Help

[MarleyRose]

I was diagnosed w/ Thyroid Cancer in 6/06, two weeks after having my last child at 40.  7/06 I had surgery - cut from ear to ear - to remove thyroid cancer which had spred to several nodes.  In 5/07, had radation scan and found no growths - thought that to be good news until Dr. said only 40% acurate.  10-24-07 had blood work done and TSH is 0.26 & Free T4 0.95.  My Dr. just said to increase syntroid 1/2 tablet per week and offered no other explanation.  I am very confused.  Can you please explain to me what's going on.  Thank you so very much for your help!

[MarleyRose]

I am so sorry you guys know only tooooooooooo well what we've been through. I appreciate SO VERY MUCH your words, your stories - I feel less alone and confused or somewhat of an outcast.  I know that life can be tough, but I also know we need to be tougher.  I highly recommend you guys visit an herbal store.  I went there for incese, candles, sage etc.  It really helps my positive energy flow as well as relaxes my mind.

The truth is that I haven't had to deal w/ any information that has confirmed Cancer has come back so I remain strong.  I am hoping that it's now over but preparing if it is not.  Prayer has also gotten me through some serious lows.

When I light my candles and pray for positive strength, health and happiness I will also include a prayer for all the wonderful people who are going through this experience and worse.

I wish you all the very best and again REALLY appreciate the words of experience and kindness.

Take care.

Linda

[ChitChatNine]

You have so much to share with others on the board.  You are a true survivor.  I can only imagine your daily pain with scar tissue as they *think* I may have some from my partial .. given my history of other surgeries not healing so great and this one included, I am prone to this scar tissue adhesion stuff .. my right side of neck is sore if I sleep funny or overdo it .. the other side is just fine .. it's been almost a year so they think scar tissue but won't show up on ultrasound of course and not too bad at this point for further tests.  Not too bad but not so great as it is a constant reminder ... and, yes, the rollercoaster is the worst .. wondering if/when it will rear its ugly face again .. I have Melanoma found 6mos after the thyroid ... so I know how you feel .. and they keep ultrasounding my side left intact as there is a 3mm nodule there which is stable the past year and resembles the benign ones removed during my partial in Jan '07.

HUGS,
Cheryl

[KBo13]

They removed all of my Thyroid in 01/05 except for a small part in the upper right area.  He said he was afraid of mucking around too much because he had already paralized my left vocal cord.   That surgey left only about a 2" scar but a year later I had to have a Radical Neck  Disection to remove a 3cm Diffuse Sclerosing Papallary Carsanoma (sp?).  That surgey left about a 6" scar from the middle of my neck to just under my left ear.  I also had external radiation which left some burn scars, inside and outside.  I don't exactly look like Frankenstein but somedays I feel like him.

I never was told I had Graves.  The cancer was found during a routine Doctors visit.

I totally understand what you are going thru.  My husband, bless his heart, sometimes forgets but he has mostly been a Saint.  As for my children, they are both Adults and they are totally clueless.  I told my husband as sick as it my seem it some ways it would have been easier if I had lost a limb to cancer.  As it is now, I look pretty normal (relatively),  I don't look sick.  Everything that is bothering me is due to Thryoid issues or pain from scar tissues.  In 2005 I had 42 treatments of External Radiation that left massive internal scaring.  My Doctors said to think of a bunch of pieces of duct tape placed on top of one another and you get the idea of what is going on in my left shoulder and neck area.  I was told I needed the External Radiation after my 2nd surgery to deal with any "Cancer Seeds" (isn't that a horrible idea) that might be left from the Tumors.

So not only do we have to deal with having no Thryoid we get to deal with worring about the cancer comming back.  Please feel free to e-mail anytime if you want to talk, vent or maybe just a shoulder to cry on.

Stay Strong, Best of Luck

Karan

[ChitChatNine]

I think we all "fall off the wagon" and many who don't induldge now and then have issues with their health going on ..... that is just my personal opinion.  I cook healthy, too, but also do the McDonald's Burger King thing perhaps, more often than others.  Don't beat yourself up bcz of it but since you are aware of it, maybe try to set a goal to change it and reward yourself on the days that you avoid it .. a manicure/pedicure or something for YOU!

Not sure if I shared with you that 6mos after my thyroid surgery I had a mole removed that was Melanoma.  Stage I very early and confined to the surface only and is now 100% with a 2.5" scar to remind me of it.  It serves as a reminder for me to monthly check my skin and ev 3mos get in to see my Dr. for a skin check.  I, too, beat myself thinking maybe in the later years I haven't used enough sunscreen, blah blah blah, -- why the timing so close to the thyroid --- did the Synthroid promote it ? -- and then I just took a step back and realized it was going to happen anyway ..  sun stuffs are from many years ago .. not present exposure for the most part.  I have had a history of atypical moles removed since the birth of my 3rd child .. these hormones do wacky things to us .. I blame the hormones more than the junk food LOL LOL LOL!

