OK lets see here, hope this helps anyone that has this nasty little thing they call Grave's! In 2002 I went to the doctor hoping that he could help me because I was very very sick, I wasn't really sure of what but I sure knew something wasn't right. I had been working as a cashier in a restarant, and really wasn't able to do that anymore. My husband and I were having problems and the more stress I had the worse I felt. At work I couldn't even count change back. I shock so much I wasn't sure what was going on. I felt like my life was running in fastforward all the time. The more I walked the people to be seated, the more I would perspirer, I wasn't out of shape at all and I would get winded. I couldn't understand what was going on. I couldn't even mop the floor without turning bright red in color. My hands and feet started to peel. My hair was falling out in large amounts. I had what I thought was dandreff(which I had never had before). I had lost 25lbs in a month. I felt so tired, but never could seem to fall asleep. I had this ergent need to talk, and it didn't matter about what. Some people even thought that I was doing drugs. So I went to the doc in late 2002. He thought I might be diabetic, so he ordered tests. I did everything he said hoping he would fix what was wrong. He called me the next day and asked me to come to his office. I came in, he made me sit there for I know almost an hour. The nurse came in after the 45 min wait and took my temp and my pulse. The temp was just a bit high(but it was mid summer)and I had a pulse rate of 160 a min just sitting there looking at a magazine. I couldn't even concentrate on reading it, I would get half way threw and forget what I had read. The doc came in and said we got the results back and it wasn't anything to do with being diabetic. It shows that there is something wrong with your thyroid. I was like ok. So now what? He said we need to do more tests. I was so sick by then I would of agreed to do anything even lay there and let him stick a knife in me, as long as he said it would make me feel better. So I went in for the Thyroid Scan and Uptake. Did those, and before the scan was even finished the person doing it said I already know there is something going on here. I was like ok. I wasn't really sure what to think. I got a call that week telling me that I needed to be on medication and that I needed another apointment with the doc. I was ok so they put me on a beta blocker and methamozole. I was like ok. Then while all this is going on I'm still sicker than ever still loosing weight and everything else. I go for the appointment with the doc the next week he said you have a hyperthyroid and there are two things we can do. You can stay on these meds your on, and it could take up to three months for them to start working or you can have RAI, and you should feel better in just a short time. I was like, ALRIGHTY THEN RAI FIX ME NOW!!!!!!!YAHOO!!!!!!!!!I'M GOING TO GET BETTER! THOUGHT IT WAS LIKE THE FLU. Any way we went threw setting it up, and got it all done. They put me on Xanax while on all this, due to rapid mood swings and anxiaty. Told me I had to stay on them for awhile. I was high as a kite. Didn't bother me that I was sick as hell. I couldn't make real choices anyway, I wasn't capable of thinking things threw, so pretty much the doctor made the choice for me. I moved from the town I lived in. Got another doc. they kept testing me because after the RAI I still was hyper for I know atleast a good year. THe skin on the back and front of my hands were turning grey and looked like I hadn't cleaned in months. I worked a job that I had to count money and still shook like crazy. I couldn't walk the stairs at work without my knees killing me. I wasn't sure how long I could keep the stair climbing up, everytime I did them I was so tired I couldn't bearly walk. I saw the doc every two or three months for that year and was still hyper. This is the doctor that told me I had Graves, but never anything about what it would do. No one really ever clued me in about any of it till just resently. I was working 12 hour days driving 1 hour to and from work taking care of my two kids and paying bills and doing house work, and it never seemed to fail I might get two hours sleep and do it all again. The stress got to me so bad I ended up in the ER three times that year thinking I was having a heart attack. I didn't it was anxiaty. It was awfull. I couldn't deal with it. I moved to where my husbands mother was so that I could have help with my kids, because I knew I couldn't do it all by myself without help. I tried everything from diet to no caffeine, to exersice. I still felt like crap. Got a new doc. He checked me out but wouldn't do the tests, cuase of cost, I didn't have insurance. I felt awfull, but not as bad as I did before. I was now really depressed. He put me on Zoloft. My husband and I got divorced and I moved to my hometown. New doc again. This one was a family friend, and I had gotten a job that had insurance, so she tested me. My TSH was 94. She said it's a wonder I was still working and taking care of my kids. It was a wonder half the time I couldn't even spell my name all the way without loosing my place. Get half way threw and forget what I was even doing. She started the process of getting my meds right. Took me off Zoloft. Every week for almost a month she adjusted the Levethyroixin. The second month we did it every two weeks. Tests done everytime she changed the meds. She got me to feeling as normal as I had felt in over two years. Although she thought I was bipolar, not sure that I really am. I continued on with the meds for another year, moved yet again due to marraige. New doc. Been tested every year since. 2005 Got pregnant. Got Free T4 and TSH done during pregnancy. Every thing was fine had to have it adjusted once during pregnancy. Had child one month premature. Due to rapid heart rate. She turned out to be born with Grave's. Found out that during pregnancy the doc should have tested the TSI, but never did. So I changed docs again due to that. The new doc was my sergeon. She has check my leavels twice since 10/27/05. Then I went to the eye doc. My eyes had started to bother me while I was pregnant. They hurt when I move them to the left or right or looked up. It's so painfull I wouldn't even look that way without moving my head now. So he checked me said I had GED. He thought I should be tested again to see if I had active Grave's, so he called my doc. She tested me. Said she was doing a thyroid study. Everything came back in normal ranges except the TSI 296 and the normal is 130 or lower. Now I am on steriods for my eyes and the skin is starting to act up again. The eye specialist said that if the steriods don't work this time(which I have been on them before and it flaried back up, causing worst things, like the burning and double vision)I will have to see an orbital sergeon. So here is were I sit at this time. Hope this helps someone. The two things that I have learned along the way is TEST Results are important, and don't let the doctor you have do anything without asking lots of questions. Make sure you have a doc that will listen to you.
