Hi...I'm new to this site and to Graves Disease. I was diagnosed a few weeks ago, started on 10 mg of methimazole, got over the first wave of side effects. Two weeks to the day I got a terrible cases of hives. My endo is now putting me on PTU. I've read about PTU and see that a common side effect is hives! It makes no rational sense to put me on it. Has anyone else had this experience?
I was also allergic to Methimazole after having been on it for about 3 weeks--I got hives and very itchy palms. I was put on PTU and have tolerated it thus far--that being over 10 months. Try not to worry. It may be fine for you too. Best wishes:)
Thanks so much for letting me know how you are doing on PTU. I read that there are bad side effects...short term and long term on PTU. One of them being a lowered immune system. A long term effect is liver damage. How often do your get blood draws to check on both of these side effects?
There are always side effects to medications. I agree that there can be some serious side effects to PTU but hopefully your Graves will go into remission and you will not need to be on it for too long. I was started out on PTU 50 mg three times a day and then had to be increased to 100 mg three times a day to control my symptoms and to get my thyroid under control. Luckily I did not experience any major side effects . It did make me quite tired till I got use to the med. My doctor told me to call immediately if I got a sore throat or felt flulike to check for agranulocytosis (blood disorder). It does say it can lower your immunity but I will say that I work in a hospital with many sick people with multiple infections (pneumonias, bacterial infections, etc) and I have been able to stay relatively infection free--except for 2 colds. Also a possible major concern like you mentioned is liver damage--my doctor said that is relatively rare. I suppose it is all "relatively rare" until YOU get it. I believe it is said that the highest risk for liver failure is within the first 3 months--I am thinking that is because for some mds they put patients on high doses. My doctor started me low because I have always felt that since I never took any pill for anything , except for tylenol for a headache--I always felt a little of any med went a long ways for me. My doctor agreed to take it slow. The endocrinologist I saw after about a month (it took that long to get an appointment), had said that he usually starts people on very high doses to get a quicker control--that scared me and being a nurse and knowing what I do I would never have agreed on that high of a dose. I tolerated the 100 mg three times a day which was the normal max dose ,I think the endo said he uses much higher doses than the 100 mg initially. I would never agree to that. I can see if a person is given really high doses then it might cause liver failure--but I feel that if the body has been out of "whack" for a while then it should be gradually gotten back to normal not someone slamming on the brakes and have the whole body being thrown into a tail spin. The thryoid controls lots in the body.
Learn as much as you can about your condition. Knowledge is power. You are going to have to be the one to monitor your symptoms and let the doctor know if you are experiencing problems. While I was on the 100 mg of PTU three times a day my total t4 dropped to the lower end of normal and I experienced hypothyroid symptoms. I didn't know what was wrong except for that I felt awful. I felt like crying most of the time and otherwise I felt like I was a zombie. I had my MD do a lab check and sure enough it was too low for me. He had me back off on the PTU and we kept checking labs and decreased more till I was stable . I think they advise to recheck free t3 and free t4 levels about every 3-6 weeks and sooner if symptoms are worse. As far as checking my liver labs, I think they are supposed to be checked periodically--mine have been checked twice in the past year but they may recommend more often than that like every 3 months (?). I have found that I have to be on top of my symptoms and talk with my md if all is not right. Be proactive.
Thanks for all the information. I just picked up my PTU. Right now the doc has me stating out on 50 mg 3 times per day...just like you. I'm going to take my first dose in about 30 mins. I'm just like you...never taken anything stronger than a Tylenol...except for all the benadryl I was popping last weekend to get rid of the crazy hives I got from the other meds...lol. I've been feeling off the last few years and just thought it was because I was getting closer to the age of 50...which now is just a few months away. Turns out that all my symptoms are the same as GD... although I am sure some are due to age....lol. But I've never been typical of my age so it all threw me for a loop. Luckily, I'm one that takes charge of things...especially when it comes to my health or anyone else in my family. So I plan to learn everything I can. Is there any book or website that you recommend?
