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Mary Shomon

FDA Issues Warning About Thyroid Drug Propylthiouracil / PTU Used to Treat Hyperthyroidism

By May 10, 2010

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The US Food and Drug Administration (FDA) has added what's known as a "black box" warning to the label for the drug propylthiouracil -- commonly referred to as PTU. PTU and methimazole -- which also goes by the brand name Tapazole -- are the two antithyroid drugs available in the US to treat hyperthyroidism. The FDA's warning states that severe liver injury and acute liver failure, in some cases fatal, is associated with use of PTU both in adults and children.

The new warning says, however, that PTU may be appropriate to use in two key situations:

  • When a patient cannot tolerate the other antithyroid drug treatment such as methimazole (Tapazole), or other treatments for hyperthyroidism, such as radioactive iodine (RAI) or surgery
  • When a woman is in the first trimester of pregnancy-- because there is an increased risk of birth defects in babies whose mothers have taken the thyroid drug methimazole during the first trimester of pregnancy
Patients who are taking PTU should not panic, however, as the overall risk of problems is quite small. The FDA's warning is based on the fact that since 1969, when the FDA's Adverse Events Reporting System database started tracking adverse events related to medications, there have been 34 cases of severe liver injury associated with PTU. Of the 23 adults affected, 13 deaths and 5 liver transplants were reported, and among the 11 children, 2 children died and 7 required liver transplantation. The PTU findings compare to 5 cases of severe liver injury -- and 3 deaths -- that have been reported with methimazole.

According to the FDA, however: "Although the number of identified reports of postmarketing cases of severe liver injury with propylthiouracil use between 1969 to 2009 is 34, FDA included information about this adverse event in the Boxed Warning due to the severity of the cases, some of which have been fatal, and to ensure that healthcare professionals are aware of this risk and are vigilant for the signs and symptoms of hepatic toxicity."

So, as you can see, given that hundreds of thousands of people take antithyroid drugs every year, the overall risk is quite small. But based on these findings and the medical literature, the FDA wants physicians to be aware that PTU is associated with a higher risk for clinically serious or fatal liver injury, compared with methimazole.

The FDA recommends that physicians monitor patients who are taking PTU for signs and symptoms of liver injury, particularly during the first 6 months after beginning treatment. And the FDA says that PTU should not be administered to children unless the child is allergic to or unable to tolerate methimazole, and other options are not available.

The following are the FDA's recommendations for healthcare professionals:

  • Be aware that severe liver injury and acute liver failure, including fatal cases, have been reported in adult and pediatric patients taking propylthiouracil.
  • Propylthiouracil should be reserved for patients who cannot tolerate methimazole or for patients for whom radioactive iodine therapy or surgery is not appropriate treatment when initiating treatment.
  • Propylthiouracil may be the treatment of choice during and just before the first trimester of pregnancy, as fetal abnormalities have been observed with methimazole in early pregnancy.
  • Propylthiouracil is not recommended for use in pediatric patients except in rare instances in which other alternative treatments are not appropriate.
  • Encourage patients to read the medication guide when picking up their prescription for propylthiouracil.
  • Review the newly revised label for complete information on the use of propylthiouracil.
Source: FDA Drug Safety Communication: New Boxed Warning on severe liver injury with propylthiouracil, 04-21-2010

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Comments
May 14, 2010 at 1:05 pm
(1) Beege says:

Many years ago, I was on massive doses of PTU everyday for approximately 8 yrs., 800 mgs. per day divided into 4 doses throughout the day. During the last year or two, I was monitored of course all that ime, they tapered off as my thyroid gland burnt itself out. I had a severe reaction to tapazole which they tried first. At that time, they never used radioactive iodine on a woman of childbearing age because of fear of making her sterile. And I’m guessing I was so severely hyperthyroid, that they didn’t even want to risk surgery. I just remember when they ran thyroid tests/blood work the lab would stop counting and put “over (whatever number it was) and 5 !!!!!”

What I want to put out there is that doctors did not know, and it seems STILL do not know what I learned many years later from The World Health Organization (I think it was) that PTU can suppress the immune system and should be monitored especially if on a very high dose as I was. During those years I was a military wife and in traveling had to have innoculations to go to foreign countries. I landed in Tokyo so sick from the smallpox vaccine (cowpox from the vaccine) that they wanted to airlift me back to the states. They finally agreed to let me stay quaranteened until my white blood cell went down. But at the time no one knew why that happened. It was only I myself doing research many years later that learned about PTU in some cases (I was on massive amount) suppressing the immune system. I remember pharmacists asking me if it wasn’t a misprint…..that they had never filled a prescription for such a large dose/amount.

