The THYROID Thread

[luvmarypoppins]

So I typed this all out one morning at 3 AM on my phone while pumping and it didn't 'take.'

So our sweet baby boy arrived on 2/3, 7 lbs, 11 ounces. He seemed to be doing well until he failed his 24 hour screen, and came up to the NICU, so I've pretty much been here since then. He should be ok, just needed some extra time to adjust to the outside world.

Welcome sweet little guy! Blessings to you all!

 

[luvmarypoppins]

Singing Mom - I am wondering how the fast passes worked with the Swan. I did see the little table set up at the Epcot International Gateway one day. We are thinking of staying there in March and that might influence the decision.

I have a horrid cold and am just miserable. At least its not too much coughing yet. That is the worst with the neck dissection. I feel like my jaw is really bothering me too.

Getting weary of this snow. Hmm, lucky dh is in sunny Calif. and I am stuck in the house with 3 adult ds. What is wrong with this picture? Between today and tomm. we are getting 6 to 10 inches. sigh.

Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one.

Next week I am going to the endo. I am sure she will understand that I didnt get the sono yet due to the weather.

 

[Christine]

.

Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one.

Oh, the weather outside is frightful!! We have about 10 inches of snow. There is a lull right now, but the back end of the storm comes through later and we are supposed to get a few more inches.

The federal government shut down today. I am under a telework agreement so I still have to work when that happens but it's still nice not to have to be outside in this!

 

[SingingMom]

Singing Mom - I am wondering how the fast passes worked with the Swan. I did see the little table set up at the Epcot International Gateway one day. We are thinking of staying there in March and that might influence the decision. I have a horrid cold and am just miserable. At least its not too much coughing yet. That is the worst with the neck dissection. I feel like my jaw is really bothering me too. Getting weary of this snow. Hmm, lucky dh is in sunny Calif. and I am stuck in the house with 3 adult ds. What is wrong with this picture? Between today and tomm. we are getting 6 to 10 inches. sigh. Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one. Next week I am going to the endo. I am sure she will understand that I didnt get the sono yet due to the weather.

There are FP+ kiosks throughout the parks. You scan your admission ticket and can choose 3 FP at a time. Once the testing period was over in mid-January, you didn't need to show your swan/dolphin room key. So far SD guests can not get FP+ in advance of the current day, but there were rumors that might change in the future.

Tons of snow in NJ. SO tired of this winter!!!

"SingingMom" ....Sent from my iPad using DISBoards

 

[luvmarypoppins]

Survived my endo visit yest. It was the good, the bad and the ugly.

The good:
Tg is undetectable
I lost 14 lbs. since Aug.
She said I dont have to go to the oncologist anymore - yippee!

The bad:
My tsh shot up from 0.7 to 1.7
She said she wants it close to 0 as possible because if it doesnt get there then there is a good chance the cancer will have an chance to grow back Christine is this right??? She said the cause of this could be my age or my body not processing it correctly??? So she is upping my dose to an extra pill of 150 on sundays and ordered a blood test for 6 weeks. She said if it still does not go down, then its more adjusting and more blood work till it gets right??

Told her I didnt like the new internist and asked her about the female gp my ds went to. She said she heard of her but doesnt know her personally and I should try her. I told her the internist was too preachy and ordered too many tests. I personally dont know if that is her friend but she seems genuinely disappointed that I did not like her.

Said I need another reclast infusion. Followed by a pre infusion bone scan. She said after 5 years they stop as there is no paper stating the benefit after 5 years etc?

Told her I didnt get the sono due to all the bad weather. Have to get it soon

The ugly:
Electronic prescriptions!!! Does anyone else have these to deal with.
I have 5 meds. They only do electronic to pharmacy now. I never walk out with a a paper script. So I go into the pharmacy after the visit on the way home. They say they dont have the synthroid script but have 2 others. The tech says you can take your old synthroid refill. I said, no I am not taking it because it will have 5 less pills in it for the month. Why should I. My ins. is paying for it etc. they dont know why they dont have that one from the dr.

So this morning I was on the phone for like 20 mins. with the endo office. They couldnt even find me in the computer system. I had to give them my medical record number finally. Gheesh. The recept. sees a note to the dr. from the nurse and she is questioning the new dose of synthroid. the dr. says yes I want the patient to have it etc. So I have a feeling the nurse somehow had a hand in messing this up. sigh. I have 2 more pills left and will call the pharmacy later today or tomm. morning at the latest etc. Oh and add in that they listed another of my meds as a mome med aka over the counter and the wrong dose too! I said no its a script and you have the wrong dose down (This was on a patient summary that they give you when you leave. Mine was over 5 pages so I dont have time to actually read it there. However if I did I would have caught that one mistake etc). Rant: give me back my paper scripts, lol!1 I told the recept. I hate these elect. scripts. as the patient sees nothing.

