# Newly Diagnosed...Compare Symptoms Please...



## hyperteacher27 (Nov 15, 2009)

Hi All,

I was just recently diagnosed with Graves' about a week ago.

I am opting for RAI and will go for it on Nov 30th.

I am not changing my mind, so would really love to hear positive stories.

Also, I'd like to share some random symptoms that I haven't even mentioned to my doctor. I'd like to know if anyone shares them.

I am wicked itchy, all over, almost all the time. It is worse at night.

I can't focus. When people talk to me, I just can't seem to pay attention. My eyes are wandering all over the room and my mind won't stay focused.

I have a really dry throat and nose. My nose gets cracked on the inside and even bleed occasionally and my throat is always dry.

Any feedback would be awesome.

By the way, this disease sucks huh?


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## Andros (Aug 26, 2009)

hyperteacher27 said:


> Hi All,
> 
> I was just recently diagnosed with Graves' about a week ago.
> 
> ...


Hi there, hyperteacher27 and welcome to the board.

Yes; this disease sucks big-time. I had RAI and am perfectly fine today. You may have a little thyroxine dump when you get your RAI but that is pretty normal.

I was so itchy I wanted to scratch my flesh off. Nothing helped except frequent cooling showers (no soap.) And that was only a temporary relief.

Everything on me was cracked which did include the nasal passages, my hands, my feet..................it was horrid. The only thing that helped that was Calendulum Ointment which I purchased at Vitamin Shoppe. Nothing else worked. I tried it all, Bag balm, Burt's Bee's..............just all manner of creams and lotions.

Glad you are not fooling around w/ the anti-thyroid meds. As far as I am concerned it is a waste of time, money and patience. Some go into temporary remission but I never heard of anyone going into permanent remission. Plus, those meds made me sick, just in a different way.

Yay for the 30th. and please hang in here with us. We will want to know how you fare and I am sure you can help others w/ your experience as well.


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## MrGraves (Nov 6, 2009)

hyperteacher27
im sorry to hear your diag. man, good for you on charging fast and forward and not messing around. Ive tried alternatives to fix this for years, PTU, Valume, Xnax, Soma, gypsy wort lemon balm, ht-157, this and that and none of it works. My thyroid has a way of knowing im trying to fight it and it gets ****ed and makes my life even more miserable. My chins and ankles feel like they are on fire they are so itchy, sometimes i have scratched the 1st layer of skin right off my legs. Bio-Oil helps with this but is not a cure. Man i envy you, I have wasted years of my life in misery and in denial, If I had been as pro active as you with a RAI or , what im FINALLY getting done this december, im scared of the RAI, so I am opting to get cut and have them go in and remove just part of it for now.. I wish I hadnt waited for it to "burn out" mine hasnt or gone into remission at all, infact it has gotten worse.

Yes, when people talk to me, I cant look them in the eye because of the gitters, 6-7 words into what they are saying, im lost... then get angry and snap off... real nice.. :jumping0047:

Ill have you on the prayer list for the 30th and take it easy but let us know how it goes, you may talk me into RAI... Peace rest and love to us hype's!


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## hyperteacher27 (Nov 15, 2009)

Andros and MrGraves - Thanks for responding!

It really, honestly helps to have people to talk to via the internet. I live with my fiance and even though he is SO loving and understanding...I know he doesn't REALLY understand.

It is impossible for him to get it, because he can physically and mentally feel what I feel.

Anyway - I am wicked nervous about the RAI, but I am convinced it is the right move.

I am a high school teacher and it becoming harder and harder to do my job. I don't get much rest at night, so I am very tired for my first few classes of the day. Dealing with 15-year old attitude problems has also started getting more difficult.

Andros...did your itching get better after RAI? I hope so!

Be well, you two. I'll be thinking of ya! I hope more people respond!


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## Andros (Aug 26, 2009)

hyperteacher27 said:


> Andros and MrGraves - Thanks for responding!
> 
> It really, honestly helps to have people to talk to via the internet. I live with my fiance and even though he is SO loving and understanding...I know he doesn't REALLY understand.
> 
> ...


Oh, yes............................once the "excess" thyroxine is out of your system, the itching and burning up sensation dissapates.

You may wish to read this, print it out and give a copy to your fiance' and others who are in the dark about how you feel physically and emotionally......

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


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## fellicity (Nov 14, 2009)

Hey there hyperteacher27 

I was diagnosed with Graves' in 2001, and had RAI the same year. At that point, my symptoms were so advanced (crazy high heart rate and blood pressure) that waiting for ATMs to work would have been insane.

