The THYROID Thread

[luvmarypoppins]

Well Thyrogen #1 is done. I have a slight headache now. And the regular ringing in my ear seems to be very annoying right now.

I told the nurse we will see if I get a headache or nausea, she said, oh are you one of those "sensitive" people. I said well if I get those symptoms again, then yes, I guess I must be!

 

[dischick4778]

mrsklamc - thank you for sharing the recipe, this looks wonderful! It's only day 3 of the diet and I'm so done with it. There's only so much chicken and lettuce I can eat. So this pasta looks like a yummy option.

luvmarypoppins - I'm still kind of new to this, what is the thyrogen shot for again? Is that to prepare you for the scan? If so I think that's what I will have in a couple of weeks. I have four hospital visits scheduled for the week of June 27th and they told me I'd be getting shots since I'm still on my meds. Does it really make you feel horrible? I'm not looking forward to it.

Disney trip was wonderful! It was so emotional for me since the last time we were planning to go I was told I had cancer weeks before we were set to leave. I enjoyed every minute and my family did as well.

 

[luvmarypoppins]

dischick - so glad you had such a wonderful time. I cried when dh and I got back there after my surgery and it took a year. I had a pet scan that dec. and that is when dh and ds who was in hs went with us then. I knew things were not good but boy was I dumb back then. I didnt even know what a pet scan was actually for. Hmm, guess I didnt know they already knew I had cancer and were just seeing how far it had spread etc.

So I guess your visits are going to be thyrogen 1 and pregnancy blood test
thyrogen 2
rai tracer. I think my tracer dose was 4.17
scan

I know all hosps./drs. do things differently. When I got the tracer I had to not sleep with dh for 2 days, (Yeah he was gone at a conference) no being by kids, but at least I didnt have the food prep precautions and I had to double flush. Worst was the mom because they said they didnt want anything left in my colon. Also the drinking to flush it out.

Micayla, did you have to do that too?

I think this nurse said the other nurse would call me with the results, maybe by next wed. after my blood test, I hope so, as dh is leaving wed night on another trip.

Wishing you all the best

 

[luvmarypoppins]

Well thryrogen #2 is done. The injection site does not hurt at all. I had a different nurse this time, maybe that helped? I still have the ringing in my ear, louder than my normal.

I read on the thyca website that another girl was also having ringing her ear. The headache is very slight so that is good, Or maybe I am having a headache because my refrigerator has probably finally died for good right now:

The nurse told me to call on Friday for my results. Oh great, m dh will be in seattle or san francisco. I know the other nurse said wed. I didnt want to argue with her yest. but I thought that was just way too early for the results.

dischick - How goes the diet? Hang in there!

 

[mrsklamc]

Micayla, did you have to do that too?

Yes...Sorry, the DIS has not been sending me update notifications....& I missed that you asked about the diet. Yes, I will be dieting and taking thyrogen again in August, assuming the thyrogen is available.

Been a rough week - we have 2 ferrets and one of them went in for a minor procedure and ended up having a large cancerous mass. I feel so bad- just thought he was fat. The vet had told us he was overweight just in Feb. and to get him exercising more. He's been at the vet since his surgery Tuesday. He had a little ferret epidural, blood transfusions from the vet's two ferrets, and now he's on a little ferret IV! She talked about chemo depending on the results of the biopsy but I'm not sure I'm willing to put him through that. Can you imagine being hypo, not knowing when it would end, and not knowing why you were going through it?

Dischick - the thyrogen didn't make me really sick, just tired the days I got the shots.

 

[michelleiada]

Wow, this is an interesting thread that I never knew existed. I never thought to look on this board. I am a nurse and work in a Diabetes and Endocrine Center with two Endocrinologists and have for 8 years. We see tons of thyroid problems, including Hashimotos Disease, Graves, hyper and hypothyroidism, thyroid nodules, goiter, thyroid cancer, thyroiditis.... I wish you all well with your health.

 

[dischick4778]

Found my paperwork for my upcoming scan. It says Day 1 blood work including pregnancy test and thyrogen injection. Day 2 2nd thyrogen injection 0.9mg. Day 3 blood work and 4.0 mCi of I-131. Day 5 blood work and 45 minute scan, results on the spot.

They haven't said I shouldn't be near my husband or son but I guess they will tell me when I get there. I had a feeling I shouldn't be picking up my son and getting too close to him, but I never thought about not sleeping in the same bed with dh.

