# I have Graves and am MISERABLE



## MrGraves (Nov 6, 2009)

This history is complicated and I dont have insurance so I feel like I am the last to know what is going on with my health even though I am telling Doctors how I feel. I am a nice person who loves people but this disease is really taking that away from me as well as many other things.

I had kidney surgery on both of my kidneys in april, it was to remove stones, my left kidney had to be probed and cut. I have not been the same since. I have seen 2 endocrynologist and got nowhere other than diagnosed. 
I live in severe pain peppered with mental anguish daily. 
Ive been on PTU and Bystolic. The PTU helped the 1st round, then just started making me very nautios and now I cant take it at all. The Bystolic will slow my heart down so I take it on emergency basis because the side effects are horrible. I have read about some medications in this forum I have never heard of or been offered to me. I have a fantastic internal medicine specialist named Dr.Mike. He has saved my life this year. I was officially diagnosed by a "endocrynologist" in may. This thread is just going to put it out there as I am so desparate to feel better im going to try and include all info . 
I AM TERRIFIED TO GET MY THYROID REMOVED my kidney surgery was the worst experience of my life, I have passed 18 kidney stones this year. My Urologist said the stones are coming from the over active thyroid but he cant help me because he is just a urologist. So I go pop 325 down at a endo's office for a blood test and for him to look over my previous blood test from another doc (i had to move west for work) and Dr. L said I have Graves Disease. 
My symtoms are:
Loss of vision of colors
I feel like I have a door stop in my throat
I have 6-7 Bowel movements a day, none of them pleasant. 
sometimes 5 out of 10, it hurts to pee (I am a male) 
My back and kidneys hurt around to my abdomen to where it is ruining my life
I have NO sex drive, it is painful and uncomfortable, been married 10 years and can have all of my wife I want, she is deprived and I feel like a tiny pitiful version of who I was 10 years ago. I am 35. 
I get that rash on my earlobes and shins and my feet hurt so bad sometimes when im on them for a daythat its undescribable. I cant take hydrocodone, the side effects are horrible. SO i deal with a lot of pain, which makes my patience grow short and my irretability go WAY UP! 
My testicles throb sometimes so bad it makes me sick. Though I am aging quickly and am puny in weight, I feel like the incredible Hulk, like a steroid rage ( I am not on any steroids, I cant even drink Coke or pepsi or especially coffee, all of which I used to LOVE) 
My ankles ITCH and BURN like they have poison Ivy but oddly, I am not allergic to poison Ivy.
I sweat through my shirt all day, some nights, 3 out of 7 I wake up covered in sweat to where I cant get back in bed unitl I shower and change the sheets. 
I do not have PTSD, I am not Bi-Polar, 
I have tremors and the shakes, sometimes very prolificaly, this has robbed me of my talent to really be able to play the guitar & Piano. 
Here is the bad part that is REALLY starting to scare me. 
This is getting unmanagable, I cant tell from one day to the next how I am going to feel. I have canceled all my family activity and am going to sit alone this Thanksgiving and Christmas with my wife. (My poor wife ... ) 
now the BAD part, its been about the last 60 days, my heart beat / pulse is constantly over 75, between 75 and 90 24 hours a day. I am starting to have very painfull chest pains like a bolt of lightening is hitting my chest, im scared to have a heart attack infront of my wife and die. The way I feel today, If I did not have my beautiful wife and cats and other immediate family, I would blow my brains out. I dont have kids and cant until "I decide to have my thyroid removed"
Stress and Death seem to REALLY throw me over the edge. I am self employed so stress is a 24 hour a day course. 
My eyes started buldging out and I started to take Gypsy Wort (PLEASE NOTE YOU ARE NOT TO TAKE THIS WITHOUT TALKING TO YOUR DOCTOR, IT SAYS RIGHT ON THE BOTTLE DO NOT THAKE THIS IF YOU ARE ALREADY ON A ENDOCRYN BASED MED, IT WILL INTERFERE) 
The Gypsy Wort settled my eyes back a little, took away the black rings around my eyes and brought color back to my vision and, also cooled the testicle pain. 
It, like the pTU and Bystolic has kinda started to stop working so good, so, I added lemon Balm (My wife is a master gardner who knows tons of stuff about herbal meds)
same with the lemon balm, I was able to take it because I am on NOT on pharmacutical drugs for my graves. so check with your DOC FIRST before indulging. I also take HT-157 and melotonin to help me sleep, it helps but isnt perfect. They gave me tramadol for the pain but the side effects of that seemed to be kidney pain and mental depression and it didnt really help all that much. 
Meds I am on now
Gypsy Wort
Lemon Balm
American Ginsing
HT-157 
Melotonin 1's (take 2 at night, cant take the 3's, they have vitamin b in them which keeps me awake)
Pharacuticals are
2mg of xnax a day and 1050 mg of soma a day. The Soma are awesome for the leg and back pain but make me dopey and sound drunk when I am talking, I will admit to sometimes skimping on my pharmacuticals so I can build them up and just escape this horrible feeling for a few hours when I dont have to work. When I work (12 hours a day, ) I dont take anything as I operate big saws and routers and cant be on anything or Ill lose my fingers.

