~ ROLL CALL ~ Who is out there and what is your thyroid issue/condition ~

Post partial thryoidectomy 1/07 .. 2 benign and 2 small micro pap carcinomas removed.  Fully encpasulated and no lymph node involvement.

TSH is 1.7 on 88mcgs of Synthroid.  Cannot tolerate any more bcz of nervousness ,, 3mm nodule on the other side that looks on u/s like the benign one removed on other side.

1/2 the scar is really looking good .. the other half which was abscess/infected is slowly looking pretty good almost a yr later and my dermatologist says it will continue to get better daily!

Cheryl

[utahmomma]

Good thing you only asked for my *thyroid* issues  :-)

08/03:  found thyroid nodule on unrelated CT scan
09/03:  ultrasound showed complex nodule with irregular margins
11/03:   Rt thyroidectomy (papillary carcinoma 5mm)
Three sisters with papillary carcinoma, one with precancer and daughter with precancer all diagnosed between 12/03 and 12/04
12/04:  Left thyroidectomy (benign)
11/06:  100mCi of RAI  (TSH and Tg stable for years then began to climb.) "significant" uptake in thyroid bed.
11/07:  I-131 uptake scan showed small amount of uptake in thyroid bed and some in my head.
11/07:  MRI showed "nothing significant" in my head (yeah, sounds about right) - will have to have another I-131 scan next year to see if still having uptake in head

Synthroid:  .15   TSH 0.9  Tg <.4

Good thing - scar looks good.  (hey, looking for *some* bright spot out there other than the ones on my uptake scan)

[hyper_what?]

Lets see: Had my first blood panel done in May 2007 thinking maybe I was heading into perimenopause. Nope!

August 2007:  2nd blood panel: Official dx of Grave's disease by my pcp. Referral given for thyroid ultrasound

Sept. 2007:  1st Ultrasound: my thyroid is enlarged and have 2 nodules, multiple cystic and solid lesions. (Sorry, can't find report for measurements."

Oct. 2007:  Radioactive Iodine uptake scan.  Of course, it showed my thyroid taking up TOO much thyroid.  Referral to endocrinologist.

Nov. 2007:  Appt. with endo, scheduled f/u ultrasound.

12/4/07:  2nd ultrasound.  My thyroid is now: left lobe, 5.2 x 2.0 x 2.3 cm; right lobe, 5.3 x 1.9 x 2.1 cm.  Isthmus is 0.6 (was 0.5 on last u/s)  I know my left lobe has grown.

Now:  waiting for my endo to get back from winter vacation and refer me to an ENT surgeon for TT...hopefully the end of Jan/early Feb.

My last labs were Thyroid Peroxidase Antibodies 167  (Ref <35) HIGH
Free T4:  3.0 (Ref. 0.81-8 mg/dl) HIGH
TSH <0.01 LOW
Free T3: 793 (Ref. 230-420) HIGH.

The endo did tell me med. tx was NOT for me, that I needed to decide on TT or RAI to kill off my thyroid. I'm going with TT cause of the nodules and how the RAI won't kill those off.

[hyper_what?]

Oh, I did forget to mention my PCP put me on Tapazole until I can see the endo again due to the palpitations getting worse.  He did tell me it was "only temporary until surgery is scheduled"...and thats what the pharmacist told me, too.

[utahmomma]

I was put on Tapazole when I went into thyroid storm following my RAI.  Good stuff  'cause those palpitations and my out of control BP were getting frightening.  I was only on it for about 2 months until my TSH came back under control.

[hyper_what?]

Tapazole helped your BP?? My BP just seems to get higher and higher...and it SCARES me. I'm usually in the 115-120/72 range...my last BP reading was 145/87.  Nice to know it will help with that, too. WHEW!

[utahmomma]

Yeah, my BP was something/111 when I went to the ER.  Scary!  I've never been taken from triage to a treatment room so quickly!  Being hyper can really mess with your BP.  Do you have a BP cuff at home??

