It's a 25% chance of cancer and I dunno what to do

[Justi_has_a_booboo]

My Labs to date: 98% perfect
Cortisol- ALL PERFECT
TSH-Thyroid levels- ALL PERFECT
Testosterone - yeah that was checked too- ALL PERFECT
cholesterol the good the bad and the other- ALL PERFECT
liver and kidney function- ALL PERFECT
glucose- ALL PERFECT
iron levels- ALL PERFECT
White blood cell counts- ALL PERFECT
DHEA Sulfate-ALL PERFECT
FSH-ALL PERFECT
17 Hydroxyprogesterone-ALL PERFECT
CBC-ALL PERFECT
Antibody test 1200+ no so perfect
I have ALL the symptoms of hypothyroid but he says something else other than Hashimoto's is causing my problems.
There were more tests done....after 10 more vials of blood...he said all my levels were good. His diagnosis (PCOS)Polycystic Ovarian Syndrom mixed with Hashimoto's.
And now the 4 FNA tests on the multi-nodular goiter in my neck (one on the isthmus with is 2.5-3cm)
This is what the lab wrote.
Diagnosis:
Follicular lesion, cannot exclude neoplasm.
The specimen is cellular and consistent of follicular cells in sheets and microfollicles.
Hurthle cells are also present.
Colloid is scanty.
Features of Pappillary carcinoma is not seen.
The differential diagnosis includes adenomatous hyperplasia and follicular neoplasm.
He told me to go have surgery, remove all of my thyroid and then come back for Synthoid. Which I am scared of because at 39 I am almost completely gray haired and my hair is falling out. Is this going to be better for me or worse? I asked well won't Hashimoto's kill my thyroid any how, and he answered while working on his computer under his breath, well not all the time. Who knows. (What the heck!?) I dunno, I am afraid and unsure. Anyone have advice please?

[Justi_has_a_booboo]

I do not have any brothers or sister. It's just me. Thank you for sharing your story with me. My largest nodule is on my isthmus of my thyroid...right smack in the center of it all. I'm guessing it they feel the need to remove it, it will be all of it. I don't mind. My way of thinking, is if it has made me feel this terrible already, I would rather have it be gone and live with taking medication. As long as I can keep my parathyroids and not worry about having cancer, I will be fine.

[MANmom]

I had much the same as you, all tests were within normal levels, but high antibodies, suggesting Hashi's...sometimes this is also an indication of cancer.  It was in me.  I had one lobe with three nodules removed for many of the reasons listed here, mostly hoarseness and swallowing issues.  I am a singer, so this was important.  This is the lobe that they did a biopsy on, they found "benign follicular clusters" but I still had cancer.  The cancer was in the thyroid tissue, not the nodule.  After removal of the rest of my thyroid with one nodule, we found a large tumor on the left side.  My biggest tumor was 1.5 cm, the rest (at least 4) were less than 2 cm.  For me, 1 in 4 chance was good enough for me to have at least 1/2 removed, that way we could finally tell for sure, and I had hoped to still have thyroid function.  If you have good insurance and can afford to do two surgeries, you could have 1/2 removed, the half with the nodule, then you would finally get your answer. Then if it is benign, you have a good chance that your 1/2 thyroid will still function.  By the way, I have 8 brothers and sisters, my older sister has the same cancer (she found it after I insisted she be checked, had Hashi's symptoms and all tests were normal), my younger sister has nodules and is being checked for cancer, and two of my six brothers (so far) have Hashi's as did my dad when he was alive.  If you have a family history of thyroid disease, you should tell your siblings.

[Justi_has_a_booboo]

He said I am not hypo so I do not need meds.

Here is why I went to the doctors, again...to complain. I moved across county, away from the last set of doctors who treated random symptoms.

Vertigo
dizziness
ringing in my ears
hair loss
Curly hair going flat and dry
skin tags
dry skins/discolored skin areas
acne (i'm 39)
random belly weight gain when I have always been thin (I now look like santa)
ache in my legs
periods with lots of clots, random starts and stops, very heavy
random lumps in my breast then my armpit
constant cycle...sinus problem, sinus infection, bronchitis or the flu or pneumonia
tremor in hands
blood pressure usually up now more than down
heart palpation
miscarriage
depression
take a deep breath and feel hands and needles in my hands and feet
migraines (pain and pressure build behind my left eye to where i have to cover it for hours)
cold all the time
hot flashes or night sweats
voice is getting more hoarse
fatigue oh how i hate you fatigue (red bull is my new best friend)

Gosh any tips on food or meds to take or not to take would be awesome. I got zero from this Endro. Basically, he said go have this blood work done about 2 weeks after you remove your thyroid and then see me about a week later. Nothing. He's a nice man, but I think he feels as long as he knows what's going on, I don't need to know ****. :( I looked for new Endros today. My primary doc told me any general surgeon could...and I cut him off and said no...I will talk to you later with the names of a couple of specialist who know where my parathyroids are and will take great care in making sure they stay intact! He said ok I'll call you later....still waiting on his call.

