# My probably TMI surgery story



## joplin1975

I wanted to write up my surgical experiences with probably too much detail in the event someone else out there was planning on a total thyroidectomy and wanted the down and dirty details. Prior to this experience, I had never been in the hospital, never had surgery, and, aside from minor bumps and bruises, had never really been "sick."

You can read my introductory post here: http://www.thyroidboards.com/showthread.php?t=3597

The short story is during a routine exam, my doctor determined my thyroid was enlarged and after a summer full of tests, it was determined to be papillary cancer. We had not found anything wrong with the right lobe and so it was assumed that it was not involved. I know some doctors prefer to take one lobe at a time, but I was interested in a more aggressive approach for my own piece of mind. We found a surgeon who came highly recommended and who preferred to go with a TT followed by RAI route. I received my FNA results on the 9th of August, requested that we schedule the surgery as soon as possible, and was able to schedule surgery for the 29th.

I did not need a pre-op physical or testing. I was only required to have in-depth interview with a nurse two weeks prior to the procedure. She called about two weeks before the surgery and we went over the standard questions about health history, allergies, medications etc. She also talked me through how things would shake out on the day of the surgery and how to best prepare.

I was to stop eating at midnight on the 28th. I had a glass of water with my allergy medication on the morning of the 29th. Since I was an add-on, my case was taking place much later in the day. It was estimated to start around 3:30 and they wanted me to check in two hours before. We got to the hospital at 1:30, checked into the recovery care unit, and was assigned to a room. Once in the room, I was instructed to undress completely and put on one of those swanky hospital gowns and socks. Two nurses came in - one to complete the pre-surgical interview (mostly the same stuff about medications, allergies, when I last ate etc.) and adorn me with the awesome hospital bracelet and the other to start the IV. Since it was late in the day and I hadn't drank much&#8230;and because I was crying all morning long (yeah, anxiety was an issue)&#8230;I was dehydrated and getting the IV in was a little bit of a process that took a couple of tries to get it in.

Then we waited. And waited. And waited some more. I can't say I was in the best place at that point. Again I had issues with anxiety and hospital policy was to not give any kind of drugs until we had met both the surgeon and anesthesiologists. I can't say it was one of my best moments. Finally my nurse came in and said the OR had called and they were sending up a stretcher. She asked me to use the restroom one last time and by the time I was out, the stretcher was already there.

They wheeled me down to a "holding" area, where my wrist band was checked, type of surgery was confirmed, and my allergies were reviewed. The anesthesiologist came in to introduce himself and explain that I would first get a dose of versed and then later would get the other medications to knock me out. He explained the risk of swelling and, if that did happen, they would leave the breathing tube in my throat and keep me sedated until the swelling had subsided. My surgeon came in, reassured me, and then asked me if I had any other questions (I did not). I also met a resident and a med student. Then I signed all the relevant consent forms and the CNA began to inject the versed into my IV. My husband, by the way, was with me this entire time and was given a pager in the holding area so he could be notified when the surgery was over.


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## joplin1975

I recall feeling exceptionally better as soon as the versed was injected. I recall talking to the CNA about horses. I recall being wheeled into the operating room, although it was a little fuzzy. And that's about all I remember.
I'm told surgery took about three hours. Prior to going in, the surgeon estimated it would take a little over two hours. I, of course, didn't know any of this, but I mention it because my husband - who has over a decade of surgical experience - got really nervous when we hit the two hour mark and he hadn't heard anything. Nothing particularly noteworthy happened, but I had expressed some concerns about a few lymph nodes that felt weird to me prior to surgery and he was just taking his time to look at everything while I was open.

I woke up in recovery about 45 minutes after the closed me up. I had an oxygen mask on and remember being confused about why I had the mask on and why I was looking at a large digital clock they have in each recovery bay. I also remember being confused as to why my eyes felt gooey (vaseline). I also remember, prior to waking, having a VERY vivid dream about being on vacation in Mexico with my friends and family. Ergo, upon waking I asked the nurse what happened. She explained I had surgery and I was in the hospital. Always one to make a good impression, I said: "No, what happened to our tequila shooters?" Said nurse proceeded to nearly pee her pants. After she recovered her composure, she reminded me again that I had a thyroidectomy and I was in the hospital.

Once I get a little more clear headed, I told her my pain level was a 2.5 or 3 on a scale of 0 (no pain) to 10 (horrible pain). Looking back on it, I don't think I really had true pain, but I recall the tightness over my incision site to be uncomfortable. She gave me a dose of fentanol (via IV). I felt a little congested, like I couldn't take a deep breath, but aside from feeling groggy and confused, I felt ok. Fifteen minutes or so after I regained consciousness, I was wheeled back to my room.


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## joplin1975

My husband was there (yay!) and he and the nurse helped me skooch from the gurney to my bed. The nurse was going to put compression socks on me, but I really, really, REALLY had to use the restroom, so she and my husband helped me walk to the bathroom and, whhhoooo boy, did that ever feel good. My neck was sore so moving from one bed to another and sitting up in bed did ache a bit.

Once they got me tucked into bed, I tried some ginger ale. Swallowing wasn't too bad, but I did have a slightly sore throat. Still, it felt good to drink. My husband finally left around 9:30pm. I was not really able to sleep - I'm not sure if the fentanol had me agitated or if I was just out of sorts or if the hospital was just too noisy - so I mostly just watched TV and tried to relax.
At midnight, I paged the nurse and told her I needed to use the restroom again. She thought my color looked good and told me that if I could make it to the restroom by myself, had sufficient urine output (sorry, but like I said, it's the TMI version), and could walk around the unit twice, she was disconnect my IV and my compression socks. I was able to do all of that without any trouble and once I got back into bed and wasn't hooked up to everything I was able to get some sleep. I was not really in any pain - there was tightness in my neck, but no real pain - so I declined any pain medication.

At 5:30am, they took blood. At 7:00am, the resident stopped by and took off the outer layer of my dressing (basically a big bandage) to look at the incision. That was uncomfortable because the adhesive pulled at my skin. At 7:45am, my surgeon and the med students stopped in. He thought everything looked good, noted some very minor swelling but thought it was ok, and went over discharge instructions. Said instructions included no heavy lifting or activity that would cause me to strain, no driving until I could comfortably move my neck, rest until my follow up appointment, and I was able to shower. He offered narcotic pain relief. I asked for one pain pill for our trip home, but declined a prescription.

We were home by 10:00am and I slept on the couch for most of the day. I drank a ton of water and ginger ale, had a few bites of pasta, and went to bed by 7:00pm. I took motrin twice that day and iced once. 
I felt much better on Wednesday - less groggy - and continued to take the motrin on a schedule, just to stay ahead of any swelling or discomfort. Again, I'm not experiencing any real pain, juts annoying tightness around the incision.

Yesterday and today are also better. The residual swelling around my incision has gone down so the pulling/tightness sensation is diminished. I did light housework yesterday and took a short walk. Despite feeling better, I am feeling more fatigued today from, I think, the walk/housework. Since I'm following up with a RAI, I'm not on any hormone replacement pills yet. I expect this fatigue will get worse as we wait for my TSH to become elevated enough.

Honestly, my biggest issue has been that the surgeon put in what my husband is describing as a running stitch. At both ends of my incision, there's a small loop and knot. I have cats, one of whom is obsessed with string of any kind and who usually sleeps around my neck. So I've taped gauze over the incision/steri strips so make sure little claws don't yank and pull during the night.


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## webster2

Hey, good report! I am really glad you posted it. I think it will help others. It is great that you put it up here while it is still fresh in your mind. Our experiences are very similar, but I did mine last week, and forgot a lot!

I hope you can keep the cats' claws at bay! Keep resting and doing what you feel you can. Take care.