I have a lot of questions for you kind folks if you would answer them for me. 
Does this affect sex drive fertility and mental aggressiveness in anyone else? 
Are there any Men in here with Graves and do your back and groin area just kill you sometimes with pain?
do your ankles feel on fire or like REALLY REALLY sunburned?
Is anyone else prescribed Xnax or soma for relief of your symtoms?
Is there other meds I am not aware of I could ask my Doc about? Everything I know about, I mentioned here. 
My Doc said he thinks they can go in and remove the bad parts of my thyroid and let me keep the rest, have you heard of this? They have to cut my neck to do it.
Is there anything I can do for my Sex drive? and fertility? and for the disgusting smelling profuse sweat & consant running to the bathroom
Does anyone here smoke M for relief, I read about how that really helps some people. With the medicinal M on the way, maybe it could help me?
how can I maintain the way I feel from day to day so I can plan my life correctly. 
Do you feel like you are dieing? Because I do. 
Does this affect your cardio to a point of panic? 
Does it all , together, just make you want to give up?
Thank you for your time.
Desperately
MrGraves


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## chopper (Mar 4, 2007)

I am a 39 year old MALE and know exactly what you are going through, although I have Hashi's and Graves and after about 8 years of antibody attacks and living the way you are living now, thankfully, my thryroid is finally starting to die off and Im turning hypo.

Now that I am finally going hypo I can tell you that YES it is the Graves' that makes you feel that way. I was the same way and things are very different now.

I've had 10,000 scripts for Xanax and never took them cause its not anxiety - its Graves. I too am self employed and always stressed and also married a SAINT who put up with my crap for 8 or 9 years now. I don't know how she did it. I also spent many a christmas and thanksgiving alone. Most of that is because like you, I developed Agoraphobia from all the panic attacks associated with Graves. It was truly the worst times of my life and I am glad its behind me.

I was fortunate enough to have kids however, although according to my doctors I have almost no testosterone so he doesn't understand how I was able to pull it off. My testosterone was so low my edno called my "girly man" once. We had a laugh about it.

As you mentioned "blowing your brains out" - well, I would not advise that of course - certainly not over a stupid disease. If you are truly that not afraid to die then my advice to you is get your butt to a good surgeon and have him cut out your thyroid and then your problem would be solved.

I too was a big chicken and I lost 8 or 9 years of my life and the most important years of my young children's lives as well perhaps. I would not do it over again. I would go, take some Xanax or whatever it takes to get me into the surgery and get my gland cut out. Yes they have to cut your neck but its not like they are decapitating you - it's like a 1.5 inch slice at the base of your neck just above the notch in your collar bone and below your Adam's apple.

I perfectly well understand the irony of having to do things that make you nervous when you are already nervous - it's cruel. Just think about it as the very last time you'll ever be nervous in your life and then it will all be over with. Take a few deep breaths of the anesthesia and you will wake up with your life back - better than it ever was.