[sizzlelene]

Was diagnosed with Hurthle cell follicular cancer 3.5 cm when I had a partial thyroidectomy on 11/30/07.  Just had the completion thyroidectomy on 12/21/07.  Still waiting for that pathology report.  I am on Cytomel 25 mg twice per day waiting for scheduled RAI in mid February.  I'm still trying to recover from the shock.

[utahmomma]

I understand about the shock.  "Cancer" didn't really sink in for me until about a year later.  Hang in there and lean on us!!

[hyper_what?]

Do you have a BP cuff at home??

Somewhere...LOL.  I was an EMT volunteer at Dixie Regional (another IHC) MAAAANY moons ago....HAHA. I found my cuff the other day but I"m not sure if its still good or not: its been in the garage and the summer temps here get 110+ EVERY DAY. I can't use the bp machines in the stores either due to the arterial graft done on my left arm and they all sit you using your left arm.

[utahmomma]

When I had my thyroid storm I ran to Walgreens and plunked down about $50 for one - works on either right or left arm (none of that sissy wrist stuff).  Yeah, with 110+ heat I'm sure the rubber on your BP bulb is trashed.  Dixie Regional - wow, you do know about IHC!  Some of us call IHC the Utah Healthcare Mafia (no offense to the mafia intended).  They *are* getting better though.  Hey, they even covered my thyrogen shots this year.  

Oh, if they are listening:  Love you IHC.  :-)

[blksapphire]

I'm new to all of this, so I'm not sure of all the correct terms yet. However, I will throw in my two pennies.
9-21-07  wen't to my pcp for my complete physical- TSH 0.07 which started the ball rolling.  PCP called me back for 2nd set of testing.

10-2-07  T-4 Free 1.5
             TSH 0.06
             T-3 Free419............referred to endo dr.

Endo Dr. wanted another set of blood work and U/S & 24 hour uptake and scan

11-21-07  24 hour uptake and scan results:  24hour uptake measure 36.7%.  

11-27-07  Thyrodlbulin antibodies  <20
               Thyroid Peroxidase      <10
               T-3 Total     185
               T-3 Uptake  34
               T-4 Total  10.1
               Free T-4 Index  3.4
               TSH    0.06...............next step U/S

12-5-07  Can't find complete reading: this is partial
            0.6 cm right  thyroid nodule
            0.8 cm hypoechoic nodule  left of isthmus

           Left lobe no nodule

12-12-07 back to Endo Dr. for follow up.  Give prescription for atenelol and RAI. advise that once the cells are killed.  I will be on meds (probably) for the rest of my life.

12-27-07  18mci (millicures) RAI I-131
1-23-08    to Endo Dr. for follow up.

[jd2]

ok to start with i feel heaps sorry for those of you who have or have had cancer, i hope you are all better and on your way to getting better!
i just have hashimotos thyroiditis.
no idea what my tsh is - i think its round 1 (and i feel great-ish), and my dosage is 12.5mcg (small i know - but i sure go hypo if i dont take it - and way too hyper if it take more!)
im trying to increase awareness for people who only need a small amount of medication (i started on four times what im on and was really sick) because there are probably people out there whose lives would be much better with a little bit of meds but who cant take the higher dosage (so probably dont take any at all)!

[Venora Moonwind]

Thyca sept 06 rai good and I am now on 200mcg levthyroxine and I am feeling pretty good.I get my breast lump biopsied on the 3 rd so I will let yall know what happens.I am someewhat worried about this I know this is the thyroid forum but  yall have been with me the past year and you make me feel better.
Love Venora

[jd2]

oops i also forgot to say that i believe we should all be able to feel "normal" again, not hyper or hypo - and that some doctors and the drug companies need to work harder (or just work) to help us all find the right dosage!

[sizzlelene]

Thanks for the support...I need it!  I have been lurking on this site for almost 4 weeks now and it has gotten me through some very rough patches.  My surgeon just called me to say that no abnormality was found on the completion thyroidectomy.  It is good news meaning that I likely have localized disease but I will still go for the RAI treatment in February.  Is it too much to ask if a cure is possible?   What about potential side-effects of the RAI?  I'll take it one step at a time.
I like being to share here since I have to  be strong at home for my family.

