# This disease is ruining my life!!!!! Completely overwhelmed.



## collinsbac (Dec 20, 2010)

I think this morning I have completely just been whacked down abaout as far as I can go. Dermotologist says I have caught....scabies. Probably because of the "weakened immune system" I have because of Graves. SCABIES!!!

Everything started at Thanksgiving. Well started to the point where I knew something was seriously wrong, probably have had Graves for a very long time now that I know more about the disease. Always had high anxiety, depression, anger issues, high metabolism and an inability to gain weight. So I have been on Effexor for about a year now, before that I was being bounced around from med to med. Effexor has been the best, but I am afraid I will never be off of it- as my body is severely addicted to it. I get very sick within a few hours of missing a pill.

So Thanksgiving weekend, I was exhausted, couldn't stay awake to save my life. Thought it was just overexertion, as my parents were in town visiting. But it kept through the week, and my pulse started getting very high, and my chest was pounding. Extremely anxious, but not the normal kind of anxiety-and my eyes HURT, when I moved them up and down, they hurt- and felt so dry, but I was tearing up anyways- soaking my shirts, pillows with tears from my eyes. so I went to the doctor.

They freaked out about my pulse, resting HR of 170. Did an EKG, and seemed everything was normal, so she gave me Ativan to "calm down" and some Klonopin to help me sleep- since even though I was so tired, I still had insomnia. Gave me a referal to see an opthamologist same-day. He sent me to the ER for a CT scan. Showed severe sinusitus, was put on a high dose of antibiotics.

Another week goes by, no changes. I go back to the doctor, resting heart rate again 170's. I tell her I am not just the normal anxious. I want tests. She runs a gammut of tests, turns out I am hyperthyroid. Was given Tapazole and Propranolol. Or was it the Methimizole and PRopranolol? I don' tremember but I was given a referral to an endocronologist, who swiftly took me off the Tapazole, and put me on methimazole. Ran some more bloodwork. Husband gets sent off to Korea for a year tour, leaving me at home to work and take care of the kids sell our house since we are moving, etc.

My TSH 0.005 with a range of (.35-4.94)
and my FREE T4 of 2.3 had a range of (0.7-1.48)

Sent for a Thyroid scan and uptake, plus an ultrasound of my thyroid. No goiter. Scan and uptake results apparently "very impressive" diagnosed with Graves Diesease. Scheduled me for RAI after a week of having to go back off the thyroid meds which had just started providing me some relief from the restlesness, anxiety, tiredness etc. Survived a pre-planned week at Disneyworld with the inlaws. Just barely. My eyes are killing me. And I start breaking out in a swollen itchy rash on my shins. Opthamologist suggests seeing an ENT for the sinusitius. Also diagnosed me with graves Opthamology. Tells me to quit smoking, I quit smoking. Sends me for another CT scan. ENT gets results, still have sinusitus. Puts me on even stronger antibiotics.

Military clinic gets a new opthamologist, and as I am active duty, they require me to go there vs. the one I was already seeing. This one is about 90 years old, and doesn't ask me one question, just talks at me about taping my eyelids shut with scotch tape and to come back after 6 weeks (mind you I just had the second ct scan) says the latest scan confirms Graves Opthamalopathy. Yes, duh. Old opthamologist calls me personally about a day later, says I know you can't come see me any more but he wanted to make sure they were monitoring the eye muscle swelling very carefully as the last ct scan showed it was on the verge of becoming dangerous to my vision. And at this point I also look like an alien, with my eyes buldging out and what they called "Thyroid Stare" suggests trying to get an appointment/referral with an Neuro-opthamalogist.

About this time I go in for the RAI. There is nobody here to help me with my kids, thank God the daycare lady took my son in for the week and my daughter stayed at a friends the first 48 hours and had school during the day, then another friend stayed with me to help take care of her the remainder of the week.

After the RAI, rash on shins becomes unbearable, go to the derm, get oral steroids, and a punch biopsy to rule out pre-tbial myexedema. Results come back, just a granuloma. Break out in hives EVERYWHERE, gives me Atarax, steroid cream, have to apply and wrap in saran wrap fastened with tight soccer socks.

At this point, my work life is falling apart- "friends" start talking about how I am "high" all the time- because of the loopiness from my meds. Temporarily removed from status as NCO in charge. Can't think straight. life generally just sucks right now- but I try to keep it together because I have to take care of the kids and keep the house running as best I can.

