Viewing 15 posts - 1 through 15 (of 16 total)
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  • Bobbi
    Participant
    Post count: 1324

    My heart goes out to you: it is difficult enough to deal with this disease as a patient; having an adolescent daughter with these huge problems has to be equally as hard.

    I’m not sure what you can do at this point. A second opinion is always a possibility, if only to set your mind at ease. Is your daughter compliant about the meds — taking them as prescribed? It is unusual for the meds not to work to control thyroid hormone production. If your daughter is taking them as prescribed, then doing something else is absolutely required. Hyperthyroidism, left undertreated, will ruin her long-term health.

    If she is not cooperative with you, you might want to consider getting an outside counselor to work with her. Sometimes our children will listen more to someone else, than they will to us.

    graves_mom
    Participant
    Post count: 5

    Hi Bobbi,

    Thanks for the reply. I don’t believe she has been compliant with her meds. I don’t think it is intentional, I think between pills 3x daily and the diabetes regiment, she is not capable of complying. I also found it interesting through other postings about stress causing the symptoms to increase. Beginning college I am sure was greatly stressful. Is there medications that can deal with the psychological symptoms to get her through until the graves can be dealt with in a permanent way or will that just muddy the water. Right now she keeps threatening to move out even though she is not capable of caring for herself. I have not been able to get her in to see a psychiatrist. They schedule appointments 4-5 weeks out and her life is so volitale, she cannot plan that far out.

    Sorry for sounding so desperate, but I am.

    Graves Mom

    cathycnm
    Participant
    Post count: 284

    Graves mom – Wow – it sounds like your daughter has lots of reasons to feel helpless and out of control when it is prime time for her to be developing autonomy and identity.

    If you have a Mental Health Center in your area, I would suggest you call them. There are lots of folks in the system other than MDs who can do an intake and start a treatment plan. If needed, they can often get folks into a psychiatrist or nurse practioner (who can prescribe meds) sooner than 6 weeks. I would call and see if they have emergency slots – as her non-compliance is a huge health issue and it does represent a threat to self.

    I am on the board of our local mental health center – and they see all pay scales, etc. They have a variety of different health professionals on staff. So – it is worth a call to see if they can help or can refer you to someone.

    Outside of that – what do you see as your daughter’s strengths? If you can help her identify these and use these to get her more involved with her care – that is often engaging. It sounds like there is lots of negativity and disengagement going on – stress, etc. There is some good research that says we broaden and build new resources primarily when our environment has at least 3 positive emotions for every negative. It may sound trite – but I would say anything you can do to think about times when things were better with your daughter – and ways to create that – might be a start. Let us know how it goes! Cathy <img decoding=” title=”Neutral” />

    amyl
    Participant
    Post count: 71

    Hi,
    I’m very new to this forum so please remember that when reading my reply. My daughter does not have Graves but she does have other medical problems. She too flunked out of college and blamed all of her problems on my husband and I. She stopped taking all of her meds which was very scary. She became so intolerable, that we finally told her to move out. She has since improved and is back living at home. With the new HIPPA laws, it’s very dificult for parents to get their children medical help if they don’t want it. Please know that you can always take your daughter to an emergency room if you think she’s in danger emotionally. They can also help you find inpatient and/or outpatient programs that can be helpful.
    Being a parent is a very difficult job. I wish you the best in finding help for your daughter!
    Amy

    Bobbi
    Participant
    Post count: 1324

    Since she has to take the meds three times a day, it seems she is probably on PTU. There is another antithyroid drug called methimazole (brand name Tapazole) which usually only needs to be taken once a day. You might consider asking the endo whether a switch to the other drug would be appropriate, given your doubts about compliance.

    Stress does add to issues, typically. And we have seen lots of people throughout the years of this board using anti-depressant type drugs to help them through the difficulties. Those are, however, most effectively administered by psychiatrists. You need to have someone who can carefully evaluate the impact of the suggested medication on the diabetes medications, and the thyroid drugs. It is not necessarily a simple issue. And, it is entirely possible that simply getting the thyroid well and truly under control would be the most helpful first step.