My ds goes to the ortho tomm. I hope he gets a boot or better yet nothing. We shall see. I think he has had it with this too. It wouldnt be so bad if he didnt have to deal with getting around in the snow and ice.

Micayla - how is the new mom and little guy doing??

Singing Mom - leaning toward the Swan for our trip. I know my ds will not be happy with non charging outside the resort itself and I think they will feel like have nots without the magic bands since they saw so many that we had etc.

Christine - thought of you as my ds said one of the places he went to at his college job fair was the naval offices in Maryland? I think that is a way long reach for him unfortunately.

Well check in when you can. Hope everyone is doing well.

 

[luvmarypoppins]

Oh and one more thing I forgot to add. When I had the bad cold last week and my jaw hurt so much I did notice a little bump by my check. Its always been there but I thought it was bigger etc. I was thinking of putting a hot compress on it since it hurt alot.

I asked her to feel it yest. It has gone down a lot in size. She feels its a salivary stone, a small one but she says of course its a side effect of the radiation and if it gets bad again she will send me to the surgeon,

I know the surgeon who takes these out only does this surgery. The surgeon who trained him was the one who almost killed me and he is not the one who saved my life. This is another guy. He does it laprascopically I think and its only a 20 min. surgery to remove them.

Guess I will file that in my nice to know but I am not going there unless its absolutely necessary etc.

 

[SingingMom]

Luvmarypoppins: focus on the Good and don't dwell on the bad or the ugly. ((Hugs))

I'm with you - i DESPISE electronic Rx and I also HATE mail order pharmacy. It just makes it so hard for people like us who have chronic illness.

We never stay at Swan, always at the Dolphin. We like the larger resort and amenities, although both hotels can access all the areas. We like the hustle & bustle of the Dolphin and the proximity to the Cabana Bar and pool area. Charging to the resort would be nice, but the deals for a deluxe property and still enjoying WDW transportation.

Good luck with the remaining dr appts!

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

luvmarypoppins---Hmmm, no idea why your TSH would have changed so much. Let's just hope it was a bad batch of pills. Or it could be that something in your body chemistry changed. I know that estrogen plays a role in synthesis of T4. Once when I tried using oral contraceptives, my TSH went from 1.0 to about 8.0. Once I stopped using them, I was fine.

Congrats on the weight loss, that's awesome. Have you been doing anything special to lose weight?

What type of career is your son looking into? I'm not sure where the Navy offices are in Maryland. The Navy has so many divisions that we have offices all over the DC/MD/VA area. I know there is a special intelligence unit over in Suitland, MD.

 

[angwill]

LMP,

Anytime I lost weight my TSH numbers went lower, more hyper and not higher and with gain they went higher so it is weird yours changed the opposite way. I did have my numbers go really hypo years ago when taking a multivitamin with iron and had to start taking a senior vitamin that didn't have the iron and they went back down. It had nothing to do with the time I was taking them either.

From what I have read after thyroid cancer they do what your numbers as close to 0/hyper as possible because the higher/hypo they go the more chance there is that cancer will grow.

What is reclast infusion followed by a pre infusion bone scan? Is that thyroid related?

I had problems with perscriptions for years. The pharmacy always blames the doctor and the doctor always blames the pharmacy. I have had nurses call in my scripts with the wrong name and wrong scrip just as I have with the electronic ones. The worst is when they call in only a month at a time when I always request 3 months at a time. It has taken me 2 weeks to get them to fix fix those issues.

I do hope you have no more salivary gland issues.

 

[luvmarypoppins]

So how is everyone doing?

Angwill - I have osteoporosis partly from family hx and the endo said partly because my synthroid was so high 200 mg for so long it damages your bones at that dose over a period of time. I know she calculated my fracture score and she said I was within the limits for the infusion. I cant take a pill because of all my regular gi issues and meds. So they do a bone scan to compare how it is helping each year and also I have to have a blood test to check some kidney thing first before the infusion because the infusion could damage your kidneys too.

More snow here today, not much though, so that is good but they are saying more is possible in the net week. Weary of this.

