[lwoods]

#1070276

Oh i re-read that..lol..i make it sounds as if hes horrible..hes not..hes generally a very gentle natured person..but when his moodiness comes along ..i guess idk how to describe it..i think the quote its not what you say its how you say it comes to mind..lol.. ” title=”Very Happy” /> ..thanks again

[lwoods]

#1019234

Hello!

I will try to not go on and on..After a series of events..with which i am sure most all of you are familliar (GD/ thyroid storms)..my fiancee was diagnosed with graves..and he is a 25 year old male..it was a very long process and very hard on our relationship as his family thought he was on drugs..which is why he lost the weight (in there eyes)..I was the only person in his life that knew this was something else..as i am in nursing..to the point that i begged him un-insured to see a DR and I paid for it..not ot mention his family looked at me as if i were the niave girlfriend..it was very hard on me because here i am the only support system he had and dealing with his moods and irrational behavior..he lost his job due to his moodiness..we lost our house because i couldnt afford the morgage and everything else..so that made it harder because he didnt have insurance..but luckly enough a friend of mine pulled some strings after i finally opened up to her a bit..thats it in a nutshell. Now here we are 7months into treatment and diagnosis.. (hes working yay! and we got a new home that i can afford if he gets sick again)..he actually when his storm came along he lost 20lbs in like 3 months (hes 5’8 he only weighed 108 after weight loss)..and now hes gained it all back and then some.. ” title=”Cool” /> ..his bulging eyes aren’t going to change back though it seams..his DR mentioned something we could try but it may not work..but it doesn’t bother me..so now that the physical part is being treated what is there for the emotional part? It seems as if his moods still do change and when they do he is very unkind..like hell say something mean and then 2seconds later an apology fallows..or hell be in a bad mood for a day or two hours and then hell snap back and be happy again or whatever..now in the past these moods (his untreated GD) they would last for days or weeks ..and the arguments are just irrational..but at least he snaps back faster than before..My question is treated is the irrational behavior or moodiness something that doesn’t change with the meds the methimazole? We are engaged and of course both still willing..but we have realized that his mood swings (they don’t happened everyday but when they do)..its just so hard..and reading your stories is so helpful..and of course his family thanked me in a way for not giving up..but they think hes fully back to the way he was before the storm..and him and i know that hes not..and we both thought he would be..his DR doesn’t seam to know enough..we haven’t read any books we don’t really know much at all! But any advice would be great! Sorry this is so long!
Thanks Again

[j_rush]

#1070277

Lol!
I am in your husband’s position. I just recently got diagnosed. My girlfriend is upset with me as well. She worries that I will be unable to hold a good job when I am out of college next year. BLESS YOU! BLESS YOU! i cannot say that enough, you are sticking with him and supporting him, please give my girlfriend a little of what you have. I am getting no support from her, and I swear if I didn’t have that stress, i would feel 100 times better.
Keep supporting him, realize that you love him, he has a disease. If a diabetic had out of whack blood sugar, we wouldn’t be mad if they acted erratically. But people tend to blame grave’s patients.
It is never easy, but hey, if that’s the worst you have to deal with, id say that it isn’t so bad.
bless you, you are an angel for supporting him.
Keep it up!,
Justin

[Sue_Conard]

#1070278

This is the first time I’ve ever posted to this site, but I’ve been on-line lurking for a few months. I was diagnosed last October, after wrecking my husband’s car with double vision, and I’m currently back in hyperthyroidism. I’ve gone from hyper to hypo and now I’m back with this monster to fight again daily. All I can contribute to this site is that I’ve been married for 30 yrs. and there are days that my husband doesn’t know who I am and I can’t tell you who I am. I cry for no known reason, I’m like a yo-yo, just waiting to go up and then down again. The fatigue is overwhelming, the muscle & joint aches make me feel 90 yrs. old (actually I think some 90 yrs. old people feel better than me).
What I can contribute is that those of you that stand-by us with this monsterous disease that you love, GOD BLESS YOU! This is a horrible monster to fight by yourself and it requires the patience of a saint to be on your side and WE THANK YOU! Gotta go, my own personal "summer" is coming on again…thanks for listening to me too!!

