[Hopeful23]

in reply to: I am new here #1074719

well, have you gone to your endo? It could be as simple as maybe lowering your synthroid dose or needing the RAI but im sure surger would be recommended…Hope you get the answeres our looking for. There are great people on here with good accurate information…

[Hopeful23]

in reply to: PTU QUESTIONS! #1074752

So im reading this and laughing because I am on PTU and when I had my four week check up I told me endo that I have this awful tast in my mouth like I just licked a metal pole. I said its actually made me vomit a few times as well as gague every time. He said that it was a very common side effect and prescribed me phenagryn. My endo also recommended putting the pills in like applesauce or pudding. I tried it and I have def noticed a huuuuuge difference. You have to do it quickly though so the pills dont get too wet but I swear it has made a dramatic difference. I just to take the pills and have food ready and or like coke or water to quickly chase it with like I was taking a shot. LOL….Ohhh the stuff we go through with this disease right? Well I hope we can all look back and laugh at this….Hope everyone had a great holiday!!!

[Hopeful23]

in reply to: New Here- My story #1074887

Wow, first off. I can’t believe you stopped taking your meds. I have no insurance but still go to the best drs in my area because they can’t refuse treatment due to lack of insurance because this can be fatal if left untreated. You may had to have gone to like a clinic that treats people based on like income or something but I lost my insurance from graves disease. I am only 23 so as I do have very severe symptoms as the weakness in my legs but its not to your extreme. It took 2 years to diagnose me. I def understand you emotional liabitly and your struggle with finances, relationships etc cause if I didn’t have my student loans from college I would have lost everything more than once. My endo never pushed the RAI on me but i think its due to my age. He immed said your thyroid has to come out so ill set you up with a conslutation with a surgeon. I did research cause I know this type of surgery can have serious complications and lucked out that she specializes in thyroidectomys and has over 15 years experience and has less than 1% of her patients that have had complications and the ones who did were in their 70-80’s. My levels are def being monitered before surgery cause my levels were 17.4 and .005..10 days before surgery I have to take some type of pottasium iodine (radioactive free) pills that helps prevent thyroid storm during surgery plus i was told they give you something IV before operation not sure what it is though..(always forget to ask those ?’s). I seeked thearpy recently with a psychologist that specializes in illness that cause a delibitation life stlye and other symptoms such as anxiety, depression and emotional liablity….I would just stay proactive and TAKE your meds even when you feel GREAT!! This forum has a lot of great people with very helpful information as well as personal experiences, symptoms, and stories that may help you in all aspects of this disease ( as you have stated) Stay strong and know your limits…..

Happy Holidays
Hopeful23

[Hopeful23]

in reply to: Graves and Weight… #1074934

ohh no…I don’t want to gain the weight back either. I am finally down to the size I was before all this. I gained tons of weight and I guess at its peak lost it all quit fast like 30 lbs in a month fast. I am getting my thyroid out sometime in jan if my levles climb enough…and i guess the weight gain is better than this crap lol….i will def work out after this is all in control I just couldnt cause my heart rate was out of control..so when im hypo will my heart rate be undercontrol with out beta blockers…?? Also, will i be on a beta blocker after surgery cause i have such rapid heart rates??

[Hopeful23]

in reply to: New Thearpy News…… #1074941

Wow, this is all so interesting. I am so happy that my case will just be a thyroidectomy because I dont think I could deal with all that. I mean i know surgery has its cons but for me personally even if he recommened the RAI I would have gone the surgical route….I have to much anxiety to take that much and know that it could come back and cause more complications. I just want it out and call it a dang day…id rather deal with hypo cause I see my sister go through it and she feels a heck of a lot better than I do on a bad day and thats usually because she forgets to take her pills…lol…thanks for all this information it really puts life into prospcetive….im just eager to get my life back and become a 23 year old college student..thats all i want ” title=”Sad” />

[Hopeful23]

in reply to: hyper to hypo- what now? Discouraged #1074957

Wow, that seems to be a lot to deal with. I was put on tapazole and the same thing actually happened to me. I was only on mg and when I told my endo what was going on he told me to stop it and to come in for blood work. I went in and my levels(not sure whic ones) were hypo levels so I went off of all meds for about 3weeks and started to feel hyper again and boom I was and was put on PTU. So now im just waiting to see if these meds work. I take two every 8hrs. Its annoying cause the tapazole was once a day…I would just keep being proactive, dont just settle for ‘its your thyroid’ I mean if that was the case I would prbl be dead right now cause I was told "its just anxiety/panic’ and what do you know IT WASNT…lol…I hope you feel better because I know exactly how you feel, its hard and tough and sucks more days than it doesn’t but keep your head up and fight cause one day this will hopefully be a thing of the past… ” title=”Wink” />