ENT has me scheduled for a sinus surgery March 14th. I have always been sick with a cold- probably the last 4 years I have felt like I have had a cold. Or lingering cold. He's going to open up my sinuses and fix a deviated septum. I have run out of atarax (for the itching) and the steroid cream, so I went back to the dermatologist today, rash still has not gone away. Gave me a stronger steroid cream, and says it looks like I have scabies on my underarms. Gives me another cream I am supposewd to use tonight to kill the potential scabies.

I have another appt. with my PCM on Mar 1st, need more Claritin, Retin-A, and Ativan. Next Endo appointment is March 9th. Going to run some more bloodwork and I guess schedule another scan and uptake now that the RAI is done. Derm is hoping the Endo will be able to take me off of or switch my heart/thyroid meds he thinks I am allergic.

BTW my eyes have gotten better, as the antibiotics have seemed to lessen the sinusitus, and the oral steroids have been keeping the swelling down. I now only look like a freak first thing in the morning. Taping my eyes shut plus an eye gel is helping with the dryness. But the itching is unbearable, and I am still pretty tired all the time. and I miss my husband a lot. The house is starting to get out of control messy and I can't keep up with the laundry/dishes anymore. Plus anytime I try to call and vent to my mom, she turns it into conversation about poor her, she has to take care of grandma, and my 22 year old sister who is in and out of psych hospitals. Which I feel for her I really do, but not as much as I did two years ago as she has done absolutely nothing to try and fix her own situation. I just want a mom right now you know? And my dad is hell bent on this Bio-feedback stuff and that is all he can talk about, doctors are quacks, drive to Iowa and get this guy to do a biofeedback thing on you.

Thanks God for my mother in law who is coming up for a week to help out after the sinus surgery. She actually helps, cleans, plays with the kids, love to go to TJ Maxx and buy stuff for me and the kids. I feel so guilty but I am actually more happy that she is coming and not my own mom. How terrible is that?

So if you have managed to read all of this, thank you. Guess I really needed to get that all out. Time for a nap.


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## Andros (Aug 26, 2009)

collinsbac said:


> I think this morning I have completely just been whacked down abaout as far as I can go. Dermotologist says I have caught....scabies. Probably because of the "weakened immune system" I have because of Graves. SCABIES!!!
> 
> Everything started at Thanksgiving. Well started to the point where I knew something was seriously wrong, probably have had Graves for a very long time now that I know more about the disease. Always had high anxiety, depression, anger issues, high metabolism and an inability to gain weight. So I have been on Effexor for about a year now, before that I was being bounced around from med to med. Effexor has been the best, but I am afraid I will never be off of it- as my body is severely addicted to it. I get very sick within a few hours of missing a pill.
> 
> ...


We have a bunch of moms here so we will all gather around and give you a big huge hug.









When did you have the RAI??

Maybe the rash is from thyrotoxicosis (dumping.) I am glad you are having another uptake. I had to have RAI 3 times. That is not uncommon in the advanced stages of Graves' and it sure sounds like you have been.

Prior meds have been masking the symptoms for a long time methinks.

Thank God for MIL!! How refreshing!!! And wonderful! How many children do you have?

Lacrilube Ointment is really really good for night time application to the eyes. I had exphothalmos really bad and I found that to offer the most relief. The thing is, you have to be ready to go to sleep because it is thick and you can't see too good for a while.

Also, ice the periorbital area down and sleep w/your head slightly elevated.

I am wondering about the wisdom of sinus surgery right now. You have so so much going on.

Everything you have said has brought back many unfond memories to me. Graves' is just a horrible disease.


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## lavender (Jul 13, 2010)

Yikes! you sure have been through it, and I can relate, my Graves was pretty advanced when I was diagnosed as well, and I suspect I had it for years before I was diagnosed. I felt high for a while when my Graves was at its worst. Took a few months on methimazole to "come down."

Have you tried a neti pot for your sinuses? I finally broke down and started using one this winter, and it has really helped. After Christmas at the in-laws with something I was allergic to in the air, I started feeling like I was getting a sinus infection. Wanted to avoid antibiotics. Put some eucalyptus oil in the shower to loosen things up, and then used the neti pot to clear out the sinuses, and I felt like it was successful.

Don't feel guilty about the Mother in Law right now. You are sick and managing a lot, and you need all the help you can get! Don't fight whatever gifts the universe throws your way, just say thank you! Remember that you did not get this sick overnight, and that healing takes time as well.


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## CA-Lynn (Apr 29, 2010)

I'm sending lots and lots of hugs.


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## desrtbloom (May 23, 2010)

:hugs:

First, thank you and your family for your service to our country and your husband's active service.