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## Andros

joplin1975 said:


> I recall feeling exceptionally better as soon as the versed was injected. I recall talking to the CNA about horses. I recall being wheeled into the operating room, although it was a little fuzzy. And that's about all I remember.
> I'm told surgery took about three hours. Prior to going in, the surgeon estimated it would take a little over two hours. I, of course, didn't know any of this, but I mention it because my husband - who has over a decade of surgical experience - got really nervous when we hit the two hour mark and he hadn't heard anything. Nothing particularly noteworthy happened, but I had expressed some concerns about a few lymph nodes that felt weird to me prior to surgery and he was just taking his time to look at everything while I was open.
> 
> I woke up in recovery about 45 minutes after the closed me up. I had an oxygen mask on and remember being confused about why I had the mask on and why I was looking at a large digital clock they have in each recovery bay. I also remember being confused as to why my eyes felt gooey (vaseline). I also remember, prior to waking, having a VERY vivid dream about being on vacation in Mexico with my friends and family. Ergo, upon waking I asked the nurse what happened. She explained I had surgery and I was in the hospital. Always one to make a good impression, I said: "No, what happened to our tequila shooters?" Said nurse proceeded to nearly pee her pants. After she recovered her composure, she reminded me again that I had a thyroidectomy and I was in the hospital.
> 
> Once I get a little more clear headed, I told her my pain level was a 2.5 or 3 on a scale of 0 (no pain) to 10 (horrible pain). Looking back on it, I don't think I really had true pain, but I recall the tightness over my incision site to be uncomfortable. She gave me a dose of fentanol (via IV). I felt a little congested, like I couldn't take a deep breath, but aside from feeling groggy and confused, I felt ok. Fifteen minutes or so after I regained consciousness, I was wheeled back to my room.


Thank you so much for your labor of love! You will have helped many who post here and are scheduled for surgery.

Too funny about the "Shooters!"


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## mysarojane

Than you so much for sharing your story! You write so well!

I, too, had vivid dreams. Long (seemingly) very vivid dreams. Some were actually disturbing. And I didn't really sleep at all in the hospital until day 4 when I think my body just finally gave in.

Glad you're doing well too. Last night, after 3 hours of school and then meeting friends for dinner, I was exhausted and went to bed a 830. We just have to do what we can and remember to listen to what our bodies are telling us!

Sarah


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## kitkat

Glad to hear you are doing well joplin. I, too, had my surgery monday the 29th. I arrived at 10 am for a noon surgery and thankfully all was running on schedule. My husband and daughters were able to stay with me for the pre op prep which was good cause I was very nervous also. Everyone explained everything to me very clearly which is also good cause I'm a need to know kinda person and helped calm me down (somewhat). I got versed prior to entering the or doors and don't remember more than a minute or so after that. When I woke up in recovery I saw the surgeon wandering about and apparently I immediately started talking (no surprise to my husband). I was surprised later in the evening how little pain I was actually having. They kept me overnight because I had a drain tube in and I ended up only sleeping 3 hrs all night probably because they had me inclined and it's really hard to sleep like that so i enjoyed tv most of the night. Went home the next day with no pain pills..partly because I felt pretty good except for some difficulty swallowing which left the next day and partly because I have chronic fatigue syndrome which has caused me to have multiple allergies to medicines. Right now the only annoyance is the tugging feeling from the glue on my incision and the rash I have developed yesterday which is finally diminishing some today from my CFS...i have had this before, it's as if my body is fighting it's own immune system to heal (very strange....) 
They took the right side only since the left side was healthy so I will have to wait about six weeks to see if I need synthetic hormones or not..guess it's a 50/50 shot on that. Apparently the right side was massive -- orginally thinking it was 4.5 cm according to ultra and ct -- but had actually grown into the chest somewhat...it had been there for a long time (my bad as I was too scared to catch it years ago) FNA had shown benign and the surgeon did a frozen path section which confirmed that ..but it will still be sent on for testing but I feel good about it. 
Glad to be on the recovery side of this thing..I had a nine week wait between my consult and an availability ...jeez that was looong!!!
Still have some swelling on the top of the incision that pooches out and makes it more noticeable than it might otherwise be but other than that I am looking forward to a good recovery and a goiterless me!!!
Thank you to all the wonderful people in this forum...it made all the difference in the world to be able to share with people who knew what I was going through -- you are all great!!!!


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## joplin1975

The pathology results came back -- all good news, although I had some details wrong.

In total he took ten -- not three -- lymph nodes. Three of those had minor, minor evidence of cancer, but those were the three closest to the thyroid. The others which were farther away were clear. Everything in the nodes and thyroid itself was papillary, so PHEW.

Follow up this Thursday...can't wait to get these stitches out. They don't bother me, but it sure looks ugly.


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## Andros

joplin1975 said:


> The pathology results came back -- all good news, although I had some details wrong.
> 
> In total he took ten -- not three -- lymph nodes. Three of those had minor, minor evidence of cancer, but those were the three closest to the thyroid. The others which were farther away were clear. Everything in the nodes and thyroid itself was papillary, so PHEW.
> 
> Follow up this Thursday...can't wait to get these stitches out. They don't bother me, but it sure looks ugly.


I am so glad for this excellent news. Pamper yourself now and put your worries behind you!


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## joplin1975

Hi everyone. I'm back at work today (two weeks post-op). Feeling good still, but I overdid it this weekend, so the fatigue is kicking my arse. Note to those who will undergo this procedure and not have replacement medication until after a RAI: do not *ahem* think you will have enough energy 10 days post op to help your husband replace your house's roof. Even if all activity restrictions are lifted. Hee. Lesson learned, the hard way of course. 

I had my stitches out on Thursday. No big deal at all. Surgeon would like to do blood work this Wednesday. He's comfortable proceeding with the RAI if my TSH is in the 35-40 range. *fingers crossed*

And, in the spirit of the continual over share, a few pictures:

This, is what my incision looked like about 10 hours after surgery (severely cropped because my husband took a picture of me and, whoo boy, I look like I was hit by a train):










And these two are from Saturday night, 13 days post-op and immediately after I removed the steri strips:



















Aside from the little spot of blood/scab on my left hand side, you can really barely see anything. I'm quite pleased.


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## webster2

Hey! Be careful with over doing! It can knock you for a loop. Your scar looks great. Glad you are healing well!


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## Andros

joplin1975 said:


> Hi everyone. I'm back at work today (two weeks post-op). Feeling good still, but I overdid it this weekend, so the fatigue is kicking my arse. Note to those who will undergo this procedure and not have replacement medication until after a RAI: do not *ahem* think you will have enough energy 10 days post op to help your husband replace your house's roof. Even if all activity restrictions are lifted. Hee. Lesson learned, the hard way of course.
> 
> I had my stitches out on Thursday. No big deal at all. Surgeon would like to do blood work this Wednesday. He's comfortable proceeding with the RAI if my TSH is in the 35-40 range. *fingers crossed*
> 
> And, in the spirit of the continual over share, a few pictures:
> 
> This, is what my incision looked like about 10 hours after surgery (severely cropped because my husband took a picture of me and, whoo boy, I look like I was hit by a train):
> 
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> 
> And these two are from Saturday night, 13 days post-op and immediately after I removed the steri strips:
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> 
> Aside from the little spot of blood/scab on my left hand side, you can really barely see anything. I'm quite pleased.


Your incision looks great! And yes; I should imagine you felt like you got hit by a train!!

You are going to feel really well in the months to come. I am so happy this is behind you!


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## I DClaire

I feel (and look) like I've been hit by a train now..._and I haven't even had surgery yet! :anim_63: _My pre-surgery information sheet says no makeup when I arrive at the hospital. I told the admitting nurse without makeup they'll probably think I'm already dead!

Helping roof a house? If my husband sees that, I'm doomed! I don't think I'll even feel like dusting for several months, maybe a year.

I've enjoyed and appreciated reading your experiences. Nothing makes the impression nor answers questions like information shared by people who have been there.


