[NicknNatesMommy]

#1019826

I was just recently diagnosed with Graves and I’m a little freaked out. My Dr. has started me on a blood pressure and thyroid meds but is planning on starting RAI in about a month depending on my blood work. I have been a little moody and depressed but nothing horrible. My worst symptoms are extremely achy and weak leg muscles and feeling fatigued almost all the time. My whole body hurts some days and some days I want to crawl into bed and cry. I get tired so easily and things that I took for granted like walking in the mall or taking my kids to a museum are exhausting and make me feel 100 times worse. It is so hard to fall asleep and stay asleep, I feel like I am never rested enough. I want to ask for help but my husband acts like nothing is wrong with me. I feel like a jerk when I ask to lay down for a little while. I almost think that my husband isnt taking my illness seriously. I get almost no help from him even when I ask and I am at my wits end. I feel like this is a serious illness but everyone is treating me like I have the flu. Like I should suck it up and get over it. I’ve asked my husband to go to a couple websites explaining Graves but of course he hasn’t. I feel like a whiny kid even posting this but I am feeling scared and alone. I have no idea how to make the people around me understand that I am sick and I am trying to put on a brave face but I feel really horrible 90% of the time. I don’t know what to do…

[DianneW]

#1074310

Hi, glad you’re here! You’ve definitely found some people who understand, and for me that was very helpful, because the people in my life never did really understand how ill I felt or that Graves’ Disease is something serious. I’m not sure what it would take for your husband to understand this, but you can be certain he isn’t going to guess it on his own. One of the reasons our families tend to minimize our illness is probably because it’s painful for them to think of someone they love as being seriously ill, or to think that we could even die (which isn’t likely when we’re being treated of course). It’s just easier for them to believe that if the doctor takes care of this we’ll be okay pretty soon and they don’t need to worry too much.

Part of this depends on how well you can communicate with your husband in general about your needs from him, and about your fears and about how you feel. If possible, tell him how sick and how tired you feel, and that you need extra help and rest until you’re feeling better. It probably wouldn’t be out of line to say the doctor recommended it, and if your husband will come with you to doctor’s appointments to get that information first hand, that’s even better. There are some books on our recommended reading list (on the NGDF web page) that might help him understand what you’re going through as well. I don’t know how difficult it might be to get him to read them. Not every spouse is so sensitive and considerate that help and support are given without asking, though that would be nice. I hope you will ask.

Part of the problem is that the term "thyroid problem" is a commonly used statement in public knowledge with connotations of being a minor problem, so many people automatically assume that anything to do with the thyroid is no big deal. I ran in to that problem at work when a co-worker had a goiter (without thyroid imbalance) and went on Synthroid to shrink the goiter, while at the same time I was extremely hypothyroid after being severely hyperthyroid, and unable to function at all. The supervisor took it on himself to decide I had no right to be off work because the other guy had a thyroid problem too, and he was doing fine. The supervisor even scoffed at my doctor’s excuse.

Many people do find that communication with their families leads to better understanding and eventually the support that is needed. When that doesn’t happen, talking to others on this board can be a good second best. Just about everyone here does understand what you’re going through, and can encourage you that better days are ahead.

Best wishes

[lmatthews522]

#1074311

I truly understand your fears and worries with how your spouse and family treat you since being diagnosed with Graves. I have been living with Graves and thyroid disearse for more than 12 years and there are times when I fall in and out of remission. During this time, I often feel so alone because everyone look to me as being the person that can save the world. My husband says "I don’t want to treat you like you are sick". Well sometimes I am sick and it’s not always easily seen. Wanting to take a nap because I’ve been up all night or just feeling tired, confused about basic things or headaches often become a sense of normalcy in my life.

I have tried sooooo many times to tell him I do not feel well and that it’s associated with the disease…that lasts for a day or so and then I get the same questions over again. It’s very frustrating. Don’t get me wrong…my husband loves me and tries his best to understand but I think its just a world I live in alone and often will minimize my pain. I am new to this sight as well and have found it very therapeutic.

