The THYROID Thread

[mrsklamc]

I think they are doing it weird, this is only for a thyroglobulin level.She mentioned the diet and I said, I don't understand how that's related? She went back and checked my chart, and then said no diet was necessary. We scanned Sept. 3 and she said they would wait a year before doing it again.

 

[luvmarypoppins]

So just why is she wanting to do the level now? To see if the rai is working? etc.

Praise God you dont have to do the diet. You have been through so much with that diet. You are the champ!!

I would just have some jello, gingerale and chicken soup on hand just in case. And maybe ask if you are allowed to take something like tylenol etc. for the headache.

 

[mrsklamc]

I think since it grows slowly and my scans had nothing on them in August, and the only thing that did indicate thyroid tissue was the blood test, she just wants to see what shows up. I almost wish she would do the scan too, because even if the blood test is clean, she won't let us start trying to conceive until after a clean scan in August too.

 

[luvmarypoppins]

I m a little confused.

Is this blood test because you said something in another post about cells in serum?? Christine asked about that too.

Also when was your 200 RAI dose?? I thought it takes up to a year to work, hence the half life etc.

So what would the blood test show if you had the 200 rai not too long ago? Maybe christine could answer this.

 

[Christine]

I m a little confused.

Is this blood test because you said something in another post about cells in serum?? Christine asked about that too.

Also when was your 200 RAI dose?? I thought it takes up to a year to work, hence the half life etc.

So what would the blood test show if you had the 200 rai not too long ago? Maybe christine could answer this.

Hopefully the thyroglobulin is going to show a downward trend at this point. While 6 months isn't enough time for the RAI to be done, the number should definitely be lower than 6 months ago *if* it is working.

As for any changes in the protocol with no scans, you will still follow the schedule I posted above but you will not have a tracer dose on Wednesday. You will have your Tg labwork done on Wednesday.

 

[mrsklamc]

Thanks Christine.

They said the "cells in serum" didn't mean anything significant.

 

[dischick4778]

dischick - Did your rad onc. or whoever decided your rai dose, say why you were getting that specific dose? Just wondering?

Because from what I have read and seeing what Micayla has been through, I guess I am just curious to see what other drs. opinions on the dose when there is already lymph node mets and also the rare agressive variants.

Hence, just wondering why you got 150?

The Rad Onc. made the final decision on the dose after seeing my post surgery scan. She felt the surgeon was very thorough and there was no visible signs of cancer left. She said that she was prepared to give me a much higher dose based on how much cancer was there and how many tumors I had, but after seeing the scan she didn't think it was necessary. I guess my surgeon really did a good job, it was a 6 hour procedure. The Rad Onc said that she would have given a higher dose had there been any indication of cancer on the scan.

Do you think 150 was low?

 

[mrsklamc]

I know that Dr.Ain (recommended to read his site by Christine, whose opinion I value highly) says 200 is the least you should have if you have spread to lymph nodes, but I had spread to lymph nodes and my first dose wasn't that high either.

 

[casndan]

Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!

 

[angwill]

I have also noticed over the years that as my weight goes up and down the thryoid dose I need to regulated go up and down with it. So what dose works for one won't always work for another.

 

[luvmarypoppins]

The Rad Onc. made the final decision on the dose after seeing my post surgery scan. She felt the surgeon was very thorough and there was no visible signs of cancer left. She said that she was prepared to give me a much higher dose based on how much cancer was there and how many tumors I had, but after seeing the scan she didn't think it was necessary. I guess my surgeon really did a good job, it was a 6 hour procedure. The Rad Onc said that she would have given a higher dose had there been any indication of cancer on the scan.

Do you think 150 was low?

I guess I am just curious. As my rad. onc. said 150 is the standard, then I got 25 for the rare variant and 25 for the lymph node spread.
And since you are the only one else I know with a rare variant, just wondering how things will turn out.
Dr. Ain said 200 for the rare variants.
I think my rad. onc. is of the mindset to bomb the crap out of the cancer. She says "its agressive, so we will treat it agressively." But she says I am doing well, and I am thanking God for that. I go for another blood test in Jan.