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## SnoodMama

LOL, I DClaire, I agree with you SHHHHH!!! about roofing a house!!!! I was hoping to fob off my housework for a little longer than that!!!! LOL about the dusting. Definitely it takes about a year to get back into condition for dusting!

Sort of reminds me of the pregnancy excuse to not have to clean the litter box... my husband had to take over that duty.

No make-up? I didn't get that instruction. I bet you could sneak a little lipstick in. I'm wondering if I could sneak a nip of sugar on my tongue the morning of the surgery. Does that count as eating???


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## joplin1975

Hee-hee. Well, as I've mentioned, I was asymptomatic prior to surgery. Running ~25 miles, in a training program with an ex-marine, riding horses, etc...we stacked 398 bales of hay the day before my surgery...I'm not good at self-limiting when it comes to activity, so this has been a, um, growing experience. :tongue0013:

I got the absolutely no make-up instruction. Snood, just so you know, they specifically asked me about lipstick twice before surgery because they do intubate you and if, when pulling it out, lipstick gets on the tube, they might mistake that for blood and would freak out without reason. There's a reason I cropped the pic of my incision 10 hours post-op...no make up + no real sleep = me looking like death warmed over. :ashamed0002:

Day two back at work and I feel better than yesterday. I don't know if it is a recovery from the damn roof or just me getting back into the routine of everyday life. Tomorrow is my first post-op blood draw. Cross you fingers for high TSH number so I can do this damn RAI and get back to the business of living!


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## Octavia

Joplin, your scar looks fantastic - I am so jealous!!! It looks way better than mine, and my surgeries were back in February & March. I think part of my problem is that I had surgery twice. The part of the scar that was only cut once looks great. Oh well.

Thank goodness my husband is an accountant...he doesn't do roofs! 

Glad you're doing so well. The hard part is over. The RAI is easy!


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## joplin1975

Octavia said:


> Joplin, your scar looks fantastic - I am so jealous!!! It looks way better than mine, and my surgeries were back in February & March. I think part of my problem is that I had surgery twice. The part of the scar that was only cut once looks great. Oh well.
> 
> Thank goodness my husband is an accountant...he doesn't do roofs!
> 
> Glad you're doing so well. The hard part is over. The RAI is easy!


Thanks! Yes, I was pleasantly surprised at how nice everything is healing. Yeah, my husband is an othro PA but he thinks he's a contractor in his spare time. *sigh*

Glad to hear the RAI is easy. I like easy these days!!!


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## SnoodMama

Eww about the lipstick and intubation tube. I don't want to think about the tube. Covering my ears.


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## Andros

joplin1975 said:


> Hee-hee. Well, as I've mentioned, I was asymptomatic prior to surgery. Running ~25 miles, in a training program with an ex-marine, riding horses, etc...we stacked 398 bales of hay the day before my surgery...I'm not good at self-limiting when it comes to activity, so this has been a, um, growing experience. :tongue0013:
> 
> I got the absolutely no make-up instruction. Snood, just so you know, they specifically asked me about lipstick twice before surgery because they do intubate you and if, when pulling it out, lipstick gets on the tube, they might mistake that for blood and would freak out without reason. There's a reason I cropped the pic of my incision 10 hours post-op...no make up + no real sleep = me looking like death warmed over. :ashamed0002:
> 
> Day two back at work and I feel better than yesterday. I don't know if it is a recovery from the damn roof or just me getting back into the routine of everyday life. Tomorrow is my first post-op blood draw. Cross you fingers for high TSH number so I can do this damn RAI and get back to the business of living!


Remember back then we talked about possible hyperthyroid and cancer? Wow! Do you recall all that conversation? Bet you do?


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## joplin1975

SnoodMama said:


> Eww about the lipstick and intubation tube. I don't want to think about the tube. Covering my ears.


I will tell you that this part freaked me out before surgery almost as much as the whole idea of someone...well...opening you up and taking things out did. But I do swear -- I had no idea it was in and I have no idea when they took it out. Had they not told me they were going to do it, I would have had no clue that I was intubated. I just don't want you to be in a position where someone throws the panic button when it's not needed all because of a little lipstick, ya know?

It's going to be a-ok. I promise x 100. 



> Remember back then we talked about possible hyperthyroid and cancer? Wow! Do you recall all that conversation? Bet you do?


You have no idea how many times I've thought about that conversation since getting the FNA results! Go ahead and admit it -- you have a crystal ball, don't you?


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## Octavia

SnoodMama said:


> Eww about the lipstick and intubation tube. I don't want to think about the tube. Covering my ears.


Oh, didn't you hear? They stopped using the tubes yesterday. New surgery rules. Wink wink.


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## Andros

joplin1975 said:


> I will tell you that this part freaked me out before surgery almost as much as the whole idea of someone...well...opening you up and taking things out did. But I do swear -- I had no idea it was in and I have no idea when they took it out. Had they not told me they were going to do it, I would have had no clue that I was intubated. I just don't want you to be in a position where someone throws the panic button when it's not needed all because of a little lipstick, ya know?
> 
> It's going to be a-ok. I promise x 100.
> 
> You have no idea how many times I've thought about that conversation since getting the FNA results! Go ahead and admit it -- you have a crystal ball, don't you?


Nah; just some good instincts sometimes and a "lot" of personal experience! LOL!!


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## I DClaire

They also told me I can't wear deodorant. When I asked why, the nurse said it could be flammable. She said as soon as I get to recovery I can put on all the deodorant I want and I said I probably wouldn't need it then! :confused0031: I'm glad I'm supposed to be the #1 patient that morning!

I can't remember going anywhere without a little makeup.


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## SnoodMama

Nobody wants their armpits on fire!


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## Octavia

SnoodMama said:


> Nobody wants their armpits on fire!


Yeah. Ouch.


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## I DClaire

SnoodMama said:


> Nobody wants their armpits on fire!


I know! How awkward would that be?  I've never heard of anybody's armpits catching fire but I guess I'd rather be safe than sorry!!

I'd think hairspray would be more dangerous than deodorant so, as long as I'm being admitted looking and smelling like the wrath of the earth, I guess I'll also go sans hairspray.

I definitely don't want to spontaneously combust!


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## joplin1975

Yes, everyone, let's please not try to catch on fire during procedures...we've got our plates full already. 

I had my first blood draw today. *fingers crossed* for high TSH numbers!

On a related note, towards the end of the day (say, starting around 3:30 in the afternoon or so), I've been getting headaches that grow increasingly worse as the night goes on, but seem to go away as soon as I lay down and drift off to sleep. I'm assuming this is just a fun side effect of having no thyroid and no meds, yes? And that my body is likely telling me to chill out a bit, yes? Or would you call the doc? I've never really had issues with headaches before, so I'm headache-dumb...


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## SnoodMama

I'll keep my fingers crossed for you that you get those high TSH numbers and get this over with as quickly as possible. I'm not hypo (TSH 2.7) but I do have a lot of headaches. And since this is something new, coming on with this timing I would guess it is related. It does sound like your body might be telling you to chill out a bit and rest more as the day goes on. Can you take Tylenol or Ibuprofen? Drink water? Eat a healthful snack? Take a bath? Stretch? Those are my ideas.


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## SnoodMama

Hey joplin! Somehow I missed your photos of your incision. It was just the timing of visiting this thread I kept going to the last page, not realizing I missed a page. Thank you for posting your pictures. I can't believe how fast it has healed up to look barely even visible!!! Thanks again for all the really helpful info. I hope you get your TSH numbers up nice and quickly and get this RAI treatment so you can get back to overworking yourself!  It must be hard to restrain yourself. Hang in there.


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## joplin1975

SnoodMama said:


> Hey joplin! Somehow I missed your photos of your incision. It was just the timing of visiting this thread I kept going to the last page, not realizing I missed a page. Thank you for posting your pictures. I can't believe how fast it has healed up to look barely even visible!!! Thanks again for all the really helpful info. I hope you get your TSH numbers up nice and quickly and get this RAI treatment so you can get back to overworking yourself!  It must be hard to restrain yourself. Hang in there.


