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.

For me I couldn't tolerate the synthroid very well. It was brand name only of course but it didn't matter. It made me jittery anxious and sleepy at the same time. I tried compounded and then switched to armour thyroid. Most endocrinologists don't like armour but it is the only thing that works. I put on weight during the synthroid trials which was an unpleasant side effect. Since I had autoimmune thyroid issues ( antibodies) armour seems to be a good choice.

Always get your reverse T3 checked to at least eliminate the possibility of having this problem. Also, many people do much better T3 or a T3/T4 combo.

Nora

 Ask your Md what time he like you to take your replacement.I take my hormone replacement at bedtime with about 60cc of water.

I have been retesting for a long time about every 6 weeks.My tsh has been fluctuating alot

Key to hypothyroidism is to suppress the TSH . Many of us have mal absorption woes.Discuss with your Md where he like your TSH to be at.

Do you take other medication which can effect your Tsh

Cassiecass

cassiecass,

 

I've never been told I could take my thyroid medication at night so I am going to ask about doing that.  I finally asked my Internist to refer me to an endocrinologist a few months ago.  As I posted before, I had a problem after my surgeries 4.5 years ago.  I'm having it again.  My doctor has been retesting me every six weeks and increasing the strength each time.  It took me a long time to get an endocrinologist's appt. I'm glad I brought my current prescription bottle with me.  The doctor insisted I was on .150 as that was what the records she'd received from my internist said.  I pulled out the bottle.  I knew what I was taking and she was ticking me off.  She stared at the bottle, looked at my paperwork and shook her head.  The reason it took me so long to get into see her is because she wanted me to be on the .150 dose for 3 months before new testing.  This did not get communicated to my doctor or or nurse, if communicated at all.  So we had a failure to communicate. Now her attitude was better.  Sorry for dragging this along.  Hopefully you might benefit from this story.  

 

She said getting tested every 6 weeks is too soon.  She now feared I was on too strong of a dose.  She wrote a lab order for the last 2 weeks in July.  I think I should have gone to her sooner.  I have taken every strength of Levothyroxine from .77 ( or 88?) to .175 over the last 4.5 years.  

 

When I was at Mayo's in Feb. the rest results were 19.8 with the normal range being .3 - 4.2.  I was tested there May of 2012 at .03.  Both results are bad and my GI is the one that stresses the importance of having it under control.  I emailed my doctor from Mayo's, in Rochester, and asked where she wanted me to get it retested.  Her nurse called and said that she, the internist, wanted to see me in her office the next day.  She said if the ready was really 19.8 I would be in the hospital.  The next test came back at almost 12.  She was testing me every 6 weeks and increasing the dose from 112 to the latest 175.  

 

My last 2 PCPs prior to my current one, tested at 6-8 weeks as well.

 

Because the new doctor instructed me to take the pill at the same time each day and not eat or take other medications for 2 hours I'm setting my alarm in order to take the tiny pill at the same time daily.  My current PCP had instructed me to wait 1 hour and the prior ones didn't tell me anything - but it rarely changed.  

 

I bought an alarm pill box.  It holds 7 days with 4 different partitions per day.  I've been using the same storage solution for years but ran across this alarmed version at Walgreens. It isn't working.  I am sleeping through the alarms.  So I am now setting my cell phone on the most obnoxious ring tone - "Rooster".

 

I'm going to be back at Mayo's the end of July for another pouchoscopy and am taking her lab order with me. My j-pouch has almost become a full-time job.  I need a vacation from my body or a new body. 

 

 

 

I wish you all the Best  CTBarrister

Speedy recovery.For thyroid cancer support look into www.thyca.org/ 

 

Let us know how you are.

 

Cassiecass

 

Sounds like you are in really capable hands. I hope all goes smoothly and you have a speedy recovery.

CT, you've been on my mind of late. Wishing you the speediest of healthy recoveries. I hope you are back to your self in short order.  Sounds like you have a good plan in place. Thoughts will be with you on Tuesday.

