Thyroid Issue!

Hot dam!  The same thing happened to me with in this month.  I had the biopsy, it's nothing, just a prick.  The results came back, " inconclusive"  and the biopsy has been forwarded to a lab that specializes in thyroid biopsies.  I'll post the results here when I get them.  Even though thyroid cancer is not that serious, I am sitting on pins and needles (no  

pun intended) waiting for the results.  Good luck with yours. 

9 years ago (gosh, how time flies) they found a lump on my thyroid too. I had a needle aspiration (way easier than a pouch scope). It did turn out to be cancer and I have since had 2 rounds of radiation therapy and surgery to remove my entire thyroid. 

The good/great news is that it is one of the most curable cancers, and none of the treatment affected my pouch in any way. The radiation is in the form of radioactive iodine taken by mouth, so it's not invasive, besides the fact that you are ingesting a radioactive material, of course.

 

So don't worry too much. 9 years later, me and my 19 year old pouch are still doing great.

 

Let me know if you have any questions.

C-jay

I am a little anxious, as I thought if I would ever get cancer, it would appear first in my rectal cuff where I have known inflammation.  The thyroid was never even on my radar as a possible problem, because my hands have been full fighting the pouchitis.  The thought of a needle being jabbed into my neck is not a comforting one, and drinking radioactive potions even less so.  I will be relieved when it is over.  I will report back Friday.

I went for the ultrasound and biopsy this morning.  The ultrasound revealed a lipoma on my thyroid.  The Doctor told me they are usually harmless but they took biopsies.  I had a total of 4 shots into the neck.  They use a small needle about the size of an acupuncture needle but they aspirate with it and there is a strange sensation of tissue being sucked out of your neck.  Kind of felt like I was in a Dracula movie on the receiving end of one of his bites.  Only 1 of the 4 shots was really painful, the others were pricks.

 

Biopsy results back in a week.  They told me in the worst case scenario if it's a papillary cancer Yale has the best group of thyroid surgeons in the world, and they would be able to get it in one surgery and probably remove it, no ongoing radiation or chemo being needed.

Here is another thread started by Spooky linking IBD and thyroid disorders:

https://www.j-pouch.org/topic/i...nd-thyroid-disorders

I think most autoimmune disorders have a way of linking up, if you look hard enough. Hubby has psoriatic arthritis and Hashimoto's thyroiditis. 

 

Plus if your sister has thyroid issues, might there be some genetics involved?  I don't know; just asking. Like my mom and sister both have thyroid disease; my kid and I both have IBD, etc.

Update:  After sitting on pins & needles for over two weeks waiting for a biopsy report from  a lab specializing in analyzing thyroid nodules, results came back again as, "inconclusive".  I was given this information by my gastro guy over the phone while out of town and I have been scheduled to see the surgeon next week who did the biopsy.  Being suspicious (perhaps paranoid) I suspect he will lay the real news on me.  My question is this:  anyone have views on thyroid cancer treatment from the Cleveland Clinic?  They did a great job treating me several years ago for complications from my gastro surgery.  Thanks.

 

Keep the faith.  My second biopsy again proved inconclusive so yesterday, a third one was done and this time five vials of fluid were taken.  Either way, you are correct, the cancer is very treatable but explore all options besides surgery.  One of the best questions I ever asked was to ask my GI who he wold have a Colectomy/J pouch perform on him should he need it.  His answer steered me in the right direction. 

It's a confirmed cancerous tumor - a carcinoma, papillary cancer - and the only treatment option is surgery followed by consumption of a radioactive isotope.  The only question is whether it's gotten into the lymph nodes, in which case it would be not only a thyroidectomy but also a neck resection.

 

 

Aww... I'm sorry to hear this.  The hits just keep coming, but we pouchers are strong and resilient and I'm sure you can beat this too!

Thanks.  I am just going to deal with it.  I have several vacations planned in the next few weeks, to New York City this weekend and to Montreal for the Jazz Festival 4th of July weekend.  I am working my doctor's appointments around that and hope to schedule surgery, whether a simple thyroidectomy or that and a neck resection to remove lymph nodes, the week after 4th of July when I return from Canada.

 

I will know the result's of next Thursday's second round of tests on whether the cancer has spread when I followup with the ENT specialist on June 26.

Sorry to hear this, I'm sure it's nerve wracking.  Hope it all works out well, good luck.

 

Are ENTs the docs who diagnose thyroid issues?  I've had a few nodules for the last 4-5 yrs that have been monitored w/ultrasounds by my PCP, but nobody seems to concerned.  Your post has made me a little more concerned!

