[ewmb]

#1070933

Julie,
Have you started on anti-thyroid medication yet? If so as your TSH levels change you should start to feel better. It is a hard disease to deal with since you don’t always look sick. I’ve had it for two years now and just had radioactive iodine. Your choice on how to deal with your disease will most likely be a process of education and reflection. My dad has it but never really had any symptoms that bothered him. Everyone is so different even with the same clinical diagnosis. Talk to your doctor about checking all your other levels for things like vitamin D etc.. A lot of Grave’s disease patients don’t absorb enough VIt D. When I started taking more I felt better. I make sure that I get enough water each day, being a little dehyrdrated usually makes me somewhat sluggish. Everyone knows they should eat right but it’s hard when are so ill. Eat what you can tolerate and try to notice what makes you feel better or worse. Sleep is hard when you might not be getting good sleep. I feel better when I stick to going to bed and getting up about the same time every day even if my sleep isn’t ideal it keeps me on track. I still do take short naps on my couch some days though. Hope that you find the bulletin board to be a help.

ewmb

[julies]

#1070934

Dear ewmb,

Yes I am on medication, I was on a Bata blocker for a month, but had to go off that for the thyroid medication. I have been on this medication since Friday, I feel so sick, and the headaches are awful. I wake every morning with one. I do go to bed late, I have sleeping pills right now which knock me out around 11 pm or so. I get up around 5:30 am everyday. I eat three meals a day, not to heavy. I am walking just about everyday with my dog. I have joined the local gym, close to where I work. I force myself to go to the gym after work just about every night, when I get home, I walk the dog near a mile, eat, clean the house, do laundry, and go to bed. i will speak to my doctor about blood test for the vit d. that makes some sense, I crave milk all the time, that could by why.

What about the medications you take after the radioactive iodine. Do you gain weight? Are they medications expensive if you have not health insurance?

I really hope the medication helps, thank you for answering.

[kaicee118]

#1070935

Julie – I certainly know how you feel. Sometimes I am/was devastatingly tired at work and would continually fall behind. Also, my thoughts were always fuzzy and I couldn’t order things in my head. Although tapazole "normalized" my thyroid numbers, these other symptoms didn’t seem to get much better. I just had my thyroid removed 3 weeks ago.

While it’s great that you’re active with your dog and the gym, I’m wondering if maybe you’re trying to do too much? I had to cut out a lot of things I was used to doing, because I had to rest. I know everybody’s different, but that was what (somewhat) worked for me. Light activity, much rest, and trying to reduce stress as much as possible. Be nice to yourself as much as possible! I wasn’t very used to doing that, but I learned to.

Best of luck. Hope you feel better soon.

[julies]

#1019334

I do not understand, this disease. I only know that I feel very alone right now, and just want to cry all the time I have read serveral of everyones stories, and feel that I have come to a place that can be a support.

I feel like an emotional wreak especial at work, I Case Manager the chronically homeless they have mental health and substance abuse problems, I am suppose to be a rock, I am not feeling very strong. My family just thinks I am being difficult; they really have no understanding on what this disease does to a person. I just want to sleep, at work I can barely hold my head up, I am getting so far behind on my paperwork, what do I do. If I take time off, I will not have my health insurance, I need my health insurance. Will doctors provide other medication for the anxiety, and tiredness?

Thanks

julie ” title=”Neutral” />

[ewmb]

#1070936

Julie,
You might need to check with the medication insert from the pharmacy to see how prevalent headaches are as a side effect of your medication. You can always call the pharmacist if you can’t find the printed insert. I was on a beta blocker and it made me feel awful. I went off it as soon as I could. I did taper down when I did it. If you didn’t do that you might be feeling effects from going off the beta blocker. Also for me it’s the time of year that my allergies and the summer thunderstorm weather make my head hurt a few times a week. I use a nasal irrigator to keep my sinuses clear.

I haven’t started any replacement hormone yet. I know from looking at the prices on-line that it isn’t that expensive. My co-pay for the brand named levoxithol? is $10 a month. It might be even cheaper if I don’t use insurance. My mom takes synthroid and she doesn’t use her insurance because the drug is cheaper than her co-pay. She also shops around by phone for the cheapest price on all her drugs and her local pharmacy matches the prices. The Wal Mart commercials seem to imply that generic hormone replacement would be in the $4/month category. You can check their list online I think.

