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One of the drawbacks of PTU is that it tastes terrible. I do not remember that bad taste lingering, but most of that time in my life is a bit of a blur. I remember trying to swallow those pills very quickly, so that they did not linger in my mouth for any length of time.
If I remember correctly, PTU has a relatively short life-span, biologically, which is why we are typically instructed to take it three times a day. I found that i needed to take the doses roughly eight hours apart to keep hyper symptoms from emerging. That is difficult, given that one of the doses has to be late at night, and I was usually extremely tired by then. So, space things out as evenly as you can to get the optimal benefit from the drug.
For me, the PTU affected cognitive activities. I felt as though my brain waves were having to wade through molasses: I could not remember much of anything; thinking processes were slow. People here on the board told me that all that was just the disease, but I decided it was the drug, a personal reaction to the drug, and told my endo to go ahead with RAI. I never again experienced that sloggy, slow brain function, so I think that I was right. Nevertheless, it is important to check blood work to make sure that you aren’t on too much of the drug: being hypo can slow down the brain, too.
Thanks Bobbi!
I just talked to the pharmacist. She said that it can cause body aches. You should see me take the pills. It’s so funny cuz I count down-shove um in and swallow as fast as I can. Somehow I still get that nasty taste. So as soon as the pills are down (GET READY THIS IS WEIRD!) I love pickled beats, so I eat a few of them and it cuts the taste emmediatle!I also found that on the pills you should avoid Calcium Bicarbonate-Ant-acids and iron. My mom gave me some of her peppermint Altoids and they are strong enough to help also.Thanks A lot!
I also take PTU and they taste like the white rind in a grapefruit to me…very bitter! YUK! The taste can linger, so I drink a lot of water or soda after taking them to wash it down. I have read that we shouldn’t eat grapefruit while taking this drug. Has anyone else read this? With it tasting like grapefruit to me, there must be a good reason?
If the PTU will help me, really I don’t mind taking it even if it tastes bad. It’s a small thing to deal with compared to having Graves Disease & being hyper! ” title=”Wink” />Hugs,
~Grasshoppergrasshopper
HI! How are you feeling? I haven’t heard the grape fruit thing. I don’t eat grape fruit tho. I drink it with Pepsi, that helps too. I’m glad I’m not the only person who thinks it tastes like crap! lol How long have you been on it? When do you take it?
Hello Everyone!
I was just wondering if anyone is having the same problem as I am. I am taking PTU 50 mg three times a day. Not only am I forgetting to take a doses BUT I have the most disgusting taste in my mouth. It tastes like you’ve just chewed an aspirin. I’ve tried mint and things, but it doesn’t go away. Drinking seems to make the taste worst! Anyone else on the same meds and having difficulty? I have started to set the alarm on my phone to remind me to take the pills.Ps: My doctor was horrible when she prescribed the meds. She just handed me the script. SO are you suppose to take the pills at the same time each day, because if so, I am in trouble!
Thanks!
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!!!
Hey!
Yay it’s pretty gross. What is the new prescription he gave you? Is it the same as PTU, and does it taste better!!! lol It is pretty funny to hear from other ppl. It feels GOOD TO COMPLAIN OUT LOUD…cuz I know it’s not just me!Hi Sarabear
I’m doing better, thank you for asking! I’ve been taking my meds and done alot of sleeping and relaxing for the last 4 days. I actually feel somewhat isolated since I live alone, but it’s given me time to be with myself and read, think and do things for myself to regroup.
I’ve been taking PTU for about 5 years total. I was diagnosed 7 years ago, and when I went to Brazil for weight loss surgery, my Dr. took me off all my meds the week before surgery, and since feeling so good in losing weight, I was stupid and didn’t think I had to keep taking the PTU, so I stopped.
Two years later I found out I must have been in remission, but need to take the PTU everyday as prescribed.
I’m trying to cut back on foods with iodine & trying to handle stress better, hoping that will have a positive effect as well.
I wasn’t told by my dr to cut back on the foods with iodine, just doing it from some reading I did. Do others do this also?
My dilemma is that with having had weight loss surgery, I am supposed to have alot of protein each day, yet it’s the foods rich in protein that
seem to have the iodine in them! Foods like fish, dairy products such as eggs, cheese…all good for my diet, but not good for Graves:-(
I’m confused on what to eat to say the least!
Hope you are doing well and feeling better! While I don’t wish this on anyone, it’s nice to know we’re all not alone.Hugs,
~GrasshopperPTU is the short-hand name for one of the two major antithyroid medications (ATDs). It’s long chemical name, which starts propylthio….. is filled with spelling hazards, hence PTU. The other drug is called methimazole(Tapazole).
PTU is Propylthiouracil…now you know why it’s referred to as PTU…lol
~Grasshopper
I have been taking PTU for 23 months, somewhere after the 9th month I have stopped tasting it. I used to gag so bad due to the horrible taste, now it is tasteless to me.
Well Everyone,
I’m doing better with the nasty taste!lol I take it with caffeine free Pepsi and just drink and drink!!! It really helps!
For some reason to day the body aches are gone as abruptly as they came. THANK YOU GOD! I was at the brink of screaming my body hurt so bad. So I’m not sure what they deal is but, I’m not complaining!!!! I still have muscle weakness but thats no big deal. Pain was the big deal and …well it’s gone!Good Luck to you all.
Does anyone on these meds have headaches? I had my eyes tested and there fine. I keep getting these debilitating headaches. Any ideas why and what else I could do? Ibuprofen 800 won’t even wrk, or take the edge off. They get bad enough that I get nauseous and if I can’t lay down to sleep I fell as if I could throw up.
Thanks
My daughter is 11, diagnosed Nov 7. Broke out with hives severe with Methamazol. Now on PTU. After 3 weeks started getting itchty red patches that develop hives when she scratches. I can control this with Clariton. Otherwise doing very well. More labs Thurs. Anyone have hives experience? I have Graves, surgery about 8 years ago and I don’t remember much! My Mom has Graves and had radio ablation 3 years ago. My only sister has Hashi’s, (Talk about a family history!) But this is my child and I would like to avoid RAI at least until after puberty. Has anyone had a drug reaction improve with time and staying on the drug?
Thanks, Trisha
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