Thank you all so very much!! I know nothing so feel free to treat me like the novice that I am. All information and suggestions are appreciated!

[TamraW]

I don't know the lab ranges for your T3, but I can tell your FT4 is low. For Hashi people, it really should be closer to 1.6. You should be taking some sort of thyroid replacement hormone. Are you???

The TSH is not terribly high, but it can be dropped to 0.5 or lower if you find a doctor who treats your symptoms and your frees, not just TSH.

If you elect for this surgery, and you already know I would get it, then you will be taking thyroid replacement meds.

Why does the doc say something other than Hashi is causing problems? I had endometriosis on my ovary two years ago, which is a common Hashi problem.

Here's my Hashi symptoms:

Mild weight gain even while dieting
Extreme fatigue/napping
GERD/Heartburn/chest pain
Mostly constipation mixed with diarrhea
Depression/anxiety/forgetfulness/brain fog
Abdomen swells for no apparent reason
Neck/jaw pain/swelling/pressure
Scratchy voice
Migraines, dizziness and back of neck/head pain
Very cold feet and hands and sometimes a feeling like ants are biting my feet
Endometriosis (2 years ago – cured after one year of birth control)
Irregular/heavy periods and menstrual-like cramping in between periods
Ear pressure/pain
Voice is sometimes hoarse
Knee/joint pains – finger swelling and pain
Rash or scaly skin on neck, head, chest, chin, nose, right armpit down to waist
Dry eyes and sometimes soreness
Occasionally I have a mild hot flashes or chills
Night throbbing/pounding in ears that wakes me
Toe nails feel painful and brittle
Muscles in legs sometimes go wobbly and weak when I am standing
Tingling feet/hands/lips
Body temp ranges 97-97.5
Hair clumps in shower
Shaky hands
Blood pressure changing
Feeling like heart is beating fast
Decreased sex drive


BTW - Fish is good for us. We're the hypos. It's the hypers who shouldn't have the iodine. I drink milk. I haven't heard anything bad - yet. Soy can interfere with the absorption of our thyroid meds.

:) Tamra

[cynlynne]

Hi,
I'm glad that you are leaning toward having the surgery.  It is better then waking up every day thinking "I hope I don't have cancer, but I just don't know."

My mood hasn't really changed since the TT, although I was on meds and was pretty well balanced out before the surgery.  My surgeon felt that my thyroid really wasn't functioning at all so I'm not sure how much things really have changed for me since surgery.  I do get tired really easily.  That could be just because I'm recovering from surgery and my body adjusting from synthroid to cytomel.  I've heard that it can take a while to adjust the meds so that your body is getting just the right amount of the thyroid hormone.  I am seeing my endro on the 21st of Oct to discuss RAI so I know that meds won't be adjusted until I'm finished with that.  

Like I said before you really do need an experienced surgeon.  I refused to go to a general surgeon.  I was scared of the parathyroids being disturbed or just being removed.  I was also very nervous about my vocal cords being damaged.  I was lucky to have a friend who works at the Huntsman Cancer Hospital here in Utah and recommended a couple of doctors who only perform surgery on the head and neck.  I feel that he did a fantastic job!  He was able to remove it without any problems to the parathyroids or the vocal cords.  He did say that my thyroid was so enlarged that the muscles had attached themselves to the thyroid.  He had to work with each muscle and remove it from the thyroid before he could remove the thyroid itself.  I feel very blessed to have the surgeon that I did.  

I have learned a lot from this forum.  There are a lot of people here who really know their stuff.  I have read many different posts which have answered several questions.  One good suggestion that took was to write down all of my questions before going to see the doctor.  I ask them all and take notes (after my pathology report came back I had 3 pages of questions!)  A good doctor will listen to you and take the time to answer them in way that makes sense to you.  If he won't take the time to explain them, I'd find a different doctor.  You also might want to take your husband along to see the surgeon.  I think that it is important that you both feel comfortable with the person who will be preforming the surgery.  

Just remember that you have a 25% chance of it being cancer, but it does not mean that you for sure have cancer.  Another way to look at it is that you have a 75% chance of it being cancer free!  You will never know until you have it removed.

Best of luck to you!  I know it is a scary situation to be in, but remember that there are a lot of people who have been there before you and will support you through this.  Let us know how things turn out for you.

Cindy

[Justi_has_a_booboo]

Is it too soon to say I love you! I had no clue. I don't know why he didn't tell me anything. I found one of my labs it states:
T3 uptake 30
T4 free 1.1
TSH, 3rd generation 1.94

I was told these are perfect and there was nothing wrong with my levels.

