[Julie3588]

in reply to: Hair Loss #1066008

I had RAI in June 2009 and was put on Synthroid when I went hypo. I’ve bounced around from being hyper to hypo on the meds and am still trying to find the right dose. I noticed in October that my hair was really starting to thin out. I had ultra thick curly hair and by December is was thin and limp and wouldn’t do anything but just kind of lay there. I really felt like screaming "what now!" It felt like another slap in the face after all the other symptoms. I noticed that it was mostly failling out around my hair line so it seemed like my hairline was receding, yikes. Everytime I washed or brushed my hair it would come out to the point where I would almost clog the drain. I was freaking out. I called my endo and he said that from swinging around from hyper to hypo I may notice "some abundent hair turnover for awhile." I took about 3 months for it to stop falling out and it’s started to come back in a bit ” title=”Very Happy” /> I started using Garnier Root Booster to make it look better through all this. Instead of spraying it just on my roots I spray it throughout my whole head of hair and it helps a lot. It makes the hair I have left thicker and bouncier. I also got more layers in my hair to make the thin section a but less noticable.

Hope this helps. Just know your not alone! There’s a bunch of posts on this board about hair loss. Congrats on your upcoming wedding ” title=”Very Happy” />

-Julie

[Julie3588]

in reply to: Need Advice #1066058

Thanks for the advice guys ” title=”Very Happy” /> I was just so tired and frustrated yesterday and needed to vent a bit. Sometimes I still get angry that Graves’ is trying to mess up my "plan" lol. I’m going to talk to my professor today and think he’ll be helpful. I connected my school’s disabilities office too and although they mostly deal with learning disibilities, I think I can still use their services to help if my professor isn’t cooperative. I wish I knew my freshmen year that Graves’ fell under ADA.

I also got blood work back last night and my TSH had swung from .3 to over 3 in the past 3 months so it was nice to hear there’s a least a reason I’ve been feeling so off lately. My endo’s going to send me a note I can show my professors that explains a bit about my symptoms. I’m keeping my fingers crossed that my new increased dose of Synthroid will make me feel a bit better.

-Julie

[Julie3588]

in reply to: Eye Floaters #1066294

Reading your post made me realize that my floaters may be related to GD too. I had never made the connection. I was diagnosed with GD my freshmen year of college after some extreme symptoms sent me to the hospital. I began getting floaters in my left eye approx. a year before that during my senior year of high school. I am now a senior in college and still experience the floaters in my eye, though I have not noticed they get any worse/better when I have gone from hyper to hypo multiple times because of ATDs and RAI. They bother me the most when I am in bright sun or looking at a computer screen, similar to your situation. I’m also on 100 mcg of Synthroid, lol. I went to an eye doctor a few years ago about them and he said I shouldn’t worry unless my eyes start to bulge, which they never had. Sorry I can’t really answer your question about whether they are connected to being hyper or not, but it’s nice to know someone else out there has the same problem.

-Julie

[Julie3588]

in reply to: Please tell me yoru RAI story!!! #1066414

I was not too happy about getting RAI either, and terrified about gaining a ton of weight. I had RAI this past June after coming out of a remission period from ATDs. I went hypo only 2 months after RAI and was started on Synthroid 112 about 4 weeks after going hypo. I went slightly hyper on that dose and am now on 100. Before getting RAI I lost about 10lbs, then gained about 15-20lbs over the 2-3 months after RAI. When I was originally on the ATDs a few years back, I had lost over 20lbs from being hyper and then gained 30lbs on the drugs. I think some of the weight issue has to do with not being able to really exercise during these periods, and I’ve noticed I can’t eat quite the same amount as I used to without gaining weight. I feel like trying to lose weight now is an uphill battle. I’m about 10-15lbs heavier than I’d like to be right now but I feel MUCH healthier. I’m on the taller side so I really don’t notice it too much. I’m hoping some of the weight will come off with time but I’d rather be 10lbs heavier and feel good than skinnier and feel sick again, I just like to think that 10 extra pounds is an excellent price for health ” title=”Smile” /> If I ever start to feel bad about the weight, I just try to remind myself of what my body’s been through and that if it needs those 10 extra pounds to function normally, then it can have them.

[Julie3588]

in reply to: Lessons from Graves’ Disease #1066655

Although I am sometimes angry about being diagnosed with a disease like this so early in my life, I cannot help but appreciate how much Graves has taught me about loving life and realizing how precious being healthy is. Not many other 20-somethings get the opportunity to receive such perspective so early on in life and I am so grateful for being able to appreciate each day for all the good that happens. I don’t know many other young adults that appreciate their health as much as I do ” title=”Very Happy” /> That lesson is priceless.