Also, may be interesting for you younger women to know that any woman who became pregnant while on antithyroid meds in those days was advised, and always did as far as I know, to have a medical abortion for fear of the effect of the meds crossing the placenta causing cretinism in the baby. I was one of the first (the first of any women I know) who decided not to. I was fortunate enough to have a world respected Professor of Medicine in Endocrinology and doctor of research in my family who got on the phone to my OB and Internist across the country and conferred with them. As a result, I had blood drawn every few weeks throughout the entire pregnancy and the dose was changed and monitored the entire time. As I remember, it became less as the pregnancy continued. They were going to operate during the second trimester, but decided not to as the need for meds and the hyperthyroidism lessened as the pregnancy progressed. Then after my son was born the hyperthyroidism increased again, and dosage was increased. I am under the impression that is the treatment protocol now.

Coming from the family with the “medical research wing” as I call it, I thought I’d get that information out there on PTU and the immune system.

Also, I’m told by some nurses that there are still doctors today who either don’t know how to monitor a pregnant woman, or don’t want to take the responsibility/risk and still advise abortion. With the shortage of endocrinologists, perhaps it’s getting harder to find one.

Always interesting and educational to learn about the history of a disease you are coping with……medicine evolves.

May 14, 2010 at 5:56 pm
(2) Doreen Wisneski says:

My daughter was put on methimazole but broke out in severe hives after taking the medication for two weeks. My pediatric endocrinologist would not even consider putting her on PTU because of his concerns over liver damage. We ultimately had the radioactive iodine procedure done because her hyperthyroidism was so severe. Maybe it is okay for some but this was our personal experience with PTU.

May 15, 2010 at 2:36 pm
(3) Belinda says:

I had a severe reaction to PTU (100 – 150 mg) about 5 years ago. This was the first treatment after being diagnosed as hyperthyroid. After about 2 weeks I started having joint pain. A couple of days later I was having such bad muscle spasms I couldn’t get out of bed. They were so bad, I would scream out in pain and cry. I went to the emergency room several times, they couldn’t find anything wrong. My Endocrinologist reduced the dosage from 150 to 100, but the joint pain was still unbearable. This went on for a couple of weeks and I finally went off the PTU all the way. It took about 3 days for the pain to subside, but it did. The Dr. said that it was not a PTU reaction…bull. I have been to 2 other Dr’s and they said the same thing. I’m not sure what caused the muscle spasms, but I know it was related to PTU, whether it caused a deficiency of something in my body, or caused some immune reacion, or if it was an allergic reaction, whatever…it was definitely PTU related. I am writing this to see if anyone else has had these unbearably painful muscle spasms while on PTU. I don’t think I can be the only one. I don’t think it’s that common or the Dr’s. would know more about it.

September 27, 2010 at 6:12 am
(4) sally says:

Hi,I was diagnosed with Graves disease in 2009 and was put on Carbimazole.My hair was falling out really badly due to the Graves but still carried on falling out during treatment which I found very distressing. My doctor then put me on Propylthiouracil 150mg per day. After a few days I also started to experience severe joint pain and terrible muscle spasms/cramps.Just getting dressed can be very painful and my legs and feet will cramp up really bad just lying in bed. I have also had very bad lower back pain ,possibly my kidneys. I am sometimes in so much pain it has almost stopped me working.(I am a groom at a private stables so it is a very physical job).I am walking around like an old person, I am gaining weight rapidly – over 20kg in 5mths and my hair is still falling out.I feel so depressed I wont leave the house unless I have to.I explained this to my doctor who refuses to believe it has anything to do with the PTU drug.Its as though they think I am making it up.I stopped taking propylthiouracil about a week ago as I had run out and my doctor didn’t know whether to prescribe more without speaking to my endocrinologist first.After a few days the muscle spasms have all but stopped, I still have joint pain but not as bad as it was.I think it is obvious these drugs were the cause and I also think that GPs should do a bit more research in to the condition itself and the drugs they are prescribing as it is very stressful to have such devastating symptoms/side effects and no one can offer an explanation or reassurence as to when or if you are likely to get better. My hair is still falling out and I am still gaining weight, I will probably have to continue with the treatment but I am going to refuse propylthiouracil.I hope I will soon be able to stop all treatment.Does anyone know how long it would take for my hair to stop falling out and grow back.

September 17, 2011 at 9:51 pm
(5) Libby says:

Hi!

Just out here surfing to find out WHY I’m having these really bad muscle spasms…. And here you are. Mine are terrible. I’m on 100 mg x3 a day. It’s definitely the PTU. I’m calling my endo Monday. The spasms wake me up from a dead sleep crying. It’s terrible. If I get them during the day, it takes a good 20 minutes before I can use that limb.

Anyways, I’m posting, like you to tell others who have the muscle spasms…. It’s not in your head or your sleep. It’s real. And it’s the PTU.

