[DianneW]

#1074139

I have a couple of comments here. Crista, you keep talking about trouble sleeping and the stress you are experiencing. In your mind, these problems are coming from your worries about gaining weight and from taking the meds. What I see is that these are symptoms of untreated hyperthyroidism. They will go away in time once your levels are normalized.

What we like to do when we’re having these symptoms is to find something to blame these symptoms on, so of course the fact that you really are worried about weight gain is an easy focus for you. Still, keep in mind that this disease is probably causing you to worry about it more than you would if you were not hyperthyroid.

As Ski said, there is NO ONE who isn’t concerned with putting on excess weight. Still, we do have to treat this disease. Regardless of whether the disease causes some weight gain, the end result is that weight gain is caused by taking in more calories than are burned up. It is always possible to lose weight.

I won’t tell you that there won’t be more weight gain than you might wish for in the days immediately surrounding your treatment. Some of it is healthy weight gain, with muscle that was lost being replaced. Some of it might be temporary fluid retention, as thyroid levels are out of whack at times. At one point following my RAI I was 40 pounds higher than my pre-Graves’ weight (the fault of a doctor who failed to properly adjust my levels, and shouldn’t happen to most people). But now 13 years following my RAI I weigh the same as I did before Graves’ Disease, and though I’m not saying it’s always been easy, what woman in America has an easy time maintaining her weight? Probably for the most part only the ones who are still hyper! Remaining hyper and staying alive and healthy are simply not compatible.

Crista, if you are having hives in response to the methimazole, you can try PTU or you have the options of surgery or radioactive iodine. You will not bring your thyroid levels into normal ranges any other way. Your trouble sleeping and your worries won’t stop until you treat this disease. It takes time to bring the thyroid levels down, and then you’ll be in a better place emotionally to make other decisions.

James and Ski both had some very good comments about treatment that I hope you took seriously.

Noelle, if your doctor adjusts your meds right, you won’t be either hypo or hyper. Then your metabolism will be normal, and your appetite and energy levels should eventually go back to what they were before you had Graves’ Disease. That might take some time. The weight you gained won’t automatically disappear. You probably will have to increase your exercise and decrease your food intake to make that happen. It’s not so difficult if you keep in mind that you can lose ten pounds in a year simply by cutting out 150 calories a day, which is the equivalent of a can of soda. If you cut that much out and burn up that many calories through exercise, you can lose 20 pounds in a year. These are very small changes, but they make a huge difference over time. Consistency is what counts.

Best wishes,

[cwilson]

#1074140

Dianne,

Thank you for your positive attitude.

[DianneW]

#1074141

Crista, you sound like someone with a positive attitude, and I hope you will be in contact with your doctor today and feeling better very soon. Best wishes,

[Llamapalooza]

#1074142

Christa

I have also been dealing with Grave’s for approximately 11-12 years. I went first to see a psychologist for depression shortly after moving from California to Arizona and during the time was stressed out with two young children and getting a divorce from their father. She suggested I get a "mini physical" which I went on to do. The PA I saw said he didn’t mean to alarm me but my thyroid was "twice normal size" and the whole thing snow-balled thereafter. I was consulted by an endocrinologist first off and the next thing I knew I was given two treatment options: 1) Radioactive iodine to shrink the tumor. 2) Surgical removal. After being given the risks, etc. it seemed like a no-brainer to me to pick door #1. So I went into the Nuclear Med Lab at Banner Baywood Hospital in Mesa, Az and swallowed a horse-sized pill, spent the next three days under quarantine in my apartment (I expected that I would have a bright green glow but no, that didn’t happen as I didn’t frighten the pizza guy away from my door when he was delivering a pizza!)

So the most important thing to do after that, I found, was regular and frequent visits with my endocrinologist, who was highly reputable in this area, and regular and frequent blood draws so in that first year they can control the Grave’s with medication adjustments and that worked well for me for awhile. I then began having severe migraines over the next three or four years and was seeing neurologists, GPs and whoever else i could see to try to stop the migraines which were daily and I thought about suicide being the better option than having those headaches on a daily basis.

I went back to my endocrinologist again and again complaining of the headaches and he told me there was no correlation between the Grave’s and the headaches. I then found another T-disease online forum and was astounded by the replies I got at that time about people with various thyroid disease diagnoses who had headaches and most of them KNEW it was part of the complex issues with thyroid disease. I was so livid with my endorinologist for telling me time and time again there was no correlation between the two that I fired him and never went back to him again and since then I have just let my family GP manage my meds.

