[Ski]

#1065108

Hi Cynthia,

Sorry to hear you’re feeling so wretched ~ unfortunately, having gone untreated for such a long period of time may delay your return to "normal," it’s SO hard on your body to be hyperthyroid, it affects literally every cell in your body, and since we’re all so different, it can affect each of us very differently, so damage can turn up in all kinds of areas.

For now, I would urge you to do a few things ~ first, go easy on yourself. Consider yourself in recovery, and only commit to those things that you know you can handle, and only those things that give you some sense of satisfaction. Anything that only serves to drain you, DON’T do it, and don’t apologize.

Get educated on what’s going on with your body during GD, because it will help you weather the storm. This BB is a great source of info as well as anecdotal information from people who are going through exactly the same things, so you can find some hints and tips on how to handle things as well as just give yourself an opportunity to VENT sometimes. We understand, we’ve been there, and we won’t tell you to "suck it up and put it behind you," because we know that’s not going to help.

As far as sleeplessness goes, that’s very common, and we had a very good talk on this at one of our conferences. A few things to consider. First, just laying still in a dark, quiet room is ALMOST as good as sleep, as long as you’re not laying there stressing out about not sleeping. Second, remember this is *chemical,* it’s not as if you’re just "too stressed to sleep," your body is literally on overdrive, and sleep is extremely difficult to achieve during this state. As your levels drop, sleep will come more easily, but it takes a while to find yourself at someplace you may remember as normal, so in the meantime, there are a few things you can do to encourage your body to rest. You can "prepare" your body for sleep by taking a hot bath or shower, and doing some kind of nighttime routine (perhaps reading, maybe using recordings of oceans/forests/etc.). Make sure you are laying down in a comfortable position, in a dark, quiet room. If you find yourself laying there stressing out about not having gotten to sleep yet, get up, go into another room, and do something quietly ~ read, knit, write ~ until you feel sleepy, then try again. TV is not good for relaxation, the images shift often, and the idea is to keep your attention on it, so it’s tough to relax while that’s on. If you find that you are sleeping very few hours, and yet it feels as if your sleep is complete, then perhaps head to bed later in the night so that your waking time is more closely aligned to when you’d like to get up anyway. If you need sleep aids for now, you may want to look into that ~ they’ll be temporary, I can assure you of that, but if you let yourself get into a chronic state of insomnia, it can become a mind game trap that’s hard to get out of. If naps during the day are possible for you, that’s another way to get your day’s rest and feel better, so explore that option too.

I hope some of this helps! I’m sure you have lots more questions and issues, stick around and we’ll be happy to help! ” title=”Very Happy” />

[cynthia]

#1018475

I was dx. a few years ago am a RN but because I am on sooooo many meds for RA thought I could wait big mistake am goings nuts with hyperthroid symptions can’t sleep dizzy and short of breath with inability to walk more than a few feet no housework or anything else went to many drs but my endo put me on methimazole 10 mg. once day…..how long unti i can feel better?????? am at my wits end….also put on propranolol 20 mg 1 to 2 q 4 hours this is helping the tremers and feelings of shakeness…want to cut this throid out of me now!!!!! dr. says have to be more stable am 61 and not really helthy but luckily no heart problems except elevated bp any help appreciated not really any family help even though have 5 grown daughters thanks and hope all feel better than me ha ha cb

[cynthia]

#1065109

thanks for replay helps to not feel alone did xsleep 5 houirs last night new record for me yea!!!! used ambein 10 still tired but hope to feel less tired today am from baton rouge, Louisiana anyone out there near me???? would love to talk???? will look for support group this week I am a master prepared psych rn so knowledge is great but feelings more important at this point!!!!! am so lucky to have good dr.s but my endo is so hard to get to see!!! she is over welmed with pat. wonder why so few endos ????? big need!!!! am on medicare disability so not sure if my insurance will let me do surgery instead of RAD. ????? want this thing out of me !!!!! feel like it is a can cer Ii know this is CRAZY talk but so at my wits end can’t do much more not suidical but very unhappy!!!! I am over achiever and can’t stand to be so diabilitated…… lady who answered me can you tell me about your self see that you are on line with graves often and xsound like you hve been arround the blk. ha ha thanks I need to talk not a computer freak usally don
‘t get on but this am fiorst thing I wanted to do is check and see if anyone had answered me thanks soooo much hope you are well cb

