Thyroid or any other health issues

[HRHDi]

Okay, I know of 3 other .oRg members here in the Lair who have thyroid issues - underacitve or no thyroid. I thought that was a pretty high percentage and thought it might be a good place to ask questions, give support, etc.

Just to recap, here's my thyroid history in a nutshell (I promise to all of you who have already heard it).

Nov 2007 - nodule found on my thyroid
Dec 12 2007 - positive cancer diagnosis of papillary thyroid cancer
Jan 2008 - total thyroidectomy surgery, thyroid and surrounding lymph nodes were removed
Feb 2008 - prep for radioactive iodine treatment - the worst part of this entire ordeal.
Mar 2008 - radioactive iodine treatment. 1 week of isolation in my bedroom - no family, no pets, plastic over everything, etc. because I was radioactive.
Sep 2008 - follow up scan found 3 suspicious lymph nodes, biopsy confirms cancer
Oct - Nov 2008 - lots of tests and prep for surgery
Dec 2008 - radical left neck dissection. 24 lymph nodes removed, 8 confirmed with cancer.
Jul 2009 - next follow up scan. Keep your fingers crossed for a clean scan.

I had one of the most curable kinds of cancer. It's almost never life threatening. I have a wicked scar on the left side of my neck, from my ear down across to my right collar bne - kind of like a big J.

I take 150 mcg of Synthroid every morning - about 5:30 on weekdays and 7:00 isd on weekends. My endocinolgist prefers Synthroid because she feels that her paitients do better on that one. She told me (and I've confirmed with my research) that I shouldn't change brands because thyroid replacement hormones are kind of tricky and changing brands can mean that you body may go through another entire adjustmet phase. I've not had any adverse side effects with Synthroid and, considering how bad the iodine prep time was, I don't ever want to feel that way again.

I have a co-worker who had one lobe of her thyroid removed and she uses the generic (only 20 mcg) with great results. So, I think it's up to you and your doctor.

I'm not remotely an expert, but I'm very open to sharing my experience and give my support

BTW - I don't want to limit this to just thyroid stuff. If anyone else is having some health issue that she needs support on...we're here.

[aussiekeeper]

Keep at it, fight the good fight, you will win.

Ron

[Dino]

I rember my mom having her thyroid removed when I was about 16 or 17. I don't rember why but I don't remember her having any type of cancer. Best wishes to you and the scar can't be to nasty I don't remember seeing it at the bash.
Posted via Mobile Device

Sorry just realized it was the women only thread. I never know where I am at when I am on the .org mobile

[mrsBusawhipped]

I have been very fortunate so far. I take meds for it, well I just started back taking meds.

Don't worry too much about that scar. Once it is healed good, I don't think anyone would even notice it. Just curious though, why did they make such a long cut? I am guessing to not nick the jugular. I found the picture below and it just seemed alot of cutting for something so small. Anyway, I am glad you are better now.

[Mrs.Rubber2Burn]

I am still having ups and downs with my thyroid; which is causing some other hormonal issues. I too am on .150 mcg of Synthroid a day. Every Endocrinologist that I have seen will not write for a generic or any other brand as they say that patients do not do as well.

I am finally pulling out of a pretty nasty rut/depression but some of that has to do with hormones. I REALLY HATE hormones some times. Then of course the daily just "dealing" with my rheumatoid arthiritis mess can be a drag, but I just try to stay positive. I that aspect I have not been the best to my body as I should.

I do not have a thyroid due to it being removed from a tumor on it. It turned out to be benign.

[HRHDi]

Originally Posted by mrsBusawhipped

I have been very fortunate so far. I take meds for it, well I just started back taking meds.

Don't worry too much about that scar. Once it is healed good, I don't think anyone would even notice it. Just curious though, why did they make such a long cut? I am guessing to not nick the jugular. I found the picture below and it just seemed alot of cutting for something so small. Anyway, I am glad you are better now.

the scar from my first surgery was about 1.5 in. long at the base of my neck (where that little divot is). The big scar is from the neck dissection. It had to be big because all of the lymph nodes on the left side of my neck were being removed. Warning - this is the video of a real surgery.
Linky

I'm really not self-conscious about the scar. It's actually kind of cool. There are only 2 things about it that bug me:

1. scar tissue is thicker and less flexible than regular skin so it impairs my movement when I turn my head sometimes and it's also still sensitive, but that's lessening.

2. people stare but don't ask about it. I understand that it's kind of shocking and they don't know that I'm not sensitive about it, but seriously, do they think I don't notice them staring?

And thanks to everyone here at the .oRg for their tremendous support, even before I knew anyone. I never say that I'm a cancer survivor because at the point my cancer was diagnosed, the only thing that was life-threatening was that the right side of my thyroid had enlarged to the point that it was obstructing my windpipe. I never had chemo or traditional radiation. I didn't lose my hair. All I had was 2 surgeries and the radioactive iodine...it seems so minor compared to what most cancer patients deal with.

