[Madame_X]

#1071495

Maybe I can help.

Could be she sincerely did forget — forgetfulness is more or less part of Graves — in which case she should start writing down in a date runner, a TO DO book, Outlook or an Ipod (whatever she wants to use) when to do what and how.

Date runners and other timekeeping materials are handy for everyone, Graves or not.” title=”Smile” />

It could also be that she isn’t keen on wanting to be diligent about having her bloodwork and such done. In that case, not such good news.

She could be hiding out in dorm and missing classes due to a lot of reasons: fatigue or depression could be two reasons.

I hope somebody is able to sit down and speak with her about how she’s feeling and about the other problems she’s having. Maybe her doc or some other objective third party can help — some people may object to a parent or spouse or SO doing so — they may get resentful and think the parent or spouse or SO is trying to "boss" them or control their lives.

Good luck with this issue. You’re very worried and rightfully so. Graves can be tough to live with — I have days where I have no energy and days where I pretty much don’t feel like doing anything or talking to anyone.

[catsmum]

#1071496

Hi Concerned mama,

You have my total understanding. It is so scary when your kids are unwell. My daughter was diagonsed Christmas Eve. She’s 17 & taking her A-levels (like your high school diploma, I think) & due to go to University in september.
She too was on beta-blockers along with block & replace meds. I’m fortunate that she is still at home & I can keep an eye on her but forgetfulness is still an issue, even when she takes her meds. We’ve bought a weekly meds container marked with days of the week & she fills it up (easier now she’s on less pills – it was 18 a day at first!) By using this I can tell if she remebered her meds before going to school or not. Also, we set a reminder on her cell phone in case she forgets.
I do worry about when she goes off to uni in the fall. Who will be there to remind her then? Hopefully once her levels are sorted out the forgetfulness will go. She too has gone from being a grade A student to struggling to cope with work in class, mainly because she is unable to concentrate & has ‘brain fog’. She is also very tired, irritable & moody so I can appreciate how you feel with your daughter when she gets irritated. It is so difficult at this age when they strive to be independant & we are still struggling with the fact that our beautiful baby girls are becoming young women who are responsible for themselves.
You are clearly being a great support to your daughter, although she may not show her appreciation of that right now. Hang in there & keep talking to her. It’s hard not to nag, my daughter says I worry about the illness more than she does which is probably true. However, youngsters tend to think they are immortal at this age & can be a bit careless with their health so we need to look out for them. Just keep talking to her, keep communicating. Is there a student counselling service at college? Maybe your daughter could talk to someone there. It can be useful to speak to someone who is not emotionally involved. I spoke to my daughter’s teachers quietly about the illness & keep them informed on how she’s doing. This way they can offer her support when needed & understand why she may be struggling.
Please don’t forget to look after yourself as well as your daughter.
Take care,
W x

[concerned_mama]

#1019414

My daughter…20-year-old college junior was diagnosed with GD last November 08 Coxsackie (sp) virus brought her to college infirmary and observant nurse questioned swollen neck. And the saga began. She has been on thyroid meds since Thanksgiving and beta-blocker…but I don’t believe she is compliant. We know thyroid levels were normal in 12/06 because blood work was done because of swollen lymph nodes. Biopsy and tonsil removal confirmed no lymphoma disease. I think this was the beginning of GD because she struggled academically her sophomore year and this year has been a blowout. As I search for a way to help her I get quite scared. They now have placed her on anti-depressants. This is a young woman who had the world by the tail…a high achiever, open and caring. She has hidden out in her dorm, missed too many classes to make up and can only answer….”I don’t know what is the matter”. They figure GD was going on sometime (over a year at least) because of her levels…each symptom by itself, got explained away by me…. Foolish mother…. Shaky hands…eat more protein, sleepy or sleepless…. Establish a routine…racing thoughts or lack of focus… too much caffeine…Grave’s diagnosis gave us a plausible explanation…I’m not sure what is at play…. But when she joined me on winter break I noticed lack of diligence in taking meds…3x day I’m told usually only has about 30% compliance. She had blood work today and I expect to see elevation greater than Feb. readings. Dr. ordered labs at 6 weeks but she “forgot”. I know she needs to own this but I’m sure you can also appreciate how scared a mother can be. I believe that depression is at play but not so sure that it is GD based. Her coping mechanism is to lie to say everything is fine but when confronted with the illogical actions, she get infuriated and isolated. Sorry for the rambling…. Does it make sense to kill the thyroid to remove one aspect of the behavioral/personality change so treatment can be identified and begun on other presenting personality and emotional issues??? I would appreciate you view on the radioactive treatment…consequences etc.
Can one be taking meds and still have confusion, mood swings etc?? I again apologize for rambling. It’s hard to focus at what is at play while I watch her concentrate so much energy in trying to look as if everything is OK and not succeeding. She always says things will be taken care of tomorrow!! ANY suggestions or guidance from your perspective as someone with GD or a family member of one afflicted would hopefully help calm my innards or focus my determination to get her help while all the while realizing she must want to be helped. Thank you

[Buttamama28]

#1071497

Hi, just thought I would give a lil insight as the daughter in college.

I was in my second semester of my freshman year when I noticed things weren’t really right. No one really knew to think it was a health issue; so it’s good you guys have found part of the problem- her Graves’. I got very discouraged when I would join study groups or spend hours on studying and assignments; then fail. I couldn’t understand why I kept completely going BLANK!

Spring of my sophomore year I dropped out because it just became to hard. I got really sick- depression is an understatement. I didn’t take very good care of myself to say the least. And because I was somewhat embarrassed my family had no clue that I was going through any of this.