I am also having some issues with the ear and jaw. I dont think things are draining right (the salivary issue). I know once the np at the ent surgeon said they try antibiotics to see if it clears up first. I honestly dont want to go to the ent surgeon. I cant stand looking at the guy knowing he almost killed me and since they are all sub specialized he might refer me to one of the other guys but I would have to see him first, sigh. I am hoping this thing gets better but I keep feeling a tugging annoying pain on the side of my L face where the dissection was. Not fun.

My ds is going for his echo in 2 weeks. The earliest appt. they had.

Dh is off to califor. again. I have to check the dates on that.

Finally made the hotel reservations. We are staying at the Swan March 18-20 and then at the Beach Club from March 20-23. Ds 3 said he wants to swim in storm a long bay. I guess this is like a little pre college graduation celebration for the 2 ds. I hope this is right. I am having dh call the airline again. We cashed in all his miles and got vouchers to say both hotels were free. I dont think that is right. I told dh I calculated we should owe around $500 to disney. Well we have a while to straighten it out before we leave. So right now the rooms are free unless they tell us otherwise. The lady on the phone last night from the airline desk said we dont owe anything. Highly doubt that.

Now to make the adrs.

Micayla - we need a mommy and little guy update!

Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts.

Check in everyone when you can

 

[Christine]

Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts.

Check in everyone when you can

I'm reading The Valley of Amazement by Amy Tan. Kind of a historical fiction book, which seems to be my thing these days! It's not too bad.

Not doing too much else. Just working, working, working. The snow stuff is making me weary too. I'm tired of it. We've had two mornings where we've had snow for the commute. Each morning it has snowed 2-3 inches during the 6-10AM hours. Fortunately, I go to work very early and missed most of it but my coworkers have had to bad mornings of gridlock.

Still waiting on Levoxyl. Due to my insurance, I have to order my meds through CVS and they haven't pushed the distributor for them. It's kind of aggravating when you hear about people going to various pharmacies and getting it filled. Oh well. I've waited 9 months--what's another few weeks.

 

[mickeymouse108]

so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms. any info from your own experience's would be greatly appreciated. very worried right now.

 

[Christine]

so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms. any info from your own experience's would be greatly appreciated. very worried right now.

Please try to relax (I know it's hard). The statistics are on your side. Many, many thyroids are lumpy and bumpy. Multiple nodules are good indicator of thyroid "trouble" versus thyroid "cancer."

Coughing is not directly a symptom of thyroid cancer like you might think. It is more a symptom of a nodule or nodules that are big enough to press on your throat and make you cough. Some people with thyroid cancer that has gotten very large, or benign nodules that have gotten very large, might have difficulty swallowing or feel the need to cough because of the pressure on their throat.

I never had one symptom when I had thyroid cancer. Not one.

The ultrasound will give you an idea of how many nodules you have, their size, location, and what they are made up of. It will not give you a diagnosis, unfortunately.

Just try to relax and know that the odds are on your side that you just have a misbehaving thyroid gland.

 

[mickeymouse108]

Please try to relax (I know it's hard). The statistics are on your side. Many, many thyroids are lumpy and bumpy. Multiple nodules are good indicator of thyroid "trouble" versus thyroid "cancer."

Coughing is not directly a symptom of thyroid cancer like you might think. It is more a symptom of a nodule or nodules that are big enough to press on your throat and make you cough. Some people with thyroid cancer that has gotten very large, or benign nodules that have gotten very large, might have difficulty swallowing or feel the need to cough because of the pressure on their throat.

I never had one symptom when I had thyroid cancer. Not one.

The ultrasound will give you an idea of how many nodules you have, their size, location, and what they are made up of. It will not give you a diagnosis, unfortunately.

Just try to relax and know that the odds are on your side that you just have a misbehaving thyroid gland.

thank you for your encouraging words its so hard to wait to find out what is going on.

 

[angwill]

I have been on 350mcg since my surgery and my thyroid tests are coming up perfect. The only think I hate is my hair has fallen out drastically and the texture even changed at the higher dose. I have been on over 200mcg of levothyroixine for almost 20 years. My calcium levels and vitamin D have been low forever so I have taken supplements but I have never had a doctor tell me about osteoperosis hapening on higher doses. I will have to bring it up next week when I see my doctor. I do hope your tests all come back good. It has to be exhausting wondering and waiting.

So how is everyone doing?

