# Too many horror stories



## Andy21

Hi I'm a 34 y/o male Aussie and after getting an FNA (hated that a lot >< ) they confirmed me having a 4 cm hyper vascular lump on one side of my Thyroid and its papillary Cancer.

That really sux so I went to the specialist and he has booked me in to remove the whole thyroid on Aug 31.

Thing is the more I look around the web the more horror stories I see of the effects of not having a thyroid..

The specialist I'm seeing to do the operation is a good one but he made out like I would only need to take a Thoroxin tablet every couple months and I'd be perfect with no side effects...... lol.

Like I said after seeing all the horror stories of fatigue, sluggishness, depression, difficulty concentrating, memory problems, unexplained or excessive weight gain, dry skin, coarse and/or itchy skin, dry hair, hair loss, feeling cold in the extremities, constipation, muscle cramps, joint pain, carpal tunnel syndrome it's got me so worried that I'm wondering.. if this type of cancer doesn't actually kill me than maybe I'm better just keeping the dam thyroid to avoid the later horrors!?

Are these side effects common also in the males who have the thyroid taken out or is it more prevalent in the ladies? Sorry just im really confused and pretty frightened after reading all these pages tbh..


----------



## joplin1975

The horror stories you here are related to people not being medicated properly. It can take some time to find the right dose and/or medication. I'm not familiar with any drug you have to take once a month...I take mine every day.

I can tell you that I had my TT on Aug 29th of last year and my life is very much normal right now. I can also tell you that I was medicated poorly for about 5 or 6 months. It was hard, but there are worse things. Most people, however, do very very well.

I'm not a Suzie Sunshine kind of a person, but I do think if you go into it all expecting a horror story, then you are doing yourself a disservice.

Also, the cancer isn't aggressive, but that doesn't mean it won't kill you. Left alone, it very commonly travels to the lungs. Often times, thyroid cancer is a bit more aggressive in men, so please don't even consider leaving it in.


----------



## Octavia

Like joplin, my life is very normal right now after total thyroidectomy for papillary cancer. I was started right away on a dose that was pretty close to perfect for me, so it was a pretty seamless transition.

With that said, if you are getting RAI treatment after your surgery, then you probably won't take replacement hormone right away...you will need to be hypothyroid for the RAI. So for a few weeks, you will be sluggish, but once you get on your (daily) meds, you should be fine.

Do you have a post-surgery plan yet? With a 4cm nodule, I would think you would be getting RAI. If you get all of those plans in place NOW, then you can minimize the delay in getting on replacement meds, and you'll be much better off. (If you have a plan/schedule for your treatment, you may only need to be without thyroid hormone for 2-4 weeks.)


----------



## webster2

My life is pretty normal now too, and it is just over a year. Remember horror stories are more sensational than just average normal day to day life, so that may acount for more of them out there.


----------



## Andy21

Octavia said:


> Like joplin, my life is very normal right now after total thyroidectomy for papillary cancer. I was started right away on a dose that was pretty close to perfect for me, so it was a pretty seamless transition.
> 
> With that said, if you are getting RAI treatment after your surgery, then you probably won't take replacement hormone right away...you will need to be hypothyroid for the RAI. So for a few weeks, you will be sluggish, but once you get on your (daily) meds, you should be fine.
> 
> Do you have a post-surgery plan yet? With a 4cm nodule, I would think you would be getting RAI. If you get all of those plans in place NOW, then you can minimize the delay in getting on replacement meds, and you'll be much better off. (If you have a plan/schedule for your treatment, you may only need to be without thyroid hormone for 2-4 weeks.)


Well he said about the Iodine treatment which I assume is RAI. How is this treatment done anyway? Is it needles, pills or something else? As far as those pills go he definetly said every couple months you need a pill :/ it was called Thyraxin or something like that i think. I asked him what would happen if i didnt take the pills and he said after a few months everything would deplete and my heart might just stop <_<


----------



## joplin1975

Pills. You take a pill, which kills the remaining thyroid tissue (its hard to get it all surgically). There are protocols and procedures to follow because of the radioactivity, but it is, at its essence, a single pill.