So, continue to stay on her. Make sure she gets the care she needs. Family is key and the most important at these times. Whether she believes it or not.
Buttamama

[Kimberly]

#1071498

Hello,

I don’t have kids, but I think the key is to get to the root cause of your daughter’s non-compliance. Others have mentioned simple forgetfulness and have suggested solutions.

Another option might be that your daughter isn’t compliant because she believes the treatment is making her feel WORSE. My Graves was caught at a fairly early stage about 18 months ago. My levels fell FAST once I started ATDs — and the worst that I’ve felt during this whole experience (even pre-diagnosis) was the first 10 weeks after I started the meds, while my levels were falling.

Maybe it would be helpful if you could have someone (doctor, another Graves patient, etc.) explain to your daughter (1) the serious consequences of remaining hyperthyroid and (2) that things eventually *will* get better.

Best of luck!

[ely2009]

#1071499

Kimberly – Interesting that you say you felt worse after your Dx during your first 10 weeks of treatment. That’s how I feel – although I did have some improvement after about week 3. Now it seems to be down hill again. It is frustrating to continue to take meds when you don’t feel progress.

Emily

[mamabear]

#1071500

Her actions seem GD related. This disease can surely change a person. Is there a way for her to have an alarm on her cell phone or if she uses an email system/calendar system that goes on her cell phone she can get 3 reminders a day for it so she doesn’t forget. DON’T tell her that it’s so she doesn’t forget. TELL her it’s so she remembers. I know it seems silly to do that but when someone has a problem with forgetfulness like gd patients and people like my son and myself who have short term memory issues (not GD related) it helps for us to hear remember rather than dont forget.

Have you or the dr. explained to her that this is from the graves disease and as long as she is taking the meds it will help her.

I fear that if she isn’t being compliant with the meds right now due to her gd which from what you are saying seems to be from the gd (mood changes, forgetfulness and depression), than destroying her thyroid completely where she will have to take meds for Hypothyroid (once you do RAI you become hypo), she wont take those meds either. You need to talk to her and go with her when she goes for her dr’s apt.. Again tell her it isn’t because you feel that she isn’t doing what she has to. TELL Her that you want to make sure the dr. is doing everything then can for her and you want to make sure that no one is screwing around with her health. By saying things like that you are looked at as the hero or more like the mother who will kick the dr’s butt if he doesn’t treat her baby right. Some kids enjoy that ! You certainly don’t want her to feel that you are thinking she’s being a brat and not doing what she should. I say that because her mind set might be "screw it I dont care" and that isn’t her usual attitude so it’s most likely the gd talking.

As far as school is concerned is there someone you can speak to about this. Graves disease is a serious condition and this isn’t her fault at all. This is a medical condition that is proved by her dr. that she has it so the school might be able to take that into consideration. Make sure you document all of this so that if push comes to shove you have it available to show anyone in case they are trying to say she can’t go to the next grade.

This isn’t your fault. You didn’t know that the symptoms were related. You can help her by getting things that she would normally do for herself but can’t right now done. Like documenting things and speaking with the school. Since I am sure you are fitting the bill for her school or a portion of it, you have a right to make sure that they know and understand what is going on with her.

Good luck and keep us posted.

[Kimberly]

#1071501

ely2009 wrote:Kimberly – Interesting that you say you felt worse after your Dx during your first 10 weeks of treatment. That’s how I feel – although I did have some improvement after about week 3. Now it seems to be down hill again. It is frustrating to continue to take meds when you don’t feel progress.

Emily

Hi Emily – I was actually overdosed by an endo who was solely relying on TSH at the time I was diagnosed. I think I would have turned the corner a lot sooner in terms of feeling better if my dose had been reduced in accordance with my Free T4 and Free T3.

That’s why it’s so important for us to stay on top of our bloodwork and ask questions if the doctor’s advice doesn’t seem right. In fact, that’s probably a good excuse for "concerned mama" to sit in on her daughter’s doctor’s appointments.

It does get better. I wouldn’t say I’m 100%, but I did test yesterday for a Green Belt in Youn Wha Ryu (and passed). A year and a half ago, I was spending my Saturdays sleeping all day. ” title=”Smile” />

[concerned_mama]

#1071502

Thank you all for your replies. We had an appt. with her regular doctor. This was at my urging and thought she would open up. She wanted me in the room but really she just glossed over things and claimed she is taking all meds as directed. Interestingly, she traveled 1 ½ hours to get here and didn’t bring any meds with her incase of delay returning to campus. She doesn’t go to the Endo until 6/1/09. We weren’t able to learn what her levels were from lab work last Thursday. They were sent to the Endo and our Family Dr.. couldn’t access them while we were there. I am pushy but you can’t push when my daughter is 20.They will not generally talk to the parent under the circumstances. Dr. today stated he didn’t believe these issues were related to GD. He’s the one who had prescribed the lexapro. My daughter says she is fine…but Dad and I noticed the tremors right off. I think that maybe she can’t even recall ever feeling any better. But for now I need to TRY to back off. I really appreciate the suggestions to change the way I pose an issue with her. She will be home from college later this week. I’m sure neither one of us is looking forward to that!!
I am so glad I found this site. I hesitate to share it with her, because she doesn’t want me discussing her. Says she doesn’t want people looking at her differently. She is almost tyrannical…she wasn’t like that before…But again it is hard to sort out all that is at play. I had thought if she had RAI it would remove the thyroid issues from the equation, but from this site and others it seems clear that is not the panacea either. That surprised me. So many lay people with little knowledge of GD claimed, “Oh get the RAI and then all you need to do is take one pill a day." I have learned that it is not so simple. Thank you again for answering and sharing. I will stay tuned and chime in again.

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