# Perfect Thyroid Function.. Hurthle Cells?



## MamaFox512 (May 15, 2016)

Hi, I'm new! I'm a 24 year old female - I was hoping somebody had some similar diagnosis, I'll keep it short and sweet 

When finding a PCP last summer (after going a year or so without any health insurance), he found a thyroid nodule (2cm).

Initial Ultrasound: Showed a complex (but mostly cystic) nodule. The FNA came back inconclusive w/ Hurthle cells. PCP referred me to endocrinologist.

Ultrasound/FNA #2: Nodule was the same (only a few months later). FNA came back w/ benign Hurthle cells. ENDO said to have it looked at again 6 months later. ALL MY BLOOD TESTS AND THYROID LEVELS ARE ABSOLUTELY PERFECT.

So, 6 months later (March/April) Ultrasound #3: Posterior side of nodule has changed and from what I read, the nodule is almost now completely solid and the right thyroid gland is now larger in size. They are now recommending it be removed (the nodule and right thyroid gland).

My appointment with the ENT is on the 26th of this month to discuss pros/cons, etc. But with so much change in such a short period, I am just not sure what to think. Obviously I don't want surgery, but they haven't said that my chance of cancer has increased with the changes.. so why the rush?

Looking for stories similar to mine, as I am just not sure how serious to take this. I would rather obviously NOT have surgery if it isn't a huge deal. I have had to take MONTHS off of work to get this taken care of and I have 2 toddlers to support.. last thing I need is a surgery that is not needed.

Thanks!


----------



## Lovlkn (Dec 20, 2009)

Welcome to the board!



> ALL MY BLOOD TESTS AND THYROID LEVELS ARE ABSOLUTELY PERFECT.


Would you mind posting your thyroid labs and antibodies please - with ranges.

I personally would inquire about a total thyroidectomy. Easier to stabilize post op on replacement med's and no worries of nodules or cancer returning.


----------



## MamaFox512 (May 15, 2016)

I don't have copies of any of the lab work.

I don't have symptoms of hyper or hypothyroid.. or graves, hashimotos, etc. I feel 100% fine aside from having GERD/Acid Reflux.

I am on state medical insurance right now and as soon as surgery is over and I'm back to work, I won't have insurance and I wouldn't be able to afford the medication after a TT.

I would really like to avoid surgery. I can't depend on medication for 60 + years and would prefer not to.

At 24, I don't think my risk of cancer is big enough to opt for a TT.


----------



## Lovlkn (Dec 20, 2009)

Yes.

The chances of 1/2 your thyroid providing enough thyroid hormone for you after removing 1/2 is in my opinion , slim.


----------



## joplin1975 (Jul 21, 2011)

I would say get copies of everything, just so you know exactly what the reports say.

You have every right, of course, to decline surgery and I can appreciate why you'd want to keep your thyroid. It's in your best interest to get all the information. Including ultrasound reports. If the biopsy is inconclusive and the nodule is totally encapsulated, more surgeons are leaning toward leaving it alone.

That said, if you do wait, you'll need regular monitoring. If it continues to grow, it will begin to effect other structures in your neck and surgery will no longer be elective. The larger the nodule, the more complicated the surgery.


----------



## creepingdeath (Apr 6, 2014)

I'd do what the Doctors tell you to do.

If you can't afford your meds after going back to work your State should still give you insurance.

You will now be on life sustaining med's and you are a parent of children.

You need to be healthy to take care of your kid's.

You should still be eligible for insurance.

You need to talk to your state Medicaid.......


----------



## jenny v (May 6, 2012)

Did they do a biopsy after this last ultrasound? If not, I might ask for that first before deciding on surgery. If it's not causing you any physical discomfort and it's growing at a relatively slow pace (and the FNA is clean), I don't see why you couldn't watch and wait. You're probably going to have to have it removed eventually if it continues to grow, but if you stay on top of it, I think it might be okay. Of course, weigh carefully what your doctors recommend.


----------



## MamaFox512 (May 15, 2016)

Thank you all for the replies.

I live in Idaho - you can only get Medicad if you make under $300/mo. Which is why I've had to quit working entirely to get this taken care of 

I just don't know what to think. I was originally given a 2-5% chance of it being cancerous. It really doesn't bother me at all, I didn't even know it was there.

Just why, all of a sudden, do they recommend removing it when the original plan was to monitor it?

Everything I read on Hurthle cells is 50/50. Some say most are benign, while others say FNA results don't mean anything with Hurthle cells and the nodule/tissue must be removed to tell if it is benign or not. And none of my doctors have an answer :/


----------



## joplin1975 (Jul 21, 2011)

When nodules turn completely or nearly completely solid, the chance of cancer increases. Also, if its larger than ~2cms, it usually starts to become problematic (your GERD might actually be related to the nodule).

Hurthle cells are tricky. They can be benign hurthle cells or cancerous ones. They should be be able to tell you from the FNA...

Did they every test your thyroid antibodies?


----------



## Isthmus123 (May 19, 2016)

Hello, I had a similar situation nearly 2 years ago so I thought my experience with this might help.

