The THYROID Thread

[mrsklamc]

I hate how they are 'practicing' medicine and don't really know...If the LID does not work then so many people have been through such unnecessary misery....

And just to prove I completely lost the genetic lottery, I have gestational diabetes...my sister has gotten it with her pregnancies but she is quite overweight and I am not so I thought I might get to miss that at least...no such luck.

 

[angwill]

I hate how they are 'practicing' medicine and don't really know...If the LID does not work then so many people have been through such unnecessary misery....

And just to prove I completely lost the genetic lottery, I have gestational diabetes...my sister has gotten it with her pregnancies but she is quite overweight and I am not so I thought I might get to miss that at least...no such luck.

Not enough is proven about the thyroid and the LID diet is still one of those controversial things. From what I researched and watched in a video the head of the American Thyroid association said he knows it is still controversial and not all endocrinologists and other doctors follow it because there is no proof of it's effects but that he believes it is an important part of the therapy. I questioned this with my endocrinologist, surgeon, and nuclear medicine doctor telling them what I saw and from who and their explaination of it was all the same belief that it can only hold so much iodine in there and depleating it with withdrawl and TSH levels getting high enough they feel that is all that is needed for the tissue and thyroid cancer cells to be hungry for the iodine and since the tissue and cells can only hold so much of it the diet does nothing. It made enough sense to me not to do the LID diet just as a precaution that the hungrier the better and I am worried it will not take in enough without LID. That does not mean that you or anyone else should listen to me and my doctors and it would be worth it for your peace of mind.

My friend's neighbor talked to me about he RAI treatment and her doctor had her going overboard with safety compared to mine. She was told plastic covering everything, wear gloves but make sure she did not touch the outside or touch herself with the gloves when on etc. Oh and even to keep her Air super cold so she sweat as little as possible. My nuclear med doctor said in his opinion that is way overboard but each of us has to do what we are comfortable with so that was ok what she did. He simply told me that the standard procedures and said the radiation I will emit even in the first three days if I touch my phone or computer keyboard etc will be so minut if any after 3 days time that it is not worth it to cover those things as long as my husband and adult son do not touch them till after the three days. He said he was part of a study they did with someone who got over 200mci (I cant remember the exact number) they put a tag that the people working in rad med use in hospital on the woman taking therapy along with their dogs, kids, and husband and followed with daily readings from the tags for two weeks and despite them being in the home with her after 10 days they had all had no exposure that detected on the tags without all the plastic coatings etc. He said because of that he felt comfortable telling me covering the bed, pillows, electronics etc was not necessary but to do what I felt comfortable doing. I will cover my pillows and bed in vinyl covers, launder things seperately in hot twice at least and clean all hard surfaces with lysol and a rag afterward. That is what I am comfortable with.

In other words do what you get advised to do and what you feel most comfortable and ok in your mind doing and that is what is most important.

As for the gestational diabetes, weight does not always play a part in that. Genes, diet, and sometimes just luck of the draw are what happens. I worked in OB years ago and saw twigs get it and obese women not and never really saw a corrolation with weight but that is just my observation. Contrary to popular belief some obese women are healthier and get more exercise and healthy food than a lot of thin women. The medical people know what to do and watch for. I never saw complications other than bigger babies but that was just my personal observation as well. Just listend to your doctor, watch your white starches, junk food, and if possible avoid all sugary drinks.

 

[luvmarypoppins]

ang - interesting how your drs. see things. Yes, I am sure every dr. has their own opinions on how do to things etc.

My rad. onc. now does thyrogen only. She says she is like the 8th largest user in the us?

I wasnt hypo but I still had to cook all my food after being in the coma and then the bowel resection, ugh!

100 is not so bad. I would like to know what your one year scan follow up will be like with that dose. I am always curious with this stuff.

Hmm, interesting about the tall cell acting like breast cancer remark. Can you enlighten me more on that.

I do know with mine they couldnt tell how my 2nd tumor got there but said it was a very aggressive formation etc. One pathologist thought it broke off and made its own tumor in a lymph node or took over a lymph and then started going through the accessory nerve or something like that. Also they are saying in some info that there may be a link between thy ca and then getting breast ca?? Hmm, I already had a tumor out but it was not cancerous.

Even if you didnt do the diet, just curious if you ate normal or did you try to cut back on the salt stuff???