Cheryl

[MarleyRose]

Thank you for your information - I felt so alone in this situation.  I am so very happy I found this forum.

Margie - How long was it before you were told you had cancer? How did the Dr.s discover it? What kind of thyroid cancer did you have? Mine is papillary - Did they find it all (chest included) at the same time?  I always worry about it coming back or them missing something and it spreading to other parts of my body.

I had not drank or smoked for about one year after my surgery and I have kind of fallen off the wagon... I now smoke, only when I drink, but when I smoke and drink - I really do it up.  I read that toxins are perfect to help cancers grow and I can't believe I ever picked up a cig again - but it goes hand in hand w/ drinking for me.  I now go to the gym regularly but have also been eating to much junk food.  Don't get me wrong I cook - healthy meals most of the time but when I am rushing around town - I stop by McDonald's or BK and eat stuff like cheeseburgers and fries etc.  

Who ever wants to comment on these issues - I would really like to hear your story it helps me relate better to my situation.

Thanks again for all the info from everyone - it has really been helpful.

Linda

[imedicmommy]

My levels were similar to yours this week 0.24 TSH and my dose was increased as well for suppression. Had similar large cancerous sites like you did as well (7cm mass in my chest). I have similar symptoms as well...I thought for sure my TSH would be higher since I am so sluggish. Now I'm blaming everything on stress!

Just so you know you aren't alone!
Margie

[ChitChatNine]

I am certain we can continue to compliment ea. other by helping ea. other out ... I guess the one thing we can agree on is that in this world of thyroids the literature has so many different opinions!

With the papillary microcarcinomas that are fully encapsulated (as in my case), there is more leeway on the TSH levels as they are generally non-invasive, while other types (as listed in your post above) are more aggressively supressed.  I would imagine in the poster's case above her TSH target is well below 1.0  based on her history.

C~

[GravesLady]

I guess I jumped the gun. However we are both correct.  

I checked my notes from thyroid-cancer.net which states as you quoted, and

MedicineNet.com states - In the treatment of well differentiated (papillary and follicular) thyroid cancer, levothyroxine is used as an adjunct to surgery and radioiodine therapy. Generally, TSH is suppressed to 0.1 mU/L, and this usually requires a levothyroxine sodium dose of greater than 2 mcg/kg/day. However, in patients with high-risk tumors, the target level for TSH suppression may be 0.01 mU/L. In the treatment of benign nodules and nontoxic multinodular goiter, TSH is generally suppressed to a higher target (e.g., 0.1—0.5 mU/L for nodules and 0.5—1.0 mU/L for multinodular goiter) than that used for the treatment of thyroid cancer. Levothyroxine sodium is contraindicated if the serum TSH is already suppressed due to the risk of precipitating overt thyrotoxicosis.

So as you can read both are correct.

I didn't mean to be offensive. I just try to refrain from threads that I have little knowledge of, however I am not always successful, as you can tell. ;)

[ChitChatNine]

I'm not an expert in interpreting lab results so maybe somebody else can jump in with their thoughts on your ?'s ......

You have come to an excellent forum where I am certain you will share alot of similarity with others.  You are a very strong person ... yes, the husbands oftentimes "just don't get it" .... so please continue to ask ?'s and post away!!!!

Cheryl

[MarleyRose]

Thank you so very much for your words.

I can understand your fear and determination -----------  very well.  Did they remove all of your thyroid?  One Lymph node or more?  Can you share what your scar looks like - they cut me from ear to ear... it's getting less noticeable but I still see it very clear.  My eye lids are very puffy (maybe GravesLady can share some info)  I was diagnosed w/ Graves but when I was diagnosed my eyes actually were buldging out now they are not bulging but the lids are VERY puffy.  Where you ever told you had Graves?  Sorry for all the questions - please answer the ones you feel comfortable answering.

Again - Thanks to ALL!

Linda

[MarleyRose]

Thank you all for your comments.  Please know that when I share my thoughts - I share them w/ everyone who can lend an ear and offer some  expertise as I am sure we are all learning daily.

I can't thank all of you enough  for sharing.  My husband doesn't seem to get it and my children - well they are really to young to understand - so believe me when I say "Thank you!"

GravesLady - please step in whenever you want as your words are much appreciated.  Cheryl... thank you soooo much for the detailed info, but I am still left a little confused.    I got a copy of my lab results and it said Normal Range for TSH 0.34-5.60 uIU/mL (whatever that means) -as I am 0.26 I am told this is low.  Do you feel that is correct?

Low TSH means - Hyper or Hypo?  Wouldn't the increase of the Synthroid lower my TSH more?  Would that be the goal?  Are Units measured in uIU/mL the same as mU/L?  If I understand the above information I should be feeling Hyper?  Ok - enough questions I am going to check out the webiste.