Long term, without replacement meds, yes, your body will shut down, but its not like you would forget a pill and then die. I really don't think it was helpful to put it in those terms for you.

I'll be interested to hear about your experience with a monthly replacement pill. Currently, with daily pills, it takes 6 to 8 weeks to determine if the dose is correct. I would about the protocol for a monthly pill?


----------



## Andros

Andy21 said:


> Hi I'm a 34 y/o male Aussie and after getting an FNA (hated that a lot >< ) they confirmed me having a 4 cm hyper vascular lump on one side of my Thyroid and its papillary Cancer.
> 
> That really sux so I went to the specialist and he has booked me in to remove the whole thyroid on Aug 31.
> 
> Thing is the more I look around the web the more horror stories I see of the effects of not having a thyroid..
> 
> The specialist I'm seeing to do the operation is a good one but he made out like I would only need to take a Thoroxin tablet every couple months and I'd be perfect with no side effects...... lol.
> 
> Like I said after seeing all the horror stories of fatigue, sluggishness, depression, difficulty concentrating, memory problems, unexplained or excessive weight gain, dry skin, coarse and/or itchy skin, dry hair, hair loss, feeling cold in the extremities, constipation, muscle cramps, joint pain, carpal tunnel syndrome it's got me so worried that I'm wondering.. if this type of cancer doesn't actually kill me than maybe I'm better just keeping the dam thyroid to avoid the later horrors!?
> 
> Are these side effects common also in the males who have the thyroid taken out or is it more prevalent in the ladies? Sorry just im really confused and pretty frightened after reading all these pages tbh..


I am sorry to hear this. I do urge you to hang out here more often. We don't have too many if any horror stories.

Many of us are fully recovered and kicking some serious butt in life!! Myself included.

Let us be by your side vicariously through this ordeal. We have many here who are quite experienced.


----------



## Octavia

Andy21 said:


> Well he said about the Iodine treatment which I assume is RAI. How is this treatment done anyway? Is it needles, pills or something else? As far as those pills go he definetly said every couple months you need a pill :/ it was called Thyraxin or something like that i think. I asked him what would happen if i didnt take the pills and he said after a few months everything would deplete and my heart might just stop <_<


Well, if there is an "every couple of months" pill, it's news to me. What I think you heard was Thyroxine. That's what most of us take. In the U.S., it's Synthroid, or Levoxyl, or Levothyroxine, or some other generic form of the pill. But we take it daily. I do wonder if your doctor is mistaken...is he the one who would actually prescribe it, or is he just "guessing" at what the treatment is?

My RAI was a liquid, served to me in a metal room with a metal cup and a metal straw. I would guess it was about 3 ounces of liquid for me to swallow. There are different amounts used, depending on factors like tumor size, tumor spread, patient age, etc. I got 100 millicuries, which is probably an "average" dose...some people get more, some get less.


----------



## Andy21

Is it normal that nobody has talked to me about when and where I'll be getting this RAI and when I'll be starting on Thyroxine tabs etc? I mean my surgery is schedule in 10 days and i dont have a clue tbh. I'm even having second thought's about getting a full removal done as the after effects seem to suck badly ...


----------



## joplin1975

As I told someone else on this board, I did a sprint triathlon this weekend. I don't think the after effects suck badly at all. Nope, not a bit. 

They can't tell you when the RAI will take place, exactly, because they have to wait until your TSH gets high enough (my surgeon wanted to wait until we were looking at a TSH of 35-40ish). But, a lot of times all this info overwhelms people so sometimes the doctors dole it out piece meal. If you have questions, call and ask. I think most people, assuming they aren't started on replacement meds right away, get the RAI somewhere around three to four weeks after surgery.