Yes I am on the 6th month followup and testing regime. Its still 4 1/2 years. My endo never sad when she will switch to yearly.

Micayla - I am sorry you are now dealing with the diabetes. Do you have to be on a special diet or take meds? Dont know what is involved with that.

Yes, I can relate about the genetics stuff. I told you before my family has really bad genes. Especially heart and it seems connective tissue stuff. My ds has had to have surgery already and the surgeon said as usual, hmm, have never seen anything like this in my surgical career. I took pictures of it etc. Yeah, been there, done that.

I think I am also the poster child of the surgical what could go wrong, does go wrong stuff too. And they always say, this is rare and we have never seen this happen etc.

 

[angwill]

ang - interesting how your drs. see things. Yes, I am sure every dr. has their own opinions on how do to things etc.

My rad. onc. now does thyrogen only. She says she is like the 8th largest user in the us?

I wasnt hypo but I still had to cook all my food after being in the coma and then the bowel resection, ugh!

100 is not so bad. I would like to know what your one year scan follow up will be like with that dose. I am always curious with this stuff.

Hmm, interesting about the tall cell acting like breast cancer remark. Can you enlighten me more on that.

I do know with mine they couldnt tell how my 2nd tumor got there but said it was a very aggressive formation etc. One pathologist thought it broke off and made its own tumor in a lymph node or took over a lymph and then started going through the accessory nerve or something like that. Also they are saying in some info that there may be a link between thy ca and then getting breast ca?? Hmm, I already had a tumor out but it was not cancerous.

Even if you didnt do the diet, just curious if you ate normal or did you try to cut back on the salt stuff???

Yes I am on the 6th month followup and testing regime. Its still 4 1/2 years. My endo never sad when she will switch to yearly.

Micayla - I am sorry you are now dealing with the diabetes. Do you have to be on a special diet or take meds? Dont know what is involved with that.

Yes, I can relate about the genetics stuff. I told you before my family has really bad genes. Especially heart and it seems connective tissue stuff. My ds has had to have surgery already and the surgeon said as usual, hmm, have never seen anything like this in my surgical career. I took pictures of it etc. Yeah, been there, done that.

I think I am also the poster child of the surgical what could go wrong, does go wrong stuff too. And they always say, this is rare and we have never seen this happen etc.

Yes, they are different and sadly don't use thyrogen at least not with therapy but maybe the scans later? Didn't ask.

You are a strong woman with all you went through and then also did the LID. I have had days I would rather just stab myself than deal with anything. UGH!!

You know with the nuclear med guy saying I had less tissue than he had ever seen on a scan I am expecting a wonderful follow up next year with more of the same great news.

I just asked for a reference so I could understand the difference of the tall cell variant vs the norm and he said it is not the slow growing non agressive typical variant that they are refering to when they say if you had to get one kind of cancer this would be it. He said it is more like the faster growing more agressiveness of breast cancer as an example. Does that make more sense? So I guess it is not always the cancer that if you had to choose you would want to choose in all instances like tall cell. That is why they watch it closer.

So your saying you had a non cancerous tumor that was an agressive fast growing type? Interesting. I wonder if they only label cancer cells with variants like tall cells? A tumor must have cells but if non cancerous maybe they don't have labels for the cells? I suspect any tumor most likely can and will develop into cancer cells in time if not removed?

I read about the corrolation with thy ca and breast cancer and was told that after getting any type of cancer your chances of any other cancers developing are higher though. I did have to wonder too if the reason there seems to be a higher rate of breast cancer after thy ca is because we are more aware and urged to keep up our mamograms and pap smears so we are also more likely to catch breast cancer than non thy ca patients?

As for the diet. Yes I did cut back on the salt. I was not a salty person to begin with which may be why my numbers went so high so fast. I did pick up the easier thy ca foods and have been eating them like the mazo crackers and non salted peanut butter, unsalted nuts, and shredded wheat, oh and unsalted bread that I have not used. I am not a big bread eater. I also got lots of fruits and salad and have been focusing on eating those when hungry. I did not salt any foods but I would not anyway normally. When out running around like I should not be doing but have to I did not worry when I had to stop and pick up something to eat but did think about what I was ordering. I guess I would call it the casual LID. lol oh and I am not a big dairy person to begin with so I just avoided any of that easily too.