[Hopeful23]

in reply to: Touch #1074947

Well, considering I dont know your marriage outside of what you told us. I can however relate to it. I went through a stage where I hated to be touched cause I felt tingly as it was and it made it worse when i was being touched…I then however got on my meds and that went away pretty quickly so it could be how she feels or your marriage or both. I would go to a counsler if I were you. Marriage counsler together and maybe her alone, this isn’t a great disease to understand or deal with…emotions are all over the place and your the closest one around so of course you get the short end of the stick…hope it all works out….just be understanding with her the best you can…she will feel better in time.. "through sickness and in health"

[Hopeful23]

in reply to: Having a really bad day……please help #1075030

No, I didn’t take anything to heart that was said. I know we are all on the same boat in one way or another ” title=”Neutral” /> I was just thinking if these people say one day it will be better than maybe I should just let this disease run its course and hope I feel better sooner than later. I just am trying so hard to work, stay in school and have somewhat of a social life I mean I am 23 years old and all i can do is work little shifts and sleep. It’s just like okay I want my old life back where I worked 40hrs a week, had a social life and sleep was 6hrs if that and was full of energy 24/7….I was a competitive dancer, gymnast and cheerleader and now I lay on my bed hoping one day just one day ill make it through a shift at work, wake up in the morning with a list of stuff to do and get it all done instead of two of the 10 cause i so anxious or tired…..Im suppose to be at work at 6 tonight and have no energy or concern to go. All I want to do is lay here on my bed and curl up or go to my bf’s house and watch tv with him till i fall asleep…I get my student loan in jan so its like i could let all my bills go till Jan 8 08 and not work and not have money for christmas or new years or I could tough it out and wait till i get my loan and quit. I filed for disability so hopefully that goes through which I doubt it will cause im ONLY 23….BLAH BLAH BLAH….what can i do except stay strong….well i have to go to work now so ill chat with you all later thanks again for all the kind encourging words/stories and reading my posts….. ” title=”Wink” />

[Hopeful23]

in reply to: Having a really bad day……please help #1075026

Well I better jump on the optimistic train…lol…Well, first off I wasn’t trying to sound like I was the worst one on here I was just simply stating it was a bad day and was venting. I know there are others out in this world who have it much worse (ie. Cancer etc.) However, I am 23 years old and have been going to the dr for 2 years and was told its all in my head. I lost a great job, lost my place in my nursing program, lost a boyfriend and lost so much weight I looked skeletal. I just got diagnosed in Late Oct with hyperthyroid and GD in Nov. I am still new to ‘new’ symptoms and types of treatments and was just merely looking for comparison stories. I understand you are a strong person but unfortunetly my strengh has diminsed over the past two years. Im not writing a guilt story im just telling you why i have yet to come to terms with anything because there is more going on with me than GD but the dr’s are now just blaming everything on GD and im sick of it. I just have to be proactive with myself until I find the answers. Thats how I found you guys because I didn’t settle for this is this because of that…Thanks for all the responses tho…every now and then its good for a smack in the face…lol….

Happy Holiday.

[Hopeful23]

in reply to: How many are like me? #1075116

Omg, this goes to the original post. I am 23 about to me 24 and I was just diagnoes like a month ago but had it for at least a good solid 1.5 yrs. My levels were 1.0 and .002 I know how you feel. I was put on propanolol and got jaundice then I was put on tapazole and it gave me severe shakes/low blood sugar. I am now on PTU and no beta blocker because they actually speed my heart rate up (weird). I take two pill every eight hrs and for over a week now and still feel as if I wasn’t taking anything. I am to the point where my social life, college career and job are at any point going to collapse. I am always tired, anxious,and feel out of loop. I get these bouts of extreme energy than I crash. I was just wondering what your journey has been like. We are the same age so i would really like to get your story from a-z. I was freaking out when I read your post because I was in and out of the hospital and all they said was your having panic/anxiety attacks. My dr then looked over my blood work for a year and thank God her partner foud it when I went into her purely by mistake. My thyroid has a 2cm nodule on it and is 5x its size. please respond back with ur story from day 1 to know. My personal email is Kmw55@uakron.edu. Also if anyone else wants to email me with any tips advice stories or current personal issues I am open to anything.