Isn't it strange? I had my blood drawn at my husband's office this morning and I swear I had all the surgeons (orthopedists) staring at my neck saying "NO WAY is that less than 3 weeks out...NO WAY!"


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## webster2

joplin1975 said:


> Isn't it strange? I had my blood drawn at my husband's office this morning and I swear I had all the surgeons (orthopedists) staring at my neck saying "NO WAY is that less than 3 weeks out...NO WAY!"


Yeah, yours looks great...probably all that running and overworking! Hope your blood tests are great too!


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## Andros

I DClaire said:


> I know! How awkward would that be?  I've never heard of anybody's armpits catching fire but I guess I'd rather be safe than sorry!!
> 
> I'd think hairspray would be more dangerous than deodorant so, as long as I'm being admitted looking and smelling like the wrath of the earth, I guess I'll also go sans hairspray.
> 
> I definitely don't want to spontaneously combust!


Hey; you would never have to shave under the axillaries ever again!

I know; sick sick sick! LOL!


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## SnoodMama

The anesthesiologist's nurse called today to go over stuff before the surgery and she was great. She said that no deodorant was just for people having mastectomies. She said a little make up is ok, but they need to be able to see my natural skin color so no war paint I guess. LOL. She also said that up until 2 hours before the surgery I can have small sips of juice, but no solid food after 8 hours prior. So this office seems a little more laid back about the rules. I also told her I have motion sickness and she said they are going to pre treat me with anti-nausea medication. She was so nice and encouraging. They sent me an interactive program about the anesthesia. I haven't watched it yet. I'm in the process of upgrading my cable TV package so I have more channels to watch after the surgery. LOL.


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## joplin1975

Oh, good, SnoodMama!!!

I have to say (even though I am absolutely stating the obvious here) I never really appreciated how valuable a good nurse is until this experience. The nurse that checked me in and saw me in the throes of a panic attack stayed with me (no hyberpole) for two hours holding my hand and calming me down. At the time, it felt like she was my savior.

Good news from my front...as I mentioned my husband's office pulled my blood this morning and he cc'ed himself on the lab work. He just called and said my TSH was 71.17, well above my surgeon's minimal cut off of 35. YAHOO! I'm calling my surgeon first thing tomorrow morning to see how quickly we can get the ball rollin' on the RAI.


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## Andros

joplin1975 said:


> Oh, good, SnoodMama!!!
> 
> I have to say (even though I am absolutely stating the obvious here) I never really appreciated how valuable a good nurse is until this experience. The nurse that checked me in and saw me in the throes of a panic attack stayed with me (no hyberpole) for two hours holding my hand and calming me down. At the time, it felt like she was my savior.
> 
> Good news from my front...as I mentioned my husband's office pulled my blood this morning and he cc'ed himself on the lab work. He just called and said my TSH was 71.17, well above my surgeon's minimal cut off of 35. YAHOO! I'm calling my surgeon first thing tomorrow morning to see how quickly we can get the ball rollin' on the RAI.


Whooooooooooooooooohoo!! Great news. The more you get behind you,the better you are going to feel.

Let us know "when!"


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## webster2

joplin1975 said:


> Oh, good, SnoodMama!!!
> 
> I have to say (even though I am absolutely stating the obvious here) I never really appreciated how valuable a good nurse is until this experience. The nurse that checked me in and saw me in the throes of a panic attack stayed with me (no hyberpole) for two hours holding my hand and calming me down. At the time, it felt like she was my savior.
> 
> Good news from my front...as I mentioned my husband's office pulled my blood this morning and he cc'ed himself on the lab work. He just called and said my TSH was *71.17*, well above my surgeon's minimal cut off of 35. YAHOO! I'm calling my surgeon first thing tomorrow morning to see how quickly we can get the ball rollin' on the RAI.


Wow, good news!


----------



## SnoodMama

That's great news!!!!!! You go kill off all those cells and get this behind you!!!!! No wonder you had a headache!!!!!


----------



## joplin1975

Andros said:


> The more you get behind you,the better you are going to feel.


Isn't that the truth!?

I'm kind of disappointed, Andros...I thought you might ask for the ranges the lab used on my test.

:tongue0013::tongue0013::tongue0013:

Just joking!


----------



## SnoodMama

That was a really good joke. Hehe.


----------



## joplin1975

Here's my scar, three weeks out: 









Still waiting to hear from the Nuc Med people about the RAI. *twiddling thumbs* I called this morning to check on the status and they said to expect to have it scheduled today some time.


----------



## SnoodMama

Wow!!! That is spectacular! It looks great. It doesn't do justice to what you've been through!!!! LOL. It just looks like a tiny scratch, and only if you look closely! Thank you for posting!


----------



## joplin1975

I know...I have worse scars from just walking into things and being a general idiot! :tongue0013:

So I spoke with the hospital and (again in the spirit of the overshare) have my schedule for the RAI...which, while FINE, appears to be a little more complicated than I anticipated.

Tomorrow I show up at the hospital for a blood draw at 7:30am. Then I will be admitted and at 9:00, they will start things moving on a metastatic scan. I can go home that afternoon.

On Friday, I show up at 7:30am again, do more bloodwork, and get re-admitted (will also ask about their frequent flyer program :tongue0013. Get my RAI dose and self-isolate over the weekend.

On Monday, I show up again at 7:30am, more bloodwork, re-admission, and then get a few more pictures taken and some final readings.

I forgot to ask her if I should be able to start my synthroid on Tuesday or not, but I guess we can cross that bridge when we come to it. I'm doing ok, but the fatigue is hitting hard. If I can have a semi-goal date in mind, it would help, but I'll make it just fine.


----------



## Andros

joplin1975 said:


> I know...I have worse scars from just walking into things and being a general idiot! :tongue0013:
> 
> So I spoke with the hospital and (again in the spirit of the overshare) have my schedule for the RAI...which, while FINE, appears to be a little more complicated than I anticipated.
> 
> Tomorrow I show up at the hospital for a blood draw at 7:30am. Then I will be admitted and at 9:00, they will start things moving on a metastatic scan. I can go home that afternoon.
> 
> On Friday, I show up at 7:30am again, do more bloodwork, and get re-admitted (will also ask about their frequent flyer program :tongue0013. Get my RAI dose and self-isolate over the weekend.
> 
> On Monday, I show up again at 7:30am, more bloodwork, re-admission, and then get a few more pictures taken and some final readings.
> 
> I forgot to ask her if I should be able to start my synthroid on Tuesday or not, but I guess we can cross that bridge when we come to it. I'm doing ok, but the fatigue is hitting hard. If I can have a semi-goal date in mind, it would help, but I'll make it just fine.


My goodness; I had no idea this was so convoluted but clearly you are getting the best of care. Bottom line here!


----------



## kitkat

Good luck with the RAI process Joplin...sure you are anxious to get this behind you and move on!! Your scar looks ridiculously good...mine - not so much ..still dealing w/ hard lumpy swelling but Octavia and Webster assure me it'll resolve in time! Best wishes on the treatment process going quickly!!


----------



## webster2

kitkat said:


> Good luck with the RAI process Joplin...sure you are anxious to get this behind you and move on!! Your scar looks ridiculously good...mine - not so much ..still dealing w/ hard lumpy swelling but Octavia and Webster assure me it'll resolve in time! Best wishes on the treatment process going quickly!!


I agree, Joplin's scar gets the crown. Mine will have to make do with Miss Congeniality! :tongue0015:


----------



## joplin1975

webster2 said:


> I agree, Joplin's scar gets the crown. Mine will have to make do with Miss Congeniality! :tongue0015:


This made me laugh!!! I think your scar is one hell of a badge of honor. 