    One additional thought comes to mind. I was reminded a few minutes ago about what I consider the psychological "pathology" of adolescence — i.e. that they tend not to have good perspective. They think that what "is" is permanent, without being able to put things into a broader context. So, one thing that you might be able to do to help your daughter through this rough patch is to let her know that you realize the disease is making her feel very sick indeed, but that she got through it once and got well again, and that one way or another, there IS a way for her to get through it this time, too, and get back to health. She may need some fairly constant reminding that despite the fact that hyperthyroidism makes us very sick indeed, it is very treatable.

    graves_mom
    Participant
    Post count: 5

    Hi all,

    I am new here. My daughter has been battling Graves for 6 years. She was in remission once but is now out of control again. She also has Type 1 diabetes. She is an emotional wreck. I don’t know if she realizes how bad she is. I don’t know how much more my husband and I and well as her two sisters can take. She hates us, blames us for everything going wrong. She has just flunked her first semester of college and refuses to discuss what she should do next. We are contemplating RAI as the medication is not working for her, but I am so afraid that won’t work either. I am starting to lose confidence with her doctor and wonder at what point should we get a second opinion. How do we deal with the emotional roller coaster?

    Graves Mom

    KAM
    Participant
    Post count: 26

    Hi,
    My wife has Graves and we also have three kids, one a sophomore in college, one a senior in high school, and one a sophomore in high school. My wife and I were talking just last night as our oldest left to go back to campus for the spring simester. We were talking about how much pressure young people are under to live the ultimate college life. You might try doing a google search for eomotions enonymous, it is a 12 step support group and see if there is an active group in your area. If not purhaps look into an Al-ateen group. They are both places where she could go and say what is on her mind without feeling judgement. Our son stuggled a bit last simester for the first time in his life. There is an active SOBER group on campus that I hope he will tap into but that is in his hands. Is she willing to look at different schools? Maybe go to a two year school to do her generals, get an Associates Dergree and transfer back to a four year school. Maybe look at a technical college with a shorter degree program. A four year libirel arts degree isn’t for everybody. The long and short of it is that todays young Gen X people are really up against it. It isn’t good enough to go out and just do something or be yourself. It has to be X Game flips and dips and over the top live life to the fullest…… Before he left our son mentioned that it was nice to hear that we didn’t expect that out of him. It is hard enough staying positive as a 47 year old dad that isn’t expected to do anything yet along to be a young person in a world where you are supposed to do everything. Best wishes and like Red Green says, " I’m pulling for yah, we’re all in this thing together".

    LaurelM
    Participant
    Post count: 216

    Her school may also have some resources available. They may have a disability services office that could assist with accomodations. I became aware of this through a cousin who attended the same school as I did and needed accomodations for a different disease. The university I attended also had counseling services available on campus. Perhaps a reduced class load for a semester would be good; maybe taking only one class for a quarter/semester would help while she stabilizes or perhaps a leave of absense is possible if necessary.

    KAM
    Participant
    Post count: 26

    Kam here again. I would like to clarify my earlier post. You asked how you could be more supportive and I rattled off a bunch of stuff that you already know and have done. As I mentioned my wife has Graves and we have three teenagers. Dealing with both can be very frustrating, you are a saint to be dealing with them together. As a spouse I fully understand having some one you love very deeply show such hatred back towards you. If ever there was a disease that could use a 12 step program it’s Graves. There is a 12 step program for every thing else under the sun. Unfortunately there isn’t one for this so we must make due with what we have. Some times I think I enable the Graves too much so I will stand my ground, if you will, only to have to butt handed to me. It gets pretty old after a while. Some how you have to be able to talk about the white elephant (Graves)in the room without them interpretting it as their fault. Good luck. Therapy is good but you really have to search to find some one that understands Graves. There are many good books about how human emotions work. This is an emotional disease. A really good book that helped me a lot is The Four Agreements by Don Miguel. It is not about Graves but it pretty much sums up what living with Graves is about. Kam

    Ski
    Participant
    Post count: 1569

    The most important thing to realize is that there are two reasons we get emotional ~ one is simply desperation, frustration, and exhaustion. The other is a very real chemical imbalance. One we can "talk through," the other we cannot. The only thing that will cure the chemical imbalance is to bring our body chemicals back into balance. In the meantime, if everyone (including ourselves) understands that we can’t just "suck it up and act better," it’s helpful.

