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Thyroid Cancer Discussion Group

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15th October 2011

thyroidcancrus8:26pm: Looking for Thyroid cancer discussion
Hello, I am looking for discussion on Thyroid cancer.  I am post surgery/iodine treatment.  I want to learn all I can since I knew very little (and still know very little) about this cancer.  My mom and I are thinking about writing a book about this and any and all input from others who have this would be cool to add. 
I hope to see lots of stuff from lots of people soon.
Current Mood: interested

21st September 2010

folkstar5:43pm: Elevated ALT
Has anyone experienced elevated ALT on their Liver function tests? Mine came back elevated at 64. Thanks!

5th February 2010

drucat1:40am: False positive FNA? x-posted
Has anyone ever had a false positive FNA? I got told that doing an FNA without ultrasound when my entire thyroid was inflamed from Hashimoto's was a bad idea because Hashi's can look like cancer when it isn't, and then the FNA came back as cancerous, but when I asked the doctor how they could tell it was cancer and not the Hashimoto's, he seemed irritated and didn't really answer me.
I assume I really have thyroid cancer, but it seems like the only false positives are when you have Hashimoto's, and I'm about to get my entire thyroid removed, so I really could not be certain enough at this point - if they take the whole thing out and they were wrong, I'm going to be really really unhappy, because I know FNAs aren't 100% accurate to begin with, and Hashimoto's clearly complicates things, but no one will let me ask questions and I need the answers. I don't want my whole thyroid removed unless there's a really good reason (I have one well-differentiated tumor on one lobe), and I want to decline the RAI if I can justify it (from what I've read it reduces recurrences but not survival, somehow, and I'm not a fan of having something *inside* me that makes me a danger to anyone I stand too close to for too long).
Has anyone had an FNA repeated ever?
I'm so freaked out about this surgery and I need to have it really really soon, and I am not coping very well at this point. I understand the logic, people online keep telling me my thyroid is "diseased" etc, and that's fine, but since going on Synthroid I have felt consistently worse and worse and worse, and if this is what I have to look forward to forever, it is not worth it. I'll try to get someone who will give me Cytomel or get Armour or something from Canada if I have to, and ideally that will help me, but right now, I don't even have enough time before my surgery to try anything else and find out whether it will help, and my endocrinologist didn't seem concerned at all that I was feeling horrible.
Also I forgot to tell him about the major hypoglycemia symptoms I've been having, because I pretty much just stopped eating stuff that was sugar unless I was careful to have a lot of protein with it, and that mostly helped, but it's a big problem if I want to just be able to not think about what I'm eating every minute.
Current Mood: depressed

21st January 2010

drucat10:29pm: mood, emotions, behavior, mood swings, etc
So, basically, I have Hashimoto's and thyroid cancer and I'm on Synthroid (100 mcg), although I swear I started feeling worse when the Synthroid started working - I have been on it for a couple of months but haven't had blood tests since I went on it. I have my thyroid still; I'm scared to have it removed because of the ramifications.

Anyway, I've had the Hashi's for about 10 years, nearly got diagnosed as bipolar due to it, have been diagnosed with depression, anxiety, last summer was having 3-4 panic attacks a day, running a fever (this NEVER happens), having palpatations, tachycardia, and hypertension, and yet somehow was euthyroid (1.something - I have always tested as either 1.2ish or 2.5ish).

I've been seeing this guy for almost two years. We were very serious. The cancer diagnosis was really stressful and even though I kept telling him he shouldn't be he thought he needed to take care of me.

Long story less long, we've been fighting, he's been clinically depressed for about 6 months and is finally seeing someone about it, I've been having major anxiety and am depressed despite my medication, and then our fights got out of control, he left for a week, I started flipping out and acting kind of really fucked up, and honestly, I don't feel like myself and it seems like a thyroid issue (mood swings, extreme anxiety, etc), and now he refuses to even see me for the most part, where before he said we were still going out.

So I was just wondering if anyone could talk a little bit about how your thyroid impacts your mood or emotions or actions on or off medication, euthyroid, hyper, or hypo, what the most extreme manifestations have been as far as things you've said or done or felt, etc?