But I posted the lastest findings aleady, where my thyroid function levels (and I cannot remember which, they told me my TSH was normal) are extremely elevated. I had my meds adjusted and seven (?) weeks later went back for another blood draw with the same situation, extremely elevated. I think norm is something like 0.4 and they said mine was 129. I don’t know if they meant 12.9 or actually 129 which would seem like I’d be dead or something.

So dealing with that. All I can tell you Christa is to do what your doctor says. I wouldn’t recommend any homeopathic remedies for this particular disease. You thyroid and pituitary run the show as far as your metabolism goes and really, not something I would try to handle with herbs, etc. You will need a lot of blood work over the first year so the docs can keep adjusting your meds until you reach levels which are normal. And even then, you will need adjustments from time to time. Personally, with the onset of Grave’s for me, I lost about 35 pounds but attributed it to the stress and divorce, etc. Nope, wrong!

I’m sure you’ll do fine Christa. Ask a lot of questions and get reassurance from your doctor and this forum, which by the way is just a plethora of great support and information. Good luck hon, I’m sure you will do very well.

Rochelle

[cwilson]

#1074143

Dianne,

I am trying to be positive. I am typically a very positive person, I think I just need to find what works for me. I talked to my mom today and she told me that I may need to drop out of school for a little while. I think that is something that I may do. I am am full time student and I do get stressed out with school so it will be nice having one less thing to worry about. I do have a question if you happen to know the answer. I broke out in hives with the methimazole, is it something that my body will get used to and stop breaking out? I can deal with the hives when I take benadryl but the benadryl knocks me out and I have a itty bitty to take care of. thanks again for all you kind words.
Christa

[cwilson]

#1074144

Rochelle,

Thank you so much. I hope all is going well for you. Sounds like you have had a bad run of it. I do love this support group. I am so glad I found it. My cousin had good luck with her Grave’s Disease so I hope I follow in her foot steps. She is in remission and hasn’t had an issue since she was a kid. Well take that back, when she got prego she had a flare up but it went back to normal right after giving birth. It’s hard to find a doctor that truly cares. That is the issue I am having. Best of luck with everything.
Christa

[malia]

#1074145

Hi All,
I just wanted to say that I SO feel your pain and I was SO glad to see you get such good advice. I think it is easy to get a bit obsessed with the falling-out hair, the weight issues and the bulging eye – we forget that there are such dangerous underlying issues. Treatment is incredibly important.

I also wanted to concur that I’ve had and am having trouble sleeping, I’m crazy emotional and am not handling stress well. It is just the disease, it will get better with treatment and I am so grateful to come here and hear that when I need to.

[DianneW]

#1074146

Crista asked whether her hives would go away after being on methimazole for awhile.

Right now in the early stages of treatment since you’re on a higher dose, any reactions such as hives will probably be worse. If you are motivated to stick it out, it may not be long before your doctor reduces your dose and you will find that the hives become less bothersome. Or—you and your doctor might decide instead to try the other antithyroid drug, PTU. It’s possible you would have a reaction to it as well, but just as likely you won’t.

Another option is to ask your doctor if there is a non-drowsy alternative to Benadryl. I don’t know that there is, but it’s worth inquiring about.

Your mom’s advice to take some time off from school to take care of your health makes sense, if you’re able to do that. You said you have a child? If so, my guess is that you’d need any physical and emotional energy you can muster for motherhood right now. I can’t even imagine how any of you women with children are coping while hyperthyroid. I had trouble enough dealing with myself at that time. I hope all of you with children are getting help when you need it.

Back to the weight issues. You can be sure that no one hates weight gain any more than I do, but I worked hard to put this in perspective for myself since I had no choice. My husband and I met while I was recovering from Graves’ Disease and I still had a good share of the weight gain, and hadn’t had any of my eye surgeries yet.

At our wedding I was still 10 pounds more than my pre-Graves’ weight, my eyes still bulged, and I had a draining infection under my eye, but I knew that my husband and all the people in my life loved me for the person I am, not for shallow outward factors that can be taken away when a disease hits. It’s a very secure place to be.

So please, those of you who are so concerned about weight, this is a sick obsession of modern society. If we gain a few pounds during the course of treatment, we can take it off again, if we’re motivated to make the healthy choices. But our loved ones would rather have a few more pounds to love than bury us, or even than to see us all skinny and crazed and stressed, and not sleeping at night. I get really worried when I see anyone even think of not treating, but especially because of weight worries. Anyone who believes that being hyperthyroid is the only way, or a valid way, to control weight is mistaken. It’s more like taking the path to destruction.