Best wishes,

Lisa

[amyl]

#1074312

In general, my husband responds best to me when I tell him exactly what I need from him. I used to get frustrated because he couldn’t "read my mind" and just know what I wanted or needed. I’m not good at verbalizing when I need help but when I do, I get it. He has actually thanked me for telling him when I need help rather than hoping he will see that I need help. So, maybe you just need to have a very purposeful talk with your husband. Find some time alone with him and be very honest with him about your disease and the subsequent support that you need. If he still doesn’t get it, just do what you need to do and stop worrying about what he thinks. You can’t take care of anybody else until you feel well again.
Best of luck!
Amy

[NicknNatesMommy]

#1074313

Thanks so much for all your support. I actually sat down with my husband tonight and not only explained in detail what Graves was, I also told him every symptom I have. I don’t know if its being a Mom or just being a woman or the way I was raised, but I hate admitting I need help. What I wanted was for husband to just offer help but he wasn’t understanding the the small details I was giving him. He hasn’t been to the Dr. with me yet so I think that I will bring him in next time so that he can better understand what all this is about. He thanked me for finally just telling him how I felt, he was assuming that I was fine since I acted fine most of the time. A big relief has been lifted off my shoulders. I don’t feel like anyone in my life totally understands but at least I’m on my way to hopefully not feeling so alone.
DianneW I totally understand how the work stuff is. Bosses can be such jerks. I have told my supervisor that I have Graves but she had no reaction and I feel like I am going to have break out a power point presentation on Graves to make her understand. How ridiculous is that? If someone tells you they have a broken leg or cancer do you question if their symptoms are legitimate? Everyone at work who I talk to about it thinks they know someone who has a "thyroid problem" and it wasn’t a big deal. I am so sick of hearing that! Mine is a pretty big problem so stop minimizing what we all go through, ugh! I only work part time and that is my only saving grace. I can schedule most of my appointments on days off. I feel horrible for anyone who has to deal with this and work full time. I don’t know how you would be able to fit all your appointments in and go to work. Plus having a boss who is a jerk about it all? My goodness talk about stress! I hope it goes better for you DianneW!

[amyl]

#1074314

Congratulations! I’m so glad your husband is willing to be supportive…that should make this a little easier for you.
Take care!
Amy

[cathycnm]

#1074315

Hello Nick and Nates Mom – I am faculty for a college of nursing and I got the same responce. Working with a crew of nurses!!!! Angry that I took the time off to be in isolation after RAI – then angry that I could not continue to be a one person show on my satellyte campus. It was interesting that my local staff (all contract nursing faculty) were very supportive. Those who know me less well and never really work face-to-face with me were the ones who got angry. And my students got angry for a time, too – but they learned a lot about Graves to take forward with them. Everyone thought I would travel 60 miles to the larger hospital where my endo practiced and come home cured.

What was hardest for me was that other faculty facing illness, etc – one had a premie and a couple lost family members during this time – was how my boss rallied around them and had the dept donate food. For me – I got yelled at! Granted, I probably was not too fun to be around – either grouchy or crying as I bounced. But it was sad. One of my local faculty just quit – and while she had other reasons – she said it was my boss’s behavior towards me when I was sick that let her know she could not continue to work for the organization. Some see it – others do not. I think the closer they are to us, the more chance they will see it – unless they have been through it. I know I have HUGE work to do to educate nurses about this illness. Cathy ” title=”Confused” />

[DianneW]

#1074316

This thread seems to be getting lots of response, and I’d like to hear from even more people on this.

My diagnosis was nearly 13 years ago and I’m retired now, on disability related to Thyroid Eye Disease, so my supervisor and co-workers eventually did understand that my problems were more serious than they believed. I had seven reconstructive eye surgeries, including orbital decompression, while still working (have had two more since, and have at least three ahead). However, two more women at the same place of employment were subsequently diagnosed with Graves’ Disease a couple of years before I left, and treated with antithyroid drugs. They complained of being treated by the same supervisor as if they were making a big deal out of nothing, partly because they had fewer complications than mine.

For a long time I’ve wanted to find a way for the Graves’ Disease Foundation to help patients educate employers in this area, but the danger is that we could hurt more than help, if we lead employers to think people with Graves’ Disease aren’t capable of doing their jobs when they need those jobs to support their families. Many people with GD cope quite well during the months where treatment takes place and really don’t need much in the way of accommodation from the employer. This is a highly individual matter. Does anyone have ideas on how we could do this? I’m referring to developing resources that would really help patients give information to employers without causing unintended backlash.

Perhaps we could also work on developing a brochure for families of the newly diagnosed; something that we keep on this bulletin board or the NGDF web page as a resource and people can print out themselves as the need arises. I’ll talk to Dr. Nancy Patterson to see what she thinks of this idea. An excellent bulletin written by the husband of a Graves’ Disease patient is available among the present group of bulletins, but I’m not sure what the availability is of those now.