Because basically every article about this stuff says your thyroid can affect your mood but doesn't really admit to what extent - the only people who seem to get that are patients - and this guy is going to break up with me not matter what, I get it, but I want to find some way for him to understand that there is a difference between me and my real personality and me when my thyroid is screwed up and I can't control it. I am taking steps to control it - I will see my endo on Monday - and I am aware of the natural dessicated hormone and I don't know whether not having T3 is what's doing this or what - but I'm not looking for advice so much as support for an argument. Thanks.
Current Mood: depressed

17th December 2009

drucat4:48pm: I know I sound insane but
I got diagnosed with Hashimoto's in October. The same day my endocrinologist started me on Synthroid I got a call that the FNA had come back with what looked like papillary cancer. Since then I've been absolutely frozen. I accidentally missed my second appointment with my endocrinologist because I forgot about it, I haven't called for the results of my second opinion (my tumor is palpable and 3 cm x 2.5 cm x 2.4 cm, so I don't think there's any way they're going to turn around and say, "just kidding, it's benign" - especially since it appeared so quickly and the Synthroid has resulted in a decrease in the overall inflammation of my thyroid gland but I can still feel the place where the tumor is). I just don't want to give up my thyroid gland, and I don't want to have radioactive iodine and risk getting another type of cancer that might be worse as a result. Surgery increases the chances of metastasis, and metastatic tumors are always worse than primary tumors. I know that all of that's moot if I don't get rid of the primary tumor, but I just can't make a move. I start to hyperventilate whenever I think about picking up the phone, and I lost the orders for my neck sonogram to see if it's spread to my lymph nodes. Also my COBRA runs out in a little more than two months.
I know this is the "best" cancer to have. I feel stupid even talking about having cancer because the cure rate is so high. I just don't want to be unable to survive without pills for the rest of my life (and yes, I know I'd be on pills for the Hashimoto's anyway) and I can't think when I'm hyper- or hypothyroid and basically failed out of college due to the undiagnosed Hashimoto's (combined with some other factors and bad luck and other bullshit). I know I'm being a complete idiot. I just don't really trust current conventional medicine to know the best way to deal with cancer because I know of all the different things that have turned out to be huge mistakes in the history of medicine and because I'm just skeptical of pretty much everything right now. I know I'm lucky to even have the luxury of being able to delay for as long as I have without seriously risking my life, and I know I can't delay forever, but I can't feel okay about this.
Has anyone else been this petrified, not of the cancer, but of the treatment? Had anyone declined radioactive iodine treatment? Does anyone have the cancer who hasn't had surgery yet? I know I'm being a complete idiot. I just don't know how to get myself through this. My mother died two years ago and I still haven't gotten over it; we were very close and my relationships with my father and sister basically range from nonexistant to hostile. Even if I had surgery tomorrow my insurance would run out before it was time for the radioactive iodine treatment. Obviously I don't plan to have a break in coverage, because right now HIPAA protects me to a certain extent, but I will never have insurance that's as good as what I have right now.
When I think about it too much or talk about it (or write as much as I have right now) I just start crying and freaking out. I'm 28. I've been a vegetarian since I was 10. I don't drink caffeine and almost never drink soda (none since I was diagnosed). I eat frozen meals but I'm talking about Amy's brand, not super processed crap. I get organic foods. I exercise. I tried to get an endocrinologist to pay any attention at all to my symptoms a full year before this and they wouldn't even look at my test results. First they said nothing was wrong with me, then they said I had PCOS, then they said that if I had anything else they would be able to tell by looking at me. Even my current doctors say I've always been euthyroid despite having had almost no thyroid tests and really really clear symptoms of hashitoxicosis (low grade fever when i usually run from 96 degrees when i wake up to 97 for most of the day to 98 before bed, and *maybe* hit 99 if I have an active infection, resting pulse rates over 100 and up to 120 when at home watching tv (hadn't moved in half an hour) and 134 when taken at the hospital when I finally called my insurance company and they told me to go to the ER - my usual is in the 70s, hypertension (134/90 at the hospital - it's usually 110ish/70ish), and tremors in my hands that were so bad I couldn't write or type without double-tapping keys and having my hand jerk in the middle of words so that my writing was barely legible. Also 3-4 panic attacks per day - but none when I was at the hospital - of course the doctors have claimed it was a panic attack, but the ER doctors could tell it wasn't one, because I was entirely calm, and I could tell it wasn't one because I've had them - ranging from limited-symptom through to debilitating - and this just wasn't one. I feel like all the symptoms I've ever had of anything physical have been written off as psychological.
Just wondering if anyone else has been in anything like my position mentally or actually before. Everyone I know on thyroid medications still has symptoms - some of them claimed they didn't and then when I gave them a list of symptoms it turned out they were having lots of them.
I just can't handle this at all.
Current Mood: scared

