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Old 11-08-2009, 05:57 AM   #451
Christine
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They have not given me a list of things I can eat. I have found a local place that grinds peanut butter straight from nuts and I have some strawberry jam I made myself over the summer, so if I make some bread that's a start.

Endo said he would leave dosing to the nuclear medicine guy but he guessed 120-125 micro curies.

I'm sort of frustrated- the surgeon wrote a letter to the endo saying she thought my Radioactive Iodine should be moved up because I'm healing quickly and well, and in her opinion this is growing fast enough he should get it taken care of. He thinks that there's no way it's growing fast enough that it matters. I'm a little nervous that since he's waiting the dosage won't be high enough and I'll have to do this again in a year and THEN wait another year to try and conceive. But I don't think other endos around here are even accepting other patients so I'm kinda stuck.
I will tell you that from my own personal experience, surgeons don't really know the nature of thyroid cancer or how it behaves. They do not study it like the endos do. They go in and remove it...period. I'm not sure how the surgeon would be able to determine that your thyroid cancer is "fast growing" unless your pathology report has an indicator in it that states it is aggressive. Your endo would be the absolute best judge of the nature of your type of cancer and if it warrants immediate treatment. Most types do not and they have been growing in your neck over a period of 10 years or more. In *most* cases thyroid cancer is a very slow grower. Thirty or more years ago, people didn't even follow up with RAI and, honestly, not sure if they've even had worse outcomes.

The way it was explained to me is that surgery is mostly the cure and RAI is the "icing on the cake."

As for food--what types of things are you looking for to eat? Mainly snacks or main meals? I remember one of the tips I got for a sweet tooth was to take a banana and put it in the oven (about 350 degrees, keep the peel on) until it was totally black and hot. Take it out and unpeel it, put it on a plate, and then drizzle it with pure maple syrup. The banana gets carmelized so it's very sweet and rich. It's sort of like a bananas foster! But not quite...
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Old 11-18-2009, 05:48 PM   #452
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Christine - I went to the rad. onc. today and asked her about this. She confuses me normally. But I think she understood it and said if its just for a scan she does thyrogen. I think that is all she uses most of the time. I didnt want to say much more to her. I am going to bring that statement and ask the endo when I go next month. She explains everything better to me anyway and she is part of my "team" as they call it. Anyway my rad. onc. is doing some research to write a paper. I dont know if I will be in it or not, she is just doing statistics on paper. Even my dh who works with radiation is confused about what she is trying to prove. Its something about scanning, using thyrogen and radiation precautions after the scan. Well if she proves what she wants maybe I can benefit from it if I am not part of it etc. I am having the scan sometime in June probably. Its 14 months after the rai but she doesnt seem too concerned. She said today I am doing fantastic. I am going to ask the endo if that is o.k. If she doesnt think so, I will call and inquire etc. I go for more blood work in dec. so when I come home from Disney I will see how things are. I was there last year and I didnt even know I had the cancer, but knew I was really sick. Maybe I should call my rad onc. Dr. Thyrogen!! Oh and she said she got a few more patients with rare variants. She lumps them together (columnar,tall cell, hurthle etc). Gee I wish I knew who my columnar cell partner this year is!! Maybe I should ask her to write a paper about that!!
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Old 11-21-2009, 04:19 PM   #453
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I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused. Any help would be appreciated!!!!
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Old 11-21-2009, 08:31 PM   #454
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Christine is the expert here. I know she'll pop in when she can. She is a wealth of info and usually answers all my ? too, I know from the com. board she is having some issues with her dd right now, so I hope she cn get those taken care of. Oh the joys of teens/young adults. I can relate to her with that one. I am still learning all this stuff. My endo told me she wants me to be hyper and that the tsh should be close to 0 and as undetectable as possible which mine is. I am having the blood draw in dec. again. I have never gained any weight and actually between the cancer which no one figured out I had I lost about 30 lbs. On the LID I lost another 20 and then I also had to have a bowel resection and there went another 12, so my weight has stayed the same since April. I take 200 synthroid, only the name brand. Can you share your favorite LID receipe. I am doing it again in June for the 1 year follow up scan. Hmm, I will probably drop another 20 again, after thyrogen shot #2 I felt pretty sick enough not to eat last time on day 13 or 14 anyway and then I will pig out after I survive that diet. Mine is a combo of the thyca and nih and my rad. onc. own stuff. Wishing you all the best.
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Old 11-22-2009, 06:28 AM   #455
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You are correct you want your TSH levels clos to zero, my endo keeps mine below.1, which technically is too low. But they do this *in case* there are any thyroid cells left, they don't want them stimulated and productive. Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid. If they are too low you'll take less, which is what she told you to do. I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper. Right not you are definitely closer to being hyper than hypo. Some of the symptoms are close. My endo always checks my hands to make sure there are no tremors and asks about heart palpitations, both signs of being hyper.