[snelsen]

#1065110

Hi Cynthia, first of all, here is a suggestion regarding making appts. with doctors, especially your endo. They are all very busy.
I find this works very well for me. I make appts. way ahead of time. Also, sign a medical release of information form requesting that lab results and notes of your visit to your endo can be mailed to your home.
I am fortunate to be able to exchange emails with my endo, so I also do that.

It is very difficult to be hyper. You are on the (long) road back to being normal again. This WILL happen. With the antithyroid meds and propanolol, the sleep issue will probably become less of an issue for you. So you can think about that as you take your meds.

Ski’s post is wonderful for you. You are not alone, you belong to a club none of us wish to belong to. But we do. This site will really be helpful to you for support. I live in a big city, and no support groups that I know of in Seattle, but I think I prefer this site anyway! And, as a fringe benefit, you will begin to love your computer, for it is your lifeline to the site.

Re Medicare disability, it will be up to you to ask if the surgery is covered. I cannot think of any reason why it would not be covered. They are both treatment options for your diagnosis. But that is down the road a bit.
The choices are personal, and up to you, but I felt like you did, and I just wanted the darn thing OUT!

Right now, though, you need to take your meds, get your labs, report anything that worries you by calling the endo office and leaving a message about it.
I am sorry you have RA, that is a tough thing to have. There are a lot of good support groups out there for RA, too. ARe you hooked up with a reliable and supportive one? Do you have any help at home with things you just can’t get done right now?
Do you have a good friend who can help you with your housework for a little while? You could make it a pleasant day by having her over for housework and dinner!

You WILL feel better. I have been down this road. It WILL happen, now that you are beginning the road to recovery with the necessary steps of the two drugs you are taking. I imagine you will notice you are feeling better pretty soon, now that you are on meds. There is plenty of time to consider the following options.

Hang in there with us! Pretty soon, you will be writing to someone else who is new to this board, and they will be so grateful for YOUR support!
shirley

[cynthia]

#1065111

thanks for the input as you can see up at 330 am again ugh!!! needed cntact so thanks for yor time will try and be patient but am sooo bored usally paint, exercize very busy with grandkids and hate beeing so "weak" did go to the pool with 2 grandsons yesterday for a few hours loved it in the sun !!!!!! I am cold sensitive instead of the typical heat senative so love the 95 degree heat here!!!!hurts my feeling when my 2 1/2 year old grandson says swing me or play ball with him and i just can’t ,,,,feel like a failure I know tha tis stupid but can’t help my feelings no I have 5 grown daughters and lots of grown grandkids but no one to help!!! they are all very busy with work ect and don’t offer to help that is one of the reasons why it took me so long to get help when really sick couldn’t drive to the dr. office and when I went my labl were only high normal!!! anyway I will make it just take one day at a time ha h a hope you have a great day cb

[cynthia]

#1065112

how long cAN THIS NO SLEEP GO ON????I did take a napthis afternoon but really felt worse after that makes no sence.. at least my daughter came and helped clean up my mess y house yeterday was real sweet and greatily appreciated thankes kati it was more than just a cleaning but your caring that I soooo appreciate I sure hope none of my daughters have to go tru this kati has hypothroid and has struggles with it

[Kimberly]

#1065113

Hi Cynthia – Sorry to hear about the continued sleep issues. I know how miserable that is! It usually takes a few weeks for your levels to come down when you are on anti-thyroid drugs. The ATDs start working right away to block the production of *new* thyroid hormone, but your body still will have some stored hormone that it needs to "use up" before you really see some relief. How long has it been since you had blood work done? If it’s been more than a few weeks, it might be a good idea to get your levels checked again to see if the dose you are on is helping.