Depending on treatment choice and how each patient responds to treatment, there might be a period of time when time off work for treatment or time off because the patient is physically and/or emotionally too unwell to cope with everyday job demands is necessary, and when it is necessary, it’s entirely reasonable and necessary that the patient receive support and validation from the physician in making it possible. A good doctor will also give families this information, so that the patient has validation and support at home.

How is this going for everyone else? Are your families and employers being as supportive as you’d like? If not, what have you done about it, and has it worked?

[GDRobM]

#1074317

Hi everyone, Apologies straight up for this being long. I am 37 and was diagnosed about 19 months ago and I am having RAI in about 2 weeks. When I was diagnosed I had been running my own small law practice for a number of years, my few part time employees had found me difficult (but i was the boss), and my friends and family had also found me pretty hard to deal with. I eventually had to shut my practice down and start working for another firm to reduce the stress on myself after I was diagnosed, which has helped. The people I now work with are sympathetic, but no one really understands my condition and they really do think that on medication I am fine, which I originally thought I would be also. I can understand that people don’t realise the seriousness of GD, because I didn’t either until more recently. My brother is a specialist Dr and he said nothing to me about it, and has said nothing since. The only thing he said after I was diagnosed, that he thought it explained how my eyes looked and the tremor in my hands, which he originally thought were a result of me having an alcohol problem, which I didn’t! Frustrating. I have explained to my work colleagues in detail now about what it’s all about. And I have explained that after the RAI I might feel pretty average some days, and have been told, just to do what I need to. Unfortunately, my clients won’t be like that!

Anyway, my now ex partner could not cope with me. She thought that if I was depressed or anxious and very stressed etc that it was somehow her fault and as a result she got depressed and eventually extremely angry with me because she was trying but couldn’t do anything to make me happy. She was always trying to work out what she had done or what had happened in my day to make me feel like I did and when I said that there was no reason I could think of, she thought I was hiding something or lying to her or having an affair or something, even though I would go to work and then home, and spent 99% of my spare time with her. I would try to talk with her and explain that I sometimes felt like I was losing my mind and that there was no reason I could think of. For a long time I was not aware that my thyroid was making my life and her’s hell. I felt guilty using the excuse that it was my thyroid making me feel like i did and it affected how I was, even though it was the truth. Since the relationship broke down a couple of months ago at her instigation I have communicated with her by email, and now she gets it, but it is too late. Had I seen this bulletin board earlier or had anyone tell me anything, I would still be in a relationship and would have some support around me rather than being left to deal with everything on my own. Which is still very hard.

It is a fine line with explaining to an employer the seriousness of GD, because it may affect your employment. I have to provide a report from my endo to my professional body to explain that my GD is ok every six months and that it doesn’t affect my work and that I am managing the disease. If I don’t do that they will suspend my right to practice as a lawyer. I am sure if my clients knew how this affected me sometimes, they would stop giving me work to do for them.

It’s very important for GD sufferes to understand how GD affects us. I believe that the burden is on us to make sure people understand how GD and it’s various treatments work and how they affect us. I think the brochure idea is a great idea. It could have saved the most important thing I had in my life, my loving relationship. Hopefully with some information brochures, some others will be helped!

Thanks for listening

Rob

[DianneW]

#1074318

Rob, what a great post, and also you understand the difficulties I mentioned with the fine line between letting employers (and in your case, clients) know about the illness while not causing them to lose faith in your ability to do the job. In other words, whatever information we share with others in reference to the job has to be in our best interests. Perhaps we could have a couple of different versions of the brochure to use in different situations. You write well; perhaps you’d be willing to help with this?

[amyl]

#1074319

When my son was diagnosed with GD in April, 2008, nobody adequately prepared us for how rough this could be. I thought all we had to do was get him on some medicine and hope that he went into remission. The medicine did help A LOT but then he became very Hypo. His doctor cut way back on his medicine and now he’s back to being Hyper and it’s horrible. He’s so sick, he can’t go to school. Luckily, the school that he currently attends has been very understanding about him being out sick. His previous school was anything but helpful…they thought he was just making all of this up. Some of his doctors felt that too which was also incredibly frustrating!
My son hates missing school so he’s frustrated and I’m worried sick. I think a brochure would be very helpful but I think it needs to be carefully worded. I’m assuming not everybody goes through these cycles with the same intensity as my son. On the one hand, it would have scared me to know how intense this could be and on the other hand, it might have helped us be better prepared for all of this. Am I wrong in assuming that not everybody has these intense cycles between being extremely hyper or extremely hypo? Overall, I think I would have preferred know how bad it "could" get but, at the same time, know that it there is a chance it won’t be all bad. I hope that makes sense.
Have a healthy day!
Amy