I am sad to hear about the genetics and your son. That can not make you feel good being his mom. When the doctor told me the thy ca and hashimoto's are hereditary so I should make sure my children are checked for it regularily I have never been so relieved that I could not have children and that I adopted instead. Not that that doesn't come with it's own issues in not knowing what might haunt his birth families genes. I am someone who finds blessings in even the little things that were devistating at one time in my life like infertility. You know rereading this I really hope it didn't come across wrong. I was just thinking about how I would feel and don't mean anything negative toward you or to make you feel bad in anyway and I apoligize if it did. I would delete it but it is already out there. If you rather I do let me know.

 

[luvmarypoppins]

No the breast tumor I had was not cancerous but it was the size of an egg. That is common in your 20's - fibroadenoma (? sp). Oh and in the rare and it could happen surgical thing with that. Post surgery the scar tissue wrapped around the nerve there and it feels like someone is punching me in the chest sometimes there. The radiologist said he only had 3 other cases like that, yeah right.

They told me the columnar cell I have is like tall cell. The cells are 3 times bigger then regular pap thy ca and they are stacked in a columnar pattern. I actually got to see a photo of my slides and the cells. It was awesome and scary at the same time. Thinking you are what was almost killing me etc. My endo asked if I wanted to see it and I said yes and my dh found it um, fascinating too. She was the one who told me she only had one other patient who had it.

Mine is usually in males over 60. I have seen a study lately on the internet that is pretty comprehensive statistically.

My rad. onc. says she see 2 patients a year who have it and that is only because its the only place in our county where you can get the rai. So I guess my year I was one of the perhaps 2? Gotta love them odds!

So you are rare. I am assuming they will do the 6 month blood tests and ultrasounds?

I think one of the funniest things was when I had to go to the lab and get the post rai blood test. I told the guy - they told me to tell you I was hot, really hot. He said um ok. and I told him etc.

 

[mrsklamc]

As for the gestational diabetes, weight does not always play a part in that. Genes, diet, and sometimes just luck of the draw are what happens. I worked in OB years ago and saw twigs get it and obese women not and never really saw a corrolation with weight but that is just my observation. Contrary to popular belief some obese women are healthier and get more exercise and healthy food than a lot of thin women. The medical people know what to do and watch for. I never saw complications other than bigger babies but that was just my personal observation as well. Just listend to your doctor, watch your white starches, junk food, and if possible avoid all sugary drinks.

Thanks...This morning I read an article about "Thin Outside, Fat Inside" and how that's kinda the body type that gets gestational diabetes despite not being overweight- and it fit me pretty well; I rely on counting calories vs exercise, because I hate it, have several family members with diabetes, which I do...and a sweet tooth. I quit drinking sweet drinks about 2 years ago. I need to go meet with a nutritionist and she will tell me how to eat. I got the message this morning (my dr must have been working overnight) so in the meantime we are taking walks after meals, since the internet seems to think that helps.

 

[angwill]

Thanks...This morning I read an article about "Thin Outside, Fat Inside" and how that's kinda the body type that gets gestational diabetes despite not being overweight- and it fit me pretty well; I rely on counting calories vs exercise, because I hate it, have several family members with diabetes, which I do...and a sweet tooth. I quit drinking sweet drinks about 2 years ago. I need to go meet with a nutritionist and she will tell me how to eat. I got the message this morning (my dr must have been working overnight) so in the meantime we are taking walks after meals, since the internet seems to think that helps.

Good for you being proactive that is really best. Yes just taking walks helps getting your heart pumping and blood flowing and it will help your body better process what you eat. That in turn helps the organs that process the sugars and such. The nutritionalist can be your best friend. I exercise 5 days a week and started on that path at least 10 years ago and a friend promised me I would grow to love it and look forward to it. I am still waiting for that to happen. I am a stationary bike kid of gal with some small weight work outs. I quit drinking the sweet drinks in my early 20's. I am obese and healthier than most of my friends that are not. My doctor swore I had to have high cholesterol and diabetes and she was wrong on both accounts. Very low cholesterol levels run in my family so that blew her away and so far I have kept the diabetes away though that does run in my family so will get me one day.