I too had to pare down my activities. I built in a rest for myself each day of an hour or more of just sitting or sleeping on the couch. Overdoing it made me have a few bad days in a row to recover. Remember that your Graves makes everything work harder so doing too much on top of that is really exhausting sometimes.

Hope that you feel better in a few days.

ewmb

[Ski]

#1070937

The thyroid meds may take a while to help you feel better ~ they’re working, no question, but our body protects us from radical shifts in thyroid hormone and things typically happen rather slowly. Believe it or not, you may wait 3-4 weeks or more before you really notice that you’re feeling better.

In the interim, though, many doctors still prescribe beta blockers to reduce the anxiety and tremors. You may want to ask about that.

It’s impossible for us to say whether you should try to continue with work, but if your health insurance is at risk, I’d say do anything you can to keep from losing the insurance. You’re at a very early point in your treatment, and you will need lots of appointments, lab tests and monitoring for a while. If necessary, try dropping some of your "usual" after-work activities in order to preserve energy for your work environment.

Your work environment is also emotionally stressful, so you should put EXTRA effort into finding things that shore up your emotional strength. Whatever YOU love, whatever makes you feel whole, satisfied, and sustained ~ make sure you do that. For everyone, it’s different. Could be a hot bath, a walk in the neighborhood, watching the sunset from your favorite local mountain, painting a lovely picture, writing a beautiful poem. Make sure you take the time to do it without guilt. ” title=”Wink” /> Very important. You are ILL, whether you like it or not, whether you look it or not. You need to protect yourself right now.

We’re so glad you found us. ” title=”Very Happy” /> Please ask any questions you have, that’s what we’re here for!

[mamabear]

#1070938

I agree with extra things that might tire you out. Walking the dog AND going to the gym might be to much for your body. Please make sure that your dr knows this as well. If you’re in need of beta blockers still he might not want you to be going to a gym.

If you are taking abien for sleeping or any other type of sleep aide please please make sure that you are taking it BEFORE 11pm. You need about 8 hours of solid sleep when on abien IF YOU dont have that amount of sleep lined up then do not take that medicine. You will only wind up being even more tired. You must devote that amount of sleep when taking sleep aides. From what you are saying you are only barely getting 6 hours of sleep. Going to bed at about 11pm and waking at 5:30am isn’t enough.

I know this is hard…. I am going through this myself and it stinks to all holy heaven! You MUST get to bed at at least 9pm…Get your body trained to do this, no later than in the bed ready to sleep at 10pm. Oh it is so horrible to think you feel like 100 and have to have a bedtime BUT your body needs the rest. I am currently doing this myself and feel foolish but wow it surely helps.(i have 4 kids and have to retrain my brain not to wake up at every movement at night).

Like SKI said, take a hot bath or something soothing and get a bedtime routine going.

as far as work goes… I don’t know about the politics in your job but is there someone you can speak to about your health and explain to them what is going on?

I would personally stop going to the gym and start taking a nap at home15-20 minutes then wake up then try another 15 if you need it. set your alarm clock and go for it. My dh has down those types of naps since before I knew him. i remember being 17 saying why is this 25 yr old taking a 15min nap. HE STILL DOES lol and man it works for him. Me on the other hand i use to be able to sleep 5 hours for my nap then go to bed lol. I only wish!!!

Explain to your family, give them the info they need. Some places have brochures that you can print out. After they read it if they dont get it try to explain it and if they dont like it well…you come first and they’ll get over it.
Do you have a dh and kids? I would recommend dh getting on board with realizing what your illness is about if you have little ones. Prayers.

[ely2009]

#1070939

Welcome Julie,

I agree with everyone that you may be overdoing it. I was diagnosed in March and at first I had to conserve my VERY limited energy for the things that I HAD to do – make meals for my family, do SOME laundry, etc. It was a big adjustment for me. I was used to moving all the time and getting lots accomplished every day. When I began to feel somewhat better (after weeks on methimazole) I began doing more, but not overdoing it. Now I’m feeling much more energetic – not normal yet – and I’m looking around at my house that seems to have fallen apart for the last 6 months and just keep thinking it’s going to take 6 more months to get it back to normal. But I just couldn’t do more than I absolutley HAD to for a while, and I was OK with that.

