[jlw]

in reply to: PUFFY EYES SIX MONTHS POST RAI #1064757

I have TED associated with Graves. I have not had RAI, but am on my first chance of euthyroid (which is not going well). The puffiness comes and goes. My eyes are worse when I am low – hypER. They are not attractive at all right now. Pictures of me are very telling. I don’t tend to think about it unless I look in the mirror or see a picture of myself. I see the puffiness under my eye. I have dark circles. My eyes continually feel like they are dry and scratchy or like they have something in them. I also feel pressure behind my eyeball, like something is pushing slightly on them.
I use lubricating drops at night, and an eye cleaner in the morning. Cold compresses can help too. When my levels are closest to normal for me, my eyes aren’t an issue. My eye doctor is knowledgeable with thyroid eye troubles and has been great – even keeping my old lenses and switching them out frequently when my vision changes. I would ask if the opthamologist knows about it.

[jlw]

in reply to: Side effects of coming off Methimazole #1064689

I was taken off Methimazole at the end of March. Within two months, I was experiencing rapid heart rate sporadically. Pulse at over 100 and just sitting. My levels have been creeping down since I was taken off. I am not good now, and I know that later this week my levels will be too low. I have not been sleeping. I slept five hours last night, and feel fine. I am typically a 8 -9 hour a night gal, at least I was until I acquired Graves. I am tired. I am not losing weight, but think I am gaining. I have decided that is about the lack of muscle factor.
My tremors in my fingers is back, my nails are all separating from the cuticles and breaking. My hair is dry and breaking. I am irritable for no reason. My eyes are protruding and my vision has changed.
I have found that my symptoms tend to sneak up on me when my levels are off.
I hope that you are checking levels regularly. I hope that you are not rebounding. I was so hopeful when I was taken off my meds.

[jlw]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064870

I did lose a lot of weight when I was seriously hyper. I actually didn’t think anything of it. I was excited to have lost baby weight until I knew it was not from doing anything, but from this disease.
I am not on methimazole now, but was for a year and a half. I gained the weight back and then some. I am about ten pounds heavier than I should be. I keep reading the posts about muscle and I think that is my problem. I don’t have much and my body is trying to gain that back. At least I can hope for that as it gives me a positive thing to look toward.
I, too, am thinking about the next step in my thyroid experiment – to RAI or not to RAI? Good or bad, the weight gain is something that is on my mind because I am already over what I should be.
I am currently creeping back down to hyper with no meds since March. I have been gaining weight though. I am very careful about what I eat, so who knows.
When I don’t feel defeated, I try to be happy with my new curvy mid life self.

[jlw]

in reply to: Meds/Remission #1065054

I went off my Methimazole of 5mg/day at the end of March. My body is not liking phase 2 of my thyroid experiment. I have had my levels checked three times and am quickly creeping back down to the hyper area. I was actually at 0.434 last month. Depending on your Dr.’s popular belief that could be considered low already. I know it is low for me. My dr likes the 0.32 level and I will get blood work done again at the end of this month. The first thing I notice is the change in my vision. This has been a constant struggle for me over the last two years. My eyes have also begun to bulge slightly. My heart races and pounds periodically. I am not sleeping and am exhausted. The best sleep I get is afternoon nap. I am cranky and I am on happy pills. I guess my mood is a helpful guide because I know I should be content. I have experienced contentment over the past year. I am increasingly hot and sweaty, which is just gross.
I am thinking about RAI but am wondering about how I will "schedule" it in – work, school, children, family… I may have to do the meds until next summer. I am tried of being an experiment, but am worried about the effects of RAI. I know that I will have other things to deal with after that as well – balancing the levels on the opposite side of things, weight, vision changes as my eyes settle down (maybe).
I truly do not know what it feels like to be well and I would like to so that I can get on with life.

[jlw]

in reply to: About to go off meds #1066039

Thanks for the info and pep talks. We will see what happens. ” title=”Wink” />

[jlw]

in reply to: Still experiencing symptoms…but labs are normal? #1067794

About two months ago I was feeling this same thing. I was diagnosed with Hyper last August ( about year and a half ago). This past summer I was still feeling hyper/hypo – just not right. I kept telling my endo that I wasn’t right, but my levels were normal. I finally asked myself (seriously) if I’m better, why don’t I feel better? It took a friend to say that she was concerned about me. I went to my PCP and she explained that thyroid hormones and seretonin can become entwined. She gave me an antidepressant. I can honestly say that after two months I feel great! I haven’t felt that in years. I feel 100% comfortable with taking the antidepressant. Obviously for me, my hormones are not normal regardless of which one it is. I was feeling frustrated with my endo as well, thinking it must be thyroid related. This Graves stuff is stressful and crazy.
I am getting wary of being taken off the meds in March. A little nervous about what may happen, but I will hope for the best.