[Mucka]

I have developd a solid mass/nodule (5.7x3x3.7 on last u/s) with calcification taking up pretty much my whole left thyroid lobe.  I have three other small ones also, though, those were not biospied.  The biopsy came back benign but with follicular cells within it with the pathologist stating further investigation is warranted pending clinical appearance.  My Internist had sent me to a surgeon urgently for a surgical consult for removal of my thyroid gland and the ENT surgeon was hesitant and wanted to wait a month as he thought I had acute thyroiditis.  My Internist very much disagreed.  I have had 2 ultrasounds, 1 CT scan w/contrast and now  am having a thyroid uptake today to determine if it is a hot/cold/warm nodule.  My Internist's office had called last Friday and stated that when they retrieve the results of this scan they want to see me regarding seeking consultation from an Endocrinology Surgeon in another province (we don't have one).  I am not treated with any medications either.

So, I don't know what my condition entails yet but hopefully will have some answers in the next week or so.

[AR-10]

Hashimoto's Can't-control-it.
No cancer, thank God.
Waitng for RAI at the end of January.

[skymax2000]

Graves disease. Use to be raving lunatic as well hyper and hypo symtoms (symptoms) even though tests always showed hyper. Much much better today. Taking antithyroid for over a year as well as trazadone and xanax. I was undiagnosed for over 10 years and went thru many, many doctors for "depression". Wasn't diagnosed with Graves until I got pregnant. I feel my child saved my life bc I had given up.

[whittie918]

In April 2007 a full physical discovered a calcification while doing a corrited artery ultrasound.  Further investigation stated it was a .8 mm calcified nodule.  I was told it was a multi-nodular goiter and follow up in a year. The idea of it being calcified sacred me.  I refused to wait a year and it took me 3 months to find an Endo who would see me.  I finally got into one July 2007.  He took a wait and see for three moths approach since going by the last ultrasound it was too small to biopsy.  October 2007 the ultrasound showed a 15 mm biopsy and warranted a biopsy.  November 5, 2007 I had the biopsy.  November 9th I was called with the Papillary Carcinoma caner diagnosis.  Surgery for TT was 11/29/2007.  Final pathology report said I had cancer in both lobes and in one of 4 lymph nodes.  The nodule being placed between the glad and the trachea had attached itself to my trach and had to me shaved off.  

I am now on the Low Iodine Diet and am scheduled for 1/3/08 for the RAI which I will have 100 whatevers of radioactive iodine.  I dont know why, but I'm finally afraid.  Afraid of the RAI and full body scan.  I'm praying for a fabulous update and a good clean scan after.  I have really no idea though what to exepct with the FBS.  They they usually clean or usually light up a bit in the thyroid bed?  My doc will do another treatment in 6 moths with any light up at all but told me it was normal to have light up in the thyroid bed and maybe the esophagus due to my nodule attachment.

[sizzlelene]

I will have you in my prayers.  I am a bit apprehensive about the RAI also but this is what we need if we are to have a fighting chance with this disease.  Many people appear to do all right which is comforting.  Please let us know how you make out.

[utahmomma]

I'm glad that the remaining thyroid tissue was cancer free!!!   RAI has some entertaining immediate effects and some possible long-term effects  (which I felt were less problematic than a recurrance of cancer).

Here's some info that may help:
From Johns Hopkins:  http://www.thyroid-cancer.net/topics/What+are+the+risks+associated+with+radioactive+iodine?
From Medicine.net:  http://www.medicinenet.com/thyroid_cancer/page6.htm
from thyrogen.com (for physicians but very useful):  http://www.thyrogen.com/healthcare/testing_monitoring/p_hc_test-algorithm.asp
and from endojournal (go about half way down in the article - search for: "Acute complications"):  http://jcem.endojournals.org/cgi/content/full/86/4/1447

My personal experience was the "hypo-hell" caused horrible muscle aches and depression but the RAI didn't change anything other than I lost my sense of smell for about 6 months.  However, since then I've developed arthritis which I'm attributing to the RAI.