16th June 2009

poetsinn10:39am: Hi folks,

I just joined and was very excited to find this community on lj.
For fellow canadians, there will be a Thyroid Cancer discussion at Wellspring at Women's college hospital in Toronto. Here's the link
http://wellspring.ca/nc/centres/womens-college-hospital/discussion-series.html
I thought it may be of interest...sorry if posting that here is inappropriate...I ofcourse, mean well.

I was diagnosed with advanced (stage five) papillary thyroid cancer in winter of 2004. While I've had a couple of surgeries and very intense doses of R.A.I, the cancer still seems to be lurking about. I find that there is very little info available (where I live) about Thyroid cancer, and sometimes it can indeed be a lonely journey. I was only twenty five when I was diagnosed, and it feels like I've spent significant time devoted on healing cancer. While a cancer healing journey can be at times inspiring, other times I just get tired of dealing with it..wanting to move on...wishing to say "remission" but this cancer conceals itself under a head of healthy hair and a gracious smile. I think thyroid cancer is a very emotionally perplexing and difficult illness...and I hope I can support others and perhaps share with you on here.

Many blessings of light and wellness,
Autumn

25th March 2009

mazz2:14pm: Just posting for some good thoughts.
I've been going every day this week for scans since getting a tracer dose on Monday.
It's to decide the highest dose they can give me without killing me with Radioactive iodine.
Heh, that's a little... scary to think about when put that way.

I totally trust my doctor but... seriously. I'm still scared of cancer even if the worst of it(surgery and first RAI) are over.

This one is going to be inpatient RAI(on April 2nd) so I get to seriously be isolated. No visitors.. At least the hospital has cable.
--

I also go in next month(the 13th) for a full body scan as well as a bone scan. I've done millions of full body scans so I'm not worried. What does a bone scan do if anyone else has been through it? I'm assuming they're trying to see if the cancer has spread to my bones(it was pretty far progressed into my lungs when they found it).

Other than that, the LID sucks of course and being off my meds makes me want to cry but people have been helping me a lot and I'm only behind in one of my classes(my teacher told me to focus on the other classes and I'll have plenty of time in April to make up what I've been missing).

Thanks for the love and question answering in advance.

crossposted to Thyca and Thyroid.
Current Mood: blah

8th February 2009

sophiedb9:59am: Thyca In The News
Gene Study Finds Link to Cancer of Thyroid

Scientists have identified two genetic variations that account for 57 percent of cases of thyroid cancer, a finding that could lead to earlier detection among people at high risk for the disease.

cut to save f'listsCollapse )

The next question will be to find out - one day, when a test is available - whether this is the case with Mum and I and, potentially, Katelyn.

Do I really want to know? :(

21st November 2008

mazz8:12am: Updare, anyone from Texas?
Went to my endo today. I had my thyroid hormone dose raised up some. They're trying to keep me at the verge of hyper without actually hitting that stage. So 188mcg for me.

I have an ultrasound December 18th. Then possibly a biopsy on my submandibular gland.
If it's cancerous they're going to remove it before my next dose of Radioactive iodine.
My doctor is worried if my submandibular gland is cancerous it will take the RAI they want to send to my lungs.
So I figured out where my submandibular gland is at least. l I asked my doctor and he told me.
--

I actually do have a question for anyone in Texas. Are there good enods who know about thyroid cancer, specifically stuff that's already spread pretty far?
My old doctor here was terrified and sent me to my current doctor.
I may end up having to move to Autsin and I want to know the history of their better doctors while I can.