After the RAI, I went through a couple of months where it took time for my thyroid levels to even out, and after about a year became hypo, as a lot of us do after RAI or surgery. I'm now on 200 mcg of Synthroid daily. Took a while to find the right dosage to make me feel "right", but as long as my TSH stays around 1.5 or 2 mIU/L, I'm good.

When hyper, I was constantly itchy, plus heat-intolerant, lost hair, super-wild mood swings, palpitations, etc. etc. Now that I'm hypo, I still deal with the itchiness and some hair loss, but I've also developed what seems to be eczema on my scalp and legs.

Oh, Graves'... yeah, it's a total pain in the neck (literally ;-))


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## hyperteacher27 (Nov 15, 2009)

Thanks again for the responses.

I will definitely keep posting, and of course give updates after my treatment on the 30th.

I really appreciate the support.

Any other RAI stories out there? Any ridiculous weight gain?

For totally vain reasons, I hope my weight doesn't get out of control. I am getting married in July and the dress is already purchased! Eek!


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## hyperteacher27 (Nov 15, 2009)

In fact...who cares about the weight gain. Now I am reading horrendous stories of developing the eye disease because of RAI.

I have no eye symptoms except that they are sometimes, and I mean very rarely, dry. I use preservative free drops for this.

I find it very hard to believe that RAI CAUSES TED. I am guessing it just doesn't help it so that if you were predisposed to getting it anyway, you will get it.

BLEH. I hate all this.


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## Andros (Aug 26, 2009)

hyperteacher27 said:


> In fact...who cares about the weight gain. Now I am reading horrendous stories of developing the eye disease because of RAI.
> 
> I have no eye symptoms except that they are sometimes, and I mean very rarely, dry. I use preservative free drops for this.
> 
> ...


Hi! RAI does not cause GED/TED. This is the cause......

The congestive autoimmune form of TED is caused by both stimulating and blocking TSH receptor antibodies (TRAb) and also immune system chemicals known as cytokines. Stimulating TRAb are also known as TSI. These thyroid antibodies are primarily seen in patients with Graves' disease although .......continue reading...........

http://www.suite101.com/blog/daisyelaine/1074

However, RAI has been known to exacerbate TED in "some" people. I have read that as a precaution, some patients are put on prednisone for the RAI and supposedly, this is quite helpful. Well, how would we know? The word "some" leaves question marks.

I hate this too.


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## MrGraves (Nov 6, 2009)

oh man, ive been battling with this because of the same stuff, I actualy do use the energy i do have and if RAI makes me hypo... im going to be more angry then I am now!
I feel like like sometimes, even wth these treatments, were still sick which makes me wonder if I should get anything done.

Dont think your vain! you must be skinny, im real skinny and Id like to keep it that way, im sure your fiance would also, try to keep the package that he is in love with now. . that is what happened to my wife, we got married and its been one illness after another with me and I kinda turned into a total JERK with the graves. If your worried about the TED, .. try not to and if you smoke, definately quit. If your having eye problems, talk to your doctors and ask them if you can take gypsy wort, i know it sounds funky, but man, it settled my eyes down, and brought quite a lot of color back to my vision. It took away the testicular throbbing and pain for about a month but that is back and the gypsy dont seem to be doing nothing for it. (im a male... duhhhh, i guesss so having testty's and all... ) its quite strange for me, all the clinics ive been to and the 3 real docs i have seen said graves in men is pretty rare. I dunno.

Having this forum has been a great help to me, I know that and I appreciate everyone who chimes in on here. Im back to square one again though.. and I have a Doc's appt tuesday to discuss the meds for the up coming procedure on the 22nd of december and now I got more ?'s like the prednisone thing... 
I hate all this also ... I just ask why.. why this.. why now.. & why is so little seemingly known about what to really do... 
hyperteach, dont let yourself get toooo emotionaly involved in this like I have , im so wrapped up in the decision, I cant make it. Please get your stuff done and live your life!

Do any other Hyper's here absolutely LOATH car rides like me, if its more than 20 minutes in the car, i get covered in sweat and my back and legs all become one piece.. 
its horrible.