N/A,

My thyroid issue was originally spotted on a routine annual exam with my primary care doctor. He detected swelling in my throat glands on a routine feel of my throat. He then refererred me to the ENT specialist who felt a "firm nodule" on my thyroid and ordered an ultrasound and needle aspiration biopsy of my thyroid which confirmed that I have a papillary carcinoma. Believe me when I tell you my neck looks normal and there is nothing I would have ever seen or known to be a tumor. The issue was spotted by two medical experts feeling my throat and thyroid.

Earlier in this thread LouJr. raised the question of whether surgery is the only treatment option for a papillary carcinoma. Attached is a very interesting NY Times article suggesting that surgery may be an aggressive approach as these cancers often  do not grow and can be monitored non surgically:

http://mobile.nytimes.com/2014...ancer.html?referrer=

I spoke to someone who has a confirmed small papillary carcinoma and his doctors are monitoring it with sonograms every 6 months.

The chief risks of surgery are nerve damage to the vocal chords jeopardizing one's voice (something I make my living on as a trial attorney) and taking synthetic thyroid hormone for the rest of one's life - it can be tricky trial and error to figure out the correct amount needed individually and meanwhile your weight and energy fluctuates.

If it turns out my cancer is also in my lymph nodes surgery is absolutely necessary and further testing next week will hopefully determine whether that is the case. I am also seeing an endocrinologist Monday who will take blood tests and later administer the radioactive isotope if surgery proceeds.

I will post in a couple weeks when all test results are back from the second round of tests on my lymph nodes.

Thanks for the information, CTB - good stuff (your information, I mean - not your situation!)  Looking forward to hearing that the lymph node tests turn out negative.

CT,

I know you probably have lots of resources, but I went through the exact same situation as you 9 years ago. I'm sure you know that papillary cancer is the 'best' thyroid cancer to get. The surgery is fairly straightforward. I stayed one night in the hospital, at least thats how it's done here in Montreal. (Trivia: Michael Douglas came all the way to Montreal to my hospital to get treated for his throat cancer a few years ago. So I knew I was in good hands). The radioactive iodine is a bit harder. You must starve your body of iodine so that any iodine loving cells really absorb the radioactive iodine, which in turn kills any remaining cancer cells. It's a tough few weeks with no synthroid until you are ready for the radioactive treatment. I had no weight issues, or pouch issues, but boy was I tired! And a bit miserable. It feels weird to take the iodine pill because they bring you into one of those "radioactive" rooms. The doctor won't touch the pill, they don't want you to touch the pill with your hands either, but you have to swallow it. Then you are considered radioactive for a bit. You're not supposed to spend too much time close to people. Especially little kids. And they tell you to flush twice every time you pee. Sadly I had to go through the radiation procedure twice, as they could still detect cells my body. 

 

I get an annual neck/throat ultrasound, and blood tests. I've been really lucky with my doses of synthyroid, never have any problems with that.

 

Best of luck for the easiest possible outcome. We worry about our "other" problems so much, it seems unfair to have something to add to our plate. 

 

P.s. I had swollen lymph nodes too and no cancer was found there. See, there's hope!!!

 

c-jay

Hi CJB,

Thanks for the info you posted. I am glad to hear you had a good result. I heard from one person who consumed the radioactive isotope that it threw her sense of taste off for about a month. She said all foods she ate had a sour taste. Did you experience this issue? She also mentioned fatigue and it taking time to get the synthroid dosing correct.

Any idea how long I will need to be isolated for due to the radiation? I am seeing the endocrinologist Monday so I am sure we will be discussing these issues in more detail.

Another thing I wondered about is since I have a J Pouch should I be concerned about digesting the synthroid? In what form is it given, pills, capsules or liquid? Do they make synthroid gummies that are pouch friendly?

No, I had no problems with taste or anything like that. Your diet will be very restricted for the time that you are not allowed to consume iodine. You'd be surprised how much food has iodine in it. I found that frustrating, and then being so tired just cranked up my frustration level. You can definitely eat healthy though. 

 

The daily synthroid pill is the tiniest pill you will probably ever take In your life. And I would find it hard to believe that it has any type of side effect, as it is just replacing our hormone that our absent thyroid can no longer provide us with.

 

I think I was supposed to stay away from people(mainly pregnant women and kids) for about a week, maybe two. I still went to work because I have my own office. My name is CJ, so they called me X-Ray for a whIle. 

 

For us it is a bit traumatic, but for the surgeons it is considered a fairly routine surgery. Not that that is a HUGE comfort, but every little bit of reassurance helps.

 

p.s. I know almost 10 people that have had thyroid cancer and we're all doing fine. Another reassuring fact for you.