I went for the first visit to the nuclear med people for the RAI yesterday. The people in nuc med were lovely folks, it's just the schedule I was given verbally over the phone by the adm person is...not accurate. Not a huge deal, but it's frustrating not to get consistent instructions and information.

I just got a pill of some kind of radioactive tracer yesterday. That was it. Well, that and waiting for three hours for them to confirm I'm not pregnant (which, if you know me, is hilarious, given that I'm 37 years old and am 1/2 of child-free-by-choice couple...I've spent the better part of two decades avoiding pregnancy...I think I have the birth control thing down pat, but I understand they have protocols).

They'll do the full body and more intensive neck scan on Friday. Once the radiologist reviews the scans, they'll give me the therapy dose of radioactive iodine. All fine, but they want a some kind of isolation for ten days. The first three days being the most intensive, and then stepping down from that over the course of the next seven days. Again, all fine and manageable, but I wish I knew that when they called on Monday. I'm blessed with a flexible schedule, but I keep thinking about all the people who don't have the opportunity to, say, work from home. They would be up a creek all because someone didn't properly communication with them...grrr.

****

On another note, I have a couple of questions about testing once I start synthroid. I don't know if it best "fits' here, but I'll ask and if it should go in another place, I can re-ask in the labs section...or where ever most appropriate.

I've decided to work with my endo (as opposed to my surgeon) for post TT/RAI replacement medication management. Surgeon and endo both great, but I've been thinking endo approaches this as part science/part art, while surgeon is much less likely to fiddle with things to find the right dose (again, not that he's a bad guy, he just has his specialty and endo has hers).

Endo gave me a 'script prior to surgery for 25 mcgs of synthroid as a starting point, acknowledging that we'd have to go up on that dose, but she likes to take things slow. Fine. She also gave me a requisition form for blood work six weeks after I start taking the synthroid. I was going through my Pesky Thyroid file to make sure I hadn't lost either prescription or the req form (I had not, phew!) and I noticed that in that first test, she asked for the TSH and Free T3...but not the Free T4. I hadn't noticed that before. Does that sound right or should I call some time in the coming weeks and that there wasn't some inadvertent oversight and that she doesn't want to add in the Free T4 too?


----------



## Octavia

Joplin, I don't know about the Free T4, but I will address something else in your post that concerns me...

Starting you out at only 25 mcg of Synthroid is not acceptable. Your doctor should not be looking to get your TSH in the normal therapuetuc range... it needs to be as close to zero as possible... see this link:

http://www.thyca.org/tsh-suppression.htm

My doc started me out at 150 mcg after my RAI, then I got labwork 6 weeks later. (Sorry, I didn't pay attention to what labwork was ordered.) The number they were most interested in was TSH. Mine was .003, and they were happy with that, so they're keeping me on the 150 mcg.

How experienced is your doctor in working with thyroid cancer patients? You may need to educate her a little on this...


----------



## joplin1975

Oh, yes, Octavia...thank you for pointing that out. I also meant to write (my brain is tunring to mush while waiting for the ddarn RAI already!) that I was going to call her anyway regarding the 25 mcg.

She does know that TSH needs to be suppressed. I think things got confusing because when I saw her last, she was leaning toward Hashi's (the results of the FNA had not yet arrived at her office, but was in my surgeon's office so I knew), started me on 50 mcgs and I could not tolerate it, so she wrote a new script for 25 mcgs...and I said, hold on...it's cancer not Hashi's...we got on a long tangent about that...and we never re-visited the synthroid dosing issue.

I was added on at the end of the long day, so I think it was a confluence of the results not being there, me being overwhelmed with the cancer dx, and it being a long day for both of us.


----------



## Octavia

Okay. Whew! 

That does make sense now... glad you're on top of it!

Will your labwork also include Thyroglobulin (Tg)? I don't know whether my 6-week post-RAI labwork included that, but it should have, as a baseline measure, since that's a big red flag down the road if it increases.


----------



## joplin1975

Octavia said:


> Will your labwork also include Thyroglobulin (Tg)? I don't know whether my 6-week post-RAI labwork included that, but it should have, as a baseline measure, since that's a big red flag down the road if it increases.


Not in requisition form I currently have. I didn't even think of that *smacks head*...that makes sense.

Ok, so my list of questions is now:
-Free t4 -- why or why not?
-Synthroid dosing
-Tg tests

Although I do like my docs and have had a decent experience, I'm still amazed at how on top of everything one needs to be to make sure you don't slip through the cracks.


----------



## Octavia

joplin1975 said:


> Although I do like my docs and have had a decent experience, I'm still amazed at how on top of everything one needs to be to make sure you don't slip through the cracks.


I know... isn't it crazy and stressful? It's a lot of responsibility we have to take on, but for our own good.

I wish I was smarter about all of this when I first started dealing with it.


----------



## joplin1975

Octavia said:


> I know... isn't it crazy and stressful? It's a lot of responsibility we have to take on, but for our own good.
> 
> I wish I was smarter about all of this when I first started dealing with it.


Totally!

I just called and listed out my questions and the receptionist just decided to add me on to Friday's schedule (end of the day) so the endo and I can go over everything and make sure we are all on the same page. PHEW.


----------



## Andros

joplin1975 said:


> Here's my scar, three weeks out:
> 
> 
> 
> 
> 
> 
> 
> 
> 
> Still waiting to hear from the Nuc Med people about the RAI. *twiddling thumbs* I called this morning to check on the status and they said to expect to have it scheduled today some time.


OMG!!! That is "like" awesome!! You would barely know it! How are you feeling these days?


----------



## webster2

[quote name='joplin1975']This made me laugh!!! I think your scar is one hell of a badge of honor. 

*Thank you, I really don't mind it at all! Yours, however, is amazing!*

Well, that and waiting for three hours for them to confirm I'm not pregnant (which, if you know me, is hilarious, given that I'm 37 years old and am 1/2 of child-free-by-choice couple...I've spent the better part of two decades avoiding pregnancy...I think I have the birth control thing down pat, but I understand they have protocols).

*This made me laugh! Apparently no matter how old one is, they take no chances. I was asked at 52, just after a spinal fusion, if there was a chance of pregnancy. I laughed like a hyena....*

****

Endo gave me a 'script prior to surgery for 25 mcgs of synthroid as a starting

*That is low. I am taking 125mcg....*

Sorry for the bold stuff, but I have not figured out how to insert multiple quotes...:confused0031::confused0031:


----------



## Octavia

joplin1975 said:


> Well, that and waiting for three hours for them to confirm I'm not pregnant (which, if you know me, is hilarious, given that I'm 37 years old and am 1/2 of child-free-by-choice couple...I've spent the better part of two decades avoiding pregnancy...I think I have the birth control thing down pat, but I understand they have protocols).


I hear ya on this... I had to take 3 pregnancy tests in a week several months ago, for various reasons, despite the fact that we are unable to have kids. The 4th test would have been for my dermatologist, and I just had to draw the line...I asked if another doc could just fax the results of their test!


----------



## joplin1975

Andros said:


> OMG!!! That is "like" awesome!! You would barely know it! How are you feeling these days?




I'm...ok. I'm really running low on fuel. Overall, I feel ok, but the fatigue is really setting in...headaches hit me everyday like clock work now around 2:30. I've been really careful about keeping hydrated, eating well, and going to bed reaaaaaaaaaaaallly early, but I think I'm at that point where no matter how well I'm taking care of myself, there's just no fuel in the tank. Hence my readiness to do the RAI (tomorrow, thank you universe!) and make sure I am getting proper replacement therapy.

I'll qualify this by saying I am doing ok and I've got a good support system, but this has been a rough year for me. The lowlights, aside from the thyroid cancer thing, were that both my parents (who live 14 hours away) had extended hospital stays due to scary cardiac issues (which in and of itself is stressful, but the added fun included how far away they live AND that I have a developmentally disabled brother who, once something does happen permanently, will be moving in and living with us) followed by an extended illness and the eventual euthanization of one of my oldest cats (and I do understand to some people not all pets = family, but they are family to us). There was lots of other stuff, too, but those are/were the major draining factors.