May 16, 2010 at 12:38 pm
(6) Beege says:

Belinda,

Yes, I believe you that your painful joints and muscle spasms were from the PTU. All those years ago when they tried Tapazole first on me before PTU, that was exactly what happened to me with Tapazole. The reaction began with severe itching on the bottoms of my feet (remember dragging my feet across the carpet trying to relieve it) and then went into massive ALL OVER my body from my neck down pain, esp. joints, so bad that I had trouble even showering and bending my fingers to wash my hair for a cousin’s wedding. Thank God the uncle who was a doctor of research and Prof. of Endocrinology saw me at the wedding (I DO have persistence and was NOT going to miss that wedding :o ) barely able to move. He jumped into his car and ran to the drug store, bought syringes of corizone I believe it was (40 yrs. ago) and he and 1-2 other doctors took me to another doctor’s home and shot me up with multiple injections of it. Within 24 hrs. it was dramatically better. I also remember being sent home to my mother’s to bed since unable to move as you described. That reaction is so unusual that I was written up I was told in the AMA Journal, or New England, (one of those medical journals) all those years ago. The reporting system to the FDA on negative drug reactions was new then and it was reported to them as well since the doctor treating me was a Professor at U. of Penn. So, you are RIGHT. You know your body. Those doctors are not familiar with that rare reaction to both of the anti-thyroid drugs. But that kind of allergic/immune reaction can happen to different things.

I know I was “spoiled” with so many doctors in my family (2 or 3 of the 6 were professors of med) that I sometimes get impatient and annoyed with the “limited text book”, black and white thinking, of most doctors in clinical practice. In their minds, if they are not personally familiar with something then it does not exist. I’m amazed that the ER didn’t even ask you if you were on any new medication for starters. THAT would have started the ball rolling on recognition of the problem right there. Now that I think about it, I’m left to wonder if the doctors, prescribing and the other two, all denied the reaction because of our litigious society and were trying to avoid a lawsuit against the drug manufacturer and prescribing doctor. That IS a valid concern. This society has gotten so ridiculous that some would actually sue over something that could not have been anticipated like that extremely rare reaction you and I had. Yes, it was unpleasant, but no lasting damage. And those drugs serve the “better good” for others needing treatment for hyperthyroidism with the limited choices medicine has (WHAT would patients with thyroid disease DO without any of those limited choices ? My disease was so severe, I would have been dead a long time ago, and certainly had little quality of life before I died). Let’s hope that was the case, and that each of them learned something new from your experience with the drug and will keep it in mind if another future patient (though it is a rare reaction) reports the same thing, and they will immediately recognise what’s happening to the patient and take action.

Just wanted to give you encouragement in believing in yourself….

May 18, 2010 at 12:49 pm
(7) Mohamed says:

My wife was diagnosed for hyperthyroid,after delivery of my child.Dr prescribed ptu50.
As my wife is feeding ,we don t want to take any risk.What best we can do?

June 3, 2010 at 2:07 am
(8) irena says:

PTU 50 mg a day is considered safe for nursing mother, 100 mg a safe is for pregnant women

June 11, 2010 at 9:19 pm
(9) Kris says:

I was diagnosed with a mild case of Graves disease in the fall of 2001. After researching everything out there, I knew I did not want to lose my thyroid through radioactive iodine treatment. I had a wonderful endocrinologist at the Cleveland Clinic who was very supportive. I was instead treated with Tapizole for two years (no side effects). We then decided to discontinue the medication to see if I would go into remission. It was successful! We had put off trying to start a family throughout this process. I ended up getting pregnant three months later. Unfortunately, the Graves disease came back during the pregnancy. I was prescribed a low dose of PTU throughout the second and third trimester. My endocrinologist monitored me carefully throughout the pregnancy. He also monitored our son when he was born. I continued on the PTU while breastfeeding for the next 11 months. I then went off the PTU to see if I would go into remission. Also, we had moved and I no longer had access to an endocrinologist with our new health insurance. I did go into remission and I have been ever since (now 2010). Our son is healthy, brilliant and beautiful- although quite “spirited”. I just wanted to put this out there for anyone concerned with pregnancy, breastfeeding and PTU as well as the success of alternative treatments to radioactive iodine. We’re now thinking about having another child. I’m really hoping that my Graves disease will stay in remission for this next pregnancy.

July 24, 2011 at 9:22 pm
(10) Layla says:

Hi,
Thanks for sharing your experience. I was just diagnosed with Graves. The Dr. says we caught it early- I’m starting to feel symptomatic. I also have periodic tingling in my left eye and some pressure under both eyes. Did anyone have this- and did it go away with PTU? Did it go away or progress into Graves eye disease? I was put on 330 mg of ptu and we put ttc on hold. Did anyone have a hard time getting pregnant with Graves and PTU? I’m so nervous about the health of the fetus a not sure if we should put everything off till I know how the PTU will positively effect me. I’m 36 so…. I’ll know in 5 weeks- It’s only been a week. Thinking about surgery if I don’t respond well. If anyone can share their experiences that would be so helpful. This has all been so difficult.

February 6, 2011 at 3:39 pm
(11) 7weekspregnant says:

I am 7 weeks pregnant and was just put on 300 mg a day of PTU. I took methimazole a few years ago, it didnt bother me and my Graves went into remission. The pregnancy seems to have triggered it once again.I am guessing (and will ask) that they put me back on methimazole once the first trimester is over.

