The THYROID Thread

[Christine]

Christine how is it going?

Well I got thyrogen shot #2 today and havent felt nauseous at all PTL!! Just tired. Hmm, now its a semi foggy headache and ringing in my ear.

I had the nurse weigh me and I have lost 10 lbs. in 2 weeks. Last time I lost 20 lbs in the 2 weeks.

Tomm. they said they will go over the radiation precautions with me when I get the pill. The one nurse already said 3 feet away, double flush the toilet, glad my dh is at a conference. I will just have to stay away from the ds etc.

I am like Pavlovs dogs salivating over food commercials on tv. Worse I sat with my ds in the wendys drive in line. I told him he could get something for taking me etc.

That's great--you are in the HOME stretch. I wish I wasn't so freaked out about the Thyrogen and the weird reaction I had.

I've been off work for a few days getting my DD moved out of her dorm and then I teleworked yesterday doing some online training. Easy stuff. Today, I got to work and had to do my *real* work. OMG, something is wrong with me. I think I am already feeling the effects of no meds after day 6. Not good. My job is VERY financial and requires a lot of concentration. While, physically, I feel decent, mentally, I've been struggling all day. I really don't think I can make it and do a decent job at work.

Soooo...I've put in a call to my endo to explain what's going on and that it's not going to be a good time for me to do this. I'm either going to have my Tg test done today with only 6 days off meds or I may just throw it all in and try it sometime later. At any rate, I haven't heard back from him and it will be his decision.

The last time I went hypo, I was in my mid-30s. I swear I didn't notice anything until at least 2 weeks into it. I guess getting older makes it harder. I feel like I cannot concentrate on my job or even think. It's like my mind is really slow.

 

[luvmarypoppins]

So Christine what happened? Just wondering why you are not liking Thyrogen?

Well yest. I got the radiation dose. They still told me stuff like flush the toilet twice, dont let dh sleep with me (glad he is at a conference until tonight) drink tons of water among other things as they dont want the radiation in me or my colon etc. they said. Also the 3 foot rule etc. I am glad I have alot of faith because this is a long weary journey right now.

I am just getting so sick and tired of this. I am glad tomm. is the last day. and tues. I am going to disney, it will be a great anniv. and b day for me and oh did I mention I made about 10 adrs for 5 days. I think I am in Piglet mode and will turn into Pooh by the time we get out of there, oh I am dreaming of places like Kona, Coral Reef, Narcoosees etc.

 

[Christine]

So Christine what happened? Just wondering why you are not liking Thyrogen?

Well, the doctor called back yesterday and I went through it with him. He said that 6 days off meds was just too early for a test. So he wants me to take Cytomel (short acting T3) for 6 days, and then be off all meds another 6 days. Apparently the 6 days on Cytomel will make me feel normal while the T4 leaves my body and then I'll probably feel like poop again for 4 of the last 6 days.

I couldn't pick up the perscription yesterday so I'm having another rough day. On top of it all, I am feeling panicky all the time. This withdrawal is really messing with me.

As for the Thyrogen, on my third round of it back in 2006, I had a weird, freaky reaction to it that last for 3 hours in the middle of the night. I got REAL hot, real red, and my heart rate was about 160 for several hours. Don't want to have that (or worse) happen again, which is why I'm doing it this way.

 

[luvmarypoppins]

luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.

Best of luck tomm. My scan is for 12:30 and I doubt that will happen. Probably more like after 1. Hmm, I am thinking one more crappy meal, one banana in the morning, throw in the water to get rid of the radiation and other stuff, hmm, hmm. I will be in disney on tues. sitting on my Polynesian balcony. I have about 10 adrs for 9 days, my dh and I are going to be eating well for my b day and our anniv. So the 10 lbs. will probably be back soon!!

 

[Christine]

Hoping everyone has a beautifully clean scan tomorrow.

 

[es45]

Well, the doctor called back yesterday and I went through it with him. He said that 6 days off meds was just too early for a test. So he wants me to take Cytomel (short acting T3) for 6 days, and then be off all meds another 6 days. Apparently the 6 days on Cytomel will make me feel normal while the T4 leaves my body and then I'll probably feel like poop again for 4 of the last 6 days.

I couldn't pick up the perscription yesterday so I'm having another rough day. On top of it all, I am feeling panicky all the time. This withdrawal is really messing with me.

Sorry to read that you are having a rough time, Christine. I hope the Cytomel relieves your symptoms.

Best of luck tomm. My scan is for 12:30 and I doubt that will happen. Probably more like after 1. Hmm, I am thinking one more crappy meal, one banana in the morning, throw in the water to get rid of the radiation and other stuff, hmm, hmm. I will be in disney on tues. sitting on my Polynesian balcony. I have about 10 adrs for 9 days, my dh and I are going to be eating well for my b day and our anniv. So the 10 lbs. will probably be back soon!!

How did it go? Had mine with a very talkative technician. He said everything looked great. I get the official results Monday but his comments put me at ease. I hope you get great news too.