You're welcome for the info....I came by most of the info by personal experience. Yeah I failed to mention that I also took benadryl when the hives had initially started too. Lol ..your story sounds like me too...I will be 50 in December. I also thought that with some of my symptoms (they had been going on for a few years at least) that it might be perimenopause with the heat intolerance and sweating, the irritability, the fatigue, etc. I have always been a speedy person but it just got more intense...people would tell me to slow down and take a break--I had always felt the busier I was the happier I was. I can now see the difference...man I was doing the work of two people--lol. Yes the perimenopause/menopausal symptoms are similar to GD. For me I knew something was not right when I had been kicking butt at the gym and I thought my heart rate would be low (that would show great fitness level for most)--my resting heart rate was 108. I kinda dismissed it till my hands got shakey..then I thought gotta stop that morning cup of coffee--this concerned me because I need steady hands for my job. I had an inkling that it was my throid because I googled high resting heart rate up popped hyperthyroid.....but even then I thought Naw can't be me. I was going to make an MD appointment and before I did --wham I felt awful one day at work--I had a splitting headache (never usually get one) --I felt dizzy and then the heart pounding started--rate 160-170--on the insistence of one of my coworkers I was leaving sick--I hated to leave them short but I felt AWFUL. I stopped by the ER at the insistence of another coworker--what I really wanted to do was go home and rest to get rid of the headache. I was fortunate that the ER MD I saw also had GD and he recognized the symptoms right off. I had been in bigtime denial. Not any more now...I try to stay on top of any symptoms I have and I talk with my MD--I have found that I am usually right that something is off. I just never want to get back to the mess I was last year--I was out of work for 5 weeks--there were days I could not even walk across a room in my house without having rapid heart rate and chest pressure--I had gotten so weak from the muscle wasting from the GD I could barely pick up a gallon of milk and my legs would give out going down stairs. (once the GD was under control I worked hard to get my muscle back) . I had always been told that I looked at least 10 years younger than I was--I always tried to keep in shape at the gym. I thought I was healthy. I had more than my fair share of stress--my father died 3 years ago, I am a nurse of a very busy unit ( I do love it though), 2 kids in college, etc. Stress is not good for Graves--as a matter of fact it can make it worse.
I really don't know of ay good books abut Graves--I have checked the bookstore and skimmed through a few but I can't think of their titles at the moment. Put a tread up to ask if anyone knows of any. I have gone to many websites but none in particular standout--sorry.
i think you can be my long-lost sister...LOL. your story is so similar to mine. same thing...very athletic, very fit and everyone tells me i look 10 yrs younger too! i've played sports my whole life ...up until 1.5 years ago, i was on an indoor womens soccer team for that was for 30 yrs or older. i, however, was 48 at the time and definitely the oldest on my team. so when all the symptoms started, and a few other life changing events, i had to quit. i also work and do everything at lightening speed. i also, stated menopause around the age of 43. i haven't had a period in about 5 years...both my mom and my sisters started early as well so i didn't think anything of it.and talk about stress...mine started around 15 yrs ago..lol. my dad was diagnosed with esophageal cancer, i got married, the husband needed a kidney transplant, my dad's cancer spread to his liver, the husband got the transplant, i got pregnant and then my dad died on christmas day 1999 while i was almost 5 months pregnant with my daughter. i was at his side the entire time of his treatment til he took his last breath. then i had a miscarriage while i was pregnant with twins which i didn't know i had 2 babies in there. i lost one and fortunately my son hung in there. while pregnant with him, my mom suffered a stroke and died 3 weeks before i turned 40 and 7 weeks before my son was born. ( i stated late in life...married at 34, daughter at 37 and son at 40...i was waiting for the right one ). if that wasn't enough we found out my husband needed another transplant . then to top if off, he told me he had had an affair. we stuck it out for the sake of my kids as they were scared about his health. i never thought i'd be the type to stay with a man that had cheated, but when you have kids, you do things that you never thought you would. we went to counseling and things were better. a year after his first confession, he told me that he had a child with her. she was 5 months pregnant when he originally told me about the affair ..he just neglected to tell me about the baby! that was 2009 and out the door he went. so i'v been a single mom since then. i found a job and starting rebuilding my life for myself and my kids. i know, it sounds like a bad made-for tv movie, doesn't it? needless to say,, stress has been my constant companion! sorry for such a long email! i have felt the weight of world on my shoulders but things are slowly getting better. my job is great and i'm doing well, my kids are slowly adjusting although i am sure the therapy will need to continue for years yet...lol. and not only do i need to teach my daughter how she deserves to be treated by men in her life, but i also need to teach my son how to be a man since his father can't serve as a role model any longer. now GD...i'm a tough broad and a survivor so i know i'll get through this too. especially with help from other GDers like yourself. i will post a thread like you suggested about the book....thanks so much and sorry about the life story...LOL. last thought...i did start the PTU and i have a little bit of an upset stomach but so far so good! lets please keep in touch.. you've been such a big help!