My TSH was .03 T3=7.7 and T4=2.1. Is that mild/medium/severe?

So far I have no pregnancy sickness although I have been tired and attribute it to the Graves. I felt better right after taking the PTU. But I do have a little phlegm in the back of the throat which I have tried to cough out’–it is annoying ad I find especially when I am out and about I have to either chew mint gum or drink ginger beer so I dont gag.

If anyone can speak to my questions/concerns, that would be great

June 16, 2011 at 8:12 pm
(12) heather says:

I’ve been on PTU since Sept 2009. I started out on 2 pills 3 times daily. Then just after 3 months the dosage was lowered because my body reacted so well to it. My doctor has several times asked if I want to switch to tapizole, but its much more expensive, and I don’t carry insurance. I haven’t had any problems with the medication other my hands become numb at random times. I thought it was something else at first, but everytime I run out of PTU for a week or 2 my hands are fine. About 2 to 3 days after I start it again my hands go back to being numb. Wrist to fingertips on both hands. Other than that though I am having no problems. Should be my last 2 months on PTU. I’m wanting to get pregnant!!!!!

October 30, 2011 at 7:37 am
(13) noelle says:

To Belinda, I had the same experience with you- muscle spasm, but that i got it from the over dosage of neomercazole. The pain would last a week. But this experience of mine was over 5 yrs ago. Though i am still hyperthyroid, i would suggest to all of the hyperthyroid patients to go to acupuncture. I survived for 10mos. without medication. everything was normal, my weight, palpitations, hand tremors all of them were gone because of acupuncture. But as far as my experience is concerned, all the symptoms came back when I was not able to maintain the acupuncture. This is the safest way to cure thyroid problems even if you are pregnant, you can still have acupuncture. I know some patients who are pregnant and had acupuncture all through out their pregnancy. The baby was healthy.
I hope this helps a lot.

June 20, 2012 at 9:12 pm
(14) Joey says:

I just started to take PTU 50mg a pill, 2 pills a day now, worrying what is it going to do to my body……

Methimazole gave me such a bad reaction that I could not try it again with a lower dose, after taking Methimazole for 3 weeks, I had hives broke out all over my body, at that time I thought it was because I climbed a mango tree to pick some mangoes perhaps some sap got onto my skin. I called the endocrindologist and we agreed to take it for a few more days just to rule it out, turns out I took it for extra 5 days after the first hives and unbelievable itch broke out. Then a week later I was hospitalized because this drug knocked away all my white blood cell count!!! it was down to 1.1

I had no immune system, got an infection on my throat immediately the fever came upon me and would not go away, I went to see my primary care doctor and he did a blood test, a day later he called me to tell me to check in at the emergency room immediately, so I did.

at the hospital they gave me 2 injection of Neupogen, to boost my white blood cell from 1.1 to 5 in 3 days, I was discharged after 5 days in the hospital.

I am very scare of thyroid drug now, but my primary care doctor insisted I have to be treated, so I am on the lowest dose of PTU now, just started yesterday, hopefully it would work without too much damage.

I also reported this crazy reaction to FDA, wodering if that is really that rare!!!

best regards,

joey

June 24, 2012 at 11:19 pm
(15) Amzy says:

Hi everyone

Few weeks ago I became very ill. I could not eat anything and was constantly sick all the time. I could barely do anything due to no food in me and had bad headaches. One night I was being sick so much that my family insisted I go a n e. I went hospital and they were very concerned that my heart rate was very high and all over the place.

They then confirmed I was around 8 weeks pregnant. I stayed in hospital few days completely dehydrated. They did blood tests and told me I had an overactive thyroid. My pregnancy had triggered it. I found it abit awkward because I did not have this problem last time I was pregnant.

I had lost so much weight I now look like a skeleton. They gave me PTU 2 50mg tablets 3 times a day. The doctor said the drugs will not harm my baby but reading on the Internet some say it can harm the fetus.

The tablets have not helped me yet but it’s only been two weeks. I have to have anti sickness tablets before I have PTU. I have read about all the side effects and it scares me.

At the moment I feel normal when I lye in bed but I can’t stay stood up for long. I feel like I am going to faint and have muscle pain, but I can’t blame this muscle stiffness to PTU because I had it before I took the tabs. I especially find it hard climbing up the stairs. These are unfortunately symptoms of overactive thyroid.

Please can someone tell me what I can take or do to get rid of the muscle pain and the fast heart beat.

I’m very scared because I have read that people are on medication forever. I have often regretted being pregnant and thought if I wasn’t pregnant I could have had more treatment.

Sorry to go on with myself and bore you all. I hope someone out there does not feel like they are the only ones suffering. Oh and by the way my mum has thyroid she is 44 I’m 26. My daughters only 7 months old I fear for her and my new baby that they don’t fall into this nightmare.

