The THYROID Thread

[Aburns8]

My biopsy came back benign . The nurse said the Dr. just wants me to come back in a year for another ultrasound.

I'll still be following you guys but thanks for answering all my questions, I appreciate it.

That is great news!

 

[mrsklamc]

My biopsy came back benign . The nurse said the Dr. just wants me to come back in a year for another ultrasound.

I'll still be following you guys but thanks for answering all my questions, I appreciate it.

Such good news!

 

[mrsklamc]

We usualy go twice a year. Dh has a reallly good job.
We are going May 20-28th. 3 days at the Grand Floridian and then 3 days at the Beach Club for FREE!! Cashing in dh frequent flier miles. Guess going to China once a month is very good, even though I miss him so much, then 2 more days at the Yacht Club with an AP discount. Also meeting up with 2 gals and maybe more from the breast cancer thread on the cb.

I guess after I almost died and dh saw me in the coma, we both see how every day of life is so precious. He treats me like the cancer Dh also gets 5 weeks of vacation a year which he never uses. Also with all the 3 ds at home, we neeed a vacation away from them for sure. I am hinting for the food and wine which we have nevver been too. No wine though for us. Figure that could be free too at the Swan.

DH and I both work at non-profits...they are great to us in many ways but unfortunately the $ is just not stellar. It's ok though cause DH doesn't really care for Disney. Poor guy,being married to me!

 

[luvmarypoppins]

My biopsy came back benign . The nurse said the Dr. just wants me to come back in a year for another ultrasound.

I'll still be following you guys but thanks for answering all my questions, I appreciate it.

Great news. So glad it worked out well for you.

 

[luvmarypoppins]

So I am back from the oncologist. She pulled up my path report because the ent didnt send her the note. I saw him dictate it into his machine, so it must have got lost along the way. Oh well, that is why I like to do everything at the hosp. since they can just pull it all up etc.

I am going to have the pregnancy blood test lst on June 17th. They said their age limit is 60, then the lst thyrogen test and then the 18th the next thyrogen and she said just go to the regular lab to get the lblood test the next week. I have to look at what day.

She said I dont have to see her for another year since the endo orders the bi yearly blood work and sonograms, yeah!!

And in the cancer sucks dept, (taken from the breast cancer girls), in the room next to me is a boy about 14 who has lost most of his R arm. I am asssuming due to bone cancer. His whole family was there and being very supportive. Of course. I almost cried. My heart went out to them.

So here is the Thyrogen information:

The original thyrogen plant is located in Boston. The new one is in the midwest, I think she said Omaha??. Well the Europeans decided they didnt want their thyrogen from Boston, but wanted it from the new midwest plant, so there is/was a 3 month back log. My oncologist is the 5TH LARGEST provider of thyrogen in the whole US!! She says the stafff is very proactive about havng a good supply and then she herself has an "in" with the supplier, so there s never a need to worry where I go. And there you have the insider and latest thyrogen news.

 

[mrsklamc]

Went to the endo Tuesday. She said everything looked good, & that we would schedule a scan for August. She did say there was a thyrogen shortage and that they were supposed to be back in stock in July, so I am praying for that. I don't know what I would do if August came and it weren't available. I don't want to wait.

 

[luvmarypoppins]

Went to the endo Tuesday. She said everything looked good, & that we would schedule a scan for August. She did say there was a thyrogen shortage and that they were supposed to be back in stock in July, so I am praying for that. I don't know what I would do if August came and it weren't available. I don't want to wait.

glad to hear that things are going well and look on schedule for you. I agree iwth the not waiting part. I dont know where you get the thyrogen from endo, hosp etc. I would definetely ask about their supply and their supplier etc. I would think that if the supply is limited they would give it to patients getting rai lst. So you arent doing the diet? or are you? I saw some good recipes for banana bread and some kind of muffins. The banana bread was also using egg whites and home made applesauce.

Oh and Christine, are you the one with the wacky cake recipe. You are FAMOUS! As I said before, no cocoa, chocolate etc sutff is allowed from my onc. on her diet sheet. She is so strict.

 

[Christine]

Oh and Christine, are you the one with the wacky cake recipe. You are FAMOUS! As I said before, no cocoa, chocolate etc sutff is allowed from my onc. on her diet sheet. She is so strict.

I used to make the Wacky Cake about 15 years ago because my son had an egg allergy. I guess it works for the Low Iodine Diet...

Glad to hear all is well with everyone.

I have to have an upper endoscopy next week. This is not my first time but that doesn't stop me from being a wreck about it. I have some SERIOUS White Coat Syndrome these days. I normally have great blood pressure but during my visit with the gastro it was at 130/80 and all we did was have a conversation. I'm such a freak!!!!

Anyway, back in March I started getting episodes of severe acid/burning in my stomach. I am already on Prilosec because of stomach troubles many, many years ago so I was "burning" through that. It's not hearburn because it's in my stomach. I was hoping she'd just give me more meds but, no, she wants to take a look. Back in 2007 I had an upper endoscopy just to have a check and they found gastritis and bleeding (and I wasn't having symptoms).

I am kind of scared about it. I hope there's nothing serious but I am letting my anxiety run away with me.

 

[CanadianPaco]

I just happened upon this thread. (DH lost his job 4 months ago and I guess I was drawn by the title of the thread - Coping and Compassion) But I had thyroid cancer almost five years ago but never saw this thread. I found my lump by accident - DH and I were at the movies - a Pirates of the Carribean one to be exact. It was super cold with the a/c so I was all curled up and had my hands by neck to keep warm and I found my lump. Ultrasound revealed one node - 1.5cm. Blood work was completely normal. But the fine needle biospy revealled Pap.Thyca. I had my entire tyhroid removed (they found a 4mm and a 5mm node on the other lobe, thank goodness it was entriely removed) A few months later I had my RAI and have been going for annual checkups since.
I have read through much of this thread but I am glad to have found it.