The hardest part will be finding someone to take me on Medicaid. My last insurance found an excuse to drop me.

cross posted to thyroid and thyca
Current Mood: blank

11th November 2008

mazz11:32am: Thyroid cancer awareness ribbon for your profile
livelaughlovep is on my friends list and ended up making a bunch of awareness ribbons for people's profiles.
She gave me permission to let you guys see this one in case you want it on your profile.

--

This one is resized to be able to be used as an icon.

She said credit is loved but not required.
Enjoy.

X-posted to Thyroid and Thyca
Current Mood: cheerful

14th October 2008

la_bellisima3312:00pm: TSH & HBC

A bit of history before I get to my question:  I was diagnosed about 4 years ago with thyroid cancer and hyperparathyroidism.  Two surgeries and some radiation later and I’m without my thyroid gland, and down 2 (of 4) parathyroid glands as well.  Since then I’ve been taking levothyroxine, always hovering around a dosage of .137mg and a TSH ~0.1.

 

So, that brings me to the present.  I stopped taking hormonal birth control (HBC) about 5 months ago and my TSH hasn’t recovered.  It shot up to 10.5 so I increased my levo dosage twice and my TSH only moved down to 4.5.  I’m sure I’ll be increasing the dosage again, but does this sound backwards to anyone?  I thought that going off the HBC would lessen my medication requirements, not increase them?  All my other levels are fine, good even; it’s just the darn TSH.  Anyone else had this problem with going off HBC?  Could there be any other cause for the stubborn increase in TSH?

25th January 2008

mazz8:42am: Doctor news and question.
So I went to see the doctor yesterday. I don't need a second surgery.... *big sigh of relief*
I do however have to do thyrogen injections between school semesters to scan so see how bad the cancer still is apparently.
What can I expect for side effects from those of you who went through that?
I'm not big on being injected with things. D:

They told me I have a high probability of having a second RAI treatment but that I'm less concerned about since I've done it before.
--

Crossposted to thyroid and thyca
Current Mood: curious

8th January 2008

sophiedb1:14pm: RAI video
The following video was posted by someone from the Thyroid Cancer Support UK Yahoo! group - basically a collage of her RAI experience at Bristol Hospital.

I have to admit that I found it quite depressing, as my RAI is coming up next month and I get stir-crazy quite easily. It must be done though, obviously :)

cut for your convenience!Collapse )

..and a little about me, so farCollapse )

29th November 2007

sophiedb7:28pm: Newbie :(
In 1999, aged 45, my mum was diagnosed with thyroid cancer after a check for hyper/hypothyroidism. I can't remember which, since her thyroid was whipped out before anyone could say boo.

Three months ago, she noticed a lump on the side of my neck. This was drained, ultrasounded (sp?), MRId and finally removed last week, all on the basis that it was a branchial cyst. Unfortunately, histology tests on the tissue have shown otherwise. I am 30, with a 5 month old daughter :(

Thankfully I know that thyroid cancer is one of those with a good prognosis, due to my mum's experience, but it's still a shock. I found out this morning, however she's on holiday - interrogation will have to wait until her return this weekend (though I have told her by phone).

Anyway, they've pencilled me in for 17 December with the odd test and scan before then (I presume). Yay, NHS.

Hugs to you all, and apologies in advance for future interrogation :)

Edit: if anyone has experience of radioiodine with regards to breastfeeding, I would love to hear it. Thank you.

22nd October 2007

rebellionlies2:38pm: Chernobyl
I've done a lot of research/reading about Chernobyl since being diagnosed with thyroid cancer at 17. Thought I'd share a write up / sound bite from NPR's website for those interested:

NPR: Chernobyl Copes with Fall Out, 20 years later

Exerpt:
"The accident's most prevalent long-term effect was the spread of thyroid cancer, especially among children. Government estimates include a total of just over 100 cases of thyroid cancer among children attributed to Chernobyl.

But Liudmilla Kamagortsova, a legislator in Russia's nearby Briansk region, says the real number is actually much higher. Kamagortsova says hundreds more thyroid cancer cases have been registered in her region alone because the government hasn't taken measures to deal with the disaster's long-term effects.