July 21, 2012 at 4:22 pm
(16) Maurice 11 says:

Let me tell you something. RAi- radio-Iodine uptake, has been around since the 1940′s and is safe-very safe!. I read an article in the “Endocrinology Journal,” that said that RAI may be the preferred treatment. The medications , Tapazole and its generic, as well as PTU,have so many side effect, but what is worse, it’s not necessarily a cure for hyperthyroidism. Why don’t you google the subject-”-Radio-Iodine or medications for Hyperthyroidism.” The article in the “Endrocrinology Journal” should appear among other interesting articles on the subject.
If you are suffereing from A-Fib caused by hyperthyroidism, your best bet is RAI as well. There’s a good chance your irregular.heartbeat will go into sinus (Normal beat.) Remember, that if you go with RAI and become hypothyroid–that’s a lot easier to treat with hormones which have minimal side effect. i have had it with the medications, and I’m certainly not going to risk liver failure and death with PTU. I look forward to my Radio-Iodine treatment.. Hundreds of thousands of people had this treatment, dating back to the forties, and almost always with success. Don’t get spooked by RAI–you’re not going to get cancer. It’s a better treatment than using those d……ed toxic medications. DO THE RESEARCH AND YOU WILL AGREE WITH ME.

August 22, 2012 at 12:45 am
(17) Jackie says:

hey you guys all ur stories where very helpful and reasurring.

. I’m 30 yrs. old and i was recently diagnosed with hyperthyroidism about 2 month ago, and was put on Tapazole three weeks into treatment i broke out in hives and could not stop itching. Dr. took me off Tapazole and 2 weeks later put me on PTU ive been taking it for 4 days now and ive been so stress out due to everything ive been reading about its side effects especially liver damage/failure.

ps ive gained like 15 lbs is that normal? i thought u lose weight.

November 5, 2012 at 8:04 am
(18) Anne says:

I was taking mathamazole, 30 mg. once a day, for less than three months. My liver enzymes (alkaline phosophase) went from 90 to 200. My Dr called and said to stop taking it immediately.

February 27, 2013 at 4:53 pm
(19) Moll says:

I have recently been diagnosed with Grave’s disease (approx 4 months ago).I was put on carbimazole 20mg daily then the dose raised to 30mg daily as my thyorid disease was not well controlled.

I too developed a dreadful rash which initially started with my feet & got worse over time leading to an itchy rash all over my body.I took some antihistamines which helped but if I forgot to take them the rash would return with a vengeance.After four weeks on carbimazole I developed crippling pains in my joints that saw me bed bound.
I called my endocrinologist & was switched to PTU immediately.It took over two weeks after stopping carbimazole before I could get out of bed.I tried strong pain relief but nothing touched the pain.I would just cry a lot & eventually get to sleep.I could not cope with the pain so I called an ambulance & was brought to the ER but they had no idea what was wrong with me.
I am a dentist & the doctor asked me in my opinion what did I think was wrong with me!!I told him exactly what was wrong that the carbimazole was laying down crystals in my joints & the pain was the same as gout.
I thought I would get some help ie steroid therapy,as I had researched a case ,of a young man with my exact symptoms.Due to the lack of the doctor’s knowledge I went home having been given the exact
painkillers that I was already taking so it was a complete waste of time.I felt so distressed as I have two young children & was crippled.

Finally I’m free of joint pain & weakness now that I’m on PTU 400mg daily.However I am concerned regarding the risks of taking PTU especially the risk of liver damage.I am seriously considering radioactive iodine therapy & will be seeing my endocrinologist in 3-4 weeks to discuss it again.It is far easier to control hypothyroidism with drugs with less side effects than it is to control hyperthyroidism with drugs that produce huge side effects.

March 21, 2013 at 7:51 am
(20) karenwright@gmail.com says:

Hi, just read your comments and wondered how you are doing now. After three weeks of taking carbimazole i cant stand the sévère joint pain and weakness. Stopped taking it last week but still poorly. Doc testing me for arthritis but im convinced its a reaction to carbimazole.

March 23, 2013 at 2:27 pm
(21) Sara Brighten says:

Hi everyone, I have a 10month old little girl and my endocrinologist says she thinks ive developed Over activs thyroid from having her (usually within the first 6 months)
I was taking Carbimazole for 3 1/2 weeks when I had been on a hen night drinking, the day after I started getting severe pains in my fingers and knee joint, I had a hospital appointment the day later! I told her of my symptoms etc and that ive read up on the internet, she said it is very rare to link the pains with the drugs, even so she changed them for PTU!
Ive now been taking them since the 8th march, but have only just started to feel better, calming the symptoms.
Anyway I had a friends wedding yesterday and last night and had drunk a lot of wine and vodka as you do… today I have started to get thd pains again, shoulder and fingers.
I’m 30 years old, and was wondering if alcohol will effect these pills????
Someone please help! Sara (Norfolk, Uk)

April 12, 2013 at 9:48 am
(22) Jen says:

Hi everyone! Im 33 and in pretty good shape. My mother has Hashimotos.