Weed and booze will only make everything worse - TRUST ME! I quit drinking 7 years ago because of this.

Go do what you have to do - you'll feel alot better.


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## MrGraves (Nov 6, 2009)

If I may ask, do you have to take steroids?
How many days of work should I anticipate to miss when they give me the surgery and, is my throat going to hurt?
Thank you so much nasdaqphil, Ive been crying all day. 
I go see my doc dec 22nd, so ill be in misery until than atleast

Im afraid if I go on steroids, my manhood will shrink up and Ill be a roidrage jerk all the time

this :jumping0047: this:sick0020: & This :aim33: as wll as this :sad0016:
is me in a nut shell.


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## chopper (Mar 4, 2007)

I have not taken steroids yet but my thyroid is still not fixed - it may very well be in my future too.

I've been around enough "juicers" in my life as an avid weightlifter in my younger years to know that what you see on TV as roid rage happens to folks who are ABUSING steroids, not to people who are following a doctors orders.

If you are simply putting back what your bady fails to make, it will not hurt you and you won't go nuts. Those bodybuilders who you see freaking out are taking 15 times what you are supposed to have in your system. You'll never reach that level unless you abuse a prescription and as far as I know, your junk won't shrink and your boys won't blow up or nothing crazy like that - that only happens at abusive doses. If you have hypogonadism (small balls) as a result of your thyroid malfunction, your testes may get a bit bigger on hormone replacement but that's a good thing I guess. arty0030: There won't be any cantelopes down there. They should just return to what would be your normal size before they shrunk due to lack of hormones.

Your sex life should resume and there will be no need for ****** if you know what I mean - better wood arty0049:. You're only trying to achieve levels that are normal for your body - you're not trying to grow 21 inch biceps.

Regarding the surgery, I have not gone through it but have heard enough war stories to fill you in. Most people return to work within a week. I personally think it would be best to allow 2 weeks but you will be fully functional after a week. Most of the time they keep you just 1 night. You wake the day after, they remove the drainage tube and you are on your way. Most complain about a slight sore throat and hoarse voice for a day or so but its usually managed with pain meds and is not a horrible pain - like a mild sore throat is what most folks describe it as. Since the stitches or glue will be right at the base of your neck, the most discomfort comes from turning your head (backing out of the driveway). Without having to turn your head much, you won't feel much.

Here's a good thyroid surgery story for you to get an idea of what its like:

http://household-tips.thefuntimesguide.com/2009/02/thyroid_removal.php


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## Andros (Aug 26, 2009)

MrGraves said:


> This history is complicated and I dont have insurance so I feel like I am the last to know what is going on with my health even though I am telling Doctors how I feel. I am a nice person who loves people but this disease is really taking that away from me as well as many other things.
> 
> I had kidney surgery on both of my kidneys in april, it was to remove stones, my left kidney had to be probed and cut. I have not been the same since. I have seen 2 endocrynologist and got nowhere other than diagnosed.
> I live in severe pain peppered with mental anguish daily.
> ...


Oh, Mr. Graves'!! Your story is so so familiar. Yes indeed, the kidney stones are probably from Graves'. I had them also and so have many others.

You really sound in dire straits here and I am going to ask you to talk to your doctor about having RAI instead of surgery. Have you considered this?

You are so far into the disease that I seriously doubt if antithyroid meds will help you much.

The ankle thing is probably pretibial myxedema.

I feel so bad for you right now; you sound so ill.

Not sure Ginseng is a good thing for you to take for it stimulates the immune system and in doing so also stimulates the autoantibodies and antibodies which is definitely not a good thing. You want to keep those quiet.

Not familiar w/ the other stuff you are taking but perhaps someone else will be.