I'm knocking on wood when I say this, but it *feels* like the crap wagon finally has hooked up and left our house. Fall is my favorite time of the year...we tend to have really hard winters (230 inches of snow last year)...so I cherish these days as sort of a pre-snow rejuvenation period. I'm not sure if it makes me sound nuts, but mentally/emotionally, I really NEED to get this RAI done, get on the meds, go for a hike, just take a deep breath of crisp fall air, exhale...and then tell 2011 to go to hell. 

Webster, thanks for letting me know how much you are taking. The more I think about it, the more I'm certain I got some wires crossed with my endo (see above, I've been a little preoccupied). I'm looking forward to meeting with her on Friday to make sure I understand what's happening.


----------



## webster2

joplin1975 said:


> I'm...ok. I'm really running low on fuel. Overall, I feel ok, but the fatigue is really setting in...headaches hit me everyday like clock work now around 2:30. I've been really careful about keeping hydrated, eating well, and going to bed reaaaaaaaaaaaallly early, but I think I'm at that point where no matter how well I'm taking care of myself, there's just no fuel in the tank. Hence my readiness to do the RAI (tomorrow, thank you universe!) and make sure I am getting proper replacement therapy.
> 
> I'll qualify this by saying I am doing ok and I've got a good support system, but this has been a rough year for me. The lowlights, aside from the thyroid cancer thing, were that both my parents (who live 14 hours away) had extended hospital stays due to scary cardiac issues (which in and of itself is stressful, but the added fun included how far away they live AND that I have a developmentally disabled brother who, once something does happen permanently, will be moving in and living with us) followed by an extended illness and the eventual euthanization of one of my oldest cats (and I do understand to some people not all pets = family, but they are family to us). There was lots of other stuff, too, but those are/were the major draining factors.
> 
> I'm knocking on wood when I say this, but it *feels* like the crap wagon finally has hooked up and left our house. Fall is my favorite time of the year...we tend to have really hard winters (230 inches of snow last year)...so I cherish these days as sort of a pre-snow rejuvenation period. I'm not sure if it makes me sound nuts, but mentally/emotionally, I really NEED to get this RAI done, get on the meds, go for a hike, just take a deep breath of crisp fall air, exhale...and then tell 2011 to go to hell.
> 
> Webster, thanks for letting me know how much you are taking. The more I think about it, the more I'm certain I got some wires crossed with my endo (see above, I've been a little preoccupied). I'm looking forward to meeting with her on Friday to make sure I understand what's happening.


Geez Louise, you sure have had you share. I would have never guessed by your posts. Glad you are taking precautions to get your rest, and stay as healthy as possible.

Sorry to hear about your cat, pets are family. Our 20 YO cat and 11 YO old golden were put down in the same month, it was brutal. I have kids but always say my pets are my fur kids!

*pre-snow rejuvenation *, I am with you there! For some reason, I thought you live in a warm location. We had one of the snowiest years on record last year. The husband is a highway supervisor, and didn't get much rest. Tuesday, I bought a very large snow blower that goes on a farm tractor, and I don't care if we don't get snow. If it comes. I am prepared! Snow = hubby @ work, wife plows super super long drive...

Good to clarify your dose that sounds really low. It seems like you have had the best possible care, and for that I am really glad. I still am amazed that you were running 5 miles shortly before TT, and I hope you will soon be doing that again!

Yes, it is time for us to tell 2011 where to go..
You need to hike
I need to bike
before Ol' Man winter sends us snow!


----------



## joplin1975

webster2 said:


> Tuesday, I bought a very large snow blower that goes on a farm tractor, and I don't care if we don't get snow. If it comes. I am prepared! Snow = hubby @ work, wife plows super super long drive...


We have one of those! Our driveway is 400 yards long and there's a sick part of me that loves to get up early, layer up with clothes, and get on my tractor to snow blow! My mother thinks this makes me mentally ill...it may, but I tell her I'm a happy mentally ill person, so it all works out!  That said, I *always* think about how hard those highway supervisors work...it seems to never end for them!


----------



## webster2

I am glad I am not alone in that I enjoy snow blowing! I had a walk behind, now "Johnny Boy" & I are gonna show Mother Nature who's boss! Our driveway is about the same length. This is the husband's last year, he retires 9/1 & says he's going to hibernate for a bit! Kids at school used to tell our youngest "I hate your dad" because he doesn't cancel school easily!

I actually have snow blower envy, I always wanted one of those that go on the front of a dump truck!


----------



## joplin1975

All dosed up with the iodine...now just getting through ten days without sleeping with my cities...and, oh yeah, my husband, too!


----------



## Andros

joplin1975 said:


> This made me laugh!!! I think your scar is one hell of a badge of honor.
> 
> I went for the first visit to the nuclear med people for the RAI yesterday. The people in nuc med were lovely folks, it's just the schedule I was given verbally over the phone by the adm person is...not accurate. Not a huge deal, but it's frustrating not to get consistent instructions and information.
> 
> I just got a pill of some kind of radioactive tracer yesterday. That was it. Well, that and waiting for three hours for them to confirm I'm not pregnant (which, if you know me, is hilarious, given that I'm 37 years old and am 1/2 of child-free-by-choice couple...I've spent the better part of two decades avoiding pregnancy...I think I have the birth control thing down pat, but I understand they have protocols).
> 
> They'll do the full body and more intensive neck scan on Friday. Once the radiologist reviews the scans, they'll give me the therapy dose of radioactive iodine. All fine, but they want a some kind of isolation for ten days. The first three days being the most intensive, and then stepping down from that over the course of the next seven days. Again, all fine and manageable, but I wish I knew that when they called on Monday. I'm blessed with a flexible schedule, but I keep thinking about all the people who don't have the opportunity to, say, work from home. They would be up a creek all because someone didn't properly communication with them...grrr.
> 
> ****
> 
> On another note, I have a couple of questions about testing once I start synthroid. I don't know if it best "fits' here, but I'll ask and if it should go in another place, I can re-ask in the labs section...or where ever most appropriate.
> 
> I've decided to work with my endo (as opposed to my surgeon) for post TT/RAI replacement medication management. Surgeon and endo both great, but I've been thinking endo approaches this as part science/part art, while surgeon is much less likely to fiddle with things to find the right dose (again, not that he's a bad guy, he just has his specialty and endo has hers).
> 
> Endo gave me a 'script prior to surgery for 25 mcgs of synthroid as a starting point, acknowledging that we'd have to go up on that dose, but she likes to take things slow. Fine. She also gave me a requisition form for blood work six weeks after I start taking the synthroid. I was going through my Pesky Thyroid file to make sure I hadn't lost either prescription or the req form (I had not, phew!) and I noticed that in that first test, she asked for the TSH and Free T3...but not the Free T4. I hadn't noticed that before. Does that sound right or should I call some time in the coming weeks and that there wasn't some inadvertent oversight and that she doesn't want to add in the Free T4 too?


Whoa; that is a good doc. That is what you need is the TSH and the FREE T3. It sounds very right to me. The slow titration protocul is the "only" way to go as well. The lady knows her stuff. You will benefit greatly.


----------



## SnoodMama

Good luck to you Joplin. I don't know much about the RAI procedure. Is this to do a scan or to kill any left cells? or both? Are you at home? I haven't wanted to think about RAI stuff because I get my path report next week and don't want to worry about it if I don't have to. But somehow i feel ready to learn more details.


----------



## SnoodMama

Ok ignore that, I see your first post where you explained it clearly. There's the scan dose and the therapeutic dose. Will read more carefully next time.