Thanks for all of your replies.  I am looking forward to getting it over with.  My parents are driving up from Florida and they will be with me Tuesday when I have the surgery.

I hope you get to keep the other side of it and hopefully avoid radiation.  That can be some nasty stuff - kind of like prednisone.  You need to take it but don't want the side effects! It will be nice to see your folks too.

Good Luck

 

My endocrinologist seems to think that if the hemithyroidectomy is done and most of the left lobe is left in, it's "50-50" as to whether I will need synthroid, and I will know based on how I feel within two weeks of surgery.

 

For the hypothyroid folks, what symptoms will indicate that my remaining thyroid lobe is not getting the job done on producing enough thyroid hormone?

 

By the way, my presurgery blood labs showed my thyroid hormone function is "completely mid-normal" according to my endocrinologist.  I guess that cancerous nodule isn't impacting on the hormone production.

I wanted to post on what happened with my surgery yesterday.  I am at home resting comfortably and have not taken any pain meds since last night. This post also has relevance to an ongoing issue in this thread which is T3 and T4 synthetic hormone levels.

Although the game plan going into surgery was a partial or hemithyroidectomy, we unfortunately had to go to plan B.  When they opened me up they examined an adjacent lymph node to my thyroid which had showed as "low suspicion" on ultrasound. They cut 6 mm, examined in lab and found the thyroid cancer in it.  The lymph node was removed. This also led to the entire thyroid, (left lobe, right lobe and isthmus) also being removed.  The total time of the surgery was 4 hours and 15 minutes.  As a result of the finding of a spread (albeit a minimal one) of the thyroid cancer, I will be having radioactive isotope therapy in 6 weeks which my surgeon is very confident will irradiate remaining cancer (if any).  He said my survival rate is not much different than if they had just taken out the 1.1 cm tumor in the thyroid itself.  This treatment will consist of taking me off synthroid for a week, starving my body on an iodine free diet, and then administering radioactive iodine.  Any remaining thyroid cancer cells will be starved of iodine, will suck up the radiation and be killed (or so we hope).

After surgery, I felt very minimal pain which was completely extinguished with dilaudid.  No nausea at all. Nothing other than feeling sedated and relaxed. I had 2 percocets at bedtime last night and nothing since, so my mind is clear as I write this.  They woke me up 3 times last night to check my calcium by pricking me in the hand and taking blood to check my calcium levels. They all came back good.

I was discharged this morning from the hospital. I was very surprised by the lack of pain and I feel none at all right now.  I have 2 drains in my neck and a big dressing which my surgeon will remove tomorrow.  When they changed the dressings this morning they said my neck looked good.

I have been started on a synthetic thyroid hormone called Synthroid, effective immediately, because I have nothing in my body producing producing thyroid hormone and it's necessary to regulate one's metabolism. My dosage is 137 mcg which my ace endocrinologist told me is based on my body weight and not my blood TSH labs which, despite my cancer, were completely normal.  I will have to take synthroid for the rest of my life. Interestingly ace endocrinologist overruled the hospital which had given me a scrip for 25 mcg of T3 which my endocrinologist told me is a 7-8 year old protocol that has been abandoned in modern endocrinology.

My restrictions right now are no driving for 3 days (they don't want me moving my neck left and right), no lifting, and I have to keep my head elevated tonight due to the drains.  So will probably take pain meds tonight just to get to sleep on 3 pillows which surely will not be easy when I have trouble sleeping on one.

My Dad is in town and driving me to the pharmacy and doctor's appointments, of which I have two tomorrow and then one next week.

I feel very comfortable, and I feel I am getting tremendous medical care by both surgeon and endocrinologist who work together as a team even though they are In different practice groups in the same town. I am going to have to take synthroid the rest of my life and hopefully the dosage will be correct to maintain my energy levels but other than that my chance for a complete recovery is very high and according to My surgeon is close to the 98% national average.