"It was an atomic bomb -- I can't call it anything else -- that spewed radiation over 74,000," she says. "And it's all still there, untouched, except for the most minimal measures." "

6th September 2007

dottdotti7:30pm: new member
hi.
So my name is ash, im a girl, im 22 on the 10th of this month.

in january i was diagnosed with hyperthyroidism.
in febuary, after doing a routine cancer check, cancer cells were found in my throid.
[although the dr.'s office refuses to tell me exactly what that means, in essence, the cells for cancer are there, but they cannot confirm there is actual cancer.] They recommended more tests and thyroid surgery.

After my experience with that test, which was done with one of those 6 inch needles and they extract pieces to test, i am very weary of continuing treatment. I know that it seems stupid and irrational to say that. But I havent been back to the dr's since the test [i got my results over the phone, again maybe why they wouldn't say if cancer was present.] I have never been a fan of being at the dr's. mostly because i spent a lot of time there as a kid because i have really bad acid reflux disease, which i also leave untreated and has been doing better than when i was on treatment. [i did treatment when i was 14/15, stopped.. and im 22. i deal with it every day, but i know how to cope and it stops me from being on medication like xanax.]

basically, i was wondering if anyone had ever heard of, had experience with untreated hyperthyroidism and possible thyroid cancer?
Also, have any of you done the thyroid surgery? what are some of the ups, downs? things to be careful of?

i know it sound preposterous, but i'm an anti-prescription medication type of person, doing more the holistic bit. i dont even take tylenol. and the thought of pills every day for the rest of my life really irks me. enough to flare up my depression to all sorts of ugly proportions. Let me also note, that as a kid, i was kind of chunky.. 5 foot 3 and 160 lbs. I lost most of that in college and have managed to keep it off. It helped my depression so much, it was amazing. Amazing what a little self-esteem boost can do.
in essence, i dont want to give that up and i have read a lot about hyperthyroidism treatment that will essence slow back down your metabolism and can lead to weight problems. is this true? what are your experiences?



thank you for any bit of advice you can offer my way.

disclaimer
***please, understand, my choice for non-treatment is something that my family understands and supports as a decision i made because of who i am and the beliefs i hold. I am not asking you to tell me that its a horrible idea. i am asking for facts, for stories, for what you know. I am obviously interested in learning what i can about my situation. so please. do not pass judgement on my decisions. thank you.****
Current Mood: curious

2nd July 2007

folkstar6:15pm: Hopefully someone has information...

I just had a follow-up ultrasound done -- my endo is trying to avoid doing radiation/WBS as to limit any exposure.

My US results said ".7cm soft-tissue mass identified on left side of paratracheal region in the thyroid bed. Cannot be identified as not being thyroid tissue"

I had a total thyroidectomy in 2003 for Follicular Carcinoma, and have been trying to figure out what else this could be. Are there other options? My PCP said I should get a FNB, but I can't get into my endo until July 30th. Which is 2 months after getting the US done. If by chance, this could be a reoccurrence, wouldn't they want to see me sooner then 2 months??

I'm in need of help... and possibly a new endocrinologist in the Phoenix area.

Thanks everyone!

5th June 2007

la_bellisima3312:53pm: dosage and weightloss

Over the last 3 months I’ve joined Weight Watchers and lost almost 35lbs so far.  I am still very overweight (240lbs), but the weight is coming off steadily at 1-3lbs a week, and I’m starting to wonder about my medication dosage.  I haven’t had bloodwork since October, and am not scheduled to have it again until August (my doctor’s office has major scheduling issues).  I could potentially lose another ~20lbs by then…should I be worried that my dosage of levothyroxine is getting too high since my body mass is lower?  I’ve got a history of thyroid cancer, so I’m intentionally kept a little hyper….could the weightloss push me over the edge? 

 

I’m not noticing any symptoms, but it has me wondering just the same.  Should I just assume it’s okay unless I start noticing some symptoms?  Thanks for any advice!