CJ

I contracted Hep C from my abusive step father when I was a child, he'd beat me up and there you go, blood to blood transfer.  Anyway, in the early '90's I did Interferon to put the Hep C into remission.  Kind of worked but it killed my Thyroid.  I've been on Synthroid, generics do not work as well, for over 20 years, had a couple of med adjustments.  Works great.  Never had the Thyroid removed, saw no need for it.  But the meds work great, adjusting them to fit you can be tricky, but once you get the dose right the meds work great!
I'm so sorry to hear about your cancer, I hope it'll be okay.  On top of everything else, it is the last thing you need.  Always get the brand name meds for your Thyroid, generics  just don't seem to work right! 
Best of luck to you, I'm sending you some good karma!!!!

In the late 70's my husband noticed a minor swelling in my neck when he looked at a photo of me!  I didn't notice a thing BUT I was experiencing a huge surge of energy which was atypical for me but very enjoyable!  Turned out it signaled a hyperactive thyroid which needed to be taken care of.  So, I swallowed a dose of radioactive iodine and have been on thyroid medication ever since.  TSH levels taken every 6 months which sometimes leave me needing me to adjust the dosage of the thyroid medication I take.  No biggie.  My J-pouch was created in 2001 with takedown in 2002.  No additional problems with my levels of thyroid hormone after J-pouch creation.  I don't even miss having a thyroid gland.  Guess I could say the same about my colon!  Best wishes, CT!!!!  I know you'll do just fine.

What thyroid med and what dosage are you taking if you don't mind me asking.

I take Synthroid, .125 mcg every morning.  I take it at least a half hour prior to any other meds.

 

Glad to hear that there may be options for you. Having some choices always gives you more of a sense of control. Looks like you have a great doc, which is always reassuring when we deal with scary diagnoses!

 

Jan

I'm so sorry to read this. We deal with enough as it is. Here's hoping you can out of this mess soon and feel great again.

Bless your PCP!  I've had hypothyroidism for at least 20 years.  I had very few increases or decreases in the medication until my j-pouch surgeries.  It was haywire for at least 18 months and it's bad again. My PCP was testing me every 6 weeks and increasing the dose each time. A blood testing at Mayo's was so bad that my PCP said if it was that bad I'd be in the hospital.  She tested it several days later and it was almost 12.  The normal range is .3 to 4.2 with 2.5 being optimal per my GINP at Mayo. 3 years ago when tested at Mayo it was .03 so I have a very temperamental thyroid disease! I have fibromyalgia and chronic fatigue so I have been really dragging on this year.  

 

I saw an endocrinologist for a few weeks ago and she said 6 weeks is not enough time and is having me stay on the current dose for a few more months.  It's frustrating as it affects your metabolism and therefore your entire body.  Sorry to stay it's not always as simple as taking the little pills.  I thought it was a dream disease before my UC diagnosis. I'd say comparing it to other diseases it was not a bad one to have.

 

She also stressed the importance of taking the medication at the same time every morning and to wait TWO hours before eating or taking other medication. 

 

I'm sorry you are facing surgery and cancer treatments. I hope it was caught in time.

 

I'd like to take this opportunity to tell all about a simple preventative measure they can do. When getting dental x-rays please request the neck lead protection in addition to the normal one they use.  The person taking the x-rays leaves the room or is in full lead protection so it makes sense for everyone to have as much protection as possible.  I ask for it every time when the hygienist or assistant doesn't automatically use it. I'm not saying dental x-rays caused your cancer but they might have contributed. Like everything else, we don't always know what caused our medical problems.

 

Good luck with your surgery and recovery.  I hope everyone else facing thyroid problems the best as well. 

CT, I just want you to know I wish you the best.

Thanks for all the well wishes.  Just so you all know, I called my primary care doctor after my diagnosis came back and thanked him for spotting the issue (and to discuss his thoughts on surgeons to do the job of removing the thyroid and possibly other tissue).  I said to him, "hey, you saved my ass!"  He's actually a really good guy and a good doctor.  He does a real thorough physical exam on me every year and always feels my throat and also checks my prostate.

 

And the endocrinologist did mention to me that x rays and the doses of radiation received from them could cause thyroid cancer, and I have had more than a few over the years. We'll never know for sure if x ray radiation caused it, autoimmune disorder or something else. All we know for sure at this point is that I have cancer in my thyroid.  I do find it ironic that radiation can both cause a thyroid cancer, and is also used to insure extermination of it (via radioactive iodine).

Hang tough, keep your attitude positive and don't discount the power of prayer.