[jlw]

in reply to: depression anyone? #1069135

Well… I got some happy pills. The doctor seems to think that the depression came first before the thyroid issues. It could be. She asked how long it has gone on and I am sad to say that I really don’t know. It has been a very long time. I can think of so many things that could be the "cause" in the last seven years. It has been one thing after another that I have had to overcome. Right now, I am feeling like the illness queen. Last year for my birthday I got Graves. This year I get a depression diagnosis. Maybe next year I will get contentment…

Tuxedo – Graves makes you tired. If you are still hyper, you’re body is on overdrive. My doctor also said that thyroid and depression are extremely similar. I knew that, but I just thought my emotions were all thyroid related and it turns out they are not.

[jlw]

in reply to: recently diagnosed with graves #1069116

I have been on methimazole for a year now. I started out at 30mg and have been on 5mgs for about four months. As of right now, my levels are stable and I am on three month intervals for level checks. If all stays normal range, then I will be taken off meds in March. What I have come to learn is that normal range levels does not necessarily mean feeling better.

For me, I thought about all options and decided to try the meds first. I figure that I will need to be on meds either way, with or without a thyroid, so why not try to reach remission first. That is not to say that I haven’t thought about radiation or surgery because there are many days I just want to be done with all of this. It’s such a strange and complicated disease.
What I know is that you will know what is the best choice for you. There are pros and cons to all of the choices. Take the time to figure what decision you can live with the best. ; )

[jlw]

in reply to: depression anyone? #1069132

Thanks, Emily.
I guess I just want to feel better. I just feel blah about almost everything in my life. It has been a year since I found out I have Graves and it just happens to be close to my birthday. [A nice birthday present, huh. : )] If my levels are stabilized, why don’t I feel better? I just feel tired and impatient and irritated – just not happy and I feel like I should be happier about things, but am not able to. In my brain and reality – I guess – life is pretty good. Guess that is a good sign that I need a mood booster.
I searched depression on this and found a lot of posts that included people feeling depressed, but not much of sharing what may have been done, so I was just wondering how common an antidepressant is for the depression part of all this.

Thanks again.

[jlw]

in reply to: changing tapazole dose – effective? how long to have effect? #1069695

I always noticed that I started to notice differences – mostly feeling better, sometimes worse – about two weeks after my dose changed. I’ve been on 5mg since March now, so supposedly I am stable.

[jlw]

in reply to: Weight gain during Graves disease #1071007

I am on meds for hyperthyroid/graves. Once on the meds, I began to gain weight. On meds since August, I have gained 20 lbs. I have been steady at my new weight ( as well as having steady levels) since April, so for 3 months.

I have been trying to come to peace with gaining the weight. People that see what I eat each day wonder how I could possibly gain the weight that I have. Since being diagnosed with Graves, I am very aware of the foods that I eat. The weight has been very frustrating and one of the hardest things to accept when you already feel like you are crazy most of the time.

I have tried to just focus on the fact that I am technically healthy, despite my extra 20 lbs.

[jlw]

in reply to: Now what?! #1074848

I was surprised about how quickly I was "normal". I also thought 4.397 (range 0.3 to 5.5) was a bit high for me because I did not feel well at all that month (November). My endo dropped my dosage to 20 mgs after the normal range was acheived. I think that I am at a better number now, but don’t go til the end of the month to check again – unless things change more drastically. I was going each month to have my levels checked, but am now at every two months. I have been trying to pay attention to my symptoms, and I guess I’m feeling a bit of the emotional side more now than the physical – besides exercise taking more energy from me. If that makes sense.
My sister-in-law asked me if I kind of feel like a science experiment. I guess that is how I feel. I think it’s just this limbo stage or healing stage.
Thanks for your thoughts.
jlw

[jlw]

in reply to: eye prescription #1075578

So how do you get all of this help with your insurance? I have the standard insurance, new lenses each year, new frames every two years. Is there anything that can excuse the need for more appointments/lense changes?

[jlw]

in reply to: Graves Disease & other Autoimmune diseases(JCWRN look here) #1075639

When I was first diagnosed, I was at a loss for why. After looking into it, I found that it was an autoimmune disorder. My mom has chronic fatigue system and my grandmother has another auto immune disorder. So, I would have to say that there is some genetic tie in there. My mom was not surprised at all when I told her about it being autoimmune related. It kind of made it all click for her. I also called my sister and told her to get a complete blood work-up.
Maybe we could sell it to science? ” title=”Smile” />
jlw

[jlw]

in reply to: HAIR LOSS #1075562

Anna,
I have lost hair as well, not clumps, but I am definitely thinner. It is strange for me because I have always had that thick and coarse head of hair. Now, my hairdresser is so happy because my hair is thinner and much softer. Little does she know why. It’s hard to get used to though.
I also have bouts of terrible muscle and joint pain. I just had two other tests done to check for other issues – the sed rate and anca blood tests. Thankfully, they both came back normal and negative. It must just be the Graves.
I feel your frustration.
Jeanette

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