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## Andros (Aug 26, 2009)

MrGraves said:


> oh man, ive been battling with this because of the same stuff, I actualy do use the energy i do have and if RAI makes me hypo... im going to be more angry then I am now!
> I feel like like sometimes, even wth these treatments, were still sick which makes me wonder if I should get anything done.
> 
> Dont think your vain! you must be skinny, im real skinny and Id like to keep it that way, im sure your fiance would also, try to keep the package that he is in love with now. . that is what happened to my wife, we got married and its been one illness after another with me and I kinda turned into a total JERK with the graves. If your worried about the TED, .. try not to and if you smoke, definately quit. If your having eye problems, talk to your doctors and ask them if you can take gypsy wort, i know it sounds funky, but man, it settled my eyes down, and brought quite a lot of color back to my vision. It took away the testicular throbbing and pain for about a month but that is back and the gypsy dont seem to be doing nothing for it. (im a male... duhhhh, i guesss so having testty's and all... ) its quite strange for me, all the clinics ive been to and the 3 real docs i have seen said graves in men is pretty rare. I dunno.
> ...


Oh, yes.................could not tolerate motion. It's a spatial thing. I remember all too well.


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## hyperteacher27 (Nov 15, 2009)

Hello all,

I just had my RAI treatment at 9am this morning and I am feeling normal.

I am home from work for 3 days and plan on just vegging out and watching daytime television.

Another update is that I switched Endocrinologists. My original one was a beast. No bedside manner whatsoever and just cold and rude.

Saw a new one on the Tuesday before Thanksgiving and she is wonderful.

She put me at ease regarding the RAI treatment and now I am confident that I will be feeling better by Christmas or so.

Thanks for the support on this board. I appreciate all of your comments and I hope you will keep them coming!


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## Andros (Aug 26, 2009)

hyperteacher27 said:


> Hello all,
> 
> I just had my RAI treatment at 9am this morning and I am feeling normal.
> 
> ...


Oh, this is the most wonderful news!! I hope Maine Mom reads your post as she is so so discouraged. She has a "doctor" problem as well and he/she won't treat her.

Put your footsies up and chill! Good for you, you sound wonderful and happy.

God bless,


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## fuzzy (Nov 19, 2009)

my docs have been great, i live near liverpool in the NW of england, if you come over we all all hook up!!!!!!!11

i had rai and felt fine when still on carbinazole, now i feel tired, go back to hopital next week, will know whats going on then


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## hyperteacher27 (Nov 15, 2009)

Hi All,

So it has been one full week since my RAI treatment. Definitely feel like my "dumping" happened fours days post treatment. I am feeling much less jittery today, and not sweaty at all! I actually wore a long sleeve shirt today! shocking!

Now I am not complaining at all, just wondering if anyone has had a similar experience. While I am feeling like some of my hyper symptoms are slowly fading, I also just came back from my PCP and she diagnosed me with a yeast infection and a sinus infection. WTF? I don't feel all that bad, but had a scheduled follow up with her (she referred me to my Endo back in October) and I figured I would mention the few things that were ailing me (dry cough, post nasal drip, slight ear pain and then some classic yeast infection symptoms, subtle but there)

Is this normal to be open to infection easier post RAI?


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## Andros (Aug 26, 2009)

hyperteacher27 said:


> Hi All,
> 
> So it has been one full week since my RAI treatment. Definitely feel like my "dumping" happened fours days post treatment. I am feeling much less jittery today, and not sweaty at all! I actually wore a long sleeve shirt today! shocking!
> 
> ...


It is normal in the sense that your body has been through hell and back. My experience shows it will take about 18 months for your body to hear provided you are on a sufficient amount of thyroxine for you and that you work on life-style changes "if" needed.

It happens that was one of my biggest problems pre and post RAI. Constant infections.

Good to hear from you; you sound good in spite of the other things going on. Take heart; it is a journey.


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## Nova (Nov 12, 2009)

Hi all, I have Grave's, yes it does suck! I also had RAI and that was not as bad as it sounds. Actually, I much preferred the pill option to a surgery, but that was just me at that time when my options were presented. Don't let Grave's go, it can be fatal, get treatment. Don't be lulled into believing that the treatment is a cure - there's a difference. You will likely need to take a pill for the rest of your life and be in and out of the doc's office more times than you ever wanted...but yet, I can still say, that it was worth it to take the hyper symptoms away - my RAI was about 4 yrs ago...I just had my thyroid levels checked in November and had gone hypo, and as of Dec apparently my levels look "great" according to the doc. Find a doc you can talk to and will take the time to listen - I wasted a few years on a highly qualified specialist with fancy office and it got me nowhere...I finally went to a university clinic and they are helping me - I hope. I go back in Jan for another test on levels, but really, what I've learned about levels is to monitor them yourself, learn when it is you feel good and try to get your doc to fine tune around that level - normal is relative. Best wishes with your RAI's - don't sweat it, the precautions are there for a reason, but don't let that scare you!!