Last month when returning home from a working holiday I got quite stressed at the airport. I’m not a great flyer and I had to fly by myself on a journey which was going to take 23hours from start to finish.

When I landed I was sweating profusely, had an elk aged heart rate and just felt terribly unwell. 2 days later I was at my GP with a resting heart rate of 150 bpm.

My T4 was recorded as 92 and I was sent straight for a thyroid uptake which diagnosed Graves Disease.

I was put on carbimazole 25mg three times a day and Inderal 20mg three times a day (this was to slow my rapid heart rate).

Exactly 2 weeks after starting the carbimazole I broke out in huge welted hives all over my body! The endocrinologist said it was the carbimazole and put me on PTU 250mg Three times a day with the same amount of inderal.

The day after beginning the PTU I had sore thumb joints which were annoying but nothing too dramatic. Five days in my hands are clenched in pain and I can hardly even hold a glass to drink! My shoulder and leg also have pain today. I tried ibuprofen and codine but it has made no difference. Neither does heat packs or ice packs.

I realize I am in the severely thyrotoxic range at the moment and was in the midst of a thyroid storm when I landed. All I want to know is HOW DO YOU CONTROL THE PAIN???

I want to get back to my active lifestyle and the life I led before Graves!

May 28, 2013 at 1:09 pm
(23) YJ says:

Hey there! I’m suffering from hyperthyroid condition too, i’m 20!
I don’t know if you guys have trusted traditional chinese medicine practitioners in your countries, but in my country (Singapore) we do. I actually take chinese medicine alongside PTU. I must say, the first week into eating chinese medicine, I could feel significant improvements in my condition! When I stopped eating them, I could feel the symptoms increasing too. It was really effective for me. If you have trusted practitioners, and you are comfortable with it, do give it a try. It may offset the pains you are having, though i’m not sure if your TCM doc would recommend you to completely go off PTU and I don’t know if it is safe to completely stop. IANAD. Talk to your endo about it first. Btw there are some rules you have to keep with chinese med, like eating it 2 hours after western medicine.

Just a side note, I had these really bad muscle cramps when I was taking Carbimazole instead, it all went away after I switched to PTU. Don’t really know why, I think alot more research should be done.

All the best, hang in there! (:

May 28, 2013 at 10:56 pm
(24) joanne says:

I had a mth with shakey hands muscle pain I couldn’t get out of bed very sleepy n tired I felt like sleeping beauty I gained wait I always have to have one of my children on top of my back n my hands cuz they feel numb n cold also my feet mostly when im going to sleep n when I wake up is like im nervous my arms feel like if I have a rubber bands the doctors had told me I had hyperthyroidism but never gave me nothing till one doctor gave me propylthiouricil I took it 3 times n he checked me again n told me I was ok I told him that I only took 3 pills in 1 mth he was astonished so I went to another doc n he checked me after 1yr he told me I was ok then after 3 mth he checked again he told me it was a lil high then checked me again without any medicines n I was fine so I told him wats wrong sometimes im fine then high n I didn’t go to the doctor for 2 yrs n he checked me n again high so now he gave me methimazole 5mg n it doesn’t work I still feel the same it only goes for a while n have to take another one at night so I got I 50mg pill of propy n cut it in half I was on the go felt new but since the doc said that med was bad it was causing lucemia I don’t take but half a pill make me feel better than 5 mg of methimazole.im thinking of going to a specialist of hyperthyroidism.

August 1, 2013 at 2:24 pm
(25) charley says:

hi all, im really hopeful that I can get some answers as im in real need for some answers. I was diagnosed with graves disease 4 months ago and was put on 150mg of ptu 3 times a day and 40mg of propranolol 3 times a day, although my levels haven’t improved im feeling better and thankfully ive not had the side effects that im sorry to hear many of the other people on her have.
I was told to hold off getting pregnant till things had stabilised but after using the appropriate means I found out 2 days ago im 5 wks pregnant, im over the moon about the news but im terrified about the side effects the drugs will cause to the baby, im now on 100mg of ptu but still on the same dose of propranolol, ive got an early scan next wk but it wont show how the babies developing. my husband is so concerned hes talking about an abortion which as you can imagine the last thing i want, i am concerned as to what could happen to the baby though and if anyone could help shed some light on it then id be so thankful.

August 28, 2013 at 4:00 pm
(26) Amy Arden says:

I can’t believe that I found this site! I have had extreme joint pain and now been diagnosed with RA or Psoriatic Arthritis – and I started thinking it’s the PTU. I’ve been on PTU for over a year 250mg a day and the joint pain started slowly 3 months into the use. I’ve taken myself down to 100mg a day and already noticing the pain subsiding. We need to get the word out about this drug.