Again - thank you all for taking the time to help - may the same kindness come your way!

Linda

[KBo13]

I am being kept Hyper to inhibit tumor growth.   Hyper sucks as I'm sure Hypo does.  Anytime your body in out of balance it is bad.  I just keep telling myself it's the price I have to pay to deal with cancer.  It could be worse, it was worse, I had Thryoid cancer, one 6cm tumor on my Thyroid and one 3cm tumor on a lymph node.  I figure anything they can do to hold back the possibility of a reaccurance of cancer is worth the sacrfice.  My TSH levels have increased so she has upped my Synthroid from 150mg to 175.  Like I said, I'm not happy about it, it's taken me an hour just to formulate this post,  but my last PET/CT Scan was clear, that makes two in a row clear.  I figure my Doctor must know what she is doing.

Stay Strong, Best of Luck.

[ChitChatNine]

TOTAL supression is 0.1 or lower .. there are DEGREES of TSH supression for ThyCa patients with anything <1.0 considered supression.

*****Please keep in mind that nobody is directly or indirectly addressed on this forum so no need to excuse yourself from further comments ****** KEEP IN MIND THAT WE ALL WORK TOGETHER to share our expertise and knowledge and experience .. nobody points a finger and nobody challenges in a defiant way .. we can ? but there is never need for Judging people or sarcasm .. never is sarcasm on a forum an accepted venue!*********

pls. note below .. I put asterisks in what I copied from this website so it stands out that there are different targets for TSH supression based on the Cancer, etc.

THYROIDCANCER.net
http://www.thyroid-cancer.net/topics/what+is+the+target+TSH+level

"What is the target TSH level?

In general, thyroid hormone suppression therapy is targeted towards distinct levels of TSH suppression. Therapy at the greatest extreme aims to suppress TSH to an undetectable level, usually expressed as being less than 0.01 mU/L. Therapy at more moderate levels aims to suppress TSH either to just below the normal range (expressed as 0.1 - 0.5 mU/L) *********************or the lower end of the normal range (expressed as 0.5 - 1.0 mU/L). ***********************

A number of factors are considered in determining the target range of suppression. If recurrent growth of thyroid cancer seems likely, TSH should be suppressed to an undetectable level. If the risk of recurrence seems low, it may be acceptable to suppress TSH to the lower end of the normal range.

The degree of attainable suppression may be limited by certain factors. If a patient receiving thyroid hormone suppression therapy develops palpitations, anxiety, shakiness, insomnia, or difficulty tolerating excessive heat during treatment, the dose of levothyroxine may need to be lowered. Certain preexisting conditions may also be exacerbated by high doses of levothyroxine. These include an irregular heartbeat, osteoporosis with thinning of the bones, or coronary artery disease leading to angina or a heart attack. When necessary to limit high dosage symptoms or to accommodate a history of preexisting conditions, lower doses of levothyroxine may be administered that do not produce as much suppression."

Cheryl (ThyCa 1/07 currently on 88mcgs of Synthroid goal TSH supression <1.0)

[GravesLady]

Sorry to correct here, suppression is 0.1 or lower.  1.0 is normal level. Maybe you got the decimal in the wrong place, mistakes do happen ;)  Being that I have not been addressed, I'll excuse myself from further comments.

[MarleyRose]

Thank you so very much for your response.  I am curious to know - w/ my TSH being this low should I be feeling Hyper or Hypo?  I get leg cramps while sleeping on right side and feel very sluggish and depressed. On the other side of the coin my hands shake some times so I am very confused.  "What does encapsulated mean?"  I am assuming that it didn't spred....  I am scared that the cancer will come back b/c it was into my nodes - thank God no further but I always remain positive.

Again thank you all for taking the time to respond.

Linda

[ChitChatNine]

Yes, cancer supression of TSH <1.0 is the goal ... sometimes as close to undetectable as possible w/o interferring physical side effects i.e., anxiety, etc.

My TSH is 1.3 bcz I cannot tolerate higher dosing of Synthroid .. I get anxiety ... in my case bcz the Cancer was small and fully encapsulated we agreed that quality of life + TSH as close to <1.0 as possible will be acceptable for me.

I am on 88mcgs of Synthroid daily and go again for TSH on Friday for a final blood draw hoping it is ok # ... I came down to 88 from 100 after side effects interfered with my daily life like word retrieval issues, anxiety, etc.

Cheryl

[kitcurious]

Yes, I have read that in cases of cancer they like to keep the TSH very low. I hope you feel good at this level.

[GravesLady]

Your doctor might be treating per TSH surpression level, which in some cancers are done after doing RAI. Low TSH supression level is thought to keep cancer from coming back.