[j_rush]

#1070279

Sue Conard wrote:This is the first time I’ve ever posted to this site, but I’ve been on-line lurking for a few months.

I think we need more people that will step out of the shadows and become participants. I applaud you for coming out of your lurk! ” title=”Very Happy” />
In my mind, a big issue facing grave’s sufferers is credibility. we do no appear to be ill. I think the more people that stand up, tell their story, and raise awareness, the more credible we will be.
I encourage everyone reading these boards to post your story, i bet you would feel fabulous afterward!
Thanks,
Justin

p.s. I’m willing to give up my soap box now

[Sue_Conard]

#1070280

I agree Justin…it took me a while, but it felt good. ” title=”Very Happy” /> I’ve read so many different "posts", only to sit here and say to myself "yep, that’s me". So many times people have said that I don’t appear to have "Graves", even my Graves dr. says the same thing. He’s told me on several occassions that I fall into that "subset" of Graves patients that no one would ever guess…but I do and I’m grateful to be surrounded with friends that are interested in how this affects my every day life. I find myself, most days, getting out of bed and it’s a struggle to put one foot in front of the other and function with all the different challenges life presents to us. Thanks for your support…

[j_rush]

#1070281

I hear you. I’m not a person that cries, but I come on here, and i read short messages from people on here, and it makes me feel that things will be okay. I find myself constantly choking back tears and fighting my stomach down out of my throat. I know that I haven’t been here long, just today as a matter of fact, but this forum has helped me so much already. I have a voice. Now people can hear me, i am not just some anonymous statistic anymore.
for weeks I have been struggling, making excuses, being overly critical of myself, now I can make the decision to say "i have a disease, and I don’t need to make excuses for it or apologize for it."
okay okay, I’m a big softy, like an M&M that was left out in the sun, hard on the outside, squishy and sweet on the inside! and i feel like I’m being overly dramatic, but this is really how I feel, I am so touched by everything here.
Thanks,
Melty M&M

[Ski]

#1070282

” title=”Very Happy” /> Oh, it does my heart good to see all this support!!

I just wanted to add that the emotional problems DO subside over time, there IS a light at the end of the tunnel. The problem is that it’s not as easy as regaining normal thyroid hormone levels and then BAM, all better.

Hyperthyroidism affects literally every cell in the body, and left unchecked it can potentially cause damage in every cell in the body. So, once the thyroid hormone levels are normal, and stable for a period of time, THEN the body can BEGIN healing. It’s like a hurricane passing through ~ after the wind dies down and the rain stops, is everything okay? Why NO, the car is still in the palm tree and the house windows are all broken. Roughly put, if you were hyperthyroid for, say, six months before your diagnosis, it could easily take six months AFTER your levels are normal and stable for you to feel "normal." That doesn’t mean you’re miserable all that time ~ you’re always heading in the right direction, better all the time, closer every minute ~ but people around you should be prepared for that kind of time before you can go back to life "as usual."

The emotional changes are the toughest to manage, I think. I’ve always liked Jake’s favorite method for dealing with what we call "Graves’ Rage." He would find himself in the midst of a rage (literally, it comes on like a freight train), and he would change what he was yelling, to "I LOVE YOU! I DON’T WANT TO YELL AT YOU! PLEASE UNDERSTAND I CAN’T HELP THIS!" In addition to putting the focus in the right place, sometimes it just broke everyone up to see that apoplectic face saying "I LOVE YOU." Have talks about these episodes (when they’re not happening that moment), and see if you can decide upon some "safe word" to say so that everyone knows the difference between times when the person is actually upset about something, and when the Graves’ Rage has begun. I think that’s another complication ~ once people understand we have this "Rage," they sometimes believe they can dismiss ANY emotional comment.

It’s all very complicated. Anyone who gets to the other side right alongside us deserves a medal. ” title=”Very Happy” />

[hyperm]

#1070283

Hey there,

Just reading your post makes me think of my home situation but in reverse I am the one with GD and my hubby has been very supportive but in the process a casualty to the stranger I have become with this disease. I don’t even think I can look back to my old posts at the moment at the early stages after my thyroid storm.
I was diagnosed 4 years ago after my first little boy and I actually had blurred vision with rage..It was a COMPLETE personality change. Where I would normally never utter a word to offend someone even someone who has taken me down I turned into jack Nicholson from the shinning. It was horrific. My hubby really thought I had some mental health issue and I began to think (also as a health professional) that I had a tumour on my brain.