[Ski]

#1074320

Typically things do happen a bit more gradually than you’ve seen ~ and with ATDs, moving him from a hyper to a euthyroid state should be getting a little easier by now. Still, spikes in antibody action can create hyper phases during ATD treatment, and that can come from all kinds of causes. Stress causes an adrenaline rush, which "amps up" the immune system, and for those of us with autoimmune disease, that means our Graves’ symptoms "amp up" at the same time. In addition, your son may be going through hormonal shifts (not sure of his precise age), and that can affect our body’s use of thyroid hormone, which can make things a bit crazy as well.

I think you would definitely benefit from a symptom diary ~ it’s simply a log where you note symptoms, the severity of those symptoms, ATD dose, thyroid hormone level (if you know it ~ obviously we don’t run those tests all that often), and in your son’s case I might even include some extra symptoms like anxiety, ability to concentrate, or noting whether he has "finals" or some other stressful school activities. This can be a handy reference when you speak with the doctor and try to figure out how to keep your son’s levels closer to normal.

This is a rough road, there’s no question, and dealing with it for your child is difficult by another order of magnitude because you don’t know exactly how he FEELS, but you want to make it all better, quickly. I’m glad to hear that his current school is more understanding, that will definitely help. If there’s anything you can do to help him get the work he’s missing ~ have a friend come by with the work and just discuss it with him, or get a "packet" from the teacher that he can read and work on when he feels well enough throughout the day ~ that might ease his mind as well.

You say the original diagnosis was April last year, so you’re closing in on a year of treatment at this point. You may want to consider a couple of things. First, have a very frank discussion with the doctor (hopefully with a symptom diary in hand) and see if they have any strategies in mind for finding and keeping a normal level of thyroid hormone in your son’s bloodstream. If you don’t hear what you want to hear (a solid PLAN that you can participate in), you may want to consider interviewing new doctors to see if they have ideas you have not yet explored.

In addition, you may need to consider the harder decision of a more permanent solution, one that would not open your son up to the risk of hyperthyroidism every time his adolescent hormones spike or his stress levels escalate. It’s a BIG decision to make, and you should not make it lightly, but it may be a solution that would work better for him. That’s a decision to make WITH him ~ he should have a say in how to proceed. You may be surprised to hear what your son is feeling/thinking/wanting.

You’re taking very good care of him. Know that.

[elf]

#1074321

Rob, hopefully RAI will help you feel "normal" like it helped me, so eventually you won’t even feel like needing to explain yourself. Some people are more sensitive after RAI to Synthroid adjustments, but some are not, like me. Many times I read people’s amazing exclamation, "I feel normal again!" after RAI or TT. I fully agree with them, and I hope for the same for you.

[amyl]

#1074322

Hi Ski,
Thank you very much for your advice. The symptom diary is a good idea. I have started keeping a spreadsheet of doctor visits, reason for the visits and what our plan is. Then I have another sheet where I keep track of tests and their results. I LOVE spreadsheets…they help me keep myself organized.
My son is 16 yrs. old and is very hormonal and stressed most of the time. You wouldn’t know it to look at him because he keeps it well hidden inside. He and I have a very open relationship and we can be very honest with each other. I talked to him a little about the pros and cons of RAI vs. thyroidectomy and he’s leaning toward the surgery. I was surprised by that but I am also leaning in that direction so it’s nice to know we have similary thoughts. Regardless, I think we still need to pursue treating his GD with medicine for awhile longer. I feel like we are still very new to this process and I don’t want to jump into surgery without exhausting other options.
My husband and I made the decision for me to quit my job so I turned in my 2 weeks notice today. I feel so much lighter. Now I can be there for my son whenever he needs me. I will get another job eventually, but for now, I can dedicate myself to helping my son feel better.
Thanks again for your help!!
Amy

[Buttamama28]

#1074323

I am a 29 yr old mother of two who was diagnosed almost 5 yrs. ago, in the beginning of my pregnancy with my first child. Wow, I am new to this site, but definitely feel like a veteran in the disease. Don’t panic!!!! (yeah that went in one ear and out the other I’m sure). It sounds like you have one thing on your side that I don’t….INSURANCE!! If you stay on top of things and the doctor seems to have a plan of action for you, things should be fine.

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