I've had problems losing weight since my thryoid cancer/removal too. My endo actually told me it shouldn't be related to my thyroid and if anything it should be slightly easier for me to lose weight since I'm slightly hyper. Whatever! It's the only thing the man has said I don't like so I let him slide on it but I don't believe it - I've heard about too many situations like mine to think it's a coincidence.

Hope that helps!
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Old 11-22-2009, 09:55 AM   #456
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Thank you luvmarypoppins and jennz! I guess I'm was hoping that my levels would help explain why I have gained so much weight over the past few months...no such luck for me! My next appointment isn't until Jan, so I'm just going to give it time & get all my questions ready for that appointment!
As far as the LID for me, I can't give you many suggestions for my favorite recipe. I hate to cook so I just ate many fruits and veggies. I struggled through those 11 days and absolutely hated that diet. I was lucky that it was only 11 days, as I've heard that many other people have had to do it longer! If I ever have to do it again, I will definitely do more research on different recipes.
Again, thanks for all your help! I'm so happy I found this thread!
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Old 11-23-2009, 08:44 AM   #457
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Quote:
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I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused. Any help would be appreciated!!!!
Hello m2j!!!

Sorry I have been away so long. You know I am on the boards but I sometimes forget to check this sub-board. I feel bad about that!

At any rate, your nurse misspoke when she said your TSH was too high. This often "gets" people. What she meant was that your thyroid levels were too high (which makes your TSH low--TSH is not a thyroid hormone). You were probably "too" hyper and they backed you off a bit. I take 5 1/2 pills per week to get mine just right. It's weird how sensitive the medication is.

So you are actually fairly hyper which will make you feel bad. It's a good level to be at for treating thyroid cancer but it is a careful balance between how hyper you can get without feeling like you're going to lose it.

Edited to add: Please don't hate me for this but I've never had any weight issues since my thyroid surgery 14 years ago. Sure, I gained some weight when I was off meds, but once regulated, it came off. If I take too much thyroid hormone I start eating a LOT though. My doc told me that many people can gain while hyper because it makes them have a ravenous appetite. Even though they are burning more calories they aren't burning as much as they eat.
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Old 11-23-2009, 08:57 AM   #458
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You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?

I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.'

I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!
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Old 11-23-2009, 09:20 AM   #459
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You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?

I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.'

I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!
The protocol has changed about hypo scanning. It used to be that you needed three clean scans the "old" way before they'd let you do Thyrogen. Now I think it is down to just your first scan needing to be a hypo scan.

I was reading just last week that there were some problems with Thyrogen having "debris" in it and some of it was recalled and in some cases the company has asked the doctors to look at the vials before administering? What the heck!!!!! I've pretty much decided that I won't be using it again as I had an adverse reaction to it the third time I used it. Overall though, it really is a godsend.

Oh and tired and cranky is definitely the way going hypo makes you feel. Hang in there!

Edited to add: I had to go to Whole Foods to get some decent checken that wasn't in a sodium solution. More and more regular stores are offering more natural chicken now without the sodium but you do have to be careful. I had no problems with beef though. Pork is kind of difficult.
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Old 11-23-2009, 10:26 AM   #460
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Oh and tired and cranky is definitely the way going hypo makes you feel. Hang in there!
My poor husband kept asking me yesterday if I was mad at him cause I was quiet and staring off into space. I finally said, "honey, I'm just tired. If I GET mad at you, I will let you know. "
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Old 11-23-2009, 06:53 PM   #461
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Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid. If they are too low you'll take less, which is what she told you to do. I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper.
This happens to me all the time. They say it is high because it really means that your thyroid is overactive (or high) although the way the labs are set up they measure TSH and the TSH is low in the lab range. Because TSH is produced by the pituitary they don't say - your pit is low, we have to treat your thryoid. So your thyroid is high, but your pit is low.

So if all they say is high or low - as them so what is the TSH lab range - you mean I'm high in the range or low?

Ya it's confusing.............
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Old 11-29-2009, 02:01 PM   #462
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Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.

I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.
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Old 11-30-2009, 08:25 AM   #463
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Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.

I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.
Micayla, sending you a . Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.
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Old 11-30-2009, 08:30 AM   #464
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Micayla, sending you a . Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.
Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.
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Old 11-30-2009, 05:48 PM   #465
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Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.
Hang in there!! You are really coming down to the worst part. What you are feeling is SOOO normal. I know that feeling of being tired and just feeling absolutely dull. And it doesn't matter how much rest you get--it just doesn't work.

I am with you on the food. By the end, I just didn't care. I was so worn down, I couldn't really desire any good food. This will be a different experience for you, however, if you ever induce hypo with the Thyrogen shots. You will still feel pretty good so you will sort of care more about your lack of food options!!

I just remember being so tired and lethargic then I ended up eating a lot of oatmeal.
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