The events that took place then were mild to after the TS. I really thought that I was either going to damage my husband but more so myself. Not being this to come across as complacent but normally I would be described as placid, gentle, compassionate and very patient and tolerant well at that stage in my life I was none of those I was a fiend. I was so crabby towards my kids especially me eldest then would burst into tears with the guilt…it was awful. My endo was fantastic and said that yes I was going off my head as my levels were horrific. He even told another of his patients about me who was newly diagnosed…saying that during my pregnancy I was very placid and good natured and then woooooossssssssssss! I went crazy. he highlighted that the divorce rate in couples with one having GD is very high… ” title=”Sad” />

I can understand how you feel as I know that my hubby has scars. The last week I think my bloods have went off again slightly as I can feel the mood swings starting however…. I am more in control. it is indeed a very difficult situation living with someone with thyroidism. My sister has had it since she was 13 and some days our family like came to a standstill as she (again very soft and gentle nature and is so again thanks to having the op ” title=”Very Happy” /> ) either put the house up in the air or went for one of us physically. It wasn’t a nice time at all in our household ” title=”Sad” />

All I can say is that it will get better. I have posted often on here at the ends of dispair and these guys and by the Hand of God have brought me through it. mamabear has some hysterical stories.

I genuinely would have faced the devil and won after my TS – no one could get in my way. Now yes I have my off days as a combination of high levels, fatigue, trying to cope with kids a house and a hubby but it is so much better than before.

Hang in there and it would do no harm in getting your partner to come on here – we need more male support on here for the guys

Take care
m xx

[j_rush]

#1070284

No matter what happens in my relationship, I stand resolute to stay the course of treatment. I also know now that i am in a position to help people in the future. If our relationship can endure this trial, then we will be a beacon of hope for others, much like you and your husband. If our relationship ends, I know that I will have a testimonial to the doubting significant other, I will be a testimonial to how things can go terribly wrong. Either way, I fully intend to help those who have grave’s, and their loved ones in the future.
Thanks,
Justin

[bnspencer]

#1070285

Reading your posts has given me hope… My daughter is almost 15, and was diagnosed with Graves back in March. It has been a very rocky road. I think she has had it since the middle of last summer. She has been on and off beta blackers. The doctor wouldn’t give her anti-thyroid meds because her liver counts were off… so she had a radioactive iodine treatment in May. We don’t think it was enough… she’s still hyper, symptomatic– and her counts aren’t moving. The doctors are giving her a second dose Monday/Tuesday. She is having SEVERE mood swings, depression, and at times almost bi-polar episodes. We are also taking her to a counselor Monday. I was talking to Allie tonight… letting her know we would get through this… that she will get better… and feel better. She was worried- what if this changed her forever- and she never gets better. I did my best to reassure her that she will get better. It has helped me to read that other people have had the mood swings and rage. She will get so angry and upset- and feel terrible about acting like that after. Every now and then I can still get a glimpse of my sweet kid… and it helps keep me going. I guess reading the posts here has reassured me too– other people have had this- and it does get better. Thank you. Its SO hard watching someone you love with every ounce of your being go through what she has to go through. I feel so helpless– I can’t do anything to help her or fix her.
Take care of yourselves… and stay strong…
-Nikki ” title=”Smile” />

[Ski]

#1070286

The RAI may not show signs of obviously working for six weeks or more ~ not sure if you want to jump into a second dose this quickly. It can take six weeks just for the excess thyroid hormone to leave her bloodstream ~ the excess that was in her body on the day of RAI ~ so it’s extremely rare to see a hypo result this soon anyway. I realize that we want everything to be fixed yesterday, but speak frankly with ALL of your daughter’s doctors (GP, endo, radiologist) to make sure you’re giving the first RAI a chance to work. My dosing doctor told me that it does the bulk of its work in the first six weeks, but still continues to work on the thyroid for up to six months. You are in a spot, not being able to use ATDs, but this second dose of RAI would also need time to work, so you may want to just buckle in and wait a little longer to see if her levels begin to drop.