----------



## Andy21

oh ok so I will have the lingering effects of what my old thyroid was putting out for a while to still sustain me for a while after surgery im guessing? And this should cover the RAI time and until i start meds im assuming?


----------



## joplin1975

Yes, for a while. As the thyroid hormone lessens, you'll feel it. You'll be tired, foggy-headed, possibly a little cranky, maybe have some sore muscles etc. That all correlates with a high TSH. But, as my surgeon put it, "It's not like you are going to fall over and die because you are off the meds for a few weeks." ANd, yes, then you have the RAI. I had the RAI on a Friday and started my meds the following Tuesday.


----------



## Andy21

I'm sorry for all these stupid sounding questions and such but was wondering if I'm supposed to have this 4cm cancerous nodule on my thyroid already then shouldn't I have been feeling those Hypothyroidism (not sure the right term) effects and nasty things already? Truth is I feel perfect and having too much energy if anything.. has me mythed. 9 days till surgery that really sux :sad0049: If say only the bad half was taken out then would that at least give me a few years of joy before the other side might need to go?? (assuming it would)


----------



## webster2

It varies, some people experience symptoms and some don't. Oh, IMHO go for the total and you never have to do it again. Use these nine days to do things you might not be able to do after and get yourself a comfy space to recoup! Best to you!


----------



## joplin1975

Yup, some people never have symptoms.

I'll say this...when I first started posting, I insisted I had no symptoms. I ran, I rode my horses, I worked full time, blah, blah, blah. Then I got my thyroid out, got my meds regulated, and now I'm all "holy mother of Mary, I was SICK and had no idea!"


----------



## Octavia

Andy21 said:


> I'm sorry for all these stupid sounding questions and such but was wondering if I'm supposed to have this 4cm cancerous nodule on my thyroid already then shouldn't I have been feeling those Hypothyroidism (not sure the right term) effects and nasty things already? Truth is I feel perfect and having too much energy if anything.. has me mythed. 9 days till surgery that really sux :sad0049: If say only the bad half was taken out then would that at least give me a few years of joy before the other side might need to go?? (assuming it would)


You are going into this assuming you will have no joy after the surgery anymore. I think that is very false, and you are setting yourself up for a less than positive outcome.

I'm telling you, my life is wonderful! I didn't have some of the major symptoms others here complain of...I "just" had a nodule (3.2 cm), and it had to go. Now, I realize that my tiredness for several years before wasn't normal at all! I feel great. I'm still thin, I'm a cyclist, I play the saxophone, I work full-time and then some, I have a great relationship with my husband...life is great!

For me, the surgeries and losing my thyroid were a minor hiccup in life, and nothing more. It has not changed my life at all. At all. I also have 4 close friends and family members who don't have their thyroids anymore, and their lives are completely normal as well.

Honestly, whether you expect a terrible outcome or a good one, you'll probably be right. Mind over matter, in a way. The critical thing is to get started on a high enough level of replacement right away.


----------



## Andy21

30 hours to go.. Went down to the supermarket and bought lots of soft and cold type foods lol.

Will visit the drug store tomorrow to get bio oil? And whatever else those guys think I need to get rid of and help with the scar.. (Any more suggestions my ears are open guys)

I had one question about exercise and weightlifting. I'm not intending to be huge muscleman or anything but I was hoping to get back into moderate level weight training and such and was wondering if this will be feasible after losing the thyroid? Does it effect your testosterone or hormone levels not having a thyroid?? I honestly want to be strong and healthy so any advise would be appreciated!


----------



## joplin1975

I just wrote a post the other day...I played soccer in college and was always very athletic. I'm bigger (more muscular) now than I ever have been. More active and feeling better, too. So, if anything, I think it would improve things.


----------



## webster2

I think you will be able to get back into it too. I feel so much better than I have in a long long time. Hard to believe that something so small can raise so much havoc with the body.


----------



## Andy21

joplin1975 said:


> I just wrote a post the other day...I played soccer in college and was always very athletic. I'm bigger (more muscular) now than I ever have been. More active and feeling better, too. So, if anything, I think it would improve things.