So if your energy goes to work and taking care of your dog, that’s OK. Your body probably needs the extra rest right now.

It’s so frustrating that the meds take so long to "feel" working. It’s very difficult to maintain a normal life when you feel so out of whack. It’s also frustrating that it’s ot obvious we are sick. I feel like I constantly have to explain my lack of energy, etc. because i don’t want to appear lazy or grumpy. And Graves is something that most people haven’t heard of so the people around you need to be educated just as you do so they understand better what you’re going through.

Best of luck and hang in there.

Emily

[julies]

#1070940

Hello everyone;

Thank you for all the great feedback and support, I am so glad I found this web site.

I will do some serious thinking about the gym, I believe I was over doing it, but gosh it is a great place to get you anger out in a healthy manner.

My family is not that supportive, I have brought home information regarding my illness, I have informed them that I need less stress and more help around the house. I have recently been able to get some things in order, but god is it hard. I do not have an environment that I can relax in; there is always so much to do, and I am the only one that will do it. I have tried to delegate, but it was a no go. The sleep problems are that everyone at home will not quite down, so I can get my rest. When I try to take a nap they are banging on my door. How do you deal with a disease like this when you have a family that does not seem to give to hoots on what is happing to their mother/wife. I don’t know if it is their ignorance, or they don’t want to believe that the person that takes care could be unable to continue. What to do about them, how do I get them to understand.

[Ski]

#1070941

You may want to find some posts here by OTHER people who are talking about how they feel, print them out and have your family read them ~ that may shine a light for them.

I would also suggest taking a very good look at the "everything" you do, that you don’t get help with. I am reminded of the joke where the husband says to the stay-at-home wife, "you don’t have anything to do all day, it must be great," whereupon he arrives home from work that day to find the kids running around with the garden hose, the house in shambles, and his wife happily napping. When he says "what happened?" she says to him "what? All that nothing I do around the house, you remember ~ today I decided not to do it!" ” title=”Very Happy” /> In other words, let them pay the price for not helping you. Perhaps you need to decide not to LOOK at some particular mess or other task. Let someone else notice that there’s not a clean dish in the house to put their sandwich on. Let someone have nothing to wear because they did not help with the laundry. We all know what will put the world in crisis mode, so you will need to keep some level of normalcy, but not everything MUST be done, and you need to consider your health. One of our difficulties is that, technically, we can probably drag ourselves around and do everything, but we pay dearly and it makes it harder and harder to handle everything. And our resentment just grows, which also makes it harder to heal.

I think nearly everyone I’ve met on this BB has said that they are the one who does everything, the household could not run without them, they always pick up the ball and run with it, they don’t know how to NOT be that person. Perhaps that’s the most important lesson we all need to learn from this ~ to back off, let someone else do it (let them do it wrong, even!), consider YOURSELF as priority one, for a change.

One of my favorite discoveries was this: "Mom, what’s for lunch?" "Gee honey, I don’t know, what do you want to make? And while you’re at it, will you make me one?" ” title=”Very Happy” />

Think of this happening to your very best friend. Wouldn’t you fight like a tigress for her health? Do the same for YOU.

If you can’t get peace in your own home in order to get some rest, hire someone to take over for a while and go somewhere quiet, where you CAN rest. Whatever compromises need to be made, make them.

I realize it’s not easy. Remember that you’re worth it, and that IS the bottom line.

[mamabear]

#1070942

I agree with SKI. Stand back and watch for a little while. I know I know I know… if you do that then nothing will get done… Oh wait I think I know what you have!!! You have Supermom syndrome. Well welcome to the club, I do often as well.

I don’t want to assume anything BUT I am thinking that your dh doesn’t think that this is real disease. (breaking out my frying pan in case you need it!). Hubby is going to have to get on board here. How old are your kids? Young or not him showing that you can be sick and still do things will only teach your children that you are less of a person and that they can do the same to you. Oh heck no!
He needs to not only understand that you are ill but that those kids down the road are going to have to be watched for this disease and it will be a part of their medical history to give their dr’s because they could one day be faced with it. Sit him down and tell him listen smarten up(saying that with a heavy maine accent like my nana would say!)

For you to be ill and for him to allow anyone to come knock on the door is absurd! Unless the dang house is sinking there is no reason for him to allow that to happen. He needs to be supportive and the kids need to see that.