As Shirley said, most endos schedule way in advance, but sometimes it helps if you can call your Endo (or your general practitioner, in a pinch) and let them know that you are having *immediate* issues. If nothing else, perhaps they can get you on a waiting list in case any cancellations come up. Hopefully, you can get some relief soon…best of luck!

[cynthia]

#1065114

I thanks all for the feedback did sleep better this night propblems with waking up feeling ( hard to explAIN) LIKE MY SKIN WAS ELECTRIC hurts and hot not a nice feeling take inderal and it does get better but by then wide awake ugh just went back to bed and evenually to sleep seem to sleep about 2 to 3 hours at a time just like when I had new baby…….too soon for bld work just started meds last thurs if contine to feel bad will call endo to maybe raise dose am on methimazole 10 mg. day how does that dose compare to yours at the time????? how long did you have to wait to get the deed done ha ha (surgery)????? cb

[Bobbi]

#1065115

Hi, Cynthia:

If you just started your meds last Thursday, it is a bit too soon for you to feel the results of taking them. As Kimberly pointed out, the thyroid not only makes hormone, it also STORES it for future use. The medication we take when we are first diagnosed (antithyroid drugs) acts to stop the production of NEW thyroid hormone. But until the stored supplies are used up, we will not feel the difference. Taking a larger dose of the ATD right now won’t make a difference in those stored supplies. They are all ready for use.

Remember, please, there is no pill that instantly fixes our symptoms and issues. I know it is frustrating. The good news is that you have been diagnosed, and you are being treated. You are on the road to recovery, despite the fact that you cannot feel it right now. I hope you can hold that thought and let it give you strength.

[Kimberly]

#1065116

cynthia wrote: am on methimazole 10 mg. day how does that dose compare to yours at the time????? how long did you have to wait to get the deed done ha ha (surgery)????? cb

Hi Cynthia – You will find that there is a *wide* range of answers to both of these questions, as everyone’s journey with this disease is unique.

I started on 15 mg/day of methimazole; however, in extreme cases, I have heard of starting doses of up to 100 mg/day. The most serious side effects of Anti-Thyroid Drugs (liver and white blood cell complications) tend to occur most frequently at higher doses. So your doctor has to balance getting your hypERthyroidism under control as soon as possible…with the need to NOT give your body more medication than it needs. You will know with your next set of labs if the 10 mg/day needs to be tweaked. If you are not seeing any improvement, the dose will be increased. If your levels are in the normal range, the dose will be decreased. You may also see your dose reduced if you are still above normal, but your levels are falling quickly in that direction. (By the way, it’s a good idea to ask for hard copies of your labs and pay attention to whether your Free T3 and Free T4 levels are falling. Some doctors use TSH to determine dosing decisions with ATDs, but this is NOT the best benchmark for Graves’ patients, as TSH can remain below normal for months, or even years.)

You will also get a wide variety of responses regarding treatment choices. There are some patients here whose Graves’ Disease went into remission after a period of time taking Anti-Thyroid Drugs. Others have opted for surgery or RAI shortly after diagnosis. Right now, I am not in remission, but my levels are stable on a fairly low dose of ATDs.

All three options have pros and cons, so this is a decision that you will want to make in conjunction with your doctor. Factors that might affect your decision include whether you are (or want to become) pregnant, whether your thyroid is significantly enlarged, and whether you have eye complications. In a way, having all these different options makes things more confusing and frustrating. But the good news is that we can feel some level of control over our choice of treatment.
Best of luck to you as to go through this process!

[Lauri]