The symptoms will not magically disappear once her levels hit normal ranges, by the way. Once her levels are normal, and stable, then her body will begin to heal. Each day is a tiny, tiny bit better than the last. It’s not a radical shift from one day illness to the next day wellness.

Her situation is doubly complicated because of her age ~ reproductive hormones are wacky, and they affect thyroid hormones, though I don’t think we have a clear picture of how. Most of us women notice an increase in symptoms around our cycle, and in puberty/adolescence there’s just no telling what may happen next.

Please let us know how you are all doing through the process!

[bnspencer]

#1070287

The first couple of weeks her T3 (I think) was around 870. After treatment it has dropped to 350… but has stayed there for 4 weeks, and her TSH is still below .01. Her uptake was almost 78%, so the doctor (nuclear med) said she falls into the category that may need a second dose. She is having HUGE emotional swings, irritability, rage, depression, anxiety/anxiety attacks– well beyond what would be normal for a teenager. I don’t know if there is a way help her with the anxiety and depression??? Her pediatric endocrinologist is sending her to a child psychiatrist to hopefully help her with her emotional symptoms. She was a very active kid before this. She played competitve travel fast-pitch (she was a pitcher), played basketball, etc. Now she has to just sit and watch. It’s driving her crazy… Her pulse rate has gotten a little better. It was running 125-130 just sitting on the couch watching tv…on the beta blockers. Now it’s down to 110-120 sitting…on the beta blockers. They started her on the Propranalol– 5mg 1x day- but it made her light headed to the point of passing out– but it helped a lot more with the anxiety than what she’s on now. Now they have her on Atenelol 50mg 1x day. On top of that– there is the fatigue, aches, weakness, and some weight gain (prob 20-25 lbs). She’s been on a rollercoaster- both emotionally and physically. Do you have any advice on how to help her with the emotional symptoms? Or what to ask the doctor Monday?
Thanks for all your help!
-Nikki

[Ski]

#1070288

TSH responds slowly ~ it can take a few weeks to "catch up" and correctly balance the T4/T3 levels ~ so it’s not surprising that it’s still suppressed.

All the emotional issues are VERY common for all of us ~ that’s why I say buckle in, this is definitely a tough ride. Some people get help from antidepressants, but that can be tricky too. It can be very personal (which antidepressant works well for someone), and it can also take a few weeks to fully take effect in the patient, so again, something to talk over carefully with all of her physicians. If it helps, it’ll be a godsend for all of you. If it doesn’t, it’s just one more complication. It’s worth trying, I feel for you COMPLETELY ~ having a teenage Graves’ patient earns you a very large medal.

Please do not treat her as though the emotional outbursts are something she should be able to control all by herself. She can’t. It’s chemical, it is largely out of her control for now. Things ought to ease up as her levels improve, but again, no magic moment when she will go from ill to well. In the meantime, try and find things that she enjoys, that she is able to do, and focus on those things. Perhaps she’s been meaning to read something, or would like to paint, or play an instrument. Things that will get her out of herself and yet don’t overstress her body right now. I think of them as things that "feed our soul."

Give her some breathing room, and let her set her own pace for a little while. Every little piece of relaxing she can do is golden, and will help her body get through this. If she can’t play sports with her friends, invite those friends over for some movie-watching after the sports are done. Keep her connected, that’s important too.

When I was hyperthyroid, I was amazed at how angry I could get, over nothing. In hindsight, after the rage left me, I would wonder what the big deal was. It’s literally like a freight train taking over our body, and it can be scary for us too.

Just take it easy, take it slow. Nothing will happen quickly, but you’re well on the way, so look for small improvements in each day. If she yelled at a volume level one decibel lower today, celebrate. ” title=”Wink” />

[bnspencer]

#1070289

Well, after another trip to Syracuse, they’ve decided she’s still hyper and needs a second dose of the RI. We go next week for the dose. We also saw someone about the moods she’s been having- and she was diagnosed with rapid cycling bipolar from the Graves. The doctor put her on Abilify 2mg for a couple of months to help with the symptoms. The last few days have been pretty good… Thanks so much for all your advice… it’s really helped…
-Nikki ” title=”Very Happy” />

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