Also if they are young or old kids they should still be listening to you. Leave me alone means just that! Don’t knock on that door or else! Consistency with punishment can help in a situation like that. They might be to young to understand and if they are a teen then don’t bother becuase that is a selfish time and they wont understand unless they were actually living with it themselves and even then they’d be upset about it.

Dh is going to have to figure this out even if you tell him listen this is real and you are going to have to support me on it whether you like it or not.

[ewmb]

#1070943

I have to let you know that my two teenagers were very able to handle this information and because their father supported the family changes that had to happen they were able to cope. Having this disease means the family dynamics change for everyone not just the person who is ill. My teenagers handled things differently than an adult or a toddler, as they should have. I was never expecting that they not be able to live their own lives and focus totally on me. Empathy is modeled best in a two way exchange in my family. Of course my family had to step up and take on more during certain times. I wouldn’t have been able to get through 2 years of this without help, understanding and time to start healing. I hope that my children will take away the lesson that all people need help at some times in their lives and that they shouldn’t be afraid or feel selfish to ask for help.

Maybe your doctor can help you out by actually writing down a prescription for you that involves you resting, etc. so that you can start to gain back your strength and energy as the medication starts to work. My husband attended several of my appointments with me at the beginning so that he could ask the questions that he needed. That way the information wasn’t second hand from me.

ewmb

[julies]

#1070944

I printed out a lot of information today to bring home and leave in the bathroom for the men, by the way my son’s are 21 and 24, but I doubt that they will really understand.

I am looking for support groups in my area, but have had no luck yet. I have called my endo for some information.

I appreciate all the support I have here! Thank you so much, it is great to vent, I never really needed anyone, which is most likely why my family tends to think I am a superwoman!!! I have made it through worse times, thank goodness for all of you ” title=”Smile” />

Jules ” title=”Wink” />

[mamabear]

#1070945

Not to scare your boys but telling them that this is now family history and that they too can get this and can pass it along to their kids , it’s important for them to read the info and ask questions. They need to know the symptoms and signs of something going wrong with you. Not saying it will but if they know you and you aren’t acting right and they mention it to you that could be a world of difference in getting treated faster. Even if it’s just tweeking your meds.

They will eventually have wives and babies and although they shouldn’t worry about the disease, they should understand it and tell their dr’s that you have it and read up on it so they know a little bit of what to expect.

He who puts his head in the sand, gets kicked in the a** eventually! ” title=”Wink” />

I hope they read it and understand that you do need support and understanding with this disease. I am lucky to have a husband that walk over the piles of clothing that pile up on the floor when I am not well or when the kids have me up at night. He was hugely supportive when we found out i had Graves and continues to do just that with everything.

Hugs to you

[Anonymous]

#1070946

I think I understand myself, but I don’t think that my friends and/or family understand. I was diagnosed in March.

I am a business owner, and most days it is just me at work. I am always stressed out about work, numbers, money and all else that goes on with personal issues (grandparent passed away, another in the hospital)…anyway…I know that the way I have been living cannot happen anymore. I used to volunteer between 10-20 hours a week on top of my full time job and family.

My doctor told me that I have to take the stress out of my life and I would probably sleep better at night. I did, I quit volunteering cold turkey. Now I am very sad and feel worthless all the time. I come home from work (a desk job) and am so tired, I basically pass out. The kids wake me up to start dinner…but I don’t want to do ANYTHING after I get home. I now am feeling selfish and worthless.

I have no health insurance, so I haven’t been very good about getting the blood tests regular, plus I just don’t want to go. I have some eye problems now… i have a blind spot and my retina is starting to pull away.

My kids get it most of the time…my hubby not so much…he looks at me like I am a lazy good for nothing sloth. I try to explain to him that I don’t want to be like this, I cannot help it. Short of quitting my job and filing for bankruptcy, I don’t know quite what to do. I cant cut much more out of my life…it will only be more depressing!

Anyone else live with someone who didn’t understand? How did they finally get that we aren’t ourselves anymore? How temporary are these things or are they going to last forever???? I need to do something…but that involves stress… I just want my life back.. ” title=”Sad” />

ps… does anybody have trouble concentrating or remembering things?

[Author]

Posts