Okay, off my soap box. ” title=”Smile” />

[nlldvs]

#1074147

I too have these horrible headaches. Stabbing one, in various parts of my head at different times. Sometimes sharp and quick and others sharp and lingering. but it is very painful never the less. Is that the GD causing this. Or could it be something else? Thanks. -N

[Ski]

#1074148

As far as we know, Graves’ doesn’t cause these. I was having them for a while this year, and did a cursory search for info at the time. I believe I found the most relevant info under the title of "cluster migraines," it sounded like what I was going through. It has subsided, and nothing has changed in my thyroid hormone levels in the meantime. I know that’s not much info, but it’s all I’ve got for you on that topic. ” title=”Wink” />

You should run the info past your PC and see what they have to say.

[cwilson]

#1074149

-I have been taking a claritin during the day since it is a non-drowsy med and benadryl at night. So far so good. I haven’t taken any this morning. I am going to see if I am still getting hives. But since this support group I have been doing so much better. I am not stressing as much about weight. I am trying to remember that I am a healthy person and I will continue to eat right and excerise and if I put on a few pounds I will deal and if I don’t then great. I have been sleeping so much better at night since I know I am reducing my stress. I will be taking a few months off from school and just enjoy my son and getting back to things that I love, reading, scrapbooking, and a few others. All of you have been so great and I appreciate all the advice and help. All of you are awesome people. thank you so much for everything.
Christa

[DianneW]

#1074150

Crista, that’s really great to hear! You’re right, there ARE lots of great people on this board. I’ve met so many wonderful people because of this disease that my life has changed in a really positive way; and honestly, if a genie offered me a chance to take away this disease and restore my eyes to normal, I wouldn’t take that offer if it also took away all those people I’ve met and experiences shared.

It appears to me that you’re making some wise and healthy choices, and if your doctor is diligent you can avoid going hypo and shouldn’t have to worry about that causing weight gain. You might want to communicate to him that you worry about going hypo and ask for his help in avoiding that. Perhaps he’ll be especially careful if he knows it’s of concern to you. Some doctors are more responsive than others to such requests.

If you’re like most of us, some days will be better than others during this journey, but one of these days you’ll find you’re having mostly good days again. I hope that is soon for you.

[scoutgirl78]

#1074151

I am new to Grave’s disease also. I went through bloodwork, then the uptake and scan. It’s about 3 times as what it should be. I am a 34 yr old stay at home mom of 3. We have a small farm with critters (including a horse and pony) that I take care of. Well, I was, until every time I would clean a stall, I thought I was going to pass out from my heart rate. I am currently on 10mg of methimazole 2 times a day. I just started it on Monday, so no response yet. I am trying to be positive about it, but I really feel out of control most of the time, physically, mentally and emotionally. It’s very hard to make your family understand how crazy you feel, between the shakes, the heart rate at 100+ sitting still and the exhaustion. Is there something I should make my husband, especially, read or something? He knows what’s wrong, but I don’t think he really gets it. I am so glad, like the other newcomer, sorry unless I write something down, I can’t remember it, so I dont know the name, that I found this support group. I am an active person, so it’s frustrating to not be able to do everything you want to, I am glad I found people in the same boat.
Thanks! ” title=”Razz” />

[DianneW]

#1074152

Welcome, scoutgirl! It’s not that unusual to have families (husbands) that don’t "get it". One possible reason for that is that it’s painful for them to realize that you have an illness that is as serious as it actually is, so it’s easier to live in a kind of denial, believing what you have is not that bad.

Have you had emotional outbursts? If so, that’s not unusual. When you’ve hit your hubby in the head with a sack of horse feed and screamed at the top of your lungs a few times, he should "get it"! (Just kidding!) Anyway, welcome to the club!!

[cwilson]

#1074153

Scoutgirl,

this is such a great site. it has helped me like crazy and still helps me. all of the people on here helped me. I was emotionally off my rocker, freaking out over weight gain, could sleep at night and such and getting on here and talking to people was the best thing for me. I am not nearly as emotionally as i was at first. As for your husband, just keep your communication open, your family won’t understand if you don’t talk about it. at least for me that helped. i hope everything goes well for you. Take care. ” title=”Very Happy” />

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