 

[luvmarypoppins]

welcome CanadianPaco - sorry to hear about your dh job. I pray God will open up something new for him soon. Wishing him all the best. Its good to hear you are doing well with your check ups. Can I ask what your initial RAI dose was?

Well I am back from the ENT. Wow, I cant believe all the instruments and stuff they have at that place. This was the chairman of the whole place who I saw this time. A litle grumpy. Only met him once before. Saw my other 2 surgeons on the way in. Had the hearing test. That was funny and went well they said. The new dr. thinks my dizziness is getting better. Could be caused by a virus, hmm, infected lymph node? Saw the other ent surgeons note that I was positive for the vertigo on the r side. He showed one exercise I can do to try to move the crystals in my ear. He said the others I cant do because of my neck dissection. So now its ust watch and see. I dont have to come back. He kept moving my headneck around and I had to put on these blurry goggles. He told me good luck with my thyrogen testing next month. He wanted to know why I saw a thoracic surgeon. I told him originally they thought the mass was in my chest and not my neck. Wow, he must have looked all the way in the back of my chart..the very beginning. So its off to disney on friday for dh and I. I need a break from all this medical stuff for sure.

Hope everyone is doing well

 

[mrsklamc]

I'm doing well, but my 3 year old nephew fell today and has a minor skull fracture and a bad concussion. Prayers would be appreciated, from those that pray!

 

[luvmarypoppins]

Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?

 

[CanadianPaco]

welcome CanadianPaco - sorry to hear about your dh job. I pray God will open up something new for him soon. Wishing him all the best. Its good to hear you are doing well with your check ups. Can I ask what your initial RAI dose was?

Hi Again
My RAI was 100mcg. It'll be 5 years now. I have 2 nodes that they are following. I try not to worry - just live in the moment. Cancer and unemployment teaches you that!

 

[itsdisneytime]

Okay -- I have another question for you all ...

As some of you know, I had Papillary Thyca - and had 2 of my parathyroid glands stollen during my surgery which left me not so luckily as a hypo calcimia, hypo parathyroid mess ... numbness (check) tingling (check) irritability (check) tired (check) IBS (check) you name it and ive been dealing with all sorts of *** new normal *** as I call it for me ... I deal with all these things on a daily basis and dont worry about them anymore so much but .....

recently as of 1 month now Ive been dealing with the WORST swollen feet and calves ever.. I remember last summer this same thing happened but it didn't seem to hurt as much. I am 18 months post surgery and so last summer would have been my first thyroid free summer and besides being hot as heck I dont remember the feet bothering me this much.

I went to my doctor 2 days ago and they told me this was because my thyroid level was so off -- they upped the synthroid and said its normal ... although they threw in a few words about being concerned with adema (sp?) and cellulosis or cellulitis? I swear, Im pissed at myself because I let them get away with talking in circles and talking about me and not to me and then I walk away feeling like Im not really ever going to get any better. My feet are cracking open from being dry and swollen and in very bad shape ... it almost seems like my skin is turning into something leathery and brown ** very different then what Ive ever known it to be ** and despite the fact that I am soaking my feet, keeping them up when I can and also putting bag balm on them at night with socks on to help keep moisture in ... there seems to be nothing that is making them soft and healthy again?

Anyone dealt with this? they will NOT give me lasix or any water pill either!

 

[luvmarypoppins]

Shannon - I havent had any of those problems, but I know dischick had her parathyroids damaged too during surgery or removed because of the cancer?

I know they had to up her calcitrol but I think it was because of the numbness and tingling, I dont remember her mentioning swelling.

Were you seen by a regular dr. for your symptoms or an endocronologist. I always go to my endo for all the thyroid stuff as I think my gp dr. is clueless about this stuff.

What was your symthroid dose that they uped it from and to? I know it does take a while for your body to adjust to that. Are they doing any blood tests etc?

Wishing you all the best.

 

[itsdisneytime]

Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.
I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now. I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..

 

[Christine]

Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.
I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now. I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..

If your TSH is/was 67 and this TSH has been going on for sometime, there is no doubt in my mind that this could be the cause of your lower extremity swelling.

I was only VERY hypo for 6 weeks. I read up on hypo at that time and how it causes swelling at the wrists and other joints. I had a pretty bad case of carpal tunnel by the end of the 6 weeks but fortunately it was reversed when my medication was resumed.

If you are at 67 on 200 mcg of Synthroid I'm not confident that a one-dose-up adjustment is going to cure you of this problem; however, it is the right way to go about increasing meds--you don't want to do too much too fast.

You really need to get your endo to aggressively manage this TSH issue. You should NOT be having to live like this.

 

[mrsklamc]

Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?

Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"

But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!

 

[DisMomme]

Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"

But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!

Saying a prayer for your Nephew.

Question>>>> How often do you all get your levels checked? I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done. I have another appt (with an ultrasound) in 6 more months. Should I go get the blood work done now after-the-fact or wait until my next appt time?

 

[Christine]

Question>>>> How often do you all get your levels checked? I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done. I have another appt (with an ultrasound) in 6 more months. Should I go get the blood work done now after-the-fact or wait until my next appt time?

When I was early on in my journey, I would have my TSH checked quarterly, and my thyroglobulin checked every 6 months. After my TSH appeared to be stable, I got it checked every 6 months. Only recently (this year), I have moved to a one year cycle. But I am 16 years after diagnosis. My endo only wants to see me once a year and we will do TSH, thyroglobulin, and ultrasound. Of course, if i feel "off" I am told to come in.