Sounds like you had the motherload of stress----I am sure what doesn't kill us makes us stronger. Though I have been going through perimenopause for what seems like 10 years if that is even possible, I have not yet stopped my periods. Crazy I know, a few of my sisters have said that they skip a month with their period--I want to sign up for that plan--lol. I have my period every month for TEN days--I am oh so tired of the length of it--buy stock in tampons and pads because I support the market on them with my monthly need--lol. My MD says it is fairly normal for some and the thyroid might be messing up things too. I suppose it coudl be much worse--some say to ahve a hysterectomy but no thank you I want to keep my equipment intact. As far as stress in my life, worrying about my kids making the right decisions---my daughter is in her 1st year of law school and it's got her right out straight with the sheer volume of work--my son is a junior majoring in civil engineering and he like many other college students likes to have his "fun"--he does well academically but I worry about this "fun." How old are your kids? I am fortunate that my husband has been my rock. We have our disagreements but overall all is well I I cannot imagine life without him. I can definitely understand how you feel about any cheating--my husband knows how I stand on that and it would blow my mind as I am sure if must have yours. About 7 years ago my father was very ill--ventilated for a few weeks and almost died--when he came out of it all he was not the same person for at least a year and during that year my siblings and I had to help my mom for 24/7 for at least 3 months of that taking shifts so that my mother was not alone with my dad since it took 2 people to help him. To compound the problem he had an acute delirium so he had periods of confusion and major irritability, etc This was a very stressful time spending 48 hours at my parents house and working 32 hours weekely at work plus having teenagers and my husband--it was a lot and thought I was invincible. I was doing it all. To compound everything my mother decided to be extremely demanding--probably from the stress she was under . When my father was in the hospital a family member would stay with him 24/7 because with his delirium and agressiveness they would try to heavily sedate him--we could see that they were practically killing him so we stayed to be an advocate for him and to calm him so that he wouldn't need to be sedated so much. I remember that he thought that he was being held prisoner when he was on the rehab unit and the MD there looked Asian and my father thought he was in Korea again in the war---my was talking in a weird language. Anyway can you imagine all the drama and stress with that---some how and some miraculous way after a year he was 90% back to the person who he was before all that mess. After three years of relatively ok health he got sick again and it was another battle in the hospital about what they were treating him for he died of pneumonia after a hellish 4 months of in and out of the hospital and returned delirium. I am still angry about what he went through and some of the doctors and nurses---my mother could have sued on multiple grounds but it would not have brought him back and my father was never the suing type. I spoke up while he was in the hospital multiple times as did my older sister--this was my father and he could not speak for himself so we had to. I still get angry when I think about it. That summer he went through that hell I was in the process of writing a letter about the bad treatment, etc then my father died and I had no energy left to do it and I discussed it with my sister and we decided not to send it. It was so stressful because I worked with many of those MDs and nurses. Some were good but others I will not forget--they will have their day--Karma baby! Since my father died my mother has had 2 knee surgeries and we stayed at home with her for 3 weeks each time doing our 24/7--that was stressful because she wants stuff her way---now really does it matter what pan a person uses to cook something in ? If I am cooking it AND doing the dishes do not let it bother