Angwill - I have osteoporosis partly from family hx and the endo said partly because my synthroid was so high 200 mg for so long it damages your bones at that dose over a period of time. I know she calculated my fracture score and she said I was within the limits for the infusion. I cant take a pill because of all my regular gi issues and meds. So they do a bone scan to compare how it is helping each year and also I have to have a blood test to check some kidney thing first before the infusion because the infusion could damage your kidneys too.

More snow here today, not much though, so that is good but they are saying more is possible in the net week. Weary of this.

I am also having some issues with the ear and jaw. I dont think things are draining right (the salivary issue). I know once the np at the ent surgeon said they try antibiotics to see if it clears up first. I honestly dont want to go to the ent surgeon. I cant stand looking at the guy knowing he almost killed me and since they are all sub specialized he might refer me to one of the other guys but I would have to see him first, sigh. I am hoping this thing gets better but I keep feeling a tugging annoying pain on the side of my L face where the dissection was. Not fun.

My ds is going for his echo in 2 weeks. The earliest appt. they had.

Dh is off to califor. again. I have to check the dates on that.

Finally made the hotel reservations. We are staying at the Swan March 18-20 and then at the Beach Club from March 20-23. Ds 3 said he wants to swim in storm a long bay. I guess this is like a little pre college graduation celebration for the 2 ds. I hope this is right. I am having dh call the airline again. We cashed in all his miles and got vouchers to say both hotels were free. I dont think that is right. I told dh I calculated we should owe around $500 to disney. Well we have a while to straighten it out before we leave. So right now the rooms are free unless they tell us otherwise. The lady on the phone last night from the airline desk said we dont owe anything. Highly doubt that.

Now to make the adrs.

Micayla - we need a mommy and little guy update!

Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts.

Check in everyone when you can

 

[angwill]

so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms. any info from your own experience's would be greatly appreciated. very worried right now.

Waiting on the ultrasound should not make you worry. I had to wait a couple months and over a month for surgery to remove my thyroid. It is more mentally dangerous than physically having to wait. IMO I too had the cough and it was because I had a big nodule that was pressing on my throat. Less than a week now. You will be fine. Try and find pleasant things to occupy yourself with.

 

[Christine]

I have been on 350mcg since my surgery and my thyroid tests are coming up perfect. The only think I hate is my hair has fallen out drastically and the texture even changed at the higher dose. I have been on over 200mcg of levothyroixine for almost 20 years. My calcium levels and vitamin D have been low forever so I have taken supplements but I have never had a doctor tell me about osteoperosis hapening on higher doses. I will have to bring it up next week when I see my doctor. I do hope your tests all come back good. It has to be exhausting wondering and waiting.

angwill,

I think the osteoporosis only occurs if you are too suppressed and isn't really related to dosage, per se. So if you are taking 350 mcg but your numbers are perfect, then it should not be a problem. I think it's only a problem with long-term extreme suppression. Even then, I'm not sure that they really proven that but it could be a factor (hyperthyroidism) in leaching calcium from the bones.

Keeping your Vitamin D levels up and taking in calcium would be a good idea if you are very suppressed.

 

[mickeymouse108]

Waiting on the ultrasound should not make you worry. I had to wait a couple months and over a month for surgery to remove my thyroid. It is more mentally dangerous than physically having to wait. IMO I too had the cough and it was because I had a big nodule that was pressing on my throat. Less than a week now. You will be fine. Try and find pleasant things to occupy yourself with.

thanks its really assuring to hear from people who have been thru this.

 

[angwill]

angwill,

I think the osteoporosis only occurs if you are too suppressed and isn't really related to dosage, per se. So if you are taking 350 mcg but your numbers are perfect, then it should not be a problem. I think it's only a problem with long-term extreme suppression. Even then, I'm not sure that they really proven that but it could be a factor (hyperthyroidism) in leaching calcium from the bones.

Keeping your Vitamin D levels up and taking in calcium would be a good idea if you are very suppressed.

Thanks Christine. My doctor keeps checking all my TSH levels as well as the calcium, vitamin D, and anything else that comes up. He said they took out one parathyroid and that regulates the vitamin D which was very low so he had me add that to the calcium I have been taking for years. I have always taken high doses of levothyroxine to keep from becoming hypo it is what works for my body. I will just make sure my doctor keeps checkign my calcium and vitamin D levels.

 

[mickeymouse108]

had my ultrasound today now just waiting for my doctor to get results and call me.