Let me know if you have any questions and thank you all for your support.

Thank you for taking the time to post. You have been in my thoughts. Take it easy and rest. Thinking good thoughts
Kate

Good luck for an easy recovery, CT.  Perhaps a recliner (if you have one) might give you more reliable elevation than pillows. 

Sounds good, even if not the plan you hoped for. Good luck, and take it easy!

 

Jan

Wishing you  a speedy recovery/

 

Cassiecass

On the positive side, it has been my experience that Synthroid works quite well for those of us without a colon.  Over the years.....quite a few years......my dosage of Synthroid has changed.  My doc checks my levels every 6 months unless he changes the dosage.....then three months after he has changed the dosage of Synthroid.  As I get older I seem to need less Synthroid.  They like to keep the Synthroid dosage on the low side because there is less chance of bone loss......I guess too much thyroid hormone encourages bone loss and I already have osteopenia.  I just take what they tell me to take!  Fortunately, it is a reasonably priced medication and easy to tolerate....for me, anyway!  Oh, I've been on other forms of thyroid hormone but my endocrinologist finally suggested Synthroid even though it is a brand name and a bit more expensive.  I do what she says.  So, even if you have some fluctuations in dosage don't be concerned.  Our needs seem to change as our bodies change......we lose or gain weight, for instance.  Oh, FYI, my thyroid gland was treated with radioactive iodine in 1978 because it was hyperactive.   Best wishes!

I'm glad they think they got it all with good margins. Unlike CeeeeCeee my thyroid has been bonkers since my surgeries 4.5 years ago.  Some of it was due to the rapid weight loss I experienced.  I printed off a graph of my weight for the last 9 years of office visits and took it to the endocrinologist.  I marked important events, like the surgeries.  She was glad I did so. In other words your right, weight is a big part of it.  (The doctors didn't know graphs could be produced from their on-line patent records program. The accountant never wastes an opportunity to create a graph.) So there is a reason they weigh us at every appointment.  It sounds like your weight has been steady so hopefully the dose is correct.  You will know it when your metabolism declines, unless you have other health problems that include chronic fatigue. 

 

If your insurance company forces generic synthroid on you please have your doctor specify that you need the name brand.  I found out the efficacy can vary 5% either way and was 10% until recently.  If generic is ok please watch out for changing of producers as well. 

 

Great catch by your GP! 

The insurance company can't force a generic drug, though they can pay little or nothing for the brand name on some policies. 

My insurance company forces additional documentation for some prescriptions that they determine for whatever reasons.  For example Cymbalta and several other medications I have taken over the years. Also right after my first j-pouch surgery my insurance company sent me a letter stating they would no longer cover Asacol as of January 1 the next year.   If an insurance company makes you pay for it all, it isn't covered. 

Armour Thyroid is not covered by my insurance  and neither is the compounded t4 I used to take so I had to pay cash. Worth every penny I can't tolerate synthroid! I do know that my weight and pouch flares require constant dose monitoring and altering. Sometimes I don't absorb it well and levels fluctuate. A good endocrinologist checks labs frequently so I am lucky.it is another thing to be vigilant about.

CT, glad you are at home resting.  Don't stress, your levels should straighten out.  I assume they saved your parathyroids, thus the calcium checks -- and those little buggers will keep on working.  Try to have patience while the synthroid is adjusted. The isotope therapy works really well, and you should be good as new in no time. (Assuming the most common type of thyroid CA.)  One day at a time -- you will have to let us know if your preoperative prediction of being down for 3 days before you are back at the grind comes to fruition.    

katenet,

I appreciate your reply.  I can see now another reason why my thyroid levels are all over the place.  I have had many problems with my j-pouch and it has been particularly erratic of late as my pouchitis has progressed.  It's not under control with antibiotics, soft diet and all. No wonder it was so high in February when I was at Mayo getting a balloon dilation of the efferent limb. The contrast x-ray also revealed that my entire pouch was inflamed. It tested at 19.8 and 3 days later back home at almost 12, an 8 point difference in 3 days. I trust Mayo's lab.  It's a see saw.  My GI says I need to get my thyroid under control and that will improve my pouch problems.  It looks like my pouch is affecting my thyroid function.  