 

[luvmarypoppins]

Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!

Good to see you. So is your husband still overseas? Tell him thanks from all of us.
Just curious what your rai dose will be. See above post. I cant remember your surgery date, but has it b een a while??

Also I hope you dont have a bad thyrogen reaction. Just be prepared for the headache and quesy feelings. Maybe make some soup ahead of time.

Diet tips:
I did a crock pot oatmeal that I found on the budget board. It was good and I hate oatmeal.
Pop unpopped popcorn in a brown paper bag in the microwave.
Birdseye PLAIN steamfresh vegetables are ok.
Hagen Das Sorbet is ok, but read the label.
Martinnells Pure Apple Juice is ok
Mix it up on the plate for color.
Take a chicken breast in the fry pan and put orange marmalade on it, basmati rice and birdseye steamfresh sugar snap peas and instant close enough to chinese etc. You get the LID picture!!
NO Yolk egg noodles, some beef, peppers and onions and tomatoes (fresh) and close to spaghetti as possible.

Wishing you all the best. Hang in there!!

 

[casndan]

I'm actually not sure what dose I'm going to get, I would think that it would be on the lower side because my largest nodule was only 1.8cm with no lymph node involvement but the cancer was multi-focal so I'm not sure. My husband is actually home, he fell out of a guard tower in mid-June and fractured 2 vertebrae and broke his foot and at this point it looks like he will be medically retiring although we're not totally sure at this point. Life is crazy, but it seems to always be that way around here! Thanks for the meal ideas!

 

[dischick4778]

I guess I am just curious. As my rad. onc. said 150 is the standard, then I got 25 for the rare variant and 25 for the lymph node spread.
And since you are the only one else I know with a rare variant, just wondering how things will turn out.
Dr. Ain said 200 for the rare variants.
I think my rad. onc. is of the mindset to bomb the crap out of the cancer. She says "its agressive, so we will treat it agressively." But she says I am doing well, and I am thanking God for that. I go for another blood test in Jan.

Does the dose amount have anything to do with body size or is it strictly related to the cancer. I weigh around 110lbs and wondered if a higher dose would have really had an impact on my health in general - meaning major naseau, lack of appetite, weakness, and such. But since I got a lower dose I didn't ask this question. Also my rad onc made it sound as though she legally (or morally) could not go above 150 unless she saw cancer still on the scan. Not sure, just hoping things work out.

I have been taking 225 on levothyroxine for about a week now and .50 on calcitriol. So far no noticeable change.

 

[Christine]

Does the dose amount have anything to do with body size or is it strictly related to the cancer. I weigh around 110lbs and wondered if a higher dose would have really had an impact on my health in general - meaning major naseau, lack of appetite, weakness, and such. But since I got a lower dose I didn't ask this question. Also my rad onc made it sound as though she legally (or morally) could not go above 150 unless she saw cancer still on the scan. Not sure, just hoping things work out.

I have been taking 225 on levothyroxine for about a week now and .50 on calcitriol. So far no noticeable change.

Body weight doesn't factor in on RAI. I do believe that 150 mci is now the standard.

Another factor they take into account, if you have a scan after surgery, is how large the thyroid remnant is that the surgeon left. If the remnant is large, they will likely give you a smaller dose. If the remnant is miniscule, they like to give a bit of a higher dose. Sounds backwards, doesn't it? The more thyroid tissue you have left in your neck, the more that tissue takes it up, the more HOT it gets during treatment, the less you need. That's why you will often hear of Grave's patients only getting 29 mci to destroy their overactive thyroid glands. They have so much thyroid tissue and so much energy in their thyroid that they need very little to have it destroyed.

For post-surgery thyroid cancer patients, there is very little thyroid remnant left, and most of what is left is either functioning normally or less than normal. They take all this into account when figuring out dosage.

My very small remnant had a hard time ablating, hence I had several treatments (and to think I only had a less than 1cm tumor to start). On my very last treatment they really wanted it to be at 200 mci because my remnant was so small and not uptaking much. I begged to keep it lower because of the side effects. Fortunately, it worked that last time but I did see their logic for wanting to do 200 mci.