The diet is awful this time around. I think it's because last time I felt so horrible after the surgery that the diet just didn't matter. But now that I am feeling well I want to eat normally. I have lost 4 lbs in the 4 days I've been on it. I don't like eating like this and so I end up not eating much at all. I am craving dairy and breads. The worst part is my low calcium is really bothering me. I usually eat a pretty high calcium diet including cheeses, milks, yogurts, etc. But since I cannot eat any of those things right now I am having a hard time finding enough foods high in calcium to help my numbness. Ugh, can't wait until July.

 

[luvmarypoppins]

dischick - does the hosp. where you had your surgery have a cancer resource center etc. Maybe you could request some info from the dietician in conjunction with your endo etc. I am sure its hard for you but if you mix up colors on the plate I think it helps. Like a chicken, almond, strawberry salad etc.

The bread/crunchiness stuff I just used the unsalted matzoh or the air popped popcorn in the microwave.
Make it look colorful! Like maple glazed pork chop,sweet potatos and corn.
Maybe a kabob on the grill - chicken,peppers, pineapple with basmati rice
beef with zuchini (yellow and green) with some no yolk noodles. A stuffed pepper etc.

If I got sick of a cold salad for lunch then do something hot every few days. At the end I just did peanut butter on vegetables one day for lunch and the home made soup with the noodles and steamfresh vegs. I was getting lazy.

And I think it helps if you dont have to do the cooking for your dh and ds. I also found it better not to eat with them in the room. I was just too much on me. The 2nd week towards the end I said just go get your own food and eat it yourself in the other room. It helped me a lot.

Well I had the blood test today, so now its wait and call the rad. onc. nurse on Friday. My dh wont be here and 2 of the ds will be away too on friday, so I am either gonna be celebrating or crying a little. I guess dh is going to have to listen to me long distance.

 

[mrsklamc]

My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff.

I FREAKING HATE CANCER.

 

[luvmarypoppins]

My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff.

I FREAKING HATE CANCER.

Micayla, I am so sorry to hear about your furbaby. Its ok to cry beause I am sure he/she was so much a part of your life. I cried when our guinea pig died. I would have hated to see my pet suffer. I agree with you totally, cancer sucks!

 

[dischick4778]

My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff.

I FREAKING HATE CANCER.

So sorry to hear this. It's not easy to lose a pet, they are part of the family too.

 

[dischick4778]

dischick - does the hosp. where you had your surgery have a cancer resource center etc. Maybe you could request some info from the dietician in conjunction with your endo etc. I am sure its hard for you but if you mix up colors on the plate I think it helps. Like a chicken, almond, strawberry salad etc.

The bread/crunchiness stuff I just used the unsalted matzoh or the air popped popcorn in the microwave.
Make it look colorful! Like maple glazed pork chop,sweet potatos and corn.
Maybe a kabob on the grill - chicken,peppers, pineapple with basmati rice
beef with zuchini (yellow and green) with some no yolk noodles. A stuffed pepper etc.

If I got sick of a cold salad for lunch then do something hot every few days. At the end I just did peanut butter on vegetables one day for lunch and the home made soup with the noodles and steamfresh vegs. I was getting lazy.

And I think it helps if you dont have to do the cooking for your dh and ds. I also found it better not to eat with them in the room. I was just too much on me. The 2nd week towards the end I said just go get your own food and eat it yourself in the other room. It helped me a lot.

Well I had the blood test today, so now its wait and call the rad. onc. nurse on Friday. My dh wont be here and 2 of the ds will be away too on friday, so I am either gonna be celebrating or crying a little. I guess dh is going to have to listen to me long distance.

Thanks so much for the great ideas. I am trying to mix it up a bit. I had an unsalted peanut butter and fruit preserve sandwich on unsalted matzoh yesterday. I don't think I've ever eaten anything quite so dry but it wasn't that bad. I am doing whatever I can to make sure when I get tested on Monday that I am as low iodine as possible. I cannot do this an extra week!

Thanks for the support. It's hard because my dh keeps telling me "well you have to do it, so just don't think about what you're eating". It's so easy for someone not going through it to give advice. Only someone who has been through it truly understands. Thanks group!

 

[luvmarypoppins]

Well the onc. nurse called a day early today and told me...GREAT NEWS, Praise God the tests came back really good she said, less than 0.2 I think she said?

So now in a few weeks, its more blood tests, a sono and seeing the endo. I am wondering if she will ever lower my synthroid. Its always at 200. In aug. or sept. I want to go see a cardiologist to check things out because I heard such a high dose can affect your heart etc. She was the one who gave the cardiologist name to me anyway.

dischick - is this week end the wedding? How goes the diet. Thinking of you

Micayla - you should probably hit the berry farm again and freeze some like you did before!!

