The THYROID Thread

[stric12345]

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!

 

[mrsklamc]

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.

 

[luvmarypoppins]

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??

 

[Christine]

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.

 

[mrsklamc]

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.

 

[luvmarypoppins]

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.

 

[livinlife25]

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.

 

[CharityLynn]

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

 

[mrsklamc]

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.)

 

[Christine]

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.

 

[Christine]

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...

 

[luvmarypoppins]

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!!

 

[m2j]

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!!!!

 

[luvmarypoppins]

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.

 

[jennz]

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!

 

[m2j]

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!

 

[Christine]

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.

 

[mrsklamc]

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!

 

[Christine]

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.

 

[mrsklamc]

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. "