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## MrGraves (Nov 6, 2009)

THANK YOU ALL SOOOOO Much!
What is a RAI? thousands of $$$ into this and no professional has said a word to me about a "RAI" :sick0025:


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## Andros (Aug 26, 2009)

MrGraves said:


> If I may ask, do you have to take steroids?
> How many days of work should I anticipate to miss when they give me the surgery and, is my throat going to hurt?
> Thank you so much nasdaqphil, Ive been crying all day.
> I go see my doc dec 22nd, so ill be in misery until than atleast
> ...


Aaaaaaaaaaaaaaaaw; sugars! You poor fellow. Hey, man to man.........Nasdaqphil gave you the best advice; seriously! What do we women know anyway!

Once you get that nasty thyroid out, healing can begin and if your testosterone does not come back up (I think it will though) then you can address that situation as well.

On step at a time here. Just know we as a group are here for you.


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## chopper (Mar 4, 2007)

RAI = RadioActive Iodine.

Your thyroid absorbs iodine like a sponge - this pill or drink, the RAI, enters your system and the thyroid absorbs all the golden nuclear juice and destroys the thyroid - no surgery required. Since your thyroid is the only bady part in the entire system that needs iodine, the radioactive iodine basically stays within the confines of your thyroid gland so you won't grow a third head or anything like that.

Of course you may glow in the dark for a few months afterwards but at least you won't get cut. (kidding)

It may be an option for you to discuss with your doctor. Start googling some of this stuff and get yourself informed about the possibilities.

millions of folks go through RAI for Graves' Disease. Google it.


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## MrGraves (Nov 6, 2009)

oh ok ok!! 
yea, Dr.L wanted to melt my thyroid, Dr mike says they can go in and take out the bad part, leave the good (according to my ultrasound) 
Im not afraid of getting cut, Imjust afraid.

_You're only trying to achieve levels that are normal for your body - you're not trying to grow 21 inch biceps_

That is a very good point no one has brought up. I dont want my weener to shrink, its already tiny as it is :winking0051: (gotta keep my sense of humor sometimes) Nasdaq and everyone, thank you!!! I am terrified, my wife has gone through hell with me and Im ready to get this fixed somehow. Looks like I have some options to look into and go over with my Docs. I will continue to post here incase I find out somthing that may help someone else.

Dr. Mike said this thing may just burn itself out, I was really hoping that would happen, he said my stress level could easily be adding to this problem, and this year, we moved, closed on a new house, bizz is slo due to the economy, my mother had 2 heart attacks and almost passed away in july, my cat died on christmas day of 2008 and she was my best buddy... so, its all gone down hill from there into kidney surgery and Graves... 
So, im praying for a miracle betwee now and dec22 when i see my doc again... 
Thank you all again!!!!


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## chopper (Mar 4, 2007)

MrGraves said:


> oh ok ok!!
> yea, Dr.L wanted to melt my thyroid, Dr mike says they can go in and take out the bad part, leave the good (according to my ultrasound)
> Im not afraid of getting cut, Imjust afraid.
> 
> ...


Dr. Mike is right - your thyroid could burn itself out as mine is finally starting to do. What Dr. Mike didn't tell you is that it may take 15 years to do this. :sick0025:

Stress DOES add to the problem - 100% no doubt about it. Ask anyone with Graves' and it's either been triggered by quitting smoking, getting a divorce, moving to a new house or having a baby it seems. Stress is huge!

As for your Wiener Schnitzel, chill out. Your stuff is not going to shrink dude. In fact, if you drop a few pounds after surgery it might even appear bigger and once you get your testosterone straight you'll be able to break concrete blocks in half with it! :confused0068:


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## Andros (Aug 26, 2009)

thechadmanhl2 said:


> Does this affect sex drive fertility and mental aggressiveness in anyone else?
> 
> Yes. My sex drive fluctuates from being a total prude, to being a sex maniac. I also am mentally agressive at times too.
> 
> ...


Welcome to the board. What is your current treatment regimen? Are you on anti-thyroid medication?