-Julie

[Julie3588]

in reply to: Need some encourgement please! #1066694

I can definitely relate to the frustration of going back to exercise after bouts of being hyper.

I remember the first time I attempted to exercise after being hyper for over a year. I was being stabilized with ATDs and got onto a stationary bike at the gym for 15 minutes. I ended up feeling incredibly sick and wobbly by the time I finished and felt sick for a few days after. I could not believe that I had become so weak. I was 19 at the time and had a regular gym routine and had previously figure skated semi-competitively. It took almost a year of rest with occasional walking and then later adding 3 months of 3 times a week yoga and persistent walking to even begin to feel "ok". I was at least able to go to the gym again without fear of collapsing.

When I went hyper again during a relapse this past summer I hadn’t even gotten back to my normal fitness level and it felt like I was being kicked to the ground after working so hard. I had RAI in June and have completely lost the fitness I gained during my short remission. I’m a college student so I don’t really have a choice but to walk all day and this has helped, but some days it just wipes me out to the point that I have no energy to do anything else. I am trying to incorporate yoga back into my routine since it helped so much the first time. I like that I can make it as gentle as I need and that it is a completely judge free environment. I hate going to the gym when I feel this weak since my fitness level is closer to that of an 80 year old instead of someone that’s 22! I’m like an old women trapped in a young body, lol.

[Julie3588]

in reply to: new to replacement – couple of questions #1066904

At first I too was taking my synthroid whenever I happened to wake up in the morning and then had to wait the hour before I could eat anything. About two months ago, at the suggestion of another GD patient, I began setting my alarm for 6am every morning to take my pill, and then set a second alarm for the time I actually need to get up. Besides being more convienent in that I can eat breakfast as soon as I wake up, I have also noticed that I feel more stable during the day now that I take my pill at exactly the same time every day ” title=”Very Happy” />

-Julie

[Julie3588]

in reply to: teenagers with graves ? #1067203

Hi Ashley,

I was 19 when I was intitially diagnosed with GD, just finishing up my freshmen year of college. I think I had it for quite awhile before that though, my guess is throughout my senior year of high school. I am now 21 and in my fourth year of college. I had RAI this past June after the ATDs failed to work, and still trying to feel "normal" again.

I know I’m a bit older than you and not exactly a teen anymore, but I’d be happy to chat if you’d like ” title=”Very Happy” /> Going through senior year of high school and getting through college all while trying to control this disease can be a challange. It’s hard to find people around our age to talk.

Let me know if you have any questions and best of luck feeling well again!

-Julie

[Julie3588]

in reply to: Newly Diagnosed…Would Love to Talk About Shared Symptoms #1067283

Looking back, I do remember getting chronic bloody noses right before I was diagnosed. This continued for quite awhile, about a year, until my levels were normal. I have no idea if it had anything to do with Graves, but I suppose it could have. I’ve also noticed that my already sensitive skin got way worse once I got Graves. It’s chronically itchy and I get hives once in awhile now. My endo said the skin was definitely related to Graves. Hope this helps ” title=”Smile” />

-Julie

[Julie3588]

in reply to: Help! Losing my hair!!! #1067407

The brush story sounds familiar. I have thick curly hair too and I almost want to just stop brushing it, lol. I feel like I’m going to clog up the vacuum cleaner if I try and clean my bedroom carpet. Glad to know I’m not the only one going crazy over this. I was convinced the hair loss was all in my head (pardon the pun) before I read on here about others having similar problems.

[Julie3588]

in reply to: Help! Losing my hair!!! #1067404

I received RAI in June. I am on synthroid right now, trying to find my right dose, and have just recently noticed A LOT of hair loss. I don’t have bald patches or anything but if I brush my hair, locks of it come out. My hair has definitely gotten thinner, luckily I had thick hair to begin with, but this is scaring me a bit ” title=”Sad” /> I talked to my endo and he said it wasn’t the synthroid, just that I may experience "abundant hair turnover" for awhile. I’ve read that it can happen from levels changing but I have never experienced hair loss like this before (and I have been in and out of remission for a couple of years now). I worry that it won’t grow back. Does anyone know how much hair loss is normal? I literally feel like this is the last straw in my patience for this disease.