 

Thanks for letting me post about my problems CTB.  I'm very ill and scared.

My copay on my synthroid 137 mcg is $33.00 so I don't think it's the generic stuff!!! It's a small blue pill. I took it at 5:30 am this morning two hours before food and other meds as suggested by TE Marie. I slept great last night using percocets and my head elevated on two big pillows. The dressing on my neck and the two drains come out this morning. Thanks for all the posts especially on synthroid and all the other info and suggestions. You guys are the best!!!

Thumprhare, my understanding is I had a complete thyroidectomy which means the parathyroids came out and there is no thyroid tissue left, unless there are some cancerous thyroid cells still floating around in my lymph nodes which will hopefully get zapped when I take the radioactive isotope.

My endocrinologist told me the pathology on all my labs hasn't come back yet and he wants to see those before making any adjustments in the synthroid and the isotope treatment regimen which will be coming in around 6 weeks.

The parathyroids are not removed (at least not intentionally), even with a total thyroidectomy. They are separate glands. But, they can be traumatized during the dissection, so that is why they need to monitor your calcium levels (important for nerve conduction, muscle function and heart function). 

 

Jan

Thanks for that explanation Jan. they were waking me up every two hours to draw blood to check calcium levels and giving me 500 mg tums tablets. I looked at a pic of the parathyroids and I thought they were part of the thyroid, but glad to know they left them in there.

Yes. Much more difficult to live without parathyroids than the thyroid!

 

Jan

Finally a plus to having to get up each night about 2:30 a.m. to empty my J-pouch.......I take my Synthroid medication at that time!

CeeeeCeeee:::  Hysterical!!  I'm still with the bag and I get up at 2 am to dump the bag.........and let the dog out to go potty!!!!  😎

2 Am    guess we all have about the same time 

Cassie

So I am going to have to get up early to take synthroid so I can eat breakfast at my normal time? If I eat breakfast at 7 am I need to be up at 5 am to take the synthroid?

Doesn't have to be two hours before you eat just on an empty stomach.  So if your stomach is empty at midnight take it then.

It does need to be spaced 2-4 hours from any calcium or iron supplements.  You got this. And yes, parathyroids are important and all attempts are made to not disrupt them during thyroidectomy....like Jan said.

2 hours before any other medications or food, per my new endocrinologist. Plus she said to take it at the same time daily.  I think the 2 am suggested times are great ideas  I have to take my PPI and wait a while before eating so I have a 3 hour before food issue.  I have an alarm pillbox but sleep through the alarms.  I have it set for the thyroid med, then GERD and the at 4 hours after the thyroid time to take vitamins and a 4th time for my mid afternoon medications.  

 

I sleep through the alarms so now have my cell phone alarms going off too.  I am a professional sick person and hate it!  

 

Hey everyone I attached below a selfie of my sutures so you can see where they did the incision.

It looks like someone tried to slash your throat!  It will heal nicely and was probably just longer because they needed to insure they got it all out.  It's just a little bit longer than what happened to a lady I know who had goiter surgery.  

It looks good from here! Glad you are feeling up to selfies. 

It seems they got the dosage right with 137 mcg synthroid because I feel the same as I did when I had my thyroid! I don't miss it!

 

I assume you are kidding about the haz-mat suit. If that was a reasonable solution, they would not let you out. Best bet is to hang out in your condo for the most part and don't let kids sit in your lap! Lots of people have done this and it worked out. My friend even had young grandkids that she usually would provide daycare for, but she just took a week or so off. 

 

Soon this will be a distant memory!

 

Jan

CT, 

I too never missed my thyroid after surgery, and I've never had problems with my dose of synthroid in the past 9 years. This whole procedure goes really well for most people. 