This is really encouraging thankyou! And thankyou Webster2 also! It's weird though cause I did Kungfu for ages and always got constant rushes of adrenaline at many times even when not playing sports or fighting. Considering I'm supposed to have thyroid cancer i feel so on top of everything and energetic.. or could it be just cause im 34 lol?

is it possible for your thyroid to work the other way and make you hyper? Im a pretty lean muscular guy also


----------



## joplin1975

What I didn't understand before surgery is the waxing and waning process of the thyroid. I stick to a strict diet and exercise program...some weeks/months I would lose rapidly, feel exceptionally energetic, and would be able to run significantly longer and faster than my usual...during those weeks I'd lose weight...and then I'd have other weeks/months when I felt lethargic and foggy-headed and would have trouble really pushing myself at the gym....during those weeks, I would gain weight. I just attributed it to my activity level. But I think it was really the TSI (a stimulating hormone) flaring up during those more "manic" periods while the TPO-type hormones flared up during the more depressed periods.

Which is a long way of saying if you have cancer, you probably have a lot of stimulating hormones telling your thyroid to work harder as it is dying off, so sure, you could be flirting with the hyper side of things.


----------



## Texaschick

Andy, I just had a total on 8-21, I have felt better this week than I have in the past several months...I even asked a question the other day if it was possible for symptoms to have already disappeared ...and someone told me they knew in recovery room that a symptom they had was gone.

My doctor told me we would stay on top of labs to make sure I am on the right dose to prevent any of the "bad" feelings if level is off.

Listen to these wonderful people - they know what they are talking about! God bless!


----------



## Octavia

Andy21 said:


> 30 hours to go.. Went down to the supermarket and bought lots of soft and cold type foods lol.
> 
> Will visit the drug store tomorrow to get bio oil? And whatever else those guys think I need to get rid of and help with the scar.. (Any more suggestions my ears are open guys)


Sunscreen. Definitely sunscreen. You need to keep that scar out of the sun for a year to prevent hyperpigmentation.

Wishing you the best!!! Good luck with your surgery, Andy! :hugs:


----------



## Andy21

Thankyou to all you guys for this insight. I will invest in some sunscreen and yeah op is in 12 hours from now..


----------



## teri2280

Good luck on your surgery, Andy! And don't worry about the effects too much. I'm one of those people who aren't quite regulated on my meds, (TT just over 5 months ago) and to tell the truth, it's a pain in the rear, but it's not super horrible. I can get up, go to work, do my job, come home, do some laundry/cleaning/.cooking whatever, but I'm in bed by 930 at the latest. Anything past that and I'm dozing off (I'm up @ 5 am during the week) in my chair. Nowhere near what I want to be at, but not super horrible, either. It's getting better as time goes on, but it's not perfect yet.

Please let us know for sure about the replacement hormones they will use for you. Taking one once a month sounds kind of odd to me, but I have a habit to forget my pills when I go on short trips, so taking one a month would be great!


----------



## Andros

Andy21 said:


> Thankyou to all you guys for this insight. I will invest in some sunscreen and yeah op is in 12 hours from now..












Thinking of you!!! Can't wait to hear all about it!


----------



## Andy21

Made it home yesterday afternoon after staying 2 nights in the hospital. They gave me lots of drugs the first day immediately after the op and I threw up a lot and couldn't eat. 2nd day managed to hold down food although pain was a little high. The doc did a TT and took out Lymph nodes he said.

Anyway today is the 3rd morning since op and my neck feels so stiff and very sore, although I'm not taking any pain killers. Do feel nauscious though. Tbh pain doesn't worry me but I hate feeling sick.

Am I right in understanding that's it's downhill from here until the RAI is done and they start giving me Thyroxine? Also sadly my surgeon says its a tablet a day for thyroxine not 1 every two months like he originally stated, that had me wondering..

oh btw my neck is quite long so I didn't need drainage, also he made the incision very low practically along my clavical :/ it's extremely neat.


