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Old 10-29-2009, 03:18 PM   #436
mrsklamc
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Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?
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Old 10-29-2009, 03:23 PM   #437
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The nurse who gave me my thyrogen shots told me, oh this stuff is really expensive and some ins. *** dont like to pay for it, You are getting it because of what you have been through, after the cancer I got a bowel obstruction, lost another 12 lbs, had a resection etc. She said they usually only use this in older people etc. I did read on my hosp. website that they just seem to use thyrogen as standard etc. I have already been told I am having the diet and scan again in the spring, so I would say at least 12 months min. for the family. And they will make you take a pregnancy blood test before the RAI, its standard. Also if you are getting 200, are you staying in the hosp. or at home etc. I know some states have laws etc. I stayed in the hosp. My dh works with radiation and he knew how "hot" I really was.

I lost 20 lbs. in 2 weeks on the LID. mine was a combo of the NIH LID and other stuff. My rad. onc. is pretty strict and I was assigned a nutritionist from the hosp. Its weird stuff, like basmati rice, no potatoe skins, no dairy, no bread with bromated agents, no canned veg or frozen either, but I did see I could have only plain Birdseye Steamfresh, a lifesaver. I used no yolk egg noodles. I also could have Edys raspberry sorbet so that was good. I am glad I was too nauseous to eat food the last thyrogen shot because I was so sick of lettuce etc. I also just bought a lb. package of meat, since I could only have 4 ounces twice a day, I knew that would last for 4 meals etc. Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.

I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!
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Old 10-29-2009, 07:01 PM   #438
Christine
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Quote:
Originally Posted by mrsklamc View Post

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?
Perfect sense. That is how long it takes for your thyroid hormone to leave your body and for your TSH to go high enough to make a treatment worthwhile.

The first time I went hypo (I was 31) I worked up until the day I had treatment and I gained maybe 3 pounds (the first time is the easiest). I never got that sad/depressed or fat on the 4 times I went hypo, although I did feel pretty bad at the end and I did start to get really paranoid about the scan.
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Old 10-29-2009, 07:03 PM   #439
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Quote:
Originally Posted by mrsklamc View Post
Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?

Most people do well with the weight gain when the follow the LID. I think I lost 8 lbs when I did it (I was using Thyrogen though). Otherwise, I didn't really gain a lot of weight and wasn't overly sad. I just felt REALLY lethargic and slow. I couldn't sleep well and I was restless.
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Old 10-29-2009, 07:10 PM   #440
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Quote:
Originally Posted by luvmarypoppins View Post
I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!

Probably because of the size of your tumor and what they saw when they went in, they decided to do a "radical" neck dissection. My friend had that when they found out he had tall cell variant. Standard procedure is to take out a few. Believe it or not, when I had mine done it was not standard procedure to take any out. So I didn't not have a lymph node check. I could have very well had node involvement but I'll never know. I know when I went back in for my completion thyroidectomy, one node close to the area was enlarged so they removed it but it was fine. It was enlarged because of the previous surgery. If I did have it in my nodes, the RAI took care of it.

As for your comments on Thyrogen, more doctors are using it as standard. I don't know how comfy I am with that because in trial after trial, it doesn't do as well as going hypo. I think in Micayla's case, I am happy they are making her go hypo. But in many cases, using Thyrogen is a blessing and certainly in cases where going hypo can aggravate the cancer you would want to use Thyrogen. It is a very careful balance.

To answer Micayla's question about the conceiving issue, I didn't pay much attention to that because I had just had my second child when I was diagnosed (that SUCKED!!) and that pretty much did me in for awhile. I never planned on 3 kids and my diagnosed clinched the decision. Many people on the thyca listserv have gone on to conceive and have kids. You might want to post there as you will probably get a lot of good feedback there.
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Old 11-07-2009, 07:57 AM   #441
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I have been suffering with fatigue, facial flushing, and muscle and joint pain for months. I had a TSH done, and it was 3.17. The normal range is 0.03-5.0. I have been reading that some doctors believe that the normal range should be lowered to 3.0. I just wondered if anyone has had a TSH similiar to mine and been treated for hypo? Thanks!
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Old 11-07-2009, 10:02 AM   #442
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Quote:
Originally Posted by luvmarypoppins View Post
Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.
I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.
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Old 11-07-2009, 02:15 PM   #443
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Quote:
Originally Posted by mrsklamc View Post
I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.
I was doing it during easter and then one night I had to go to a catered dinner for my churchs 40th anniv. at a restraunt. It was a buffet!! I ate before and just brought fruit with me and gingerale. They sat us at a table the farthest from the food, sweet of them. Just wondering if they gave you a list of foods you CAN eat. My dietician told me she was working on one since everyone compalined that even with the thyca stuff, our own diet had things that were not allowed etc. They gave us a list of that stuff. I am seeing the rad. onc. in 2 weeks. I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me. I doubt it though. I guess we will discuss my next scan and lid which should be in the spring. Last time she said I was doing great. Do you know what your radiation dosage is going to be??
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Old 11-07-2009, 06:05 PM   #444
Christine
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Quote:
Originally Posted by luvmarypoppins View Post
I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me.