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## Andros (Aug 26, 2009)

Nova said:


> Hi all, I have Grave's, yes it does suck! I also had RAI and that was not as bad as it sounds. Actually, I much preferred the pill option to a surgery, but that was just me at that time when my options were presented. Don't let Grave's go, it can be fatal, get treatment. Don't be lulled into believing that the treatment is a cure - there's a difference. You will likely need to take a pill for the rest of your life and be in and out of the doc's office more times than you ever wanted...but yet, I can still say, that it was worth it to take the hyper symptoms away - my RAI was about 4 yrs ago...I just had my thyroid levels checked in November and had gone hypo, and as of Dec apparently my levels look "great" according to the doc. Find a doc you can talk to and will take the time to listen - I wasted a few years on a highly qualified specialist with fancy office and it got me nowhere...I finally went to a university clinic and they are helping me - I hope. I go back in Jan for another test on levels, but really, what I've learned about levels is to monitor them yourself, learn when it is you feel good and try to get your doc to fine tune around that level - normal is relative. Best wishes with your RAI's - don't sweat it, the precautions are there for a reason, but don't let that scare you!!


Hi, Nova and welcome. How right you are about normal being relative. Some of us have been sick for so long, we don't even have a clue as to what normal might be (for us.)

Thanks for your upbeat comments. It's all true. It takes time and a good doc w/ patient compliance.


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## critterz (Oct 15, 2009)

I had RAI about 3 months ago and felt pretty good afterward. I fluctuated a bit but expected that so it wasn't too bad. I have now started on synthroid but only .088mg and I feel symptoms of hyper...shaking, sweating, etc. I had more bloodwork done yesterday so hopefully I will get leveled out. I am so sorry to hear how horrible this disease has been for so many. Mine was awful but I didn't have hair loss or weight gain(not yet anyway) I actually lost 30 lbs and need to put some on but as yet, no. I had the itching also but it was only on my back and I would scratch blood out of my back during the night. It was awful! That has gone away, but still have palpatations.
I am glad to see someone being so proactive and going forward with RAI- easy to go through and starts getting you back to normal quicker.


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## MrGraves (Nov 6, 2009)

wow, I was going to get it cut out, now you guys got me on the RAI trip I think... especially If I can come home the same day. I spent 45 days in jail as a young man and hospitals remind me of that horrible experience...
It was my fault, misdemenor offense for toilet papering someones house arty0006:, what landed me in jail was the failed drug test for weed... 
(FOR THE RECORD, this was OVER A DECADE & years and years ago)

"FEELING GOOD" Is very relative, thats is for sure. 
Im getting my labs back hopefully today but i doubt it with the holiday and all, Im so ready to go forward with treatment. Your reading posts from someone who has wasted years with Doctors who didnt have a clue, Im afraid I will be one of those with constant problems after the RAI.

Its nice to be stable enough to be able to post back in here, im shaking my butt off right now...its very hard to type...im glad its a holiday weekend, I dont have to work, I can just feel like crap... which is nice compared to working and feeling like crap.

Illpost my blood work in here as soon as I get it. !!!!!
Peace and Love to us all! God Bless!


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## Andros (Aug 26, 2009)

MrGraves said:


> wow, I was going to get it cut out, now you guys got me on the RAI trip I think... especially If I can come home the same day. I spent 45 days in jail as a young man and hospitals remind me of that horrible experience...
> It was my fault, misdemenor offense for toilet papering someones house arty0006:, what landed me in jail was the failed drug test for weed...
> (FOR THE RECORD, this was OVER A DECADE & years and years ago)
> 
> ...


RAI is a good option but be aware that you may have to have more than one RAI if you are in the advanced stages of Graves'. I had to have RAI 3 times because like you, I was fluffed off by the medical establishment as being a fat and lazy sloth (gained weight as many do.) Meanwhile I worked 14 hours a day and did all my own housework and other duties as well. Grrrrrrrrrrrr! Hardly ever ate anything but salad and tuna fish.

Plus, if you do not opt for surgery, you will never know whether you have cancer or not. These are things to consider.

But, no matter what you chose, I believe you should get it out.


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