My labs came back today and my internist called telling me I needed to lower my Synthroid dosage again.  Seems as though the older I get....almost 75.......the less Synthroid I need!  He told me taking too much increases the bone density problems I already have.  So......tomorrow I start taking 100mg daily instead of 112 mg.  I've only been on the 112 mg dosage about three months.  He plans to check my levels again in three months.  When all is said and done, I can't even tell I'm taking a thyroid supplement!  It's all good (I guess!).

Wow I am grateful for this place! Right after my jpouch I developed unipolar thyroid nodules and had biopsies. All was okay but I was referred to endocrinologist who found antibodies to adrenal glands and thyroid. I am on thyroid meds (armour) and have adrenals checked every three months.  It never dawned on me those could be related?

So the biopsies on my lymph nodes came back negative for metastasis of the thyroid cancer, but they found some epitheloid cells which create "low suspicion" and warrant ongoing monitoring.  Those lymph nodes will be examined more carefully when they cut me open.

 

Surgery to remove the thyroid and the papillary thyroid cancer is scheduled for Tuesday, July 14, 2015.

Sounds good. Good luck on your upcoming surgery. Should be a breeze compared to your past experiences.

 

Jan

I'm having thyroid issues now also.  I've been on Synthroid .125 mcg for years since my thyroid died in the early 90's.  Now, since my colon removal, my thyroid seems to have messed up, so they are lowering my dose to .50 mcg.  Does anyone know what I should watch for indicating the dose is too low and does anyone know if the surgery had a negative effect on my dose.  I don't want it lowered as I feel great at the dose  at!!!

@Nora S.,

I'd was treated for my thyroid and the medication dosage only changed a few times from the late 1990's until my surgeries the end of 2010. It took at least 18 months for the dosage to stabilize. I was on every dose between .75 or .88 to .175.  Currently I am on the same roller coaster of testing and prescribing different medications again - Since early February.  I've gone from 112 to the current dose of 175.  My Internist was having it checked every 6 weeks.  I recently went to see an endocrinologist who said I need 3 months on doses before retesting plus to take the meds at the same time each daily and 2 hours before I take any other prescriptions or food.

Our thyroid's affect the entire metabolism of our body and my GI stresses how important it is.  I can't tell one way of the other about symptoms as I have so many medical problems it is impossible to know what is causing what.  The symptoms overlap.

 

@CTB,

 

Good news and mixed news regarding your test results. Good luck with your surgery!

 

Thanks for the feedback and information, everyone.

 

Getting the synthroid dosage right is one of the things I am worried about after thyroid removal surgery.  I have great confidence in the endocronologist I am seeing, but I am told here and from others that this can be a tricky thing to get the dosage right.

 

I was also told two things by my surgeon this morning: they will put me on synthroid immediately after surgery, and the decision on whether I have to take the radioactive isotope will not be made until after the surgery.  If I need radiation, I will go off synthroid for about a week before being irradiated.  My surgeon told me that the decision to irradiate or not is largely determined by two factors: (1) size of the tumor, and (2) age of the patient.  In my case, he told me I am "right on the cusp" of being a radiation candidate, due to having a small tumor (1.1 cm) and my age (52, which isn't terribly old, but on the other hand I am no spring chicken either).  Final decision on radiation will be made after they cut me open and get a peek at what is inside.  He sounded like he was leaning towards giving me a lower dose of radiation.

 

I was also told that since I live alone, no need to move out for the period of the radiation. In the UK they put you in isolation in a hospital room.  Here they discharge patients and tell them not to come in contact with others especially pregnant women and children.  People I have spoken to who had thyroidectomy and radiation checked into hotels if they lived with other people, because the radiation leaves your body through your urine and the toilet becomes radioactive to others in the household.  In my case I live alone, so my surgeon said it is okay to stay in my condo if I have radiation.  But will probably be a good idea to flush 2 or 3 or 4 times.

My thyroid levels seem to need adjusting quite frequently as I age.  My doctor checks it every three months.  He has told me it is a good idea to keep the medication a bit under what seems to be necessary because too much medication increases the occurrence of bone density problems........which I do have and don't need it to worsen because of thyroid meds! I don't notice any difference since lowering the dose of Synthroid from 175 to 100 this past year. 

I wonder if those flushing instructions ("2 or 3 or 4 times") have been updated as toilet flush volumes have dropped substantially. In any case, if you have a modern low flow toilet, I'd suggest leaning toward the larger number of flushes.

Scott,

 

My "home toilets" (two) have sort of an average flush volume based on the many, many, many, many toilets I have sat on and flushed in my life.  But I like your thinking - and my gut says 4 flushes per each urination during my period of radioactivity.