luvmarypoppins--

Here are some excerpts from some of the studies done on Thyrogen:

Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.

The combination of a Thyrogen-stimulated scan and a serum thyroglobulin test did detect all patients with metastatic disease, although not as sensitive as combination testing performed after patients were withdrawn from thyroid hormone supplements. The Thyrogen-stimulated scan failed to detect remnant and/or cancer localized to the thyroid bed in 16% (20/124) of patients in whom it was detected by a scan after thyroid hormone withdrawal. In addition, the Thyrogen scan failed to detect metastatic disease in 24% (9/38) of patients in whom it was detected by a scan after thyroid hormone withdrawal. Based on these studies, one can conclude that even when Thyrogen-stimulated thyroglobulin testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease.


Putting the above bolded comments aside, using Thyrogen or not using it is not a one-size-fits-all situation. There are many instances, where an aggressive thyroid cancer is present, that actually being off medication for 6 weeks is dangerous to the patient. As you know, not having suppressive doses of thyroid hormone can cause thyroid cancer cells to become very active and they can get moving again. In those cases, Thyrogen would be the EXACT course of treatment.

In cases where the thyroid cancer may be harder to detect, is slow growing and kind of lazy and latent, it is probably best to start out NOT using Thyrogen.
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Old 11-07-2009, 06:14 PM   #445
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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.
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Old 11-07-2009, 06:36 PM   #446
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Christine

I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.
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Old 11-07-2009, 07:45 PM   #447
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Wish me luck!! I go in for an ultrasound of my thyroid on tuesday. This is a follow up from a previous ultrasound to see if the nodules they found have grown! So far I have not been on any meds or given any real diagnosis, just that my levels were slightly off previously and the nodules.
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Old 11-07-2009, 09:52 PM   #448
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Can someone explain the Low Iodine Diet to me, how exactly does it help? I have hypothyroid disease. I was diagnosed 10 years ago after the birth of my first child. It is kind of strange because I can go years and be fine without taking any meds, then bam it all goes haywire.

Well I think it went a bit off and I have gained 30lbs this year, some of that has to be from drinking soda again but it seemd to really pile on over 4-6 months. I am going to the doctors on monday for an unrelated issue but I know my doctor is going to make a comment about my weight and will probably send me for my levels.

I haven't really given my thyroid issues the attention they need. Id on't take my meds I notice I'll remember just after I ate or something like that. I will be picking up my prescription in the morning and will be making a real effort to remember my pill in the mornings.

I noticed the LID talk so I was just curious exactly what does it help/do. I think I'd have a really hard time giving up milk.

TIA,

Charity
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Old 11-07-2009, 10:06 PM   #449
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TIA,

Charity
I hope you get the help you need, but this won't help you dear. It's for those of us who have cancer, to make our remaining thyroid tissue 'thirsty' for iodine so that the radioactive iodine they then give us kills *all* remaining thyroid tissue. (Your thyroid is the only part of your body that absorbs iodine.)
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Old 11-08-2009, 06:51 AM   #450
Christine
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Quote:
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Christine

I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.

luvmarypoppins--Oh doctors just HATE when you bring stuff like this in to them!!

I just want to say that, I believe in your case with your type of cancer, you should probably NOT be off meds and the Thyrogen is your best friend. I understand you wanting the best scan of all, but I think you are one of the candidates for Thyrogen use. I'm sure your doctor is pretty knowledgeable about all the studies and has deemed you to need this.

I think it's important to look at the literature if you are one of those people who does not have access to great medical care, a choice of endos or surgeons who have experience with thyroid cancer, etc. That was the position I was in when first diagnosed. I think you've got yourself with a very knowledgeable team.
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