Enjoy the Poly. Be sure to have a Lapu Lapu on the beach for me while watching Wishes!

 

[luvmarypoppins]

Christine - hope you are getting the meds balanced out

Well I survived the scan. It was a nightmare and I was crying. My appt. was for 12:30. Of course dh gets me there late at 12:50. They said now I must wait till 2 pm. I was mad because I get the dresssing down from the scheduler and dh doesnt admit its all HIS fault. I just cry and dont speak to dh. They throw me a box of tissues.

That scan was torture. I guess its bad since I already had 3 back surgeries, plus add in the 2 mesh stomach implants and throw in the neck dissection and they expect you not to move the whole time. I tried my hardest.

I got the results right away..and christine what does this mean. The rad onc. says she likes to see it a 0.5 but mine was 1.0. She said it could be a salivary gland shadow and sometimes even people with a 2.0 are o.k. She just said she will see me in 6 months, so I am guessing she expects it to be ok. (the blood test). I wont know those results till friday so I have to call the onc. nurse from disney.

This whole day has just left me emotionally and physically drained. At least dh took me out to eat and I ate alot of food, yeah butter, cake, seafood, cheese, bread etc. My stomach hurt right away. I think it wasnt use to real food.

es45- hope you get a good number on monday too.

 

[es45]

That scan was torture. I guess its bad since I already had 3 back surgeries, plus add in the 2 mesh stomach implants and throw in the neck dissection and they expect you not to move the whole time. I tried my hardest.

This whole day has just left me emotionally and physically drained. At least dh took me out to eat and I ate alot of food, yeah butter, cake, seafood, cheese, bread etc. My stomach hurt right away. I think it wasnt use to real food.

Oh, your experience sounds just awful. I'm sorry that it was so uncomfortable. I felt awful after eating too. I didn't think I overdid it but perhaps it was what I chose to eat instead of how much.

I hope your trip eases your anxiety and keeps your focus off the scan until you call the nurse on Friday.

 

[Christine]

es45--congrats on your scan!! Sounds good.

luvmarypoppins--those scans can be difficult. I'm lucking that I don't have any real physical issues and the techs are good about putting pillows everywhere, but it is hard, especially if your back is hurting. I always find that I get very cold in there. And then, once out of nervousness, I had to pee midway through and they did have to stop the scan.

As for the numbers she gave you (0.5 and 1.0), I believe she was talking about uptake of the RAI. As you know, the RAI kind of gets uptaken by a lot of things (salivary glands, stomach, liver, etc being the most noticeable). They are used to seeing a certain percentage of uptake in those places. Non-thyroid cells uptake iodine but not to the degree that thyroid cells do and that is what they use on a scan to differentiate thyroid tissue from regular tissue (not necessarily cancer at all). So, it sounds like she saw more uptake in your salivary gland than she's used to seeing when she scans someone. Salivary glands are pretty notorious for uptaking a good amount and sometimes one will take up more than the other. Maybe when you scanned you just had a lot of saliva pooled in your salivary (parotid) gland and this caused it. Sometimes you can massage that out before a scan or sometimes that might ask you to massage it out and they could do another picture. Sounds like she's just going to settle with the results which is usual.

Have so much fun on your trip. I am insanely jealous and wish I were going!

As for my issues, I had to back out of my test prep. I couldn't get the Cytomel on Wednesday (pharmacy didn't have it ready). On Thursday I was really miserable. I'm just shocked that I was experiencing hypo symptoms on Day 7 that I wouldn't normally start getting till 3 weeks off meds. I was unabelievable miserable and in such brain fog it scared me. I got the prescription on my way home but knew I could never make those last 6 days off meds. So I took a Synthroid as soon as I got home, took one yesterday morning, and by yesterday afternoon was feeling 50% better.

And yes, I hate myself.

 

[luvmarypoppins]

Oh, your experience sounds just awful. I'm sorry that it was so uncomfortable. I felt awful after eating too. I didn't think I overdid it but perhaps it was what I chose to eat instead of how much.

I hope your trip eases your anxiety and keeps your focus off the scan until you call the nurse on Friday.

I am just wondering if your digestive system is o.k. It seems that no matter what I eat I am running to the bathroom a little while after. I dont know if its from the radiation or from getting my body back on the "bad food" again etc. I have such a sensitive stomach anyway. I am just wondering how long is this going to last?

Oh and Micayla, here is my budget lid tip for you too..hmm what do you do with all the leftover vegetables you dont want to look at again for a long time? Well you say thank god theres a pot luck at church tomm. and you make a big old pasta salad with all the vegetables!! Hmm, happy vegetables everyone and not to outdo myself I made sausage and peppers also using all the peppers I didnt eat too.

 

[es45]

I am just wondering if your digestive system is o.k. It seems that no matter what I eat I am running to the bathroom a little while after. I dont know if its from the radiation or from getting my body back on the "bad food" again etc. I have such a sensitive stomach anyway. I am just wondering how long is this going to last?