Hi Lookin4aclue, Wow, have you been put through a lot!! I feel for you - whenever I read how much others are going through & have gone through it puts my position way up there on the "it's not so bad" list. A lot of members have read this and I am sure it will help some that are starting out with thyroid problems.
Hang in there!!
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
Thanks so much for the kind reply. I don't look at it as going threw alot, although the one thing I wish I hadn't had to go threw was having my daughter born with Grave's. No one ever told me that there was a chance she could of gotten that from me, or I would have done everything I could to make sure it didn't happen to her. I told my doc while I was pregnant that I had Grave's and that I had RAI, and she never once checked the one thing she should have. Any one with Grave's that has RAI should know that even if your on medication for being Hypothyroid it is VERY VERY important to have your TSI tests done in the first and third trimesters!!!! It's rare to pass it on to the child, but it's better to have the test done, than to have the child born with Grave's. It can kill them, make them retarded, and alot of other things, but those would be good reasons to have those tests done.!!!! AND BE VERY PUSHY ABOUT THEM!!!!!!!If they won't do them find someone that will, or bring the information from online that would change there mind!!!!
I know thyroid problems - hashi's and graves - run in families. What would they do if they had done the TSI tests? I don't have graves and am WAY too old to have children, but for the others here that are wanting more kids, what would your suggestions be AFTER they test you when you are pregnant? Is there anything you can do to prevent it?
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
I have asked my new doc that same question, as to treatment that they should do, and because she is connected to the other doc and hospital, she has always sidestepped it. Think she is covering there butts!!! Anyway I have read in several books and things that there is treatment but they never say as to what. I am planning on getting a new doc that is a specialist and plan on asking him this same question. All I know is there is treatment, and that they should be alarmed if the pulse rate in the fetus is 160 or higher!! First sign of Grave's. They can also do A Sono to dignoise it as well. And they should also take cord blood samples after birth, they can test it then, because some infants don't present Grave's until a week or more after birth, and in infants the longer untreated the worst it is. It does pass, but the treatment for them is complicated a bit, and not alot of doctors have ever seen it before. I had four specialist working with my daughter and it took two weeks for them to find out that she had Grave's because only one of the four had ever even see it before!
I didnt want to ask because i wasnt sure if it was a touchy subject but how is your daughter doing? how old is she now?
How have you been dealing w/ that? I can only imagine the difficulty? Is she on meds & does she suffer from the same symptoms or is it different in babies?
I hope she is doing well!
God bless! Children are Too precious!
My daughter is now 5 months and is doing well, she did have alot of the same things. She was very intollerant to heat. They had her under a heat lamp, and every time they turned it on, she would turn bright red, and get what looked like a rash. Bright red welps on her whole body. She had a very high heart rate, before they knew what was wrong they had her on morphen, to slow it down until they could figure out what was wrong with her. She had the jerky movements, like you would if you were hyper and shook alot. She didn't eat for almost two weeks(they had to put it in threw the tubes) She was on sodiom, because it was low. She had a very low platelet count(which happens in Grave's, even in adults). She was in NICU for over 18 days, and came home and we had home health care come out twice a week and do tests. She was on a PTU and propananol. We had to keep a very good look on her, because if she went hypo it could make things worst. She has the Stairing gaze still, and I have taken her to a specialist for her eyes, because she doesn't close them all the way. They say she has lid lag, and lid retraction. She had to have xrays of her skull due to Grave's for some reason in infants Grave's can cause there skulls to close before they should. Lucky us, she seems fine in that area so far. She only was on the meds for two months. So she has been off for three almost four months. All her leavels seem fine as of now. Had those done two weeks ago, just to be on the safe side. She is still a bit small for her age, but seems to be developing on schedule so far. Pretty much it's a wait and see game now. She was born with one of her heart valves not all the way open, and it was due to being premature, so they were keeping a close look on her heart rate, that is why they even noticed anything else. It took two weeks to diagnoise it. All her vital signs went crazy when it really hit her hard. I was so thankful for the one doctor that had seen it. She has been in practice for over 22 years and only delt with it 2 other time.
Last edited by lookin4aclue; 04-20-2006 at 12:11 PM.
Thank you! I guess this story is my story and my daughters story. It feels good to let people know that this can happen. I just hope that it might help someone else. I didn't know this but did find out that thyroid problems can run in familys. Had I know that I might have found out I had Grave's long before I did. My aunts on both sides of my family have hypo and My cousin has Grave's. I wonder since my daughter has gotten it from me, and it was just from passing the antibodies to her, if she might actually get it later in life. One more question for the doc. Also thanks for keeping us in your prayers.
Did your doctor ever really tell you what kind of things might happen to you from having Grave's. It's like they say here you have this now figure out what it intells, or at least that was what every doctor I ever had did. It's kind of like here is a name for what is going on with you, hope you figure the rest out yourself.
Nope noone told me butt all!!! I was handed an A4 size piece of paper about hyperthyroidism and that was it! Luckily for me l had suspected for a long time and had done all the homework pre diagnosis then again with graves your always finding out something 'new'