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## Andros (Aug 26, 2009)

MrGraves said:


> THANK YOU ALL SOOOOO Much!
> What is a RAI? thousands of $$$ into this and no professional has said a word to me about a "RAI" :sick0025:


Radioactive Iodine...............zaps that gland deadarty0006:

Here you can read all about it. http://www.cumc.columbia.edu/dept/thyroid/raiprep.html

Consider it one of your choices; do your research and do what is best for you.


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## MrGraves (Nov 6, 2009)

Ok, I am going to opt for the surgery of removal of some of the bad part. 
Thanks for all your input, the last 4 days have been real hard, got a lot going on, am very sore and am not sleeping too much. :anim_07: .

I am going to see if I can have this done during christmas break, kinda soon to spring this on my Docs but I think DR Mike will be glad as he has concerns about my heart. And so do I and my wife.. I cant wait to be semi normal again. Ill have to go back to all the people I screemed at and told to F off for no reason and try to redeem myself a little.. Ive been a real ass to people in a very aggressive way and I feel terrible. Man my Nards are just killing me today.. :sick0020:


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## Andros (Aug 26, 2009)

MrGraves said:


> Ok, I am going to opt for the surgery of removal of some of the bad part.
> Thanks for all your input, the last 4 days have been real hard, got a lot going on, am very sore and am not sleeping too much. :anim_07: .
> 
> I am going to see if I can have this done during christmas break, kinda soon to spring this on my Docs but I think DR Mike will be glad as he has concerns about my heart. And so do I and my wife.. I cant wait to be semi normal again. Ill have to go back to all the people I screemed at and told to F off for no reason and try to redeem myself a little.. Ive been a real ass to people in a very aggressive way and I feel terrible. Man my Nards are just killing me today.. :sick0020:


Excellent. Please let us know when the surgery date is scheduled so we can send good thoughts and vibes your way!

Here is a letter you can give to everyone..............

http://home.rica.net/deecee/information.htm

The above should also lend some insight to you as well. I was the same; I went off on and over anything you could name. I was a horrible person during those hard times.

This disease affects everything including the reproductive organs but take heart for once you are treated and on the road to health, all these aches and pains will go away.


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## MrGraves (Nov 6, 2009)

ANDROS! 
Thank you for that link to that letter.. i need that, ive been such a ******* to some people, some deserve it, a LOT, like my wonderful wife, dont deserve it at all . She is greatfull that I have joined this forum and have decided to get surgery and its because of this forum, you folks probly have saved my life because my chest pains are just getting worse and worse, like right now, im on 2 chongs of decent medicinal M 2mg of xnax 700mg of soma and I feel like jumping out my window and beating the ____ out of someone and that just aint me.. if it wasnt for the meds id probly beout in the rain splitting fire wood with a AXE, I find this very theraputic as its semi violent and ridiculously old fashioned. it gets my heart rate up yes, but, i feel doing this everyday has saved my life because when my heart decides to go crazy at 3am, its in good enough shape to handle it due to the firewood work outs. My back and legs hurt so bad tusday I could hardley walk...even with the soma.


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## chopper (Mar 4, 2007)

Sounds like you are making some good strides to getting fixed. Good for you. Just relax and in a bit it will all be over with and you'll probably never have to mention "heart", "Graves", or "Thyroid" ever again. I know my wife can't wait for that day either.

For now, enjoy that M and take a good one for me! arty0030:


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## MrGraves (Nov 6, 2009)

will do Phil!
Thanks Brother!


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## Andros (Aug 26, 2009)

MrGraves said:


> ANDROS!
> Thank you for that link to that letter.. i need that, ive been such a ******* to some people, some deserve it, a LOT, like my wonderful wife, dont deserve it at all . She is greatfull that I have joined this forum and have decided to get surgery and its because of this forum, you folks probly have saved my life because my chest pains are just getting worse and worse, like right now, im on 2 chongs of decent medicinal M 2mg of xnax 700mg of soma and I feel like jumping out my window and beating the ____ out of someone and that just aint me.. if it wasnt for the meds id probly beout in the rain splitting fire wood with a AXE, I find this very theraputic as its semi violent and ridiculously old fashioned. it gets my heart rate up yes, but, i feel doing this everyday has saved my life because when my heart decides to go crazy at 3am, its in good enough shape to handle it due to the firewood work outs. My back and legs hurt so bad tusday I could hardley walk...even with the soma.


{{{{{MrGraves}}}}} Punching bags are good; the woodpile works just as well.

Hang tough and do know that we are here for you.


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## MrGraves (Nov 6, 2009)

SEE, THIS SCARES ME
Inpatient RAI Treatment

If you are treated with large doses of radioiodine to destroy thyroid cancer metastases, you will need to be hospitalized and placed in isolation for about 3 days after taking this medication in order to minimize the risk of radiation exposure to others. Since the RAI is passed out of the body through all bodily fluids such as stool, urine, saliva and sweat are potential forms of contamination. You must be hospitalized in a special isolation room so that all of your bodily fluids may be disposed of properly. You will be served your meals on paper plates with disposable utensils. Your urine and stool will be collected and disposed of in proper radioactive waste containers. Your bed sheets will be specially laundered. Personal items such as pillows, stuffed animals, or needlepoint should not be brought into the isolation room since these items will become contaminated with radioactivity. Newspapers, magazines and paperback books are allowed because these can be thrown away. In addition, all nurses, doctors and housekeeping personnel who enter your hospital room must wear a special badge to monitor the amount of radiation that they are exposed to. Only brief visits are permitted.

woa! NO ONE HAS SAID CANCER TO ME... just graves 
man, this sounds miserable.


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## chopper (Mar 4, 2007)

Cancer is a whole different animal dude. With cancer they usually surgically remove the thyroid first and THEN give you a whopping dose of RAI just to be sure the surgeon didn't accidentally leave some of those cancerous thyroid cells to multiply in your system. It's a whole different protocol. No worries.


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## MrGraves (Nov 6, 2009)

shew... 
that sent me right back to the "physical removal" side of the fence real quick. 
its probly the graves that makes me this way but you couldnt keep me locked up fer 3 days, Id chew through the walls.. God Bless anyone that has to go through this.


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## MrGraves (Nov 6, 2009)

NDPHIL< I may go your route, and just wait, Im already miserable, I havnt read one good story about thy surgery or RAI... people are still sick afterword, im sick now, why add to it.. Dr mike thinks ive had thy problems since my early twenties and was never diagnosed correctly, so, this is who I am and have been,... I just need to learn patience, stay diligent with the meds that are working and patiently wait.. all these procedures sound very miserable and scary. i swear when i had my stones removed, they didnt knock me out enough and I have bad dreams about that surgery, i remember parts of it.


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## chopper (Mar 4, 2007)

My route sucked dude. Seriously. I was diagnosed in 2002 originally but have had very scary attacks as early as 21 years old - 18 years ago. I remember the first few - scared the living beans out of me but I was too young and too cool to go to the doctor - thought it was from partying too much.

If I were to do it all over again there is no way in hell I would wait but that's your call. You are also having a bit more heart symtpoms than I had. I am not classic Graves. I have Hashi's AND Graves so I am not as hyper as you but I swing back and forth all the time from hypo to hyper.

The thyroid is a very resilient gland. If you are waiting for it to die off it could be years or it could be never. Hashi's tends to really scar the crap out of your thyroid as mine is. If I knew I had classic graves I would have opted for surgery myself.

My mom had her thyroid removed. It was a piece of cake for her. 20-something years later she is still just fine and never had any trouble at all.


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## MrGraves (Nov 6, 2009)

ive partied a lot also in my day, not for the last 10 years though, just my early twenties, i asked my docs what that has to do with this and they said absolutely nothing, that graves and thy stuff rides on the Y chromasome and you either get this or diabete's, all the rest of my family is diabetic, im not. I think id wrather be..

so if i have had this for 10 years-12 years... whats another 2-3 years , this , though miserable, is as good as its been in a while with the herbal suppliments

forgive me Phil, is horishimoto's hypo? is that what that is? 
i was told graves and have been ignorantly concentrating on that term..


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