 

The 2 weeks of low-iodine (I'm pretty sure I had 3 weeks, but maybe it just seemed that long because that restricted diet was tortuous to me), coupled with the fact that you are completely off the synthroid (at least that's how it was done in my case) made for a miserable few weeks.  Not painful, just frustrating. No dairy, no bananas, no eggs, no potatoes, no breads, no salt!!  You 'll be SO happy when it's over.  The radioactive pill has no side effect on me what so ever.  My only glitch was that after the Geiger counter test, I had to do a second round of the radioactive iodine because there were still cells hanging around. It just prolonged the misery a bit. Sorry I keep calling it misery BUT I LOVE to eat!

 

good luck in your journey. 

C-jay

Jan-

 

Yeah, I was being sarcastic about the Haz Mat suit.  But in reading the protocol sheet they gave me they said that there should not be prolonged contact with other humans for 7 days but "brief hugs and handshakes" are okay.  It just sounded kind of funny.  Would you want to hug me knowing I just took that radioactive iodine pill?  Also, I was told most of the radioactive iodine is out of my body in 7 days but the protocol calls for no "unprotected" sexual relations for 30 days.  There is no way I would endanger a sexual partner and have any sexual relations of any kind for at least 30 days.  It's just a bit odd to me how the protocol is described in the sheet they gave me.

 

C-Jay,

 

Although in past years the protocol did call for taking the patient off synthroid for 2 weeks, that is no longer the protocol.  They keep you on synthroid.  Instead, in the two days before you consume the radioactive iodine, they give you shots of thyrogen.  Thyrogen is a substance that dramatically elevates your TSH levels before your body is bombed with the radioactive iodine which then "seeks and destroys" any remaining thyroid cells which, due to being starved of iodine, suck up the radiation and are killed.  It seems that only remaining thyroid cells are attracted to and effected by the radiation, which makes the treatment so highly effective.

 

I am not looking forward to the iodine free diet, and the timing particularly sucks because in my area they have an annual event called "Lobsterpalooza" (basically a lobster and seafood festival) which I will not be able to attend.  Usually my whole firm goes and local civic leaders and it is a fun event with music and dancing and a raffle with prizes.

 

I did have a major concern about whether, being the colon-less guy that I am, my body would be getting a sufficient amount of sodium on this diet.  MY PCP reassured me that for 2 weeks it should not be a problem and I will get enough sodium by eating the fresh, non-processed meats (up to 6 ounces per day) that are allowed on the diet.

 

I am also concerned about a possibly "no fly" list issue or setting off radiation detectors at airports and my PCP told me that this is a valid concern and I do intend to discuss it with the the employee of the Nuclear Regulatory Commission I am required to meet with.

My endocrinologist’s office has implemented the following timeline as far as my radioactive iodine treatment:

 

August 31- I start low iodine diet for 14 days. I will continue to work at the office.

September 14- I will receive a Thyrogen injection at 8:30 AM. at endocrinologist's office.  This is a substance that elevates thyroid stimulating hormone levels.

September 15- I will receive a second Thyrogen injection at 8:30 AM. 

September 16 - I will consume a radioactive iodine pill at the hospital. At this point I will stop working at the office.

September 16-23 - isolated from the rest of humanity.

September 23 – I will have a scan done to determine if there are remaining thyroid cells in my body- cancerous or otherwise.  My endocrinologist told me they will light up on the scan if they still exist because of the radiation they have consumed.  

 

It appears as though my period of isolation and working from home will be September 16 through September 23.  However, my endocrinologist's office cautioned me that the final say on the exact period of my isolation, and whether it may extend past September 23, will be determined by a member of the Federal Nuclear Regulatory Commission, with whom I am required to meet the week before I take that radioactive pill. However, it is likely to be 7 or 8 days based on the protocol I received. When I am deemed safe, I will return to work.