Second, I can totally sympathize. I don't have kids, but I was off work for six months my house turned into a messy disaster because I was too sick to do anything but get myself back and forth to all my doctor's appointments. I had no help from any "friends" or my family. My husband was great and did what he could, but my sister who is my best friend never came over one time in six months to help me with housework or anything. Basically, I felt abandoned by many at the time I needed them the most. Anyway, I can feel your pain and please know you are not alone.

Thank God for your MIL! Take advantage of it and enjoy every minute of her spoiling you.

I agree with Andros though, until you get your Graves under control I don't know if I would be having any type of major surgery other than a thyroidectomy.

Also, just breathe and take each day at a time. That is all you can do to get through it. It will get better! Promise!

Patti


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## collinsbac (Dec 20, 2010)

Thank you all for the kind words and support! My RAI was JAnuary 14th-ish. The kids are 3 and , boy and girl respectively. They keep me going, and work, if I didn't have the kids and work I don't know if I'd ever get out of bed and do anything. I know I would just fall into another deep depression.

I actually tried a neti-pot on my own before I saw the ENT, and it was great, but then he gave me a sinus squeeze bottle which is awesome! If it weren't for the fact that this is really the best timing for her to come out and help me (shes works for a texas school and will be on spring break) I probably would hold off on the surgery but it's such a simple procedure, and I am so sick of ALWAYS having a cold/sinus infection. 
right now its this rash that is just driving me insane. my eyes are somewhat better, I have been gelling them and taping them shut at night, sleeping elevated and icing them. If I could just be a little less tired, my meds make it impossible to wake up in the morning and the longer my husband is gone the less patience I have with the kids and the house and my work colleauges. I'm trying so hard but they don't see that, They just either take advantage of my tiredness (kids) or talk behind my back about the "crazy" (itching, short temper) So much sucks right now and people have definitely lost an interst in helping out, Ive een "sick" for so long now.


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## Andros (Aug 26, 2009)

collinsbac said:


> Thank you all for the kind words and support! My RAI was JAnuary 14th-ish. The kids are 3 and , boy and girl respectively. They keep me going, and work, if I didn't have the kids and work I don't know if I'd ever get out of bed and do anything. I know I would just fall into another deep depression.
> 
> I actually tried a neti-pot on my own before I saw the ENT, and it was great, but then he gave me a sinus squeeze bottle which is awesome! If it weren't for the fact that this is really the best timing for her to come out and help me (shes works for a texas school and will be on spring break) I probably would hold off on the surgery but it's such a simple procedure, and I am so sick of ALWAYS having a cold/sinus infection.
> right now its this rash that is just driving me insane. my eyes are somewhat better, I have been gelling them and taping them shut at night, sleeping elevated and icing them. If I could just be a little less tired, my meds make it impossible to wake up in the morning and the longer my husband is gone the less patience I have with the kids and the house and my work colleauges. I'm trying so hard but they don't see that, They just either take advantage of my tiredness (kids) or talk behind my back about the "crazy" (itching, short temper) So much sucks right now and people have definitely lost an interst in helping out, Ive een "sick" for so long now.


We all can indentify w/what is happening to you. Most of us have all new friends, family members and other acquaintances now. Sad, but true. You see the true colors when the chips are down; that is for sure.

Life is really hard for you right now but I am here to tell you that you are going to make it in good stead. If I and others have (and we have), you will also. I am sure of this and always know that we are here for you no matter what!

You are a busy lady. I just know your children are adorable and precious and that they would love to have their dad home too!


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## april (Feb 23, 2011)

I really feel bad for you. I know how you feel. I have a seven kids. I told my doc to please HELP. My dishes aren't done, laundry is piled high. I am glad I have a diagnoses though. I kept thinking maybe I'm lazy, weak etc...
I have read that smoking dose make your eyes worse. What does the future look like with graves? I am hoping meds will help. I was just diagnosed on 2/24/11. Start meds tomorrow. Hope you feel better soon. I am scared of RAI it can cause breast and stomach cancer?


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## collinsbac (Dec 20, 2010)

thanks everybody? I am trying not to cry right now, i am covered head to toe in this rash, and blood from itching. Although I am doing my best not to) i feel like a freak. and nobody knows or cares. was just a t work yesterday, coworker was preoccupied to leave early. finally got a call back from my endo on friday afternoon, he wants to see me earlier about the rash, well ya. thats is what ive been nhoping, but my appointment is wednesday, how much earlier are we talking, when I called you last MONDAY!?! this morning, in addition to the rash being on my stomach now, i am bruised all over my legs. I took some benadryl, i have the atarax, and my plethora of other drugs for this to go take now, I've been spacing them out an hour apart, to see if there is any increase in itching after taking one, especially the methimazole. 
My son asked if I needed help itching my back, I let him scratch my back- his tiny little 3year old fingers couldn't scratch hard enough and it just made me itchier, but hes so "concerned" to take care of mommy, asked if I had bug bites. I couldn't complain. 
off to lala land here soon i suppose after that benadryl. hopefully it does something. hopefully those dishes find their way into the dishwasher by themselves. that is my only goal today, dishes. the rest has already gotten out of control, i can keep the dishes under control. or else I think I am going to lose all hope.