I have also worked with children with special needs and my favorite of them all is the DS kids. Yes, they can be a handful especially on a hectic day but the majority are the absolute most loving, open minded, see all the beauty we all miss kind of people. They teach us every single day how to find pleasure and love in the little things and blow off the garbage that is not worth acknowledging. They are a blessing in disquise IMO. That said I have never had to take care of someone with it 24/7.

 

[luvmarypoppins]

ang - wishing you all the best tomm.

Micayla - hope the walking will help you.

 

[angwill]

ang - wishing you all the best tomm.

Micayla - hope the walking will help you.

Drove to RAI therapy and got my pregnancy test and then pill and leave to drive back home. It was uneventful but now my stomach is all upset and I am praying I hold it in. Has anyone else felt sick to their stomach after taking the radiation pill? Matzo Crackers and mini wheats have been my friends today.

 

[wordwitt]

Hi, I know I posted on this thread a while back, but then got caught up in other things. I am a thyca survivor, also. Diagnosed 3 years ago. Total thyroidectomy with partial dissection. I had three positive lymphs, and one of them was poking through the lymph node. I had a good number of tall cells, but not enough to make it a "variant." But I am watched closely. I get my care at University of Colorado. My Tg ranges from .01 to undetectable, but I have a small number of antibodies that seem to be dropping. Hard to tell because they keep changing the assay. My scans so far are clean. I only had 49 mc of radioactive iodine. It was a gamble. My doc also keeps my tsh at .4, so again, a gamble. I have a hard time tolerating it any lower. I was 44 at diagnosis and just turned 47.

 

[luvmarypoppins]

Drove to RAI therapy and got my pregnancy test and then pill and leave to drive back home. It was uneventful but now my stomach is all upset and I am praying I hold it in. Has anyone else felt sick to their stomach after taking the radiation pill? Matzo Crackers and mini wheats have been my friends today.

I felt sick just about the whole week. My rad. onc. gave me an anti emetic pill because she said its her standard procedure before the rai since once a patient immediately threw up the pill right in front of her, gheesh!

Yes I think Christine says its radiation gastritis. I felt as soon as I ate something I had to run to the bathroom like 30 minutes after I ate and it didnt matter what I ate I felt pretty miserable. (colon issues sorry not stomach) Like everything was going through my system in such a short amount of time. But at least I did not lose my taste or smell like some on here have. But that does not last forever. Keep drinking!

Since its 24 hours past the rai why dont you have some soup or jello or gingerale etc? Even tea if you want something non carbonated.

They told me most of the radiation concentrates in your neck and stomach areas? That was from some radiation guy coming at me with the geiger counter in the hospital.

My dh kept scientifically figuring out all week how radioactive I was in half lifes! Gotta love him!

Hang in there. And this too shall pass!

 

[angwill]

Hi, I know I posted on this thread a while back, but then got caught up in other things. I am a thyca survivor, also. Diagnosed 3 years ago. Total thyroidectomy with partial dissection. I had three positive lymphs, and one of them was poking through the lymph node. I had a good number of tall cells, but not enough to make it a "variant." But I am watched closely. I get my care at University of Colorado. My Tg ranges from .01 to undetectable, but I have a small number of antibodies that seem to be dropping. Hard to tell because they keep changing the assay. My scans so far are clean. I only had 49 mc of radioactive iodine. It was a gamble. My doc also keeps my tsh at .4, so again, a gamble. I have a hard time tolerating it any lower. I was 44 at diagnosis and just turned 47.

Hi and WB. What does partial dissection mean? I have tall cell variant as diagnosed after TT. I have no idea what my TG will be or what TSH levels we will go with since I am still anxiously awaiting being able to take my levothyroxine again on Saturday. By antibodies I take it you mean hashimoto's antibodies? I thought those stop after a while? My doctors said they rarely give under 100 mci for therapy. I am 44 now and was diagnosed with thyroid cancer in July.

Can I ask what scans and tests you get now and how often?

Ang

 

[Christine]

Hi and WB. What does partial dissection mean? I have tall cell variant as diagnosed after TT. I have no idea what my TG will be or what TSH levels we will go with since I am still anxiously awaiting being able to take my levothyroxine again on Saturday. By antibodies I take it you mean hashimoto's antibodies? I thought those stop after a while? My doctors said they rarely give under 100 mci for therapy. I am 44 now and was diagnosed with thyroid cancer in July.

Can I ask what scans and tests you get now and how often?