----------



## Octavia

Good to hear from you, glad it's over! I can totally relate to the nausea...that will get better, I promise. I agree -the nausea was worse than the pain for me, too.

Is your RAI scheduled yet? Ideally, you'll have it within the next 3 to 4 weeks, then you can truly start your recovery.


----------



## Andy21

He told me roughly 2 weeks time, that was on the day of the TT. Thanks for the kind words mate


----------



## Octavia

Prevailing wisdom says that your TSH needs to be over 30 before you get your RAI treatment. That may take 2-3, maybe 4 weeks max. Then within about 3 to 5 days after your RAI treatment, you should get a whole body scan to see if there is any spread, just to be sure. That seems to be the "standard of care" most of us here have gotten.

I hope you're still doing relatively well, Andy!


----------



## Andros

Andy21 said:


> Made it home yesterday afternoon after staying 2 nights in the hospital. They gave me lots of drugs the first day immediately after the op and I threw up a lot and couldn't eat. 2nd day managed to hold down food although pain was a little high. The doc did a TT and took out Lymph nodes he said.
> 
> Anyway today is the 3rd morning since op and my neck feels so stiff and very sore, although I'm not taking any pain killers. Do feel nauscious though. Tbh pain doesn't worry me but I hate feeling sick.
> 
> Am I right in understanding that's it's downhill from here until the RAI is done and they start giving me Thyroxine? Also sadly my surgeon says its a tablet a day for thyroxine not 1 every two months like he originally stated, that had me wondering..
> 
> oh btw my neck is quite long so I didn't need drainage, also he made the incision very low practically along my clavical :/ it's extremely neat.


You are one tough cookie as that was quite the surgery! Good to hear from you and don't worry. Just take good care of yourself right now.


----------



## joplin1975

I'm glad you are hanging in there! The RAI will be here before you know it.


----------



## Texaschick

Andy, Soooo glad it is behind you...I hope you are feeling better! Take care and God bless you with a speedy recovery!


----------



## Andy21

really thankyou to everyone. One question is roughly when will this pain and stiffness cease? a few more days maybe?


----------



## joplin1975

Quite honestly, I had virtually no pain, so I'm not sure...on a scale of 1 (very little pain) to 10 (severe pain), how bad is it?

The stiffness subsided, for me, when I got my stitches out. By then, I felt like there was less "pulling" at the incision site and I was able to start slowly moving my neck around more.


----------



## Andy21

Getting around a 3 outta 10 mainly when swallowing or talking, although maybe it's because he took out lymphnodes as well perhaps. will be getting my stiches out tomorrow - it's only been 4 days since the op , i was wondering is it too soon to be having stitches out :/ i guess the surgeon knows what he's doing though lol. Also since the op my mind feels like it's swimming (like a light stoned feeling precisely) it honestly never ceases.. is this a normal thing??

And completely separate to this I found a scar treatment named Stratamed and apparently its awesome.


----------



## joplin1975

Ok, yup, that will get better. I know most people haven't reported this, but I had discomfort when I tried to drink without using a straw. After about a week and a half, I could go back to a regular cup, but I preferred a straw. It will get better - they had to move lots of neck muscles to get to your thyroid, so thats kinda traumatic.

Not sure about the stitches. I had mine out at ten days. Do you have steri strips too?


----------



## Andy21

yep Steri strips cover the clear stitches. Did you feel like you were constantly semi-stoned after TT Joplin?


----------



## Octavia

Andy21 said:


> yep Steri strips cover the clear stitches. Did you feel like you were constantly semi-stoned after TT Joplin?


That could be from pain pills, or from the anesthesia, which is slowly working its way out of your system. Or it could be your body's reaction to the traumatic experience of surgery. ???


----------



## joplin1975

Andy21 said:


> yep Steri strips cover the clear stitches. Did you feel like you were constantly semi-stoned after TT Joplin?