All in all, it beat cancer.

I understand about you needing to be strong for your family.  I'm a single mother so that really hit home for me too.  What I didn't realize is that my family (especially my teenagers) needed me to talk to them and tell them what was happening.  They felt the need to be strong for me and I wasn't letting them.   Lean on us but don't deny your friends and family the chance to lend you their shoulders too.

[choirgirl]

I'm new to the boards here.  I've had Hashimoto's for 10+years with a fairly large goiter.  I was on a low dose of levothyroxin (levothyroxine) .88 for years.  In September I noticed a nodule on my goiter.  I went in for an ultrasound at the end of September.  I was sent for a Needle Biopsy at the end of October.  It was found to be a complex nodule and had hurthle cells in it.  I was sent for a total thyroidectomy on December 20th.  Found out today (12/28) that it WAS cancer, but it was contained and  I don't need to have RAI.  Just need to have it checked by ultrasound for the next 10 years or so.  I was really worried about doing the surgery because I am a vocalist and it is my main profession.  Now that I found out it was cancer, I feel much better about having had the surgery.  I hope to get my singing voice back, anyone else out there have trouble with singing after surgery?  I feel good and the prognosis is good.  My surgeon used the nerve monitor and told me it didn't go off once during my surgery.  He also checked out my vocal chords before the surgery too, to make sure they were good.  I've been on Cytomel 25 mg twice a day since the surgery, but am going on Synthroid on Wednesday when my endo is back in the office.

[ChitChatNine]

I am glad the surgery is over now for you ...... sounds very promising your voice will be ok .. it takes some time ...

What type of Cancer was it?

Cheryl

[tiredforever]

I am  new to the website, found it about 6 weeks ago after finding out Hashimotos. I didn't even ask my levels (wouldn't have remembered them anyway!) & have been on 25mm eutroxig.  Just had my levels done again & pretty sure will need to increase medication.  Dr thinks I have had this a long time.  Also have gluten intolerance/wheat allergy and have a shot of b12 nearly every week because of pins & needles, numbness, slow reflexes and 'very bad head'!! etc etc  Stomache not able to digest food much , but taking mega supplements & enzymes to get going again.   I am lucky compared to lots of you guys, no cancer or surgery, just need the right dose of meds I think (hope so anyway).  I still feel like kissing my new doctor as I was at the 'I can't do this any more' point. Reading the forum gives me a lot of insight & I know what to ask dr about now thanks everyone.  Can't believe a little gland can cause so much trouble!!!!!!

[choirgirl]

They said papillary carcinoma (I don't know if it was hurthle cell carcinoma, but could have been), but that was my endo over the phone.  I'll have the documentation in front of me in a week.
Lori

[Applecore]

I seem to be having more problems with my emotions now and mentally that anything else.  I don't know what my tsh is right now - it was 5.6 and I am on 37.5 mg levothyroxine.  Tiredforever, I too have gluten intolerance and am learning to eat .  My B12 was 260 and is now up to 400.  My doctor won't give me the shots but my holistic doctor is giving me suplineal B12.  I take it at bedtime and it seems to help me sleep.  I am  so much better with the tiredness and mental fog from the thyroid but having anxiety and fear from ?.   I am also taking mega supplements and enzymes and also laprazam for the anxiety.  I don't know what I would do without that.  I had RAI 2 years ago and was fine no meds until March of this year and everything went haywire.  I went hypo with severe anxiety and I don't remember all the other stuff but am better now.  I am learning so much from everyone here and it also helps me to ask intelligent questions when I go to the doctors.   The only good thing about the gluten intolerance is loss of weight for it sure keeps you away from most of the sweets.  I also cannot eat eggs at this time.  If you ever want to talk about this go to my Profile and write me.  I would be glad to have someone to talk about the celiac and hashimoto which I also have.  
Thanks ChitChatNine - you are great with these little extras.    Linda

[ChitChatNine]

Mine was contained, too.  I go ev. 6 mos for ultrasound to compare ea. interval for change.  They will most likely put you on highest tolerated am't of Synthroid to supress any cancer activity .. but since it was fully encapsulated you are in good shape and left with options to choose from (RAI vs. no RAI, etc., etc.)