I'm reading in here and I'm really getting blown away at how much information is here. I have a sinus issue all the time Claritin-D & Excedrin are taken to control my problems. I love to eat fish. I don't allow milk, I use soy.

My point is, I'm reading where people day I should not have those things. Dang it why wouldn't he tell me that?

My

[TamraW]

Parathryoids are four little glands, two next to each thyroid lobe. They are not related to the thryoid, other than they are neighbors. They  regulate calcium in your body.

I have read that some doctors remove the parathyroids and transplant one somewhere else, like in the arm. You only need one half of one to regulate your calcium. www.parathyroid.com explains it all.

You should find an experienced surgeon and then discuss parathyroids, find out if they can be saved or maybe one transplanted. Otherwise, you will be taking strong calcium pills forever.

Despite the parathyroids, I would have the TT. Thyroid cancer has a HIGH cure rate, so tackle it now! Especially if you have little ones. I have a little one, too, and I want to be here for her for a long time.

Also, speaking of your little ones, keep an eye on them over time. Hashimoto's can be hereditary. It is more common in women. Most of us don't develop in until after birthing age, but it has happened in children - know the signs, constipation, depression, fatigue, etc...

My mom had a partial 13 years ago. I can't even see her scar.

:) Tamra

[Justi_has_a_booboo]

Thank you for your replies. I'm scared to death and clueless. Four weeks ago, I just was doing what I always do, dealing with all the symptoms that other doctors told me was nothing. This new doctor felt a goiter and I thought great! Finally an answer to why I feel awful. He said all my labs were perfect, then made me get an ultrasound on my thyroid. Then sent me to this endro who won't treat me. He said if it was just Hashimotos then he would not give me any meds and just keep checking my goiter and nodules. He's very dismissive. I told my husband I am switching to a new endro after I have the surgery. I refuse to go back with him. Guess I will suck it up and have the full TT. I can't thank you enough for replying. My husband is a cancer survior. I hope I do as well as he did. I have little ones, I don't want to be sick.

What is your mood like after? Are you ok after a TT? What are parathyroids?

[cynlynne]

Two weeks ago I went in for a TT.  I am 40 and in good health except when it comes to my stupid thyroid. I had a  FNA and it read atypical follicular cells.  I was right where you are now thinking "Really?  Do I really need surgery?" I had the FNA done last January and during that time I had four different doctors look at my pathology report hoping that one would tell not to take it out and to just keep a close eye it.  None of them did.  They all told me that I had a 20-25% chance of cancer and that it should be removed.  I finally listened to them and had it removed.  The pathology report came back showing 15-17 regions of papillary cancer.  I guess I'm one of the lucky ones--well as lucky as one can get after hearing the words "you have cancer".  I got it removed before it spread, it had all remained in the thyroid.  Each of the regions had clean margins.  I'm glad I had it removed before it became a bigger issue. My  suggestion to you would be to get it removed.  Even though it is very scary the surgery wasn't all that bad.  My scar is healing and really it is a good time of the year for the healing of the scar.  Scarfs are in fashion so it is easy to hide plus it keeps the sun off of it.  Bonus, it is almost the time of year for turtleneck sweater!  I'm hoping that by spring it will be less noticeable!  :)
I would agree with Tamera W you need to find a surgeon who has a lot of experience with this type of surgery.  I also agree with her about getting on meds.  Even though I hate having to take them daily I can't imagine how I would survive without them.
Good luck with your decision.  I know it is a hard one to make.  

[TamraW]

First of all, What is Perfect TSH? I have a 'normal' TSH but I have Hashimoto's. Ideally, your TSH should be surpressed to a 0.5-1.0, meaning if it is above a one, then why not treat you with Synthroid now?

Second, why no FT3/FT4 tests? What is wrong with your doctor? The sad fact is that many endos don't know how to properly treat Hashimoto's, and you have to be your best advocate for your health. Arm yourself with knowledge about Hashi.

Hashimoto's commonly causes nodules and goiter. What I want to know is, are you on any Synthroid now? And if so, why not????

Hashi needs to be treated - NOW!

As far as surgery is concerned, I would have it done if I were in your position, especially with a 25 percent. According to one thyroid surgeon, his cancer patients are 30 percent Hashi.

Here's his website.

http://www.thyroidcancer.com/hashimotos_thyroiditis.htm

If you elect to have surgery, I advise to shop for a surgeon. One who does many of these surgeries and who will do his/her best to keep your parathyroids, otherwise, you will have no parathyroids and you will also be taking heavy calcium supplements for the rest of your life.

Hashimoto's will eventually kill the thyroid, but then you have scar tissue and it could constrict your wind pipe. Sometimes removing ALL of the thyroid tissue can be difficult for the surgeon, and you are left with sparse pieces, so they treat you with RAI  or Thyrogen if the biopsy shows cancer.

Best of luck to you!

:) Tamra