Hope everyone is doing well

 

[dischick4778]

luvmarypoppins - Great news! Glad to hear it!! I wonder about lowering the synthroid dose at some point as well, I'm 225. But I guess they are just being cautious.

The diet is not getting easier but I'm dealing with it. I keep getting leg cramps in the middle of the night and I think it's the lack of calcium. Can't wait to drink some milk! The wedding is this weekend and the chef has called me several times to confirm. I am interested to see how the food will taste prepared by a professional chef. It will definitely be better than what I make!

 

[mrsklamc]

Luvmarypoppins- I feel so awkward always calling you that, what's your first name, please? Or an initial?

I came here to see if you've heard back- I see you did last night and I didn't get an email. SO glad to hear you got a good result.

Strawberries were early here this year so we have them fixed up and frozen already.

Endo's office was going to shoot for ordering the thyrogen at the end of June, haven't heard anything though-- and doing better with the loss of furbaby. Will hurt for a long time I imagine.

 

[mrsklamc]

Front page article on CNN.com about a civil rights leader with thyroid cancer:

http://www.cnn.com/2011/HEALTH/06/25/behind.mom.dark.glasses.due/index.html?hpt=hp_c1

More awareness is always a good thing!

 

[mrsklamc]

I also ran across an article yesterday where a woman said her cat was having trouble with its thyroid and that made it urinate more frequently. Now, I've had a lot of trouble from my thyroid but that one is new on me!

 

[luvmarypoppins]

micayla -you can call me lmp or if you really want to call me something else, I guess Maryann is ok too. The breast cancer girls say either one depending. You can look at me on page 200 of that thread. pn the cb. Oh, I am the one with the neck dissection

I was reading that article. That poor lady has been through alot for sure. She is really a survivor and fighter in more ways than one. I felt bad about her having more rai and the spread etc. It reminded me when I was in the hosp. with the rai overnight. They quickly went in and out the room , scanned stuff with the gieger counter, wore special booties, disposable stethescope etc. I felt so bad when I read her family had to hold her hand with special gloves etc.

Well I am scheduling my sono and latest blood work for the next week or so. I think I go to the endo around July 11 and she likes everything to be done 2 weeks before the visit etc.

Dischick - anxious to hear how the wedding went and just curious if they told you not to be by pregnant people etc.Wishing you all the best tomm and praying you will get a 0 too and a clean scan.

Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.

Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc

Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.

 

[mrsklamc]

LMP- cause they are PRACTICING medicine...

Am I missing any reason this wouldn't work for the diet?:

http://nuttykitchen.com/2010/06/01/coconut-whipped-cream/

 

[luvmarypoppins]

Well I looked at that. It says dairy free. Does it contain carragean (sp?) because I know that is not allowed. It does look yummy and a good substitute if it meets all the requirements. Can you ask thyca. directly about it?

All I know is I am so glad I got to call that dietician when I was doing the diet lst time. I drove her nuts for sure! And then I found out my ins. would not cover it. So I sure got my $112.00 worth for sure. I got the initial one on one consultation then all the phone calls and my rad. onc. own personalized diet no no list and then they told me to go look at the thy ca cookbook too and that was frustrating looking at 2 lists because I couldnt have the cocoa powder that was listed in Christines wacky cake etc.

Again like in my previous post, I think hospitals should make a dietician available to you to go over this stuff regardless of whether your ins. pays or not. It should just be a level of acceptable care. Crap, I am sure they go over low salt diets with heart attack people, no sugar stuff for diabetics.

I think they shoud train all the dieticians on the lid. They knew how to cook it at my hosp because the dietician told me they had to teach them etc. In the hosp. I got oatmeal or fresh fruit, lunch was a salad and that was pushing it with some deli roast beef. I even asked the rad. onc, is this acceptable because its not on your list etc. I was wondering about the salt. Oh and they gave me no oil etc. For the dinner I had mashed potatoes, small chicken thigh and carrots and frresh fruit. So they knew what they were doing. Also like dischick said about the chef. I actually mentioned to the rad. onc. that it would be nice if they could cook us something at the hosp and we would pay for it etc. I asked even if there was a chef in the area who did this etc . because they told me there was a certain bakery by the hosp. who knew about the diet and made certain things etc.

There is a restraunt a few towns away owned by one of the ds former teachers. His son cooks and he was on the show "Chopped". I am sure he might be interested in something like this. I am not thinking of the money aspect of it, more of the way in being a mission to people. He is really religious.

I think we need all the help we can get for sure.