Deep deep down in the bottom of my heart how I wish my "incidental finding" was found during the surgery and they took the whole thing out on the table .... then it woudl be gone but in my case they say it poses more risk of scar tissue (bcz I heal terribly in and out) serious problems than the type of ca they found if there are any stray cells, etc.

In my case the other side never began to work again .. so a TT would have been the best of all worlds but hindsight is 20/20 and the frozen section was benign and I had agreed only take the other side out "if" cancer found while on the table.

You MAKE SURE they let you go ev. 6 mos .. none of this 1yr stuff .... ultrasounds are non-invasive and no need to take any chances as you are like me and opted not for RAI.  In my case since there were 2 found technically I fit the bill for RAI but for now 3 of my 4 opinions suggested a wait and see approach which I am ok with 80% but I know I can always change that with a phonecall if anything seems to have changed or I change my mind but would have to have that TT.

C~

[choirgirl]

Thanks for the advice.  I had dealt with Hashimotos, but this other came on so suddenly and I felt like I lost control of the situation fast.  Not helpful that my endo's office made me wait 6 weeks after the needle biopsy to tell me I needed to have surgery.  Why do they do that?  My doctor told me I had hurthle cells and that I should have it out within a couple weeks and not to wait (Dec 6th).  I had it out the 20th.  However, I had the needle biopsy done in October.  If it was so urgent (which it was), why didn't they get me in sooner?!  I still feel a bit of resentment over that.  I've got to get over it and think positive to make sure that I heal well :)

I have a hard time wanting to go back to my endo's office.  I love my endo, but his office staff are cold and rude, including his P.A.  What to do, what to do. . . . .

[ChitChatNine]

And my ENT made light of the pap ca findings as far as even stating that, "most institutions wouldn't have even found them!!!" .. I snapped back and told him that is why I CHOSE THIS INSTITUTION and it wasn't until the Endo he recommended I see sent him journal reports of studies done recommending TT in my case did he quickly change his tune and take it seriously.

I get annoyed when the Docs say, "oh this is the best Cancer to get" or "You hvae more of a chance dying crossing the street or in a plane then from thyroid cancer" .. That still angers me ..

C~

[Mucka]

That angers me too!  My ENT surgeon stated "You can wait another month to make sure it is not acute thryoiditis (mind you, I have an almost 6 x 3 x 5 cm nodule with calcification). You never hear of anyone dying from thyroid cancer now do you???"  I was severely ticked.  Now waiting for a second opinion!!  

[Jenny5159]

I am new to this forum, but I feel so relieved. I have been going to the OBGYN & general doctor for various symptoms only to finally insist that a thyroid panel be completed. It showed an elevated TSH. The doctor wanted to wait another 3 months to retest. I insisted on being referred to an endo dr. I was not going to wait another three weeks! However, it takes months to get in as a new patient. I was told by the endo I had Hashimoto's Thyroiditis. This sounds silly to most, but I was relieved.... I thought I was going crazy:)

[Cherie712]

results of my thyroid ultrasounis as follows -
An 18mm well-defined rounded mass lies centrally in the right middle lobe. This is inhimigeneous, but is predominantly fluid filled. Blood flow is noted around the margins. Multiple other rounded solid hypoechoeic lesions are widely scattered through both lobes and the isthmus, ranging from 3mm to 12mm diameter.

The appearance is consistant with multi-nodular goitre, possobly with bleeding into a cyst or adenoma.

Can anyone shed a little light on what all that means please, if I should be a little concerned? having more tests but not able to do so for another 3 weeks.

Thanks Cherie :)