[HRHDi]

Originally Posted by Mrs.Rubber2Burn

I am still having ups and downs with my thyroid; which is causing some other hormonal issues. I too am on .150 mcg of Synthroid a day. Every Endocrinologist that I have seen will not write for a generic or any other brand as they say that patients do not do as well.

I am finally pulling out of a pretty nasty rut/depression but some of that has to do with hormones. I REALLY HATE hormones some times. Then of course the daily just "dealing" with my rheumatoid arthiritis mess can be a drag, but I just try to stay positive. I that aspect I have not been the best to my body as I should.

I do not have a thyroid due to it being removed from a tumor on it. It turned out to be benign.

Kristin, you've had such a rough year. Has your endo suggested changing your dose? You were really young when you had your thyroid removed, weren't you? Maybe your body's responding differently now.

[MyRulz]

Wow, Di - reading your story makes me feel very lucky.

I was diagnosed with hypothyroid about a year and a half ago. I had been feeling terrible, but it was progressive and I just thought it was me. It all came along around the time of our move to Austin, which was VERY STRESSFUL. When I finally went to see the doctor, the TSH test came back at a 53. Over the past year, my meds have been very slowly increased - I am now up to 125 mcg of Synthroid a day. A few weeks back, my TSH test came back at a 4.5 level. During this time, I have gained about 30 pounds. I had an ultrasound about 8 months ago and it was normal. My doctor said that rules out cancer, for this I am very thankful.

The symptoms and side effects from hypothyroid really suck and it's hard not to get down at times ... I could not believe how many of the little things I had going on within, were actually all tied back to this one problem.

I look forward to having a place to come to talk about this issue. It seems to me, if someone hasn't experienced it, they seem to know nothing about it. Kristin have talked about our experiences a lot and it helps sometimes.

Thanks, Di for taking the lead here.

[mrsBusawhipped]

Originally Posted by HRHDi

the scar from my first surgery was about 1.5 in. long at the base of my neck (where that little divot is). The big scar is from the neck dissection. It had to be big because all of the lymph nodes on the left side of my neck were being removed. Warning - this is the video of a real surgery.
Linky

I'm really not self-conscious about the scar. It's actually kind of cool. There are only 2 things about it that bug me:

1. scar tissue is thicker and less flexible than regular skin so it impairs my movement when I turn my head sometimes and it's also still sensitive, but that's lessening.

2. people stare but don't ask about it. I understand that it's kind of shocking and they don't know that I'm not sensitive about it, but seriously, do they think I don't notice them staring?

And thanks to everyone here at the .oRg for their tremendous support, even before I knew anyone. I never say that I'm a cancer survivor because at the point my cancer was diagnosed, the only thing that was life-threatening was that the right side of my thyroid had enlarged to the point that it was obstructing my windpipe. I never had chemo or traditional radiation. I didn't lose my hair. All I had was 2 surgeries and the radioactive iodine...it seems so minor compared to what most cancer patients deal with.

Ouch!!
It is great that you have such a wonderful attitude about your scar. I hope in time the tissue will soften up some so that you can have pain free movement again.

You are a Cancer Survivor. You caught it early. It could have spread to other areas, not to mention it was right next to the spinal cord.

[BlondeOnaBusa]

Originally Posted by HRHDi

the scar from my first surgery was about 1.5 in. long at the base of my neck (where that little divot is). The big scar is from the neck dissection. It had to be big because all of the lymph nodes on the left side of my neck were being removed. Warning - this is the video of a real surgery.
Linky

I'm really not self-conscious about the scar. It's actually kind of cool. There are only 2 things about it that bug me:

1. scar tissue is thicker and less flexible than regular skin so it impairs my movement when I turn my head sometimes and it's also still sensitive, but that's lessening.

2. people stare but don't ask about it. I understand that it's kind of shocking and they don't know that I'm not sensitive about it, but seriously, do they think I don't notice them staring?

And thanks to everyone here at the .oRg for their tremendous support, even before I knew anyone. I never say that I'm a cancer survivor because at the point my cancer was diagnosed, the only thing that was life-threatening was that the right side of my thyroid had enlarged to the point that it was obstructing my windpipe. I never had chemo or traditional radiation. I didn't lose my hair. All I had was 2 surgeries and the radioactive iodine...it seems so minor compared to what most cancer patients deal with.

Di, I think the scar tissue will lesson as time goes by, I had surgery on my neck 10 yrs ago. You can't really see the scar now but after I had the surgery it looked like I was in a bad bar fight. It was raised, hard as a rock and discolored. Now it just looks like a wrinkle and no one even notices it. Hopefully your scar tissue will ease over time and you will get the movement back.