you--that was my mother --it was a constant battle. She is a bit better now. I worry about the years to come with her health because she is not a healthy specimen herself. Anyway as you can see this has been the stress in my life. I live and breathe for my husband and my 2 kids and they are the ones who make my life worth living so I must take care of myself. I want to be around to enjoy grandchildren and grow old with my husband. Since last February I cut down from 3 twelve hour days shifts, to 2 twelve hour day shifts. From December to January I was on the hypothroid side and like I said cut back on the PTU. This helped but it took a few months before I felt alive again--at that time any little stress seemed huge and made me feel physically ill. It was then I decided to cut my hours down. felling better now I had been picking up an extra shift but now I don't think that was so wise since I had been headed hyper again as of August. Back up to 50mg PTU three times a day--feeling better but the labs will tell where I am. This is my life now--it could be much worse. This is a little cross I will bear. It has made me appreciate health and the need to take it easy much more. I am thankful for many things these days--family, good friends , and my doctor who has been there for me when I need him when I needed me adjustments for rapid heart rate, awful shakiness and just plain feeling awful. Ok I will stop so I don't go on to chapter 2--lol
Take your PTU with a full cup of water see if that makes a difference. PTU tastes awful--kinda tastes like tar smells when they pave the road--seriously. Have a great day!
I feel for you guys - I've got Graves too. I've had a stressful life in general but these last few years the stress just kept coming and the good times weren't strong enough and long enough to counterbalance it. I think of it like the "red line" on the tachometer in your car. Too much going at a speed and gear driving your car into the red line burns things out and damages them. So we get Graves. But whaddya gonna do, ya know? Sometimes life makes demands, and we've got no choice but to try to meet them. Now we try to repair.
I agree--life happens--we can't control all of our stresses--like the deaths of our loveds one and yet we cannot desert them at their times of need either--there does have to be a balance and we cannot take it all upon ourselves. At the time of my father's sickness I thought I was doing great physically and emotionally and the people around me thought the same of me BUT I do believe it all did take its toll on me. Looking back though, I wouldn't have done it any other way--my father and my family needed me and I was there for them all--I have no guilt about any of it.
Firefly--sorry I wasn't complaining about the stuff that has happened in my life I was just merely stating what I felt might have led up to my diagnosis of Grave's. Life is what it is--I have come to the realization that I cannot do it all and have backed away from some things so as to lighten my load. I may have lightened my load a bit too much--lol I work 2 twelve hour days a week--of course many times they turn into 14 hour days because of the paperwork--but I have 5 days off and all my friends work 3 to 5 days a week. I am still trying to balance things so that I am not totally bored and so that I don't go to the other extreme and take on too much stuff. I have always been a BUSY person and taking it easy is so not me--lol. I am in the repairing mode. I had all undercontrol (I was down to 50mg PTU daily and was hoping to stop that too) and then I picked up an extra day at work (on multiple occasions) because they were "desperate" and my mother has her knee surgery ,ends up back in the hospital with a clot, and I begin to have old symptoms resurface---so I call my MD and get labs and sure enough I am increasing my PTU--am I that delicate??? I was so hoping to be off the PTU and be pill free. Taking PTU three times a day is very difficult if I am at work...I am human I forget but always take it as soon as I remember it. On days that I don't work I have my cell phone set with an alarm for the times I need to take it. Know any bettter ways to remember?