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## collinsbac (Dec 20, 2010)

april said:


> I really feel bad for you. I know how you feel. I have a seven kids. I told my doc to please HELP. My dishes aren't done, laundry is piled high. I am glad I have a diagnoses though. I kept thinking maybe I'm lazy, weak etc...
> I have read that smoking dose make your eyes worse. What does the future look like with graves? I am hoping meds will help. I was just diagnosed on 2/24/11. Start meds tomorrow. Hope you feel better soon. I am scared of RAI it can cause breast and stomach cancer?


7 kids! omg. I don't know how I would survive with that many ankle-biters. Yes smoking will make your eyes worse, personal experience here. I quit about 2 weeks after graves opthalomapathy diagnosis. My eyes are significantly better now. 
I think the future with Graves seems like its a little different for everyboddy, on here from what I've seen, people have a whole range of problems some worse than others. 
I haven't hear the RAI causes breast of stomach cancer, I was told it targets and only effects the thyroid. But who knows nowadays?

Good luck!


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## Andros (Aug 26, 2009)

collinsbac said:


> thanks everybody? I am trying not to cry right now, i am covered head to toe in this rash, and blood from itching. Although I am doing my best not to) i feel like a freak. and nobody knows or cares. was just a t work yesterday, coworker was preoccupied to leave early. finally got a call back from my endo on friday afternoon, he wants to see me earlier about the rash, well ya. thats is what ive been nhoping, but my appointment is wednesday, how much earlier are we talking, when I called you last MONDAY!?! this morning, in addition to the rash being on my stomach now, i am bruised all over my legs. I took some benadryl, i have the atarax, and my plethora of other drugs for this to go take now, I've been spacing them out an hour apart, to see if there is any increase in itching after taking one, especially the methimazole.
> My son asked if I needed help itching my back, I let him scratch my back- his tiny little 3year old fingers couldn't scratch hard enough and it just made me itchier, but hes so "concerned" to take care of mommy, asked if I had bug bites. I couldn't complain.
> off to lala land here soon i suppose after that benadryl. hopefully it does something. hopefully those dishes find their way into the dishwasher by themselves. that is my only goal today, dishes. the rest has already gotten out of control, i can keep the dishes under control. or else I think I am going to lose all hope.


It sounds like you are having thyrotoxicosis.

Thyrotoxicosis results in an increase in metabolic rate. This may result in:

•Smooth, moist, warm skin 
•Flushing of face and hands 
•Overgrown nails (acropachy, clubbing), which may lift off the nail bed (onycholysis) 
•Fine soft thinned scalp hair 
•Generalised itching (pruritus) 
•Urticaria 
•Increased skin pigmentation

How much Methimazole are you on? It could be the Methimazole!
http://www.drugs.com/sfx/methimazole-side-effects.html

I went through exactly what you are going through. I feel so bad for you right now. Only thing that ever helped were frequent "cool" showers. And than only for a short while.

Oh, dear......................


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## collinsbac (Dec 20, 2010)

andros I am on 10 mg of the methimazole. From what I have seen other peoples doses that doesn't seem like much but then again I am 110 pounds so that might be the reason for the smaller dose?

I have never ever had an allergic reaction to anything before so this is crazy to me.


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## Andros (Aug 26, 2009)

collinsbac said:


> andros I am on 10 mg of the methimazole. From what I have seen other peoples doses that doesn't seem like much but then again I am 110 pounds so that might be the reason for the smaller dose?
> 
> I have never ever had an allergic reaction to anything before so this is crazy to me.


Well; how are you faring today? Same here, my friend. Never had an allergy until the thyroid went whacko!

Yep; you are small. Have you called the doctor about all this? I think that you should.


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## collinsbac (Dec 20, 2010)

I went in to see the Endo yesterday afternoon. He gave me a shot of steroids and a script for oral steriods. Then said see you in a week- but he won't be here next week so I will be seeing his "assistant". It has been almost6 weeks since RAI shouldn't they be testing my blood to see what my levels are, maybe this is a reaction from the RAI maybe from the methimazole, couldn't we do blood tests to see if I can go off the methimazole?