Ang

Partial dissection refers to a neck dissection where they go into the neck and remove lymph nodes. Partial is less than a full so the remove less nodes in a partial.

The antibiodies she refers to are anti-thyroglobulin (TG) antibodies. Some people have them, some people don't. As long as you demonstrate antibodies, your TG test is not considered reliable. The antibodies will "fight" the TG so if you have a low or nonexistant TG reading, the antibodies may be causing that so you can't really get the "all clear" as long as you have them.

As for the nausea, I had it both times with my 150 mci doses. The nuclear physician told me that the RAI causes gastritis. My nausea lasted a good while. My doctor prescribed Pepcid AC in the morning and evening and Gaviscon liquid throughout the day. I do think it helped quell the nausea faster than when I didn't use those meds.

 

[mrsklamc]

I was only nauseous after my second (higher) dose. A friend went to whole foods and bought a chicken to make me chicken soup with, and that was about all I ate for a week.

 

[1Grumpy9]

I haven't checked in here in a while. I have finally found a med that is working the way it is supposed to. It is Tirosint and after some juggling, I am at a level that keeps my numbers where my Endo likes to see them. She did up my calcium pill that I take for my hypocalcemia. The problem is that my pharmacy couldn't get the script filled and I had to go to another pharmacy that my insurance will allow me to go to. The other problem is that I can only get a one month supply for the pill instead of a 3 month supply like at the other pharmacy.

 

[Christine]

I tried Tirosint back in the June/July timeframe.

For some reason, I was miserable. I was going through a very stressful time at work so I have no idea of the real cause. It's a shame there was such poor timing involved there.

I had terrible anxiety, panic attacks, horrible intestinal issues. This went on for 6 weeks. It finally calmed down when I found some old Levoxyl and some generic Sandoz levothyroxine.

I've thought about giving Tirosint another try but I'm not quite ready yet to put myself through that if it WAS the medication.

 

[1Grumpy9]

I was on Synthroid since age 7, and after my surgery, I was almost maxed out on the amount that the Endo wanted to give me (600mcg a day). My numbers were still too low for her liking, so she tried Tirosint on me because it is made for those with absorption problems (which I have with all the calcium I take). I am now on 200mcg of Tirosint and it works soo much better for me. I am glad my Endo heard about Tirosint when she did or I don't know what I would be like without it. I am also glad that my perscription plan covers Tirosint (they didn't cover Synthroid).

It could have been a combination of everything going on and a change of meds to your system that made you feel like that.

 

[Christine]

I was on Synthroid since age 7, and after my surgery, I was almost maxed out on the amount that the Endo wanted to give me (600mcg a day). My numbers were still too low for her liking, so she tried Tirosint on me because it is made for those with absorption problems (which I have with all the calcium I take). I am now on 200mcg of Tirosint and it works soo much better for me. I am glad my Endo heard about Tirosint when she did or I don't know what I would be like without it. I am also glad that my perscription plan covers Tirosint (they didn't cover Synthroid).

It could have been a combination of everything going on and a change of meds to your system that made you feel like that.

WOW, 600 mcg!!! I have heard mostly good things about Tirosint and I am a *sensitive* person so I thought it would be a great choice for me. I felt so awful. I heard that you should start at a lower dose than usual because, since it has not fillers, it is much better absorbed and you get more medication in your system. So that could have been one issue. However, I had a really, really, really stressful job situation going on (worst of my life) that started right when the Levoxyl got recalled. Honestly, it could have been that rather than the Tirosint.

My insurance does cover Tirosint, but I pay $70 for a 3-month supply versus $20 for a 3-month supply of Levoxyl. Synthroid runs me $35 for a 3 month supply.

 

[angwill]

Christine, thanks for the explainations and suggestions.

My endo just told me to take over the counter calcium and vitamin D that I am low on. Does anyone have any suggestions of a good OTC stuff? I know they calcium citrate is best but any other suggestions?

 

[luvmarypoppins]

ang - my endo told me just to take a couple of tums a day for the calcium.

My vitamin d must be really low because I have to take a prescription supplement once a week its 50,000 iu and you cant get that high a dose over the counter. Of course my ins. does not pay for it but its not too expensive.

How are your nausea issues? I agree with Micayla. the 200 mci really throws you for a loop!

Maybe try smaller meals more frequently and experiment with things to see what you can tolerate. Do you have any taste issues?