#1065117

Hi Cynthia, don’t feel you are alone. I was just dx on June 11th, the day after I turned 45. I hadn’t slept in months, and the only advantage was I was getting to work on time. I started athenolol 2 wks prior, and it helped for a couple days with sleeplessness, then started on methimazole. I felt it work almost immediately with my temperment, I felt more relaxed. My scan came back almost normal, so I don’t store it as much, I just produce too much. Lately though, the sleeplessness is back. Last night I went to bed at 3am, and woke up like clockwork at 8am. I feel totally drained most days, but Sunday I felt good and cleaned the house. I have my 15 mo old grandson every wkd. My special time, I love it, but I find lifting him really strains me. I live under alot of stress. Stress that is not easily to make disappear, so I guess I will have to learn to manage how I deal with it. I started seeing a psychologist because I thought I needed to go back on anti-dpressants, been off for 10 yrs now, but because of miscommunications with my GP and Psych, never got on them. Then the GP did the thyroid tests. I have multinodular disease now for going on two yrs. Had my endo ckup in January and levels were fine. So sometime between first of the year and Memorial Day, they started overproducing. I am lucky enough we found it VERY early in the beginning stage. I am on Methimazole 10mg/2 times a day. Taking bothe pills at night or in the morning made me lethargic and sick to my stomach. Just didn’t sem right to take it once a day when your body produces all day long, so I split it up. And I also take the athenolol 2x a day along with it. Keeps the anxiety levels lower and the heart from racing. Although, I still have days when I swear it isn’t working. My biggest problem is getting everyone around me educated enough to know I am not a psycho raging lunatic, that is just a symptom of the disease. I watched my mother go through all this for many, many years, along with Lupus and all the other autoimmune stuff that goes with that. I now can say I understand why I grew up the way I did, and why I took anger management classes when I had my own children. I really did and still do feel like I am going out of my mind, I feel like running away, and feel like I need to be secluded from everyone. I understand patience is needed with this disease, but I’ve always been hyperactive and ran on high gear to begin with. Thank you for the internet and all the people I can connect with.
Praying for a better quality of life from here on out….. ” title=”Wink” />

[cynthia]

#1065118

thanks for the post can relate to yor situation although don’t think this meth. is working for me so sick to my stomach only on 10 mg. once a day…called endo and she will call me back this am…..thanks cb

[cynthia]

#1065119

need input when I wake up after a few hours of sleep restless full of dreams ugh!!! anyway feel like I have elctric buzz all over with shaking is that anything anyone else has experanced ???? I did sleep a little more this pm with out any med assist not really good sleep I hate night because I feel like I keep trying to sleep almost like work???? and feel like sh.. when I wake up/// thanks for input and posts cb

[snelsen]

#1065120

As Bobbi said, there is residual thyroid in your body which is still affecting you. Perhaps the feelings you have when you wake up is related to that. Remember, you have apparently been hyperthyroid for a long time, and unfortunately, everything about thyroid disease takes months and months to get to where you want to be. You have been on medication a very short period of time. If you can alter your time with your grandchildren for now, it sounds like a good idea for you. It is very hard to be around healthy and energetic kids when you don’t feel well. Is this possible?
Otherwise, read the posts of the facilitators again, for they offer much insight and good info into this disease which we have. I think your sleep issues may resolve when you are less hyperthyroid. This is the best site, with accurate and monitered information, so i am glad you (and all of us) found it!
Shirley

[Ewenme]

#1065121

Cynthia–
I, too, have trouble sleeping many nights. Have been on Methimazole since March when i was diagnosed. It was worse when I was first diagnosed–would lay in bed with my heart pounding and staring at the ceiling, and feel so restless. Thankfully, the ATD has been helping with my symptoms, but I still wake up most nights about 2 or 3 in the AM. If I can’t get back to sleep I get up and go read a book (I"m becoming quite well read ) , maybe have a little snack (but I am starting to be careful again about what I eat since my weight has crawled back up to where it was pre diagnosis, which is ok, but I don’t want to gain too much weight now). I did get a prescription for a sleeping pill back in March when first diagnosed, but don’t like to take it too often, since i have heard if you do that you become dependent on it or else it loses its effectiveness. I don’t take atenolol anymore, since my endo said I could try and wean myself off of it and my heart rate has remained within normal limits. Now I wonder if atenolol affects the ability to sleep– maybe I should have kept taking it? I am wondering if after awhile it’s really the thyroid overproduction keeping me awake or just that I’ve gotten into the habit of waking up. My lab values were within normal ranges last time they were checked in early June EXCEPT that my tsh was still low.
Anyway, that’s my story. Hang in there–I hope it gets better for you as well as for me ” title=”Smile” /> I’m tired of being tired.
Joy

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