this thread!! I didn't know you all were here! :goodvibes

I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday.

I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???


Thanks!
Sandy

The scan is the easy part.

It's not like an MRI where you are closed it. You lay on a table and, depending on the equipment, the camera moves over and under you. It takes about 45 minutes and is quite peaceful. You won't take any more RAI other than the dose you took today. Some places will tell you right away what is on the scan and some places make you wait.

Good luck, really, the hard part is over.

[sjlupin]

Thanks Christine!

I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else! :thumbsup2

[Christine]

Thanks Christine!

I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else! :thumbsup2

Yes, a post-ablative scan. A very good idea and rarely do they ever find anything else.

I also has the 30 mci dose on my first RAI treatment. It didn't burn out the entire thyroid for me so I had to have more treatments the next year. I hope it works for you.

Doing the LID for 1 week is actually fine as long as you do it well. I have heard that they recommend doing it for 2 weeks prior to the RAI dose because they feel that it takes patients the first week to "get it right" and by the second week they've mastered it. I think that's BS. By the second week, they are insane!!! Anyway, it takes approximately a week for iodine to be secreted from your body so one week should be just fine as long as you were good at it!

[luvmarypoppins]

Well tomm. afternoon dh and I will be in Disney World:banana: I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning.

I hope the swimming at Storm A long Bay helps my arm a little.

Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs:).

We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).

[Christine]

Well tomm. afternoon dh and I will be in Disney World:banana: I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning.

I hope the swimming at Storm A long Bay helps my arm a little.

Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs:).

We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).

Enjoy! Citricos has always been a must-do for us. We really love the place. Are you going to do a dining report? I love reading those.

[Haimia]

Went to endo yesterday. Nodules are BENIGN!! But, thyroid is coming out anyway due to the size/location of the nodules. One is on the isthmus and I can feel it when I swallow. I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine). The other nodule is now real prominent since the FNA. So, thyroid comes out in August (after wedding and vacation!).

I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3). I will be calling him in a week if he does not call me first.

I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in. Also, Germany trip is untouched! So, August will be plenty soon enough for me! Thank you all, for your help and understanding with my posts.

[Christine]

Went to endo yesterday. Nodules are BENIGN!! But, thyroid is coming out anyway due to the size/location of the nodules. One is on the isthmus and I can feel it when I swallow. I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine). The other nodule is now real prominent since the FNA. So, thyroid comes out in August (after wedding and vacation!).

I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3). I will be calling him in a week if he does not call me first.

I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in. Also, Germany trip is untouched! So, August will be plenty soon enough for me! Thank you all, for your help and understanding with my posts.

Congratulations on the mostly good news and glad you can get it worked out with everything else going on!

[sjlupin]

GET TO GO OFF LID TOMORROW!!!!!! :cool1::woohoo::yay::cheer2::banana::jumping1:

I am soooo happy. I just wish my mouth wasn't so sore! :rolleyes: Hopefully I will be able to eat some yummy food! :cool1:

[mrsklamc]

GET TO GO OFF LID TOMORROW!!!!!! :cool1::woohoo::yay::cheer2::banana::jumping1:

I am soooo happy. I just wish my mouth wasn't so sore! :rolleyes: Hopefully I will be able to eat some yummy food! :cool1:

So happy for you! My tastebuds burned out about a week post RAI (higher dose though) so if that happens, don't worry, they will come back eventually.

[sjlupin]

Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'! :goodvibes

Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?

My name is Sandy and I am 45. I am a born and bread New Englander :) DH and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!

In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.

Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'. :scratchin

So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day :sad2:

Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.

We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out. :sad1:

Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.

Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear.

All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World! :hug:

As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.

Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!

Sandy

[Christine]

Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'! :goodvibes

Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?

My name is Sandy and I am 45. I am a born and bread New Englander :) DH and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!

In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.

Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'. :scratchin

So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day :sad2:

Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.

We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out. :sad1:

Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.

Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear.

All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World! :hug:

As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.

Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!

Sandy

Sandy,

Thanks for telling your story. It sounds as if it went as well as it could and everything was confined to the thyroid.

It's funny, I think my "go to" food after the LID was always a bacon, egg, and cheese biscuit from McDonalds!

Your thyroid cancer was found much like mine--have a routine visit for something else.

Sounds like you are on the upside of things now and you should be care-free for while. Please hang around with us. This is not a "busy" thread but it helps to have other people chime in with their experiences occasionally.

Christine

[Haimia]

sjlupin - sounds like a lot that you went through, but so glad it is turning out good for you. It appears like your story and mine are often how it is found - not a direct problem, but as a side check or other condition revealing it.

[luvmarypoppins]

Quick post from the Beach Club, our last day

Got to see DISers Sha from the BC thread and Tuffcookie

Hot, swam twice in Storm A Long Bay

Best thing we saw so far, Cinderellas carriage, the horses and bride and groom right here

Lots of good food

My bones hurt so much

[sjlupin]

LMP - sounds great! We have stayed at the Beach Club 3 times and Stomalong Bay is SO awesome!