    As I’ve mentioned before, my emotional outbursts came on like a freight train ~ I could handle a lot of things throughout the day, but at some point on some days I would simply LOSE it and go off into a snarling, spitting tirade. I could no more stop it than I could stop having skin.

    Family members take the brunt, but co-workers could get caught in the crossfire just as easily.

    TRY not to take it personally. I know that’s easier said than done.

    grekson
    Participant
    Post count: 42

    I have just been diagnosed with hyperthyroid and am on methimizole.I live with my mom and I am a bit neurotic like your daughter.My ths is .006 and I can’t sleep without additional medication.I am 37 now have been hyperthyroidic for a few months.I do need help.I am intrested in other kinds of treatments.I am sorry about your situuation with daughter.My mom has to put up with this too although I don’t specifically blame her for any disease.

    babs
    Participant
    Post count: 10

    Grave’s mom – I just sent you a private message as we are dealing with the very same situation!

    My nineteen year old also has both Type 1 diabetes and Grave’s disease. While the advice here has been good so far, I really have found noone yet – endocrinologists included – who really understands the impact of having these diseases together – how hyperthyroidism impacts blood sugar control, how thyroid meds affects insulin absorption, etc, etc. Having these two diseases together impacts the sufferer exponentially – and advice for someone dealing with Grave’s alone might not be exactly on target. Maybe we could start a message board for those who are dealing with both diseases?

    graves_mom
    Participant
    Post count: 5

    Thanks for all your responses to my original post.

    We are scheduled for surgery on May 4. If I wasn’t so desperate, I’d be more worried. The endo/thyroid specialist recommended surgery over RAI because of the size of her thyroid. They are doing a partial removal and was shocked when the surgeon told us that there is a chance of regrowth to cause another full blown graves disease again!! Yikes.

    She has been med compliant since Feb so many of the symptoms have been better. We began family counseling which seems to be helping. She has a lot of anger towards me, but I guess that is par for the course. Someone needs to be blamed.

    Has anyone out there heard of this regrowth? And what can we expect after surgery?

    Graves Mom

    Ski
    Participant
    Post count: 1569

    I have heard of thyroid tissue regenerating, but I also understand that it is VERY rare. At least you’ll know what to look for, if symptoms begin, and you’ll also be monitoring her thyroid hormone levels so you should get a quick heads-up if that’s going to be a concern for you. Typically all thyroidectomies are "partial," just because the parathyroids are attached to the "wingtips" of the thyroid, and they regulate our calcium, so they like to leave that portion alone and have less risk of calcium issues following the surgery. I don’t think they leave any appreciable amount of thyroid tissue. Still, as they are required to tell you, it is theoretically possible for some tissue to regenerate. Magical. <img decoding=” title=”Very Happy” />

    There are plenty of people here who have had the surgery, and they’ll be able to answer the questions about what happens after better than I will. I think there’s usually just one night in the hospital, a restriction on lifting for a while, and other typical surgical recovery issues (being tired, pain, etc.). Since with surgery you know that the thyroid is gone completely right away, typically they’ll start the patient on thyroid hormone replacement immediately. Other than that, I’ll let those who really know weigh in. <img decoding=” title=”Wink” />

    hyperm
    Participant
    Post count: 435

    Hi there,

    Just wanted to add that my sis had 3/4 of her glad removed around 9 years ago and she has had re-growth ( a large gotier yet again), her endo said though that it is very unlikely they will offer surgery again due to risks of going in at an old wound site. . I gather you are in the states? In the uk they don’t offer partial removals any more but only full thyroidectomy due to re-growth or other issues.

    I would ask your daughters surgeon why they are only offering a partial removal as I would have thought that the US would have similar research as the UK.

    Hope she is feeling better.
    M xx

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