OMG (as my kids would say)...you really are my long lost twin! your story of your father and the experience you had with the staff is so similar to mine. we did the shifts at the hospital with both my parents. there was never a time when they were alone. i'm the youngest of 3 girls in my family but i am the one everyone turns to to take charge. i can't really complain because that is how i prefer it anyway. so i was the advocate for my parents . my other sisters each have there own gift in terms of helping my parents during those times so we each played a role. i'm grateful to have them in my life. but i was the one who dealt with doctors, lab results, rushing them to the er, meds,etc. i also wrote a 10 page letter (dissertation really) after my father died to the staff telling them all the things that went wrong and how they could have made it better...i'm a project manager and process improvement is my thing! they desperately needed a patient advocate for the family. needless to say, my dad's chemo therapist ended up offering me a job to help improve this patient care flow but i had to turn it down...not enough $$$ and i felt too raw after everything to go t owork in this office day in and day out. the same thing happened to my mother when she had her stroke. i'm first generation here in the US so i had to interpret everything for them. and at some points they would forget their English and start speaking one of 7 languages they knew from their time in Europe. it was crazy! but when they each died, i was heartbroken but i knew that i did everything i possible could to get them healthy and then when that didn't work, i knew i had done everything to make their last days as peaceful as i could. i went from that to taking care of my ex and this kidney issues. now that the marriage is over and i have my own life with my kids, it's time to start focusing on my own health and making sure my kids have all the emotional support they can get.
it's so nice to hear about marriages that survive and in some cases thrive during times like these. i thought that is what i had but it turns out he is not the man i married. so i'm on my own. as i said i started out a little late in like so my daughter is 12.5 and smart and gorgeous and a great athlete. my equally gorgeous son is 9.5. he makes me laugh and answer questions that most 9 yr olds wouldn't even think of asking! They are my life along with my sisters, their husbands and my grown nieces. i'll not only get by but i will thrive i'm sure. at least i am now surrounded with authentic people who i know truly love me and support me. it's a relief not to be married to someone who is living lie after lie. i am actually back to myself as opposed to when i was married to him and only focused on his needs. so ahem to that!
i don't ' have a lot of the extreme signs of GD yet.. i do get tired more often and the heat is crazy with a little bit of insomnia thrown in. but the nervousness and anxiety others talk about isn't something i deal with. but i'll carry on as you do because that's what we awesome woman do!..thanks again so much for finding me on this blog. you've been so helpful. i hope we chat again!
I agree with both you and yakee rn. I never really thought that the stress was more than I could handle. Even when I found out about GD, I wouldn't have said it was stress induced. But in doing more reading, I think the stress IS a key factor. All I know is that I better find a better way to manage the stress. I thought I was but apparently, it caught up to me. So we live and learn...
Sorry it has taken me a few days to respond. Life has been a bit crazy lately. I had to laugh at your description of the letter/dissertation that you wroteto the hospital about the care of your family member--mine was as long as your 9+ page type written. I never sent mine because my father died--I really should have sent it. I work at this particular hospital and so doesn't my oldest sister and we agreed that what's the use since our dad had died , but really it might have opened some eyes. We really must be sisters from another life--lol. I actually have 6 sisters and 1 brother--one big family. My mom and dad worked hard to support us all and give us what we needed. They would have been very rich if they had had all that money they spent on us. I a fortunate that when my dad was sick that all my siblings pitched in--sometimes it took a little begging but all helped. My oldest sister and I were the spokes persons for my dad in the hospital--me being the nurse and not afraid to speak up and my oldest sister not afraid to speak up either and also having much medical knowledge even though she is not a nurse.
So you say you are 1st generation..where are you from?
I am sorry that you had so much to handle especially with your ex. I am not sure I could have handled all that you have. You are a rock and I am glad for you for that.
