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Hello,
I am a 27 year old female who was diagnosed with a mild case of Graves’ in April of this year. I started MMI shortly after receiving my diagnosis and recently went off due to a reaction. In the third week of my MMI therapy (10 mg/day) I began to experience severe itching, which I understand is a common side effect. However, my left eye swelled up two days after the itching began, and so I stopped MMI and took Benadryl, which stopped the itching and brought down the swelling. My endo is switching me to PTU which I started today (50 mg/day). I understand that there is a 50% chance that I may react to the PTU as well, and then will be left with RAI or surgery as treatment options. I am feeling incredibly scared. I do not want to consider RAI or surgery as treatment options as I am very young and my Graves’ is currently relatively mild. Has anyone here switched from MMI to PTU without any problems? I guess I am just looking for some reassurance. Thanks!
Hello and welcome! I do know we have a couple of posters here who have used PTU, so hopefully, they will chime in.
Some patients do have skin reactions to anti-thyroid drugs…but in other cases, the hives/itching are actually caused by the hyperthyroidism itself and will subside as levels come down. The latest medical guidance notes that for “minor” skin irritation with methimazole, it’s possible to keep taking the drug in conjunction with antihistamines. However, your doc would need to help you sort out whether a reaction was “minor”.
Take care!
We have very similar experiences here! I am 30, diagnosed in March and had a pretty strong reaction to Methimazole 3 weeks in. I had hives all over my legs, my joints, feet, and hands swelled up and became so painful! After 3 days of experiencing this I stopped the MMI and it went away, I was devastated and scared of PTU and RAI. My doc put me on 100mg/3 times a day of PTU and the first few weeks I felt terrible, I was depressed, stressed out, scared etc… But after that I started feeling really good, almost somewhat normal! I had my levels checked on the 16th and things are going really good! I’m actually slightly hypo now and my doctor cut my dose in half and didn’t mention RAI at all (she pushed it heavily at my first appt.) I’m hoping this keeps up and I can even further reduce my dosage. My doctor doesn’t want to see me now until the end of August which kind of worries me so I think my next step is finding a naturopath and seeing if there are lifestyle changes I can make so I may eventually get off meds altogether. This whole journey has been really scary but just know you are not alone, hang in there!
@Steph82 – Just a quick note that while it’s important to make sure our lifestyles are as healthy as possible, there are currently no proven *safe* and *effective* alternative treatments for Graves’. Hopefully, you are planning to pursue any changes in conjunction with your current medical therapy and keep your endo in the loop. Unfortunately, the Foundation has had contact with individuals who chose to completely reject conventional therapy and later became much more ill (and even who died).
For patients whose levels are normal and stable on ATDs, 3 months is a pretty common interval between appointments. However, definitely be on the lookout for any hyper or hypo symptoms and request a new set of labs ASAP if you feel these coming on prior to your scheduled appointment.
Take care!
For my first bