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SHOULD I HAVE SURGERY!!!!!!!

Surgery set for March 23rd....Advise Please

Over the past 3 years I have been going to the doctor(Endo.) about symptoms I have been having due to subclinical hyperthyroidism. I was diagnosed with Subclical Hyper-T over a year ago. I have asked about Meds but have been told that i do not meet the requirements. My endo has asked on several occasions if I want it removed. I have been through so many different rollercosters over these past couple years. Im a emotional wreck at time, daily brain fog that never seems to get better. Muscle palpatations, heart palpatations, hand tremors. The is a list of symptoms I have experienced off and on.I have had three ultrasounds to check the growth of my goiters and a biopsy. SHOULD I HAVE MY THYROID REMOVED? What are the pros and cons? This is my previous ultrasound results and my Lab results.

Right Lobe measures 5.7x1.7x2.6
12x9x13cm complex cystic nodule right lower pole
9x6x1.0cm complex cystic nodule right midpole

The left lobe measures 4.6x1.7x2.2cm
15x9x1.3cm complex cystic nodule lower pole

Conclusion-Bilateral thyroid nodules
9/15/2006
Free T4        1.58(ref .80-1.90)
TSH-3rd Gen    .162L(Ref .400-4.00)
Total T3       114.00(Ref 80.00-200.)


3/6/2006
Free T4        1.41(ref .80-1.90)
TSH-3rd Gen    .195L(Ref .400-4.00)
Total T3       108.00(Ref 80.00-200.)


19 Responses
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Avatar universal
I will be cancelng my surgery today,I have found a couple more Endo's in my area for a 2nd and 3rd opinion. I would like to talk more with you abl, my email is um_21derfull***@****.




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Avatar universal
abl
Hi again, I am back and exhausted, but it was a fun day!

Anyhow, first I should preface this by asking if you would rather I email you personally, or do you prefer checking back here everyday.  I have a few questions, but either way is fine with me.  I personally do not feel comfortable listing my email here, but if you don't mind, we can do it that way.  

So, based on my Doctors experience, she healed herself by
1. making sure she had optimal nutrition, through foods and vitamins.
2. yoga, breathing exercises, stress reducing exercises.
3. guided meditation's.
4. consistent exercise.

Now, I am sure all of that sounds pretty vague, but I have to over simplify here, otherwise I would be typing forever.  I do have recommendations on nutrition (by that I mean getting teh right amounts of all of the recommended RDA's).  Yoga is great (once you find a teacher and method you like!) and if you can't find a place nearby or don't have cash to buy a video or take classes, you can find yoga video clips on the internet for free even, ie Fitness Magazine website has them.  breathing exercises there are many, but one especially effective one (my Dr. uses) from Dr. Weil that I just learned yesterday called teh 4-7-8 exercise.  There is a great stress reducing exercise called Progressive muscle relaxation.  Laura Day's, "the Healing Cirlce" is great for guided meditation.  "The Secret" is a great DVD or book everyone should own, wish I had this at your age!!!  This will help all areas of your life!!!  And walking outdoors, running, swimming, or biking are all really great exercises, which if can be done outside are wonderfully beneficial.  Inside is better than nothing too, especially with some really great music that makes you happy!!!!!

So, with all of that said, let me know where you want to start, or if you want to tackle it all at once!  It's up to you now, so you let me know what you would like to do!

Take care!

Abl








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Avatar universal
abl
No that was not too much information!!!  I am just utterly fascinated by it, and really wondered, my family was part of a Cancer Cluster in Garden Grove, CA.  We even contacted Erin Brokovich's office, and were told we could all sue, (people just don't want to get that involved though!)

Anyhow, I'm sure you know about my fascination with Iodine, if you don't, I'm not going to really talk about that, but I will say that I get EVERY article that has the word Iodine in it from google.  Anyhow, I was amazed to learn from several different newspaper articles that people are given potassium Iodide pills who live near Nuclear reactors here in our country, in case of a leak.  They had learned this from the horrible accident in Chernobyl and the high incidence of thyroid cancer after.  So, because I didn't know where you all lived in Utah, like if you were near a reactor, I was wondering why you all hadn't been given the same pills other states give out.  Apparently it protects the thyroid from fallout.  I had not known that before I read it recently.

As far as environment vs genetic, do any of your neighbors through the years have similar problems?  In my grandparents track of homes, we only knew one woman who was not diagnosed with cancer!!!  One!!!  All of the neighbors we knew got it, except one.  I still can't believe that.  And all but two died.  From 28 year olds on up!  My Grandparents were only in there 60's when they were diagnosed, and died at 67 & 71.  Very sad, wish it all could have been so different, and that people were not so interested in money, and more into protecting people!!!

Anyhow, I had just read another article about a community here in Ca, trying to budget for the pills to protect their communities thyroids (oh that mighty dollar) and it reminded me about wanting to ask you those questions.

take care you!

abl
Helpful - 0
158939 tn?1274915197
Three of my sisters and I have papillary carcinoma.  The other sister was precancerous; as was my daughter.

My sisters and I all grew up in a rural area of Utah County (just south of Salt Lake).  "Officially" Utah County and all areas north of it were not affected by the radioactive fallout.  (sure, radiation respects county lines)  

All of us were born AFTER the nuclear testing (I'm the oldest and I was born in 1966).  However, we grew up drinking well water and eating a lot of produce from the garden.  My mother has a *huge* goiter, is hypo, and has tons of suspicious nodules but prefers to go the herbal route.  (Note sound of me banging my head on the wall here)

My daughter grew up in the suburban areas around Salt Lake City and was only exposed to my parent's well water on very limited occasions.  My son's thyroid looks wonderful.

My family is in a study conducted by the University of Connecticut Health Center to see if there is any genetic link.  We haven't heard anything yet (it's been about 2 years since we all sent in vile after vile of blood).

Everything is leaning a bit more towards hereditary than environmental (because of my daughter) but there is a chance that something environmental changed something in our DNA.  

Wow - how was that for too much information?  :-)
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Avatar universal
abl
Hi...I couldn't agree with your post more!!!  

I have been meaning to ask you a question since reading an article recently.  You have said that you and many of your family members have had thyroid cancers, but in another post a while ago you said something about living down wind of testing sites, or something like that!  Do all of you live in the same area, and do you all think your thyroid cancers came from the environment?

Once you answer those I have more questions, but I'll just start there for now.

Take care!

abl
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Avatar universal
abl
Okay you, I know this sounds so unfair, but I have to run right now, I am soooooo sorry... but I wanted to write you back quickly to let you know, you are not alone!!!!!!!!!!  we will help fight this with you!!!!!!!!!!  and I will help you get any answers I can!!!  Postpone your surgery, and let's stop and figure this one out!!!!!  If my doc can do it, you can!!!!!!!!!!  

I will post later hopefully, and we can get an idea of things that you can start doing now!!!!!!

It's just that your Dr, sounds like my old one, and it's almost like they do what is easiest for them, so they don't have to deal with you anymore.  

Take care!  I am still here, so if you'd like, start googling things about shrinking  hyper/goiter or stress and your thryoid, stuff like that!!!  

Also, am so curious...how old are you?  I realized you didn't sy ain your first post, and I just assumed early 20's.  am I right!

We will talk very soon!!!!  

Abl
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Avatar universal
I like abl's comments too...don't rush to do an irreversable thing....I didnt have a choice with cancer but you do...
Lisa
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Avatar universal
I havent tried any alternate methods to shrink my goiters, my doctor hasnt given any information on what to do besides come in and be checked every six months. My lifestyle hasnt changed since being diagnosed. I do not know what i can do to bring up my TSH( to normal levels)? i dont know how to help aleviate my symptoms...Im feel lost in the world of subclinical hyper-T..Thanks ABL
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Avatar universal
oh yeah I am only 23
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Avatar universal
abl
Hi you!

Wow, okay not a popular opinion I am about to give here, but I would wait!!!  It has been my experience in life that my best decisions have come from listening to my inner voice.  Something inside you is saying, NO... whether that is from a healthy fear for the huge chnage your body will be going through and of surgery in general, or it is your bodies way of telling you, don't do it, there are other ways to fix it.  Ya know, a second opinion from a compassionate and great doctor (I know that is very hard to find!!!!! especially with HMO's now, but you can find one!!!!) would be my advice.  That and cancelling the surgery.  Once your thyroid is gone, it is gone.  Yes, that original problem is gone, but then new ones you don't know about, that are unforeseen now, may arise!  We need our thyroids!!!  So in my opinion, only if taking it out will save your life, I wouldn't do it.  You wanted opinions, and this is mine.  I think you are pretty young, yes?  Being on med's for the rest of your life is a huge pain in the ass.  Read all of the posts here about how the women can't stand it when there med's have to be changed, and how long it takes for them to feel good again, thyroid meds any hormone meds will fluctuate throughout your life, and from what I understand and have read here, it's not that fun trying to figure out the correct dose!  

Also, just yesterday my new Dr (Dr. Jolanta Lukawski), and I were talking about her goiter and how she gave herself hyperthyroid and Graves from eating a huge (and I do mean huge) bowl of steamed broccoli everynight for a year, as an intern before bed.  She said when you are an intern they want to "fix" everything fast, so they can get you back on your feet again and back to working.  When they said Okay we are going to give you RAI and etc..., she said (and her words here, not mine), "screw you!"  So, I said how did you get rid of your goiter and problems then.  She said, I quit my job at the hospital, moved to California,  started to learn how to relax more, started getting way more omega 3's in her diet, and she said basically, "I took a year off from life."  To update you on her life and health now, she is 38 years old, her healthy baby girl just turned one about a week ago, her family practice is going great, and last year she was appointed the Medical Director of the Women's Wellness Center at Hoag Hospital, in Newport Beach, CA (where we met).  She still has her thyroid, and keeps an eye on  it, but got rid of her goiter, and the graves and is obviously functioning very well.

Yes this is my Doctors story, but I should think to someone in your position, it would be very inspiring!!!  

Have you been trying anything else to shrink your hyper/goiter...ie stress reduction (doc above believes that is a huge contributor), guided mediations, omega 3's from seeds, nuts, supplements, and eggs or wild salmon?  Exercise like yoga, and waking or running, eating a healthy diet and good supplements?  I would try those things first for at least 6 months, then schedule another ultrasound and see if that helps.  I would always try the less evasive route first!!!!!!!!!  

Good luck to you & I sure hope this helps you, and at the very least has provided you some hope with your problem.  If you have any other questions, I am here!

Take care you!

abl

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Avatar universal
abl
We posted at the same time...spooky...and I really will get back to you!!!!!!!!

please take care until then, but it will be more like this evening (west coast time).

bye for now!

abl
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Avatar universal
NO, don't have your thyroid removed. I have lived without a thyroid since 1990 and it is no walk in the park. If I do not take my desiccated thyroid (Armour Thyroid), I will not survive. This is how it is for thyroidless people. It took me over a decade to get well  because I was on synthic T4, which is useless to thyroidless people, and not exactly useful for many people.

Goiter/nodules are usualy due to iodine deficiency.
Have any doctors given you an iodine loading test or treated you with high dose Iodoral or Lugol's Solution?

ATD's to make you hypO then desiccated thyroid dosed by symptoms? How about possible adrenal support?

These are the things smart doctors do to shrink goiter/nodules quite sucessfully.

Perhaps you might consider seeking out a better doctor? Ask areound at your local compounding pharmacies for whic doctors prescribe "both" Armour Thyroid "and" BHRT (natural hormones), because those are doctors who seems to know more about these things than traditional mainstream "drug and cut" doctors. Protect our thyroid gland with your life, because without one your entire life will change...forever.

www.altsupportthyroid.org/dt.php
www.armourthyroid.com
www.stopthethyroidmadness.com
www.laurapower.com/iodinedeficiency.htm
www.optimox.com/pics/Iodine/opt_Research_I.shtml  
www.optimox.com/pics/Iodine/loadTest.htm  
www.breastcancerchoices.org/loading.html
www.helpmythyroid.com/IOD4.htm
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Avatar universal
Thanks..I will be waiting to hear from you. I really need advice, alternate method.....Thanks to everyone for giving  me feedback on your experience with thyroid problems and surgery.
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158939 tn?1274915197
You will have as many people tell you to get it out as you will tell you to wait.  However, none of us are YOU and none of us are psychic and know whether or not your nodules are cancerous.

Has your doctor(s) run an uptake scan to see if your nodules are "hot", "warm", or "cold"?  Did they find any calcification on or in your nodules?

You need to find out as much information as possible about your condition then sit down and discuss it with your doctors.  Then get a second, or third, opinion.

Here are some good reference points to start from:
http://www.endocrineweb.com/
http://www.cumc.columbia.edu/dept/thyroid/

There is a lot to be said for following your "gut instinct" - I did as did all of my sisters and 4/5 of us have papillary carcinoma - most with SMALL complex nodules.

Just make sure that you are listening to YOUR gut instinct, not just basing your decision on other people's experiences.

For me, my four sisters, and my daughter thyroid surgery was the easiest surgery we've ever had.  That's not true for everyone though.  

Do a lot of research, talk to the professionals (not just us professional thyroid patients), then meditate or pray on it (whatever works for you) before you make your decision.  My moment of clarity came when I saw the nodule (5mm) on the ultrasound and I just had an overwhelming feeling (almost a voice inside of me) tell me it was cancer and to get it out.

Listen for your moment of clarity.
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Avatar universal
That helped me alot! I was going to put surgery off and get a 2nd opinion becuase as time pushes closer to my date, I am getting a little scared. Surgery is a big step, but I dont know of any other way since my Endo will not put me on Meds....
Helpful - 0
176838 tn?1211460374
Your "clinical picture" is very similar to mine - my TSH has always been low with a fairy normal T3 & T4.  I was started on medication over 4 years ago for my sublinical hyperthyroidism because I was symptomatic despite my "subclinical" status.  I also had multiple nodules in both sides of my thyroid and they were biopsied and were negative.  After being on PTU and tapazole for a year I went into remission meaning that my labs got better and my symptoms went away.  However, 3 1/2 years later my hyperthyroidism came back; this time w/ different symptoms so it took me awhile to realize what was going on.  I actually thought I had lupus.  During this time the right side of my neck got larger & larger - I had a goiter.  I did have problems swallowing here & there and occasionally felt like someone was pressing on my throat.  My endo gave me the choice of having it out or doing RAI (radioactive iodine) but his suggestion was the TT (total thyroidectomy) because the RAI wouldn't make the goiter any smaller and I would still have to get biopsies of those nodules for the rest of my life to make sure they weren't turning into cancer.  Also, there is a chance that I have underlying Grave's Disease (an autoimmune disease that also causes hyperthyroidism) and with RAI it can actually make Grave's Disease flare up bad.  So after waffling for a few months I finally went ahead with the TT and I am so glad I did.  After surgery my surgeon told me that the right side was *much* larger than they thought and it was pushing my airway out of the way.  I have noticed an improvement in my ability to breathe & swallow and there is no longer any pressure on my throat when I lay down.  It occurred so slowly that I never really noticed how bad it was until it went away.  So my suggestion would be to get it over & done with.  They will be able to do pathology on the entire thyroid & make sure there isn't any cancer in there and you won't have to worry about it getting larger & pressing on your airway.  You will be on medicine for the rest of your life but it's basically a supplement that is replacing something your body can no longer make on it's own - as opposed to PTU or tapazole which suppresses your body.  I hope this helps.

Rayne  
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Avatar universal
Thanks for the advice. I am still wondering is possible to have symptoms being diagnosed with Subclinical Hyper-T. My TSH is low but my T3 and T4 are within normal range. I dont understand????
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Avatar universal
here here.i have to agree.dont wait till you are having trouble breathing and swallowing.I am glad mine is out.I feel better without it.
Of course it will be up to you what you decide to do.I follwed my gut and got it out.Let us know what you decide.
Love Venora
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Avatar universal
Don't wait on surgery!  I found out that I had a multinodular goiter last June.  I was put on a low dose of Synthroid to try to stop it from growing...After 6 months and feeling like ****, the thing grew.  I had my TT three weeks ago.  The ENT says if you wait to have these things taken out, the surgeries can be more difficult.  I'm glad mine came out, because when he got in there, it was 3x the size on the right and the left was wrapped around my esophagus.  I'm just starting to feel a little more pep at week 3, but can get tired easily too.  Feel better and get the thing taken out!
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