 

[MAGICX2]

Hi Everyone! Its so strange that I got on the DIS to put Thyroid in the search function and before I could even do that this thread came up at the top of the Coping and Compassion Forum.
Anyway, I was diagnosed last week with a 1cmX2cm solid mass on my Thyroid. I am having a biopsy tomorrow. I am very nervous. I have just started doing a lot of research about it and its freaking me out. The symptoms I started out with are EXTREME fatigue (I could sleep for 12 hours be up a few and then have fitful sleep at night), extreme dry skin, loss of hair, muscle soreness, and then it progressed into difficulty swallowing, excessive sweating, and weird appetite changes.
I was told that my mass is a solid "cold" mass. I am a Rad Tech so I do have a little more knowledge about the imaging aspect of it than most.
Any advice?

 

[turkeymama]

Okay, I'm going to jump in and ask a question. I have hypothyroidism and the last time I had bloodwork done (just a few weeks ago), my TSH was way off (16.338). The doc increased my dosage as a result and I have already started feeling better.

My glucose level was low and the doctor also says I'm hypoglycemic. He advised me to go on a diabetic diet, which is proving to be more difficult than I thought. I didn't think to ask him at the time, but could my low glucose be a result of my thyroid being way off? I've been reading that hypoglycemia can be a result of endocrine disorders. The only other result that was off was my ANA screen, which was positive. I don't think that would affect my blood sugar though. I'm hoping my blood sugar will level out once I get this increased synthroid in my system.

Any thoughts?

 

[dischick4778]

Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!

Good luck with everything! Some foods I didn't mind so much included hard boiled egg yolks mixed with avocado to make a kind of egg salad. I would eat that with lettuce or like a dip with celery. Bland, but not terrible and I like avocado a lot so that helped. I also ate a lot of chicken. Some time I used corn meal to coat it and made baked cutlets. And oatmeal was basically the only thing I ate for breakfast with fresh blue berries and brown sugar. It wasn't the greatest tasting food but those were the things that got me through it.

 

[Christine]

Hi Everyone! Its so strange that I got on the DIS to put Thyroid in the search function and before I could even do that this thread came up at the top of the Coping and Compassion Forum.
Anyway, I was diagnosed last week with a 1cmX2cm solid mass on my Thyroid. I am having a biopsy tomorrow. I am very nervous. I have just started doing a lot of research about it and its freaking me out. The symptoms I started out with are EXTREME fatigue (I could sleep for 12 hours be up a few and then have fitful sleep at night), extreme dry skin, loss of hair, muscle soreness, and then it progressed into difficulty swallowing, excessive sweating, and weird appetite changes.
I was told that my mass is a solid "cold" mass. I am a Rad Tech so I do have a little more knowledge about the imaging aspect of it than most.
Any advice?

No good advice. The waiting is the hardest part. My nodule was also cold but never caused me any symptoms and my thyroid was operating beautifully. Since your nodule seems to be interupting your thyroid function, maybe it's a good sign that it's just hypothyroidism.

 

[Christine]

Okay, I'm going to jump in and ask a question. I have hypothyroidism and the last time I had bloodwork done (just a few weeks ago), my TSH was way off (16.338). The doc increased my dosage as a result and I have already started feeling better.

My glucose level was low and the doctor also says I'm hypoglycemic. He advised me to go on a diabetic diet, which is proving to be more difficult than I thought. I didn't think to ask him at the time, but could my low glucose be a result of my thyroid being way off? I've been reading that hypoglycemia can be a result of endocrine disorders. The only other result that was off was my ANA screen, which was positive. I don't think that would affect my blood sugar though. I'm hoping my blood sugar will level out once I get this increased synthroid in my system.

Any thoughts?

Many years ago, when I was in the hospital for RAI treatment, my blood sugar crashed. But my TSH was 145, I had just been dosed with a high dose of RAI and it happened after that.

I don't think it is out of the realm of possibility that being hypo could affect your blood sugar. Being hypo affects the functioning of every organ in your body.

I would definitely have a retest once you are normal.