----------



## joplin1975

Andros said:


> Whoa; that is a good doc. That is what you need is the TSH and the FREE T3. It sounds very right to me. The slow titration protocul is the "only" way to go as well. The lady knows her stuff. You will benefit greatly.


Well, I'm glad you approve.

I met with her after the RAI. She was horrified my TSH was 71 and told me I looked awful (well, golly, thanks!) -- bloated, bags under my eyes, hair looks terrible, etc etc etc. Made me hop up on her exam table for a full physical and then grilled me about what I've been doing...how did the TSH get so high so quickly when it's only been 3 1/2 weeks...etc etc etc. I confessed we did the roof after the stitches came out and she took me out behind the metaphorical wood shed for a verbal whipping. "Specifically what part of 'take it easy' did you not understand?" and "You are lucky your heart, lungs, pulse, and blood pressure all seems ok to me or I'd take you by the ear, walk you up that hill and admit you to the hospital this weekend whether you liked it or not!" (said semi-tongue-in-cheek).

Er, whoops.

I had printed off all the stuff from the thyroid cancer survivors site and told her I was concerned the dose was too low and perhaps I misunderstood and also were we all on the same page with the ultimate goal of keeping the TSH very much surpressed since it was cancer etc etc etc.???

She then told me she always appreciates when patients educate and advocate for themselves...the more education, the better. But if I'm going to educate myself but not take care of myself, she's going to knock me upside the head. *giggle*

She said her (actually she said "our" because she was talking about her working relationship with my surgeon) perspective is that making people stop their replacement meds or, in my case, not perscribe any meds after surgery is rather cruel, but until thyrogen is more widely available, it's what we have to do. Ergo, they don't like to see the TSH sneak much higher than around 40 because it enables the RAI to work well while limiting, to the extent possible, the impacts of a higher TSH...in short, they were trying to avoid my TSH getting THIS high and that's one of the reasons my surgeon put his foot down and made me stay home for the full two weeks. She does not like vast swings in TSH and tries to avoid it if possible, in the interest of keeping patients feeling as well as possible, given the situation.

Her ultimate goal is to get me to the dosages pretty much in at the level Octavia and Webster mentioned and she absolutely knows we need to keep the TSH supressed, but she thinks prescribing that level right off the bat, particularly when I had issues (jittery, agitated) with a low does of snythroid before surgery, will cause large swings in TSH and it'll "catch up" with me quickly. Had I been, er, more compliant, she would have, yes, wanted to start at 25 mcgs...however, she does not like a TSH at 71 so now she wants me to start at 50 mcgs...stick with it for six weeks, re-test, and increase from there. It's a longer and slower process...she thought she made that abundantly clear (and she probably did)...but she feels I will benefit in the long run. She said she could provide me with sufficient journal articles that support her perspective if I was interested in some light reading, but I nope, it's ok, gotcha.

Then I was given strict instructions to spend the weekend on the couch, reading or watching TV and "THAT IS IT, DO YOU UNDERSTAND???"

 So that's what I'm up to.

So far, no side effects from the RAI.


----------



## Andros

joplin1975 said:


> Well, I'm glad you approve.
> 
> I met with her after the RAI. She was horrified my TSH was 71 and told me I looked awful (well, golly, thanks!) -- bloated, bags under my eyes, hair looks terrible, etc etc etc. Made me hop up on her exam table for a full physical and then grilled me about what I've been doing...how did the TSH get so high so quickly when it's only been 3 1/2 weeks...etc etc etc. I confessed we did the roof after the stitches came out and she took me out behind the metaphorical wood shed for a verbal whipping. "Specifically what part of 'take it easy' did you not understand?" and "You are lucky your heart, lungs, pulse, and blood pressure all seems ok to me or I'd take you by the ear, walk you up that hill and admit you to the hospital this weekend whether you liked it or not!" (said semi-tongue-in-cheek).
> 
> Er, whoops.
> 
> I had printed off all the stuff from the thyroid cancer survivors site and told her I was concerned the dose was too low and perhaps I misunderstood and also were we all on the same page with the ultimate goal of keeping the TSH very much surpressed since it was cancer etc etc etc.???
> 
> She then told me she always appreciates when patients educate and advocate for themselves...the more education, the better. But if I'm going to educate myself but not take care of myself, she's going to knock me upside the head. *giggle*
> 
> She said her (actually she said "our" because she was talking about her working relationship with my surgeon) perspective is that making people stop their replacement meds or, in my case, not perscribe any meds after surgery is rather cruel, but until thyrogen is more widely available, it's what we have to do. Ergo, they don't like to see the TSH sneak much higher than around 40 because it enables the RAI to work well while limiting, to the extent possible, the impacts of a higher TSH...in short, they were trying to avoid my TSH getting THIS high and that's one of the reasons my surgeon put his foot down and made me stay home for the full two weeks. She does not like vast swings in TSH and tries to avoid it if possible, in the interest of keeping patients feeling as well as possible, given the situation.
> 
> Her ultimate goal is to get me to the dosages pretty much in at the level Octavia and Webster mentioned and she absolutely knows we need to keep the TSH supressed, but she thinks prescribing that level right off the bat, particularly when I had issues (jittery, agitated) with a low does of snythroid before surgery, will cause large swings in TSH and it'll "catch up" with me quickly. Had I been, er, more compliant, she would have, yes, wanted to start at 25 mcgs...however, she does not like a TSH at 71 so now she wants me to start at 50 mcgs...stick with it for six weeks, re-test, and increase from there. It's a longer and slower process...she thought she made that abundantly clear (and she probably did)...but she feels I will benefit in the long run. She said she could provide me with sufficient journal articles that support her perspective if I was interested in some light reading, but I nope, it's ok, gotcha.
> 
> Then I was given strict instructions to spend the weekend on the couch, reading or watching TV and "THAT IS IT, DO YOU UNDERSTAND???"
> 
> So that's what I'm up to.
> 
> So far, no side effects from the RAI.


Oh, Joplin....................you have such a gem of a doctor. Others here are going to want to see her too! She really "gets" this thyroid stuff and clearly thinks outside the box.

You had a hard hard road so I cannot think of anyone who deserves this doctor more than you do.

And you "better" rest if you know what's good for ya'!! LOL!!

ROLF about the "approval!" Ha, ha!!!

Bless your heart!


----------



## webster2

I have doctor envy...I wish I felt mine "got it".


----------



## Andros

webster2 said:


> I have doctor envy...I wish I felt mine "got it".


Hey; we will get a bus and go to Joplin's house!! She can then take us to her doctor.

Wouldn't that be a hoot? Her doc would run out the back door!


----------



## joplin1975

Andros said:


> Hey; we will get a bus and go to Joplin's house!! She can then take us to her doctor.
> 
> Wouldn't that be a hoot? Her doc would run out the back door!


Heck, come on up! The more the merrier!

So here's the scar 4 weeks out (I had just gotten out of bed):









I don't imagine it'll change significantly from that, so I won't keep posting. 

Also, in the event that folks are sick of me being all chirpy and "wow, that was easy!"...I have to admit I had a bit of a rough weekend. RAI was on Friday and, aside from my verbal whipping Friday afternoon, I felt ok. Started to feel fatigued Friday evening, but nothing remarkable.

And then Saturday and Sunday I just felt crummy. Nothing specific, nothing alarming, but it felt like I was coming down with a bug (except I never did). Fatigue, severe muscle weakness, headahces and overall body aches etc. I think, really, it's the first time in the process where I can say I moved from "ah, not bad" to the whiney "but I feeeeeeeeeeeeeeee sick" phase. I spent most of the weekend in bed or on the couch.

I don't know if it was the RAI or if the RAI caused my TSH to bcome more elevated or if it was just everything catching up with me. I decided to work from home this week, which is a good thing, because while I felt better yesterday, I'm back to feeling crummy today. Mostly, it's a headache. I took my first snythroid this morning, so I'm hopeful the week will improve.

So, that's the latest dispatch from the [funny] farm.