You are fortunate that you don't have any extreme hyperthyroid symptoms. I ignored symptoms for too long--I had an excuse for everything--shakey?--my morning coffee--heat?--approaching menopause, etc. By the time I was diagnosed I was just barely holding it all together and I was runnning almost in circles. I did the work of 2 people . Everyone pissed me off--it wasn't me --it was THEM--I found out it was really me. I had lost 18 pounds but I was kicking butt at the gym--my husband was getting concerned. I was restless and fidgety and even while supposedly relaxing watching tv in the evening. I had a few panic attacks which I had never really had before--they happened while I was driving---very scarey-I stopped driving till all was under control with my thyroid. The worst symptoms were the panic attacks, the full body shakiness and the racing heart--up to 170 beats per minute and it pounded like it was trying to get out of my chest--very uncomfortable. I also sweat profusely--had beads of sweat on my face from any activity and felt like I was a walking furnace. Once my primary MD got the testing , the labs and me started on the beta blocker and the antithyroid med, I saw the endocrinologist about 5 weeks later. I begged to be seen sooner--no openings--hmmh. When I finally so the endo he says to me, "How's it like being on the other side of the medical problem?" I told him I didn't like it--he proceeded t tell me that my labs showed that I had been VERY hyperthyroid--I told him I was VERY something. I also told him that I was desparate to see him and how it took 5 weeks just to get an appointment. We need more endocrinologists!! Before I got to the appointment I wrote down all my questions--I had a list ..believe me.
I am so thankful for my husband through all of this mess. He has been very supportive.. I guess a lot of Grave's peope have Grave's rage--something I am thankful I have never experienced and hope I never do--lol. I am sorry that you did not get the support from your spouse--but it sounds like you had plenty of other support . Thank God. Yes we will carry on because we are strong women. Have a great day. How are you feeling?
it looks like it didn't get posted...i love technology and yet hate it at the same time...LOL.
Anyway what my original post said was: I'm feeling ok on the PTU. I don't seem to get as nauseous as I did on the other medication. But I do get migraines by the time 4 PM rolls around. I'm hoping that it will die down in the next few days. I'm keeping my fingers crossed that Friday flies by without hives. That twill be my 2 week marker on PTU. it was 2 weeks on the other med that I ended up in hives. Other good news is that my 2nd scan and ultrasound showed no tumors, no tiny nodules or not even a goiter. It's just an enlarged thyroid. My endo says that she is hoping that the meds will take care it in the long run.
Sorry I didn't get your other post. Glad that you are feeling better on the PTU and the side effects are easing. You will most likely be fine on the PTU without allergies but time will tell. I remember worrying about the same. Good that your thyroid scan was improved. Why have they done 2 scans? I have only had one scan and I can't imagine too many scans are good. The utrasound is probably a lower level radiation exposure than the nuclear scan. Talk with your md before he woudl ever schedule another scan.
I am taking the PTU 50 mg three times a day and I feel pretty good--it has been 2 weeks on that dose. I will talk with my md about checking my labs next week since it will be the 2 week mark and I don't want things to get too low either. I have been feeling cold lately--of course it is cold here in the Northeast so I am not sure if it is me or the weather. I never use to get headaches but since my Grave's diagnosis last September I get them intermittently and they are a pain in the neck. The headaches frequency has been decreasing though--thank God.
The PTU and controlling one's stress level and stress factors I am sure has a lot to do with it all. A lot of people hold stress in. I am sure that I am one of those--lol--all is great than BAM it all comes to a head. I am doing better with that these days. For me working part time as opposed to full time seems to work better. My job , though I do love what I do, has a lot of adrenaline rushes and has a very fast pace in the sense that someone's life depends on how fast I move and how on top of my stuff I am. When I was feeling great I picked up an extra day---my body has been telling me that it doesn't like it since I have been headed hyper once again. I was one pill away from being pill free. I am hoping I can get back to the one pill a day. I am hoping the endo doesn't suggest the radioactive ablation.
I am crossing my fingers too for you to be hive free and itch free. Well I have got to be going. Have a great day.
This question is for Endocrinologists, and also for women taking 50 MG of PTU 3 times daily-- Have any women experienced yeast infections while taking PTU? I haven't had a yeast infection in 15 years; but since I have been on PTU for 6 weeks, I have developed a doozy of a yeast infection! Do you think that perhaps my yeast infection is a result of a weakened immune system, and should I expect alot more yeast infections while I'm taking PTU?
Are you drinking plenty of water with this medication? If not, it can and will cause problems. You have to flush your system well with this med. It's a very powerful medication so you have to make sure you drink lots of water, not juice or other liquids, water to keep your system flushed.
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