September 27, 2013 at 7:33 am
(27) Lynsey S says:

Reading everyone’s comments have made me like I’m not in fact losing my mind. My thyroid has gone overactive for the second time in the past two months. Last time I was prescribed Carbimazole which made me feel nauseous and I began being sick quite often so was put onto Propylthiouracil. I then took a combination of this and eventually thyroxine to restart my thyroid function for about a year and recovered.

A few months ago I started experiencing thyroid symptoms. I saw a doctor who said it was just stress and told me to try stress management techniques. I went back to my own doctor who ordered blood tests and referred me to the outpatient thyroid clinic. My thyroid was over but only a little so my doctor started me back on Propylthiouracil, 100mg twice a day, a much lower dose than I’d been on before.

I had my apt at the thyroid clinic and was told by a very matter of fact doctor that he was booking me in for a thyroid scan but as far as he was concerned I have recurring thyroid disease and that I should start thinking about whether I would want to try the radio iodine treatment or surgery as those would be my two options.

I now have my appointment for my thyroid scan in just over a week but I’ve been feeling progressively worse with constant headaches, nausea and over the past few days a pain on my lower right side, at the back, in the kidney region. I have no energy and generally feel awful. I’ve been making myself keep going to work but aside from eating and sleeping that’s all I’m doing.

I’ve called my doctor and explained my concerns and how bad i’ve been feeling so I now have an apt this afternoon to see if I’m having an adverse reaction to the propylthiouracil or if I’m just very run down or what. Just reading other people’s experiences has helped so thank you for sharing. I feel so rotten and I’m getting no support from work although I have an amazingly supportive boyfriend and family. Hopefully the doctors can figure out what’s going on

October 4, 2013 at 3:59 pm
(28) robin deon says:

i went into kidney failure from using ptu to control hyperthyroidism. alot of people including drs. have no idea of the serious dangers this drug can cause to people. it has caused liver failure in many as well as premanent kidney damage /anca positive vasculitis that led to my kidney failure. please find another treatment for your hyperthyroidism … i wish i had. ptu changed my life forever & the damage done to my kidneys are irrepairable. i will most likely be facing a kidney transplant at some point in my life.

October 26, 2013 at 7:46 am
(29) danita says:

Wow, this is serious I have been taken PTU since I was 26 I get blood work every 6 months and they say my levels are fine, I have a 15 year old daughter that was born at 4 pounds 9 ounces the doctors took me off the meds during my pregnancy she was full term, I have a twelve year old boy 6 pound10 1/2 ounces not full term, my daughter does very we’ll in school very focus my son seems not to concentrate or focus as good he even has outburst they are trying to diagnosis him with ADHD, I really need to know if there is anyone that has or is going through this I’m at my Witt’s ends, he was tested and his IQ IS OVER 100 SO IF SOMEONE CAN GIVE ME ADVICE PLEASE HELP A MOTHER IN DISTRESS

November 25, 2013 at 6:22 pm
(30) kristine says:

hi everyone! last month (October 2013) I decided to consult a doctor as I have noticed a swelling on the right part of my neck. The doctor immediately concluded that it was goiter. Several tests (thyroid ultrasound, TSH,FT4) were conducted to check the real condition of my thyroid gland. TSH & FT4 were normal. However, based on the ultrasound, my throid gland was slightly enlarged and that I have a complex structure nodule (about 2.67cm). The doctor said that my condition is called (Nodular Non-Toxic Goiter). He then prescribed LEVOTHYROXINE SODIUM 100mg (1tablet a day). After 2 weeks of taking that med, my TSH dropped from 0.4 to 0.038, but he still insisted that I still need to continue taking that pill. With hesitations on my mind, I decided to consult another doctor after 2 more weeks. There I found out that Im already suffering hyperthyroidism as a result of taking Levothyroxine. The second doctor then prescribed Methimazole 20mg (2tablets a day). Took this pill for 2 days only as I went out and see another doctor. The 3rd doctor agreed to what my 2nd doctor told me (my goiter became toxic because of Levothyroxine), so an anti-thyroid is needed, he then wanted me to take PTU instead of Methimazole. So I followed my 3rd doctor’s instruction. I am now on my 4th day of taking PTU 50mg (2tablets 3x a day; making it 300mg daily intake) and I noticed (even on the 2nd day of taking the pill) that though I do not have joint pains, I always feel so dizzy, my skin is so itchy (especially on my nape part & arms) and I suffer from vertigo.

I am scared that I might also suffer from joint pains after few more days or weeks of taking PTU, but I do not have any other choice. The doctor said that my TSH level should be at the normal range again so that I can then undergo a thyroid surgery by early next year.

Hope each & everyone of us whose suffering from hyperthyroidism & the adverse side effects of taking the meds be all well.

December 10, 2013 at 3:18 pm
(31) Reader says:

Mary — Thank you for putting this information into perspective. I read several other articles about this at the time and since, but none of them mentioned that these severe liver cases were over a 40-year period. Knowing that it is not a very common thing helps put my mind at ease.