[Dino]

Originally Posted by HRHDi

the scar from my first surgery was about 1.5 in. long at the base of my neck (where that little divot is). The big scar is from the neck dissection. It had to be big because all of the lymph nodes on the left side of my neck were being removed. Warning - this is the video of a real surgery.
Linky

I'm really not self-conscious about the scar. It's actually kind of cool. There are only 2 things about it that bug me:

1. scar tissue is thicker and less flexible than regular skin so it impairs my movement when I turn my head sometimes and it's also still sensitive, but that's lessening.

2. people stare but don't ask about it. I understand that it's kind of shocking and they don't know that I'm not sensitive about it, but seriously, do they think I don't notice them staring?

And thanks to everyone here at the .oRg for their tremendous support, even before I knew anyone. I never say that I'm a cancer survivor because at the point my cancer was diagnosed, the only thing that was life-threatening was that the right side of my thyroid had enlarged to the point that it was obstructing my windpipe. I never had chemo or traditional radiation. I didn't lose my hair. All I had was 2 surgeries and the radioactive iodine...it seems so minor compared to what most cancer patients deal with.

Scars are just tattoos with better stories behind them...

[HRHDi]

I realize this is probably a common problem, but still...

It's been a little more than a year that I've been on Synthroid and the only side effect that really impacts my life in a negative way is that I'm more suseptible to moodiness, especially the PMS kind.

I hate that feeling when I wake up of the Were-B!tch lurking just under the surface ready to rip the head off some unsuspecting family member, friend or co-worker. I think most women understand and hate it as much as I do. I also don't think people who don't experience, understand it. I'm afraid that those who don't know what it's like, don't realize we fight it as much as we do. It's truly a struggle some days - physically and emotionally exhausting.

Being in a bad mood sucks...everyone understands that. But I think it's worse when I feel that I'm not really in control of it.

[mrsBusawhipped]

Yeah, I get that too. But Thank the Lord, not too often. But your right, even I can't stand to be around me. I try to warn Hubby and find something to lighten the "mood". Most of the time I spend it telling myself "This too shall pass".

Hang in there!

[MyRulz]

So, I had my first appointment with an Endocronologist today: He performed a sonogram and stated my thyroid is "like swiss cheese", instead of being solid and it's more than twice as big as it's supposed to be. He sent me for bloodwork = 5 vials ... so now the waiting game begins. He's betting on Hashimoto's aka Autoimmune Thyroiditis. He said in the thyroid world, this isn't "great news", but if he's right ... it's a whole lot better than it could be. I'm crossing my fingers.

[Nick7]

My wife had hers taken out a few years ago. She only has one scare at the base of her neck. her surgen did a great job. I hope all is well with you!

[FloydV]

Wow! You seem about as unlucky as me. How old are you? I thought I had it bad, but that much surgery and chemo must have been hell.

I had pericarditis when I was 20. It scared my heart and the sack around it.
The scars filled with calcium and the sack became so thick it wouldn't let my heart expand, so I had congestive heart failure starting at age 45.

I finally became so close to death that they cracked my chest and cut the sack off of my heart. I still have heart issues because the heart itself is scared,
but I've been pretty much alright since the surgery in 1999.

I think Synthroid is pretty much the standard. I wouldn't change brands. I think it is pretty safe too as long as you don't take too much or too little.

Good luck to you.

[HRHDi]

Lisa - that sucks. But honestly, living with a bad thyroid or without one, is very doable and relatively low maintenance. 1 little pill every day and a harder time losing weight. The key is getting the hormone replacement set to a level that you can live with. Once you get that down, it's just remembering that pill everyday...because, life really sucks if you forget it.

and Floyd - my little brother lives in Idaho Falls! I've always been really healthy so this was really a shock. But other than having nerve damage from my last surgery, it's really just maintenance. The nerves are slowly "waking up" and my surgeon hasn't said anything about it being permanent so I'm waiting. Here's hoping your ticker keeps going strong.

[FloydV]

This is a great place (beautiful), which your brother probably tells you. I moved here from Texas, the land of the flat, hot, and brown. I've never really seen country that is such eye candy. There are real wilderness areas here. You can only get there by horse or helicopter.

Anyway, pm me your brother's name and I'll say high for you.

[Mrs.Rubber2Burn]

Lisa I am sorry to hear the news. I know that neither possible diagnosis your endocrinologist suggested is wonderful news, but you definately do not want to mess with anything have do with "autoimmune". The autoimmune mess is what I deal with on a daily basis and not having much of an immune system affects you in so many ways.

Take last week, Adam came home from his trip with the sniffles. The next day I am at the doctor with both ears infected, and major sinus infection, and enlarged tonsils and lymph nodes. I had to get an injection of anti biotics and steriods while in the office and am still taking another 10 day course of oral anti biotics.

My main problem with my thyroid hormones being "off" is like Diana mentioned previously. My PMS becomes unbearable to the point I can not stand myself. I will go from crying to all out beotch on wheels within seconds.

Let me know if I can do anything to help, or even just a shoulder or ear.

[markiee43]

Yea i retired at 44 and now 50 and i am board ass hell can only fish and race cars and bikes for so long need a new hobbie any help