 

I intend to ask Mr. or Ms. NRC rep if I will be put on a no fly list and when I will be safe to get past airport radiation detectors, this due to a possible trip to the Bahamas in November.

I'll put in a good word for you, with my buddies at the NRC, so you will be cleared for Bahamian travels

Hi, just an update on my thyroid cancer treatment which may be of interest to any J Poucher stricken with papillary thyroid cancer.

 

So as I write this I am quite radioactive due to imbibing radioactive iodine this morning.  I arrived at the Smilow Cancer Center at Yale New Haven Hospital at around 9:45 am.  this morning. With the radiologist’s blessing I preemptively popped an anti-nausea pill called Zofran at 9:55 a.m.  I ended up drinking a 150 millicurie dosage of radioactive iodine in liquid form at 10:15 a.m. They elected to give me the liquid rather than the usual pill format because I do not have a colon and have possible gastrointestinal absorption issues with pills. The liquid iodine is served in a small lead canister, totally enclosed, with a thin sipping straw sticking out. I had to drink a small quantity as it is very highly concentrated - 3 millileters, and including the saline flush probably less than a 1/4 cup of total liquid was consumed.  It tasted like salt water, and though not pleasant was certainly not undrinkable, especially such a small amount.  

 

After the radioactive iodine was consumed I was permitted to flush this down with water.  There were 3 radiologists as well as a radiation safety specialist present throughout the procedure.  After the consumption of the liquid was complete, the radiation safety specialist took out a geiger counter like device and while at a 3 foot distance, scanned my body with it for a radiation reading. My radiation level was off the charts, especially in my neck.  I was then discharged to go home.  So far I feel fine, although I am expecting that could change as the day wears on and possibly by tomorrow morning.  I am ready for all of that.  I was again told to suck on sour hard candy every hour starting tomorrow morning, in order to stimulate salivation and get the radiation out of my salivary glands, which is where the radiation will concentrate.  i have a bag of Warheads (the pucker party pack), sugar free Jolly Ranchers and lemon drops to add some variety.  The Warheads are great and really get the salivary glands going. I was also told to drink water constantly and that most of the radiation will be out of my body by Saturday morning.  I am allowed to go out to the gym Saturday if I wish.  I can return to work Monday, but I am in complete isolation at my condo until Saturday morning per orders of the radiation safety specialist.  I live alone so this isn't a problem.

 

I intend to watch the Republican candidate debate tonight for entertainment purposes only. Hoping everything will go okay and no damage to my salivary glands, but we shall see.

 

Are you allowed to take a warm bath? 

Maybe a leisurely soak and a hot tea with honey would help you get through the evening...and get some rest.

I find that lollypops work best for me when I need to keep salviating but don't want to ingest too much candy (does't happend often!)

Do you glow yet? (sorry just had to say it!)

What happens after this treatment? What is the next stage for you? How do they test for effectiveness?

Good luck and hang in there

Sharon

Sharon,

 

Frequent showers are encouraged. Tea, however, is banned on the low iodine diet, as is instant coffee.  Certain herbal teas, like peppermint for example, are very high in iodine.

 

The next step is a whole body scan on Sept. 23, one week from today, at which point my low iodine diet will end after 24 days.  The purpose of this scan is to determine if there are any remaining thyroid cells in my body (cancerous or otherwise), and if so, their location.  Thyroid cells "suck" up the radioactive iodine because they have been starved of it, and are killed by the radiation over the course of months.  However, in one week, any such remaining cells will "glow" on the whole body scan, and tell the radiologist (and my endocrinologist) the location and extent of any such remaining cells.  My endo Doc told me that if all they see is "normal neck uptake", or a few glowing cells where my thyroid used to be, my prognosis is excellent.  If on the other hand they see a glowing spot in my lung or my bones or elsewhere, there will likely be a followup scan and surveillance to determine whether this round of radiation killed it.  In most cases, the radioactive iodine is only given once.  So those are the next steps.