I first started PTU in 1999/2000, and have been on it almost continuously since then, without any side effects or problems. Unfortunately, my Graves’ Disease didn’t go into remission when stopping the medication, so I’ve had to continue it. I didn’t want to do RAI and I got a rash after trying methimazole (similar to when taking another medication I’m allergic to), so I guess I’m stuck with PTU for now. My current endo did try me on a combination therapy (levothyroxine + PTU, which he said works for some of his patients), but with no luck. I just hope that my thyroid will quit at some point, and then I can just take thyroid supplements.

December 20, 2013 at 5:18 am
(32) joseph says:

Hi…..this post is about my mother she was prescribed PTU about 6 years ago and in 2011 she became very ill to the point that her Dr thought she had leukemia because of her immune system being so depleted she was in and out of hospital for five or so months until another Dr figured out it was PTU that was making her so sick but with her immune system being so low she ended up with some severe infection which cause a condition called purpura fulminans which cause the tiny blood vessels in skin to rupture causing necrosis (tissue death) over much of her body and she went into septic shock and almost killing her . She spent 5 months in the Augusta burn center for all the damage that was done to her body.it been a little over 2 years since this happen and she is alive and well today because of a miracle. Thoughti would post this to share what horrible affect come from PTU.

December 23, 2013 at 5:23 pm
(33) Won says:

I was on PTU for over 3 years after being diagnosed with Grave’s disease. I just went through 3 months of nightmare due to PTU induced anca positive vasculitis. I was initially diagnosed with reactive arthritis and was given harsh medications which put me through severe pains. I was experiencing severe muscle and joint pains which completely crippled me from doing anything. I was in screaming in pain for hours EVERYDAY of those months. Mentally, it got to a point where I had suicidal thoughts. None of the doctors I consulted knew what exactly was going on until the second rheumotologist suspected vasculitis. After f’n Googling once, I was able to find relevant publications. I stopped taking PTU immedicately and all the symptoms started disappearing fast as in days. I also ended up getting the RAI treament. It’s been a month since the treatment and I feel very normal. I am very upset about what happened but the doctors seem careless and inconsiderate. My endocrinologist who I initially asked whether PTU was causing all the pain, flat out rejeted the idea doesn’t seem to acknowledge that it was a huge misdiagnosis. I am back to being healthy for now but I have no long what long term effect this has caused. I am sharing this information on whatever forum I can find so there are no more victims of PTU.

January 10, 2014 at 11:20 am
(34) Tracy says:

I was diagnosed recently with hyperthyroidism and prescribed beta blockers and carbimazole. Within a week I started to feel better and relieved. One week later, however, I started to get itchy hands and feet and within 48 hours ( a weekend so the doctor wasn’t in) the itching was so bad that I was up all night, I also had brown urine, that started real alarm bells. On the Monday, my doctor told me to stop both medications and prescribed an anti-histermine, it started working within an hour and basically I was itch free for twelve hours, at which point I would take another pill. It has taken 4 weeks for the itching to subside and for me to not need the anti-histermine, just shows how potent carbimazole is. Two weeks ago I was referred to an endocrinologist who put me back on the beta blockers and prescribed PTU, I just started to feel better when I have developed symptoms exactly like carpal tunnel, my left hand, wrist and forearm are swollen and very very painful. My Endocrinologist has stopped the PTU and we will reconvene, sometime next week when the drugs have supposedly left my system. I have tried anti inflammatories (dichlofenac) and they did little for the pain but last night I applied a lifewave patch and today, the swelling is the same but the pain is much more manageable. Those of you who are suffering with joint pain, with no relief from conventional drugs, give lifewave a try, it seems to have made a bit of a difference for me.

February 28, 2014 at 9:01 pm
(35) Joanna says:

I don’t remember any pain after I took PTU. (I am Asian.) But I do remember my nose start to bleed every morning and gain 8 kg in one month. Also I always smell the odor of toilet. My doctor said nose bleeding is not the side effect of PTU. After 3 months, I decided to stop taking PTU and nose bleeding stops immediately. But I can’t get rid of the gained weight since then.

March 3, 2014 at 12:40 pm
(36) Teena says:

To ladies who are concerned about hyperthyroidism during pregnancy, I would like to share my personal experience. Hope this would give a glimpse of hope. I became pregnant on methimazole. I had a severe thyroid storm at about 8 weeks of my pregnancy. One of the endos suggested a medical abortion. He was, of course, out of his mind because there is PTU as a treatment option. But that time I was living in Africa where PTU is not available, neither in the EU due to its severe risks. I came back to the USA and had a great endo, started PTU 150 mg twice a day. I reacted badly to PTU with continued heartburn and fast heart rate. But, luckily, my thyroid levels got back to normal by itself as my pregnancy progresses. Entire pregnancy, I did not have to take any thyroid medication. I had a full term healthy baby.

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