22nd May 2007

estelwen10:34pm: Hi, I'm new.
I was diagnosed this afternoon (about 5 hours ago, actually) with early papillary thyroid cancer. I'm young (22) and they caught it early, so everything should be alright...right?
I just moved, so it was my old doctor calling me. He is going to find someone where I am now and give me their name. He has recommended a full excision of the thyroid followed by radioiodine. Can anyone recommend someone good in the Albany NY area?
I'm reassured by the success rate he gave (99%), but I'm still nervous. I just moved to a new place where I don't know anyone and I get this!
I'm also worried because I moved here for graduate school, and I'm supposed to start my summer job on campus tomorrow. How/when do I tell them this? Obviously they need to know (as the surgery will take place, hopefully, in the next two or three months). "Hi, I'm [name] and I'm here to start work; by the way I just got diagnosed with cancer" sounds kinda stupid.
Any advice for a nervous and lonely person?
Current Mood: nervous

17th May 2007

rebellionlies12:32pm: x-posted
I was curious, for those of you who have had thyroid cancer, what sort of experiences have you had with employeers? I'm currently interviewing for a lot of jobs (I'm graudation college a week from today) and I do not plan for it to ever come up in the interviewing process, but, I assume that eventually it would, possibly during discussion of health benefit coverage. Have you guys have been treated differently once employeers/co-workers have found out? I'm usually pretty open about having had / still struggling with completely riding myelf of thyroid cancer. I'm not going to say it identifies who I am as a person, but I am definitely a different person than before I was diagnosed at 17. It has definitely changed me for the better, and I'm not usually reluctant to share it with those close to me.

Also, I've heard small businesses are usually not known for their steller health benefits, but I'm currently interviewing with two rather small companies. I think it would be a shame to turn them down if offered the job, because I'm very interested in working with both companies. I know health care fields are usually the best in terms of coverage, but my career goals don't really have any relations to healthcare. Are there any health insurance co. anyone has dealt with that you thought was perticularly good? I realize that's sort of an oxymoron...but I'm looking for the lesser of evils.

Any other pointers?

2nd March 2007

artforgod12:10am: Thyroglobulin antibodies
I discovered that my thyroglobulin is less than 1 BUT I have a too high level of thyroglobulin antibodies. Any helpful commenst about what this means for future monitoring. or why it happens?

15th February 2007

gilbertgurl7:48pm: What can I expect?
I'm post-op TT by 22 days... In the next nine days I will finish my prescription of Cytomel and start the low-iodine diet in preparation for my iodine radiation treatment. What can I expect to feel like off of thyroid medicine? I'm actually getting pretty nervous and my search for personal experiences didn't come up with much.

Does anyone have links or stories they'd like to share with me? The more I know the more comfortable I will be with what I'm facing in a week... Honestly, I'm scared to death... Please help..
Current Mood: scared

11th February 2007

hntr1:03pm: Researching Levothyroxin VS Armour
Ok, I've been taking Levothyroxin for a few years now, and still feel as though the T4 levels are correct, (Actually they're right on the money.. 1.0 if I remember correctly...) But anyways... I feel as though I could use more energy..

So I've started checking into my T3 levels, and if Armour would be more beneficial.

They say it's all personal preference, which I understand.. I mean isn't everything including most research.. it's all typically they point of view from the perspective of the person who performed the study.

So I'm thinking I need to find a few pro's and cons for both to get a decent study going.. has anyone here any suggestions? or perhaps findings that you came up with?


X-posted to:

thyroid
Current Mood: curious

1st February 2007

gilbertgurl10:42pm: First Post Here - Papillary Thyroid Cancer - Frustrated
Just wanted to say hello - was recently diagnosed w/papillary thyroid cancer. I'm Post Op of a total thyroidectomy by 9 days. What now? I have follow-up appts next week but honestly, I feel like none of my healthcare providers are giving me ANY info what-so-ever. So far I've seen the endocrine twice prior to surgery, my surgeon twice and THAT'S IT. When I ask questions or call with extremely high blood pressures, etc, they all pass me on to someone else. It's extremely frustrating and I feel like I'm getting no where.

I'm not even sure as to what questions I SHOULD be asking. Any ideas or suggestions as to how I can get my docs to take my individual concerns/symptoms seriously? Anyone else exasperated with how they have been treated by their MDs?? Argh, their arrogance is killing meeeee!!!
Current Mood: frustrated
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