[Julie3588]

in reply to: Scared to eat too much… #1067316

I too was terrified about gaining weight. I suspect that I first went hyper my senior year of high school and I got down to around 125 (I’m 5’7") by the time I was finally diagnosed freshmen year of college. I was definitely not a healthy weight, my bones were popping out and I looked sickly, I could barely stand up. I was put on Tapazole and actually went hypo when on it. Over about 2 months I went up to around 155 which was a bit scary but I can honestly say besides feeling a bit self conscious, being a teenage girl and all at the time, I felt worlds healthier. I’m now a senior in college and I relapsed a few months ago. I lost about 10lbs during this time. I got RAI over the summer and have been trying to find my "right dose" of synthroid for the last 2 months. I am around 150-155 now depending on the week. I’d like to be around 145 but I know that I have to let my body heal before I jump into exercise just yet. Since my Graves started during the end of puberty I really have no idea what my "normal" weight is. I just try to tell myself that as long as I’m in a healthy weight range I should be kind to my body. I’ve definitely noticed that being hypo makes me retain a ton of water weight, sometimes up to 10lbs. This usually melts right off as soon as I am no longer clinically hypo but those last few pounds are the tough ones. I feel like I could starve myself and not lose a pound. I’ve just accepted that this is where my body had reset itself. There’s no sense in fighting it.

Like ewmb said, as long as you FEEL healthier, be kind to yourself about weight. It’s better to be 10lb heavier and healthy than skinny and sick. It can be a bit embarrassing. I remember returning to school after the summer 20lbs heavier and all I wanted to scream was "It’s the disease!" In reality, everyone was telling me how much better I looked because I was now healthy. It’s easy to beat yourself up about it but I try to think of the weight as a sign of health. As long as you maintain a healthy lifestyle, you shouldn’t have a problem with being an unhealthy weight.

[Julie3588]

in reply to: New to here, Graves, and life #1067649

Hi Roberta,

I just wanted to say hi and welcome. I am 21 years old and currently in college. I was 19 when I was finally diagnosed with Graves but I suspect that I had it since senior year of high school. It can be very difficult at times to be a young person with this disease because most of the time your peers will just not "get" what it means to be sick. Some may even assume you are using this an excuse for having a hard time keeping up with school or having no energy to get through the day.

Get as much information as you can about this disease, especially before you go off to college! While student health centers can be helpful, they usually do not understand the scope of thyroid disorders. I keep in direct contact with my endo while away at school. Please know that you will get through this! I am working on my bachelor of architecture and am slated to graduate on time in May 2011, even after hearing that I wouldn’t be able to manage my disease with such a stressful major. It is important to find an endo that will work with your school schedule to that you do not have to miss much and fall behind.

Good luck.
-Julie

[Julie3588]

in reply to: Effects of RAI #1067708

I received RAI in June 2009 and went hypo in August (2 months later). I gained about 10-15lbs while hypo but now that my TSH is "normal" (1.82) due to taking Synthroid (.112mg/day), I am back to my normal weight. I did not change any lifestyle habits so I assume it had to be the meds bringing by levels back to normal that brought my weight down. I had a similar weight gain when I went hypo after being on methamizole but as soon as I went off of it I returned to my normal weight. I can only speak for myself, but I have found that as long as I am in the normal range and feel decent, I do not have a great deal of trouble maintaining my weight. The weight just seems to melt off after I am no longer hypo. Hopefully this helps, I too was terrified by weight loss horror stories before I got RAI ” title=”Smile” />

[Julie3588]

in reply to: New to Methimazole #1070624

I was on Methimazole for about a year after I was diagnosed with GD. I was originally on PTU but was allegric (horrible hives). The Methimazole put me into remission for around a year but I have since relapsed. I did RAI 4 weeks ago and am back on 10mg Methimazole to keep my levels in check.

The first time around, the Methimazole made me tired and emotional and I gained 30 pounds in about 8 weeks, which was horrible. I felt bloated and generally bad about my body. It turned out the be mostly water weight. I initially lost 25 pounds from being hyper, from my original 145ish to around 120. I then went up to 150 so quickly, it was uncomfortable. The Methimazole helped so much though that I oculd deal with that side effect. Once I stopped the drug I lost around 10 pounds right away and have maintained. Now that I am on it for a second time I have not had a weight problem since I know what to expect and I am careful about diet/excerise. And don’t stress out too much about weight, because IT IS THE DRUG and IT WILL GO AWAY.

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