Can't wait to hear more about your trip and the FOOD!! ;)

[sjlupin]

Hi guys!! :wave2:

I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'. :cool1::cool1::cool1:

I am on CLOUD 9 .... so so so happy!

I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!! :woohoo:


Sandy

[mrsklamc]

Hi guys!! :wave2:

I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'. :cool1::cool1::cool1:

I am on CLOUD 9 .... so so so happy!

I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!! :woohoo:


Sandy

Hooray! I had two wait two long years for those words!!! :banana::banana::banana: Enjoy celebrating!

[kimmie]

Hi Sandy!

Glad to hear that your scan was clean!

Your story sounds like mine too! I went for a routine physical and my GP found that my throid was enlarged...the rest is history!

[sjlupin]

Thanks!! :goodvibes:goodvibes

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

[Christine]

Thanks!! :goodvibes:goodvibes

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

Hi Sandy! I know you're on Cloud 9 so I don't want to rain on your parade but I do want to clarify something so that, if anyone down the line with thyroid cancer reads these posts, that this is clear.

So, just a few weeks ago you had your RAI treatment of 30 mci, correct? What you just had is a post-ablative scan, correct? From what every doctor told me over the years, you don't TRULY get a clean scan until you have your NEXT scan. You just had your ablation, it literally takes a few months to kill off your residual thyroid tissue. When you had the post-ablative scan, they take advantge of the fact that you have had a large dose and they use the scan to look for any distant metastises (sheesh I can never spell that word) that might be there that would not show up on a tracer dose. I'm betting that when they scanned you, the tech saw a nice beam of light in your neck where you thyroid used to be and was in the process of being obliterated and then they saw NOTHING anywhere else. For distant "mets" that's a clean scan.

Your next scan is going to be the one that gets you a victory. In 6-12 months, they will give you a tracer dose and scan you again. They will be hoping to not see that beam of light in your neck. If there is no light in the neck, your 30 mci will have done its job. If there is anything that lights up, it won't have completely ablated the residual.

So, while you have good reason to be happy and celebrate, I do feel that my above text is a bit of killjoy but I just want to make sure we have accurate info posted. And please, if I have misunderstood any of your treatments/timing please let me know.

[Haimia]

May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76)
T3 free was 1.88 (normal is 2.2 - 4.0)
TSH was 3.151 (normal 0.400 - 4.200)
thyroid peroxidase 0.3 (normal 0.0 - 9.0)

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm

May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

FNA - two nodules, four samples, all benign

May 16, 2012 - TSH 2.8 (0.400 - 4.200)
FT4 .51 (0.89 - 1.76)
FT3 2.26 (2.2 - 4.0)

I have listed my prior bloodwork and the most recent from 5-16-12. I am to start 50 mcg of Synthroid. Any thoughts from those of you out there with knowledge? Thyroid is to be removed in August 2012.

[mrsklamc]

Thanks!! :goodvibes:goodvibes

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

Please DO NOT feel guilty. I did have a harder road than some, but a far easier road than others, and I am ecstatic that you got good news.

[mrsklamc]

May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76)
T3 free was 1.88 (normal is 2.2 - 4.0)
TSH was 3.151 (normal 0.400 - 4.200)
thyroid peroxidase 0.3 (normal 0.0 - 9.0)

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm

May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

FNA - two nodules, four samples, all benign

May 16, 2012 - TSH 2.8 (0.400 - 4.200)
FT4 .51 (0.89 - 1.76)
FT3 2.26 (2.2 - 4.0)

I have listed my prior bloodwork and the most recent from 5-16-12. I am to start 50 mcg of Synthroid. Any thoughts from those of you out there with knowledge? Thyroid is to be removed in August 2012.

I'm sorry but you're way over my head! My levels were all fine pre-surgery and now TSH is the only one they watch.

[luvmarypoppins]

Haimia - I am so clueless as far as numbers are concerned, but yours all look within range. Just make sure you have a good experienced surgeon

Sandy - I am so happy to hear your scan was clean. Heres a :cloud9: for you. As Chrstine said, my oncologist too told me the first scan was important, but then the 1 year follow up scan was more important because that is when you see if the rai really did its job. They told us it could take up to a year to work. I figure any good news is welcome and a step in the right direction too.

I will probably do a little dining report from our trip. The worst place was Tutto, so disappointing in the food area. The guys singing Happy Birthday to me was awesome. Our favorite - Citricos!!

[luvmarypoppins]

Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.

Oh and I am the oldest one here I think, enough said:)

[Christine]

Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.

Oh and I am the oldest one here I think, enough said:)

Are you sure you're the oldest? I might be....;)