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## SnoodMama

I'm joining you with whining today, but I've got a lot less to whine about. Your scar looks so good. I can't wait to get to that point!!!

So you are able to work from home? That's really good! I hope you don't have that sick, icky feeling though for long. Come on, let's go rest up!!! I'll join ya!


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## webster2

Sorry to hear about the less than feeling great stage for both of you. I think it comes and goes for us in different stages. I had my first really great day in awhile yesterday. Initially, I felt pretty good after surgery, but the last 2 weeks have been yucky. So, yesterday was a glimmer of hope!

Yes, a bus to Joplin's doctor is an excellent idea. I sure do need a new one. I am not convinced one is available in Vermont.

Here's to hoping everyone's day picks up.


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## joplin1975

Hello friends. 

A week and some days after starting Synthroid (which, yes, I know, I'm still undermedicated) and I feel so so so much better.

Last night, I drove up to the barn where I used to board my horse, borrowed the old lesson horse on whom I learned to ride, and took a short but soul-lifting gallop through the fields. The leaves are changing, the sun was out, the air was crisp, and my old pal and I had a blast ripping around the field. It was the first time back on a horse since August 17th. It's amazing what getting back to doing what you love does for your spirit and soul.

Everyday feels so much better. Next week I'm going to start walking and doing some yoga. There are so many little things that I was not consciously aware of that seem to have been corrected or improved with this surgery. It's kinda of blowing my mind. I'm really busy getting back to work, but when I have a few minutes, I'm going to come back and write it all out. As I've had more time to reflect, I think I have been feeling unwell for some time and just not acknowledging it or appreciating that things weren't right. At the risk of sounding like a complete fruit loop, this is experience has really elevated my own self-awareness about my body and makes me so grateful for my good health. While, previous to surgery, I would have argued 100 ways to Sunday that I took good care of myself and was the picture of health, frankly, I was only seeing half the picture. To be honest, I now realize was doing a lot of self-medicating with alcohol to help to help deal with the physical and what I now think may have been minor depressive episodes. I've made some significant diet and lifestyle changes and just wow...I feel good!

My next blood draw is on November 8th and I look forward to my next dosage increase.

Happy Friday!


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## webster2

Wow, what a great post! Glad you had a ride. It is getting to be really pretty outside. I love the smell of autumn. Thanks for the uplifting post!  I still suffer from doctor envy.


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## Andros

joplin1975 said:


> Hello friends.
> 
> A week and some days after starting Synthroid (which, yes, I know, I'm still undermedicated) and I feel so so so much better.
> 
> Last night, I drove up to the barn where I used to board my horse, borrowed the old lesson horse on whom I learned to ride, and took a short but soul-lifting gallop through the fields. The leaves are changing, the sun was out, the air was crisp, and my old pal and I had a blast ripping around the field. It was the first time back on a horse since August 17th. It's amazing what getting back to doing what you love does for your spirit and soul.
> 
> Everyday feels so much better. Next week I'm going to start walking and doing some yoga. There are so many little things that I was not consciously aware of that seem to have been corrected or improved with this surgery. It's kinda of blowing my mind. I'm really busy getting back to work, but when I have a few minutes, I'm going to come back and write it all out. As I've had more time to reflect, I think I have been feeling unwell for some time and just not acknowledging it or appreciating that things weren't right. At the risk of sounding like a complete fruit loop, this is experience has really elevated my own self-awareness about my body and makes me so grateful for my good health. While, previous to surgery, I would have argued 100 ways to Sunday that I took good care of myself and was the picture of health, frankly, I was only seeing half the picture. To be honest, I now realize was doing a lot of self-medicating with alcohol to help to help deal with the physical and what I now think may have been minor depressive episodes. I've made some significant diet and lifestyle changes and just wow...I feel good!
> 
> My next blood draw is on November 8th and I look forward to my next dosage increase.
> 
> Happy Friday!


Clearly you know how to nurture your soul which goes a long long way regarding your journey on the healing pathway!

Good for you and Happy Friday to you as well.

I love to hear this stuff!!


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## SnoodMama

That's really inspirational, joplin. I think I'm just going to read and reread and savor your post. There's a lot to learn from it.

I'm so glad that so much positive has come out of this for you. That horse ride sounds spectacular. I went to watch my tennis team play a tennis match, and I was sitting out in the sun, looking at the flowers and just really appreciating being there rather than in that depressing hospital. Woohoo!!!!!!!!!!!!!!!!!

So, is your RAI all done and have you started hormone replacement now? (Sorry if you posted this on another thread that I missed).


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## joplin1975

SnoodMama said:


> That's really inspirational, joplin. I think I'm just going to read and reread and savor your post. There's a lot to learn from it.
> 
> I'm so glad that so much positive has come out of this for you. That horse ride sounds spectacular. I went to watch my tennis team play a tennis match, and I was sitting out in the sun, looking at the flowers and just really appreciating being there rather than in that depressing hospital. Woohoo!!!!!!!!!!!!!!!!!
> 
> So, is your RAI all done and have you started hormone replacement now? (Sorry if you posted this on another thread that I missed).


Or, you can kick me if that makes you feel better too. I have thick skin. :tongue0015:

Seriously, I don't mean to sound overly chirpy. I don't. And I still have a loooooooooooooooooooong way to go. I'm just getting to the point where I'm feeling a new sense of mental/emotional/physical clarity that's been eye-opening.

I did finish the RAI (which I would consider a low point...the physical "crashing" of going more hypo than a TSH of 71 with the emotional toll of being isolated was officially Not Fun) and am now on only 50 mcgs of Synthroid. I had some sensitivity to Synthroid pre-surgery (jitter/anxious/heart palps) and my endo is 1) trying to avoid the heart palps thing in particular and 2) believes that its eaiser to "fix" an undermedication issue than a overmedication issue. So while she thinks I'll probably end up somewhere near 100 to 125 mcgs (provided I'm reacting well to synthroid), she's taking her time in getting me to the full dose.

I can't stay up past 8:30pm. I am very careful now about what I eat. I'm hypervigilant about staying hydrated. Outside my short horseback ride and the part where I got a severe case of the stupids and re-roofed the house, I have not done an anything remotely physically taxing. I've put on ten pounds and am now living in elastic waistband pants.

This is, in short, absolutely not where I want to be long-term, but it's not a bad short term stop on the journey.


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## SweetGirl44

joplin1975 said:


> Last night, I drove up to the barn where I used to board my horse, borrowed the old lesson horse on whom I learned to ride, and took a short but soul-lifting gallop through the fields. The leaves are changing, the sun was out, the air was crisp, and my old pal and I had a blast ripping around the field. It was the first time back on a horse since August 17th. It's amazing what getting back to doing what you love does for your spirit and soul.


Joplin1975 - Thank you for sharing your post. I too have felt that a dark veil has been lifted and I can see things, myself, more clearly after surgery. I'm more aware of my likes, what brings enjoyment to my life and I am for the first time, in a very long time, optimistic about the present and the future.

This might explain how I am feeling following TT surgery. My sister phoned me yesterday to see how I was doing. I told her I felt great, even though I am still dealing with some physical symptoms, I really did mean it. I told her not to laugh, but three days after surgery a thought kept repeating in my mind, I wanted color in my life. Rich burgandies, shades of greens, blues, purples, yellows etc... She said so your done with a beige life? I said exactly. My life was just existing in a constant color of beige, no fun, no personality, just physical and mental exhaustion and pain. I had given up hope that I would find the answers to help me "find me again". Thanks to this surgery, I am no longer lost.


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## Christi

This is the most encouraging thread! Enjoyed the beginning to the last post. Love how supportive & real everyone is! This is a great read for any newbie to get an idea of the great support there is in this group...and the varying experiences as well. Thank you guys so much!


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## Alicia123

Thank you for this post. What a ride. Thank you for sharing. Inspirational, and gives others great hope.


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