Healthy 34 y/o female with a 2cm nodule in my thyroid. All my labs were good and I wasn't feeling sick or anything. I did 2 biopsies, both the first one and the DNA test came back inconclusive for Hurthle Cells.

My first doctor wanted me to have a full thyroidectomy without knowing if this was cancer or not. I fired him. Moving to the next one, he recommended surgery as well but was fine with me keeping the other half of my thyroid or as much as possible. I wanted to avoid surgery of course, but he and the surgeon thought I should go ahead because I have an aunt who has had thyroid cancer and because my tumor DNA did not come back benign (it also did not come back malignant).

I did the surgery. It turns out my tumor was more in the middle than it looked so they removed the isthmus of my thyroid. So I only lost 10-30% of my thyroid, something like that. The surgery was really easy to recover from and not as big of a deal as I worried about for several weeks prior! The best thing is that the surgeon said he would remove as little as possible from my thyroid and he did.

My tumor was benign. So the decision is yours- get it out to "be safe" or live with something that may or may not ever grow into something. Because of the fear surrounded with the word "cancer," I went with the surgery. I don't regret my decision. It would be so nice to still have my thyroid and not deal with hypo or sub-clinical hypo symptoms, but I didn't feel comfortable keeping a tumor in their with Hurthle Cells- which can change. Additionally, I was starting to feel the pressure of the nodule in my neck if I lied down a certain way. Let me know if you have any questions...


----------



## creepingdeath (Apr 6, 2014)

There has to be some sort of help "program" in your state to at least help with the cost of thyroid hormone if you can not afford it.

If you decide to have the surgery then you will most likely need the hormone which is a life sustaining medication.

It can't hurt to ask your State Medicaid about this.

Tell them your situation.


----------



## jenny v (May 6, 2012)

I think Synthroid is relatively affordable without insurance, too. My friend is on it and she doesn't have insurance and pays around $35 a month for it at Walgreens.


----------



## WhatHappened (Nov 12, 2015)

If you can tolerate generic synthroid (levothyroxine)... It's like $4 at walgreens.

http://www.goodrx.com/levothyroxine

And at Target too ($4 for 30 day, $10 for 90 day, but the 90 day makes no sense until your dose stabilizes)

https://tgtfiles.target.com/pharmacy/WCMP02-032536_RxGenericsList_NM10.pdf

(I would double check of course, but it can be had cheaply)

Edit: Really makes me wonder what it sells for wholesale?


----------



## MamaFox512 (May 15, 2016)

joplin1975 said:


> When nodules turn completely or nearly completely solid, the chance of cancer increases. Also, if its larger than ~2cms, it usually starts to become problematic (your GERD might actually be related to the nodule).
> 
> Hurthle cells are tricky. They can be benign hurthle cells or cancerous ones. They should be be able to tell you from the FNA...
> 
> Did they every test your thyroid antibodies?


The FNA came back with benign hurthle cells. But my last FNA was last fall and doc didn't seem to want to do another FNA because they are "inaccurate"?

They tested everything, as far as I know.. the endocrinologist wanted to make sure I didn't have Hashimotos and all that other stuff, which I didn't.. everything came back fine.

And I have had GERD since I got pregnant with my first child in 2011. Probably even before then, I've always had heartburn 

I'm just torn on what to do.


----------



## webster2 (May 19, 2011)

Did you have any antibody testing done? Hurthle cells can indicate Hashimoto's too. I can understand your dilemma. Good luck to you.


----------



## MamaFox512 (May 15, 2016)

*UPDATE:

I saw the ENT; he told me it was up to me.. I could schedule surgery or monitor every 6 months. He said if there is any change again in 6 months, he definitely recommends surgery.*

* I recently quit smoking though so I'm hoping that helps slow any growth.

Thanks for all your help. *


----------



## WhatHappened (Nov 12, 2015)

I was given the same decision in a way, FNA with frequent monitoring or just take it out. I chose to keep it for now. I am not sure it was the right decision, but my FNA came back as benign (and to answer one of your earlier questions, yes, they some times come back as indeterminate). I don't know if I made the right decision or wrong one, but I may feel differently after a couple of ultrasounds and another FNA if it comes.

In any case, I'm glad you seem to have found a Dr willing to share information with you and different approaches. What is your instinct at this stage, what way are you leaning? (I'm guessing not doing it, since you hope no smoking means slower growth. I have no idea if that is true)


----------



## MamaFox512 (May 15, 2016)

WhatHappened said:


> I was given the same decision in a way, FNA with frequent monitoring or just take it out. I chose to keep it for now. I am not sure it was the right decision, but my FNA came back as benign (and to answer one of your earlier questions, yes, they some times come back as indeterminate). I don't know if I made the right decision or wrong one, but I may feel differently after a couple of ultrasounds and another FNA if it comes.
> 
> In any case, I'm glad you seem to have found a Dr willing to share information with you and different approaches. What is your instinct at this stage, what way are you leaning? (I'm guessing not doing it, since you hope no smoking means slower growth. I have no idea if that is true)


Ugh, I am really torn about it. I usually go with my gut but I am getting no feelings either way.