You may be right about our digestion being off a bit. I'm still experiencing the same thing. It must be the iodine.

 

[luvmarypoppins]

Well my digestive issues have resolved themselves. You are right, it must be the iodine.

And I was in wal mart doinng some last minute shopipng for the trip and I managed to set the detectors off. I showed the lady my receipt and I told her I was radioactive. I also have a paper from the hosoital. They told me if the detectors are really sensitive I would eet them off. The hospital paper says until august?? The lady also told me she is having radiation for cancer too now.

It should be interesting at the airport tues. The one time I had a pet scan I set them off too.

 

[Christine]

Well my digestive issues have resolved themselves. You are right, it must be the iodine.

And I was in wal mart doinng some last minute shopipng for the trip and I managed to set the detectors off. I showed the lady my receipt and I told her I was radioactive. I also have a paper from the hosoital. They told me if the detectors are really sensitive I would eet them off. The hospital paper says until august?? The lady also told me she is having radiation for cancer too now.

It should be interesting at the airport tues. The one time I had a pet scan I set them off too.

My coworker just had a nuclear stress test and set the sensors off at the Pentagon while he was in his car!! I also work for DoD but our building doesn't have nuclear sensors. So apparently nukes are okay in our building but God forbid you bring a cell phone in with a camera on it!

 

[mrsklamc]

luvmarypoppins- I am sorry your scan was so rough. Enjoy the Poly, it is #2 on my list of dream resorts! I have not stayed on site so far. Thanks for the budget tip.

Christine- Don't hate yourself. Although I suppose it's annoying because you have to start over? How often do you scan now?

Are there any questions I should be asking about my blood tests? They just said that the thyrogobulin was less than one and the TSH was .1 and that both of those are good.

 

[es45]

Enjoy the Poly, it is #2 on my list of dream resorts! I have not stayed on site so far. Thanks for the budget tip.

OT, but what is your #1 dream resort? Poly is my #1.

 

[mrsklamc]

OT, but what is your #1 dream resort? Poly is my #1.

AKL Savannah view.

 

[es45]

AKL Savannah view.

Excellent choice. That is my #2!

 

[Christine]

Christine- Don't hate yourself. Although I suppose it's annoying because you have to start over? How often do you scan now?

Are there any questions I should be asking about my blood tests? They just said that the thyrogobulin was less than one and the TSH was .1 and that both of those are good.

Self-loathing comes easily...

I supposedly don't have to scan anymore...period. I was just going to have a Tg test done that was stimulated (either by Thyrogen or having my own TSH rise).

As for your blood tests, yes a Tg of less than one is good. "Undetectable" is preferable but you've still got time to get there. TSH seems nicely suppressed. Mine is at 0.3 to 0.5. My doctor would like it lower. They like 0.05 for some reason.

 

[WDWBarb]

I haven't had the opportunity to read this entire thread yet but I hope you don't mind if I join you. I'm not suffering from thyroid issues myself (well, I should say, none that I am yet aware of) but my DD (who will be 16 in 2 days) has just been diagnosed with Hasimoto's. She's been sick and suffering for almost 2 years now and has been tossed between doctors. We've seen 5 so far and has spent most of her time with a neurologist. I finally decided to take her to see my GYN, the man who delivered her into this world, to see if maybe she was having hormonal issues. He was the first to tell me her thyroid was enlarged. That made me decide to take her to her first pediatrician and he had her diagnosis within minutes (and confirmed within days from the bloodwork). She's just been on her medication for 4 days now but feels a bit better. She had headaches, extreme fatigue, eye problems, dizziness, swelling in her fingers and nausea (just to name a few).

This whole thing is still so new to us. I'm reading as much as I can about it and it *seems* manageable. But I am still so confused about why she has it, where it came from and what else I can do for her. I know some of it is just me needing to absorb it all.

She's actually got a good attitude about it because she finally knows what she's up against and what will make her feel better (taking her meds). But I've never been a teenager with a disease like Hashimoto's so I feel so... unable to relate and say the right things. The most I had to worry about at 16 was getting my license and if I was going to be invited to prom.

I'm looking forward to reading this entire thread..

 

[luvmarypoppins]

WDWBarb = Sorry to hear that your dd has to deal with this. But glad she finally got the proper dx and that the meds will help. Does your local hosp. offer any type of support group that she might want to join etc? Wishing her all the best.

es45 - did you get the final scan and blood test results?

Christine - I hope you are feeling better and back to normal.

Well when we were in disney I called the rad. onc. nurse. The night before of course I was an emotional wreck, did alot of crying and praying for sure. Also the day I called was my b day and anniversary too. We got the news that my blood test was...NEGATIVE!!! Praise God!!! So my next regular blood test is in a couple of weeks. Oh and let me just say that dh and I pigged, yup, absolutely pigged out at disney world. Burned up our whole $750 gift card on food. Hmm, amazing what an LID can do to you I will be writing a little dining review on the boards soon.