A little bit. My head was foggy, I had some trouble concentrating (for example, I bought a boatload of books to read and found I just couldn't read/concentrate on following the plot lines...so I ended up watching a lot of crap TV)...I think its a combination of the after effects of the surgery along with all the hormonal upheaval.


----------



## Andy21

ok this makes sense and youve both been very helpful. 'Foggy' is an excellent way to describe it and with a hint of things seeming 'slower' Thanks guys for helping me with this.


----------



## Andy21

Seems they are using different methods in Australia recently. He says i will be immeadiatly going onto 100mg of Thyroxine and in a few weeks they will work out the RAI stuff. I asked him about the 2 clashing and he says there is some other drug that enables it to work just fine.

And the stitches came out just fine after only 6 days with a very minimal scar, it's also very low down around my clavical. I'll add a photo later if im not feeling lazy lol


----------



## webster2

Your scar looks great! Mine is low like that too. Good luck with the next step!


----------



## joplin1975

Your scar does look great. Still feeling foggy-headed?

You are probably going to be using Thyrogen. It is an injectable drug that artificially raises your TSH, thereby making RAI effective without needing to "go hypo." it was hard to find as recently as last year, but the producers have recently upped production. I didn't have it for round one, but am getting it for round two. That's a good thing.  The whole hypo thing is manageable but a nuisance.

An aside, but I think 100 mcgs is a good starting point, but don't surprised if its not enough and you need an increase. You might feel tired and groggy, but that will be taken care of with a dose increase.


----------



## grammazanne

Andy, did you have your surgery? How are you doing?


----------



## Andy21

grammazanne said:


> Andy, did you have your surgery? How are you doing?


Yes thanks I had the surgery and I'm currently on 100 of Thyroxine a day and tbh I don't really feel any side effects. I would assume this dosage should be slightly under what I should be on but as long as no odd side effects occur then I'll stick to it - from what Ive gathered after researching a lot it's better to have less Thyroxine then more (the lesser of two evils in other words).

The scar is coming along fine too although right at the base of my neck I still get pain when stretching out especially in the morning. Btw I havent had RAI yet and have to wait until November 20-ish for that.


----------



## Andros

Andy21 said:


> Yes thanks I had the surgery and I'm currently on 100 of Thyroxine a day and tbh I don't really feel any side effects. I would assume this dosage should be slightly under what I should be on but as long as no odd side effects occur then I'll stick to it - from what Ive gathered after researching a lot it's better to have less Thyroxine then more (the lesser of two evils in other words).
> 
> The scar is coming along fine too although right at the base of my neck I still get pain when stretching out especially in the morning. Btw I havent had RAI yet and have to wait until November 20-ish for that.


And your experience while uncomfortable and quite unfamiliar to you has turned out to be a great story rather than a horror story!

We are all very proud of you, Andy!


----------



## joplin1975

Glad to hear you are doing well, Andy. If you aren't doing so already, you might try a little scar massage. I had a similar pain/discomfort but it went away once I started massaging the scar with Vit. E lotion. I think it broke down the scar tissue.


----------



## grammazanne

So glad to hear you are doing well! My TT is upcoming on Oct.30. I, too, read all the horror stories, so put this off for 5 years. Now that I lost my job and won't have insurance, at least temporarily, I feel pushed to have it done now.

Suzanne


----------



## Andy21

grammazanne said:


> So glad to hear you are doing well! My TT is upcoming on Oct.30. I, too, read all the horror stories, so put this off for 5 years. Now that I lost my job and won't have insurance, at least temporarily, I feel pushed to have it done now.
> 
> Suzanne


I really hope it goes well for you Suzanne, I was extremely apprehensive myself but all turned out okay as far as I can tell. hugs2


----------



## Texaschick

Yea Andy! So glad you are doing good and that is behind you!!!! Take care of yourself!!!! God bless!


----------