I'm mainly scared that if it *is* cancer, I will have to undergo the radioactive iodine and isolate myself from my kids for a week or so :/ And my 2 year old is still very dependent on nursing. As a single mother, it would be nearly impossible for me to undergo the treatment.

It just sucks that they can't find out unless they cut you open! Seriously what the hell. With all the technology we have, we can't determine whether something is cancerous or not without a 48 hour lab test?


----------



## joplin1975 (Jul 21, 2011)

They've pulled waaaaaaaaaaaaaaaaaay back on the use of RAI. You have to have a pretty significant tumor and/or lymph node invasion before they use it. And, if and when they do use it, it can be delayed for a year or two. Just a FYI.


----------



## WhatHappened (Nov 12, 2015)

I'm with you.

I think in the end, the FNA was right for me, at this stage of the disease. If I felt different or if I can no longer "get/feel better" I I would feel differently.

If I ever decide to have it come out, I will complain of breathing and eating difficulties.

Did you ever get your lab levels for TSH, Free T4 and anything else they tested for (antibodies, etc). What Drs say is normal, and what is real normal can be two different things.


----------



## MamaFox512 (May 15, 2016)

joplin1975 said:


> They've pulled waaaaaaaaaaaaaaaaaay back on the use of RAI. You have to have a pretty significant tumor and/or lymph node invasion before they use it. And, if and when they do use it, it can be delayed for a year or two. Just a FYI.


That's good to know!

My mom ran into someone at the store who had a very noticeable scar from a recent surgery and she asked him. He was my age, and has the same surgeon that I will be seeing :/ So maybe my doctor is behind with the times. I do live in Idaho LOL

I have been reading up on black radishes. Supposedly helps with thyroid help and is extremely alkalizing in the body. I already planted my garden for the year so I might just buy it in capsule form and see if it makes a difference from now until my next ultrasound.


----------



## Osiris (Apr 13, 2016)

Hi and welcome! I am dealing with a Hurthle cell cancer diagnosis I just received a few days ago after my surgery. My case is similar to yours but was more advanced when we caught it. I first found the tumor myself while feeling my neck. I had the ultrasound and the tumor was largely cystic like yours, and came in at 5.2 cm, and the biopsy came back as suspicious for HC neoplasm.

I'm blessed to live in the Boston which is on the cutting edge of medical science so I've had the benefit of working with one of the best endocrinologists in the country and he recommended a total thyroidectomy instead of a partial. The reason for the total is that the other lobe of my thyroid also had nodules in it that could grow to be as big as the 5.2cm one. I had my total thyroidectomy on June 6th at Mass General Hospital.

I prayed that the tumor would come back benign but it was not. My tumor was grossly encapsulated, pretty uniform, completely contained by the thyroid, but did have some vascularization. This is when the HCC diagnosis was official. I've been doing some reading, and I also have a benefit of a brother who works in pharmaceuticals and is adept at reading research papers. He sent me some papers that are more recent studies of HCC. Here are some important points to consider:

-By far, the most important factory in survival of HCC is age. Those under 45 years old have a much much better prognosis. The research discusses a notion of hazard ratio(HR), with a higher HR being more hazardous. So if you are over 65, the HR is 22.81, while under 45 is just 1. For this reason, anyone who has HCC regardless of tumor size is considered to be at stage 1 cancer, which has an excellent prognosis (in some literature I read 98% survival rate).

-The another important factor is if their is distant metastases present. They look at the tumor when you take it out, and then if it has vascularization they recommend the RAI. This is both a treatment and diagnostic procedure that will both attempt to kill remaining thyroid cells (both normal and cancerous) and will help detect if there is metasteses. The prognosis is best if there is none. Regional metasteses has an HR of 3.69 where distant has 47.62. So that's the one you don't want to have.

-Another important factor is if the tumor has breached the thyroid. This is a lot more important than tumor size.

There are other factors that matter, but based on the studies don't matter as much as people think (ex: gender, size of tumor). There is some positive benefit to being female with a smaller than 4cm tumor and being married.

For you, you have everything going for you even if this is cancer. You are female, young, and your nodule is small. It is your choice, but the hazard ratio for those who do not have the surgery is 8.33 according to the study. So it is significant factor. On the other hand, those who do just a partial have a very low hazard ratio of 0.71.

If you do decide to go through with it like I did, an important question is if you have any nodules in the other lobe of your thyroid. If you don't, a partial is definitely a good consideration. Also, according to the research I'm looking at, their is a slight increase in risk once the tumor gets larger than 2cm. So now is the time to take it out if you want to have absolutely the best prognosis one could have.

As a funny side note, I work at an institute that is heavily invested cancer research. My endo at Mass General Hospital is collaborating with researchers at my work to study HCC. So I guess I have a pretty personal relationship with this damn cancer.

If anyone would like to look at the two papers I pulled this data from inbox me and I can e-mail them to you. I do have somewhat of a science research background and can help interpret them to an extent (though I'm a software engineer now).


----------