I am so frustrated, and back to work today. Feeling pretty down and lethargic. Got next to no sleep last night, again. But this time not for itching, the shot has made it somewhat better. I just want my husband back. I went to the bathroom just now, not only are my thighs covered in hives they are all black and blue from bruising. I'm 25 why do I have to look like a leper? I am not haveing a good day especially now that I am about to cry thinking about it all.


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## collinsbac (Dec 20, 2010)

oh, and I recieved a book in the mail yesterday "Living in the Cave" or something like that. Made me start thinking about the hard times I have put myself through emotionally and my husband through, because of my mood swings and exhaustion. I knew from looking up Graves disease that it probably caused all of those problems, but it didn't really all sink in until I read that last night. I won it on Facebook straight from the author, came fast too.


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## Andros (Aug 26, 2009)

collinsbac said:


> I went in to see the Endo yesterday afternoon. He gave me a shot of steroids and a script for oral steriods. Then said see you in a week- but he won't be here next week so I will be seeing his "assistant". It has been almost6 weeks since RAI shouldn't they be testing my blood to see what my levels are, maybe this is a reaction from the RAI maybe from the methimazole, couldn't we do blood tests to see if I can go off the methimazole?
> 
> I am so frustrated, and back to work today. Feeling pretty down and lethargic. Got next to no sleep last night, again. But this time not for itching, the shot has made it somewhat better. I just want my husband back. I went to the bathroom just now, not only are my thighs covered in hives they are all black and blue from bruising. I'm 25 why do I have to look like a leper? I am not haveing a good day especially now that I am about to cry thinking about it all.


Aaaaaaaaaaaaaaaaaaw;







I hear ya' loud and clear!!

I believe they should have done labs; I surely do!! That is ridiculous because if you are hypo, as you well know, you needn't continue on the Methimazole which indeed could be your problem.

6 weeks; so it is "unlikely" that you are having a thyroxine dump. Ya' know?

Bless your little heart; it "is" going to get better even though it does not seem so right now.

If you need to cry; sit down and do it.

Now, when I was where you are at, I found myself a very good psychologist. Boy; let me tell you!! That woman helped me through the most difficult of times due to what Graves' did to me, my relationships and a whole bunch of other stuff my psyche being the major damage area.

Think about this. It could turn things around for you and help you heal faster.

Just know that I and others are here for you. We have walked your pathway.


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## collinsbac (Dec 20, 2010)

Andros I called back and he had me come in again the next day to check my reaction and run the blood tests which took another week to get back. I am now off the propanylol and off the steroids but he added Zantac as another antihistamine with the claritin. 
He gave me the ok for the Sinus surgery, and it was last week. They said I soaked up 4 bags of i.v. fluids and when I walked out of there my skin was not nearly as bad, still itchy but less dry so I have been making sure to drink a lot more water and the surgery has made a world of difference- I can breathe! I can breathe at night, have not been waking up as often, don't wake up with dry mouth and mucous all day its one big relief. 
But I am still itchy, and now seriously constipated which sucks. Adding metamucil and colace to my diet we will see if that helps. Noticed today I am having trouble focusing my eyes/not seeing as clearly, so I made another appt with the opothamologist supposed to have a folow up with him around this time anyways but I missed it. Can't believe I am staying on top of things like the meds and appointments and all that, my focus is so much better right now.


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## Andros (Aug 26, 2009)

collinsbac said:


> Andros I called back and he had me come in again the next day to check my reaction and run the blood tests which took another week to get back. I am now off the propanylol and off the steroids but he added Zantac as another antihistamine with the claritin.
> He gave me the ok for the Sinus surgery, and it was last week. They said I soaked up 4 bags of i.v. fluids and when I walked out of there my skin was not nearly as bad, still itchy but less dry so I have been making sure to drink a lot more water and the surgery has made a world of difference- I can breathe! I can breathe at night, have not been waking up as often, don't wake up with dry mouth and mucous all day its one big relief.
> But I am still itchy, and now seriously constipated which sucks. Adding metamucil and colace to my diet we will see if that helps. Noticed today I am having trouble focusing my eyes/not seeing as clearly, so I made another appt with the opothamologist supposed to have a folow up with him around this time anyways but I missed it. Can't believe I am staying on top of things like the meds and appointments and all that, my focus is so much better right now.


Are you still on the Methimazole though? I will be most anxious to look at your labs and I hope you include the ranges. They are important as different labs use different ranges.

Wow!! You are going to be in great shape. Can't believe you had that sinus surgery already!! You go!! I am so glad you can breath and double glad you are focusing better.

Just wait; you will have your life back again and soon. Whooooooooooohoo!!!

You must be hypo; decreased intestinal motility is a huge sign of that. Only the labs will tell.


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