[Hopeful23]

in reply to: 23 and just diagnosed with Graves Disease #1075172

okay, thankyou. I was just worried because today im having palpitations and I took my medicine today so I was just confused. I also have been unpacking and going up and down steps to take boxes and laundry down so that probably is another reason im sure. My dr scheduled me for a four week follow up after he called me with my results that confirmed my graves disease about 1.5 weeks ago. So feeling this way is "okay" then…Cause I would call 911 everytime I felt this way in fear of passing out or heart attack. He told me I was too young and healthy to have a heart attack. I just never know when the right time will be to call. I always read stuff about the thyroid storm and it says if you have these symptoms seek medical attention and I have all those everyday…LOL..I am just being so paranoid about this I guess cause its so new and unfamiliar to me. I can’t thank you all enough for such great information and support.

Hopeful23

[Hopeful23]

in reply to: 23 and just diagnosed with Graves Disease #1075170

So Does anyone actually have an exact week they really started to know a difference from being on ptu.

[Hopeful23]

in reply to: 23 and just diagnosed with Graves Disease #1075169

Bobbi, Thankyou for your response you and others have really gave me a glim of trust in this medicine. I will take it….LOL….its just so scary….I can be so weak when it comes to me and so strong for others. thats the beauty of a Nursing Major I guess….lol

[Hopeful23]

in reply to: sort of a mystery #1075158

Wow, I really know what your going through. I have the same symptoms and facing the same problems. I however just started medications. My dr said that there would be a chance where the medicine wont work and other treatments such as killing the thyroid or removing it would result. Im not really educated on this disease yet but all I can say is be pro active on how you feel and get other opionions until you get the results you want. It took them two years to diagnose me because I kept going to different people and getting tests done over and over. Dr’s are quick to make you seem its trivual but you are the only person that knows your body. Like i said i understand your frustration and the life changes you have made but dont give up hope keep trying. I would see what else is available to you. Not everything you try the first, second, third or fouth time will work it takes time, patience and trial and error. Unfortuetly graves disesase doesnt give much time for trial and error due to is severity and symptoms. Just keep trying and log everything down so your dr has it in writing and can look at it. I was leaving key symptoms and feelings and even diets out of my symptoms and once i really wrote it down and told the dr everything it took them 10mins to diagnose me. Its hard and it can suck more days than people understand but just keep your head up and be pro active. I also wanted to know how you got on disability because I need to look into that.

[Hopeful23]

in reply to: 23 and just diagnosed with Graves Disease #1075166

Today has been another hard day for me. I just left work early because my body was shaking so bad I could barely walk or hold on to anything let alone help customers. I pulled over to collect myself on my drive home because my mind was racing and I felt my body was going to just give up on me. I thought for sure I wasn’t going to make it home. My heart was pounding, my legs were shaking on the gas peddle. I was sweating and i had awful pressure in my head from blood pressure going up im sure. I didnt take my medicine today because im afraid to take it. I usually take it when im around friends or family because if something happens I will be able to get help right away. I know I shouldnt take my med’s when I am "okay" to take them, its just i have had such bad reactions. For example when I was going to the dr at first they gave me lexapro because they diagnosed me with generalized anxiety disorder with panic attacks. I had a seizure from that. I was put on inderal (propanolol) when lexapro didnt work and got jaundice from that. I was put on labatelol and it speed my heart rate up and lopressor made me pass out every time i took it. I no longer can take beta blockers so we are hoping the PTU was gonna bring the heart rate/palpitations down sooner than later. So I know have extreme anxiety with taking meds, every time I go to take the PTU I think im going to have a seizure or pass out and im going to be alone and have no one to call 911 for me. I always have my phone open and 911 put in so all i have to do is send talk and i know help is on the way. One day EMT was at my house 3 times. They have ran runs on me so many times they know who I am as soon as they hear my age and complaint. I have finally found a great PCP and a great Endo I am just having prblms trusting the medicine. I google everything my body does or feels and find out the worst on the internet. I go to bed thinking im not waking up and ill cry myself to sleep sometimes or go and watch tv till my body just falls asleep because when im awake i know im alive. I know it sounds weird but i think im geting the emotional liablitly the most from this disease. Well Im gonna go try to convince myself to take my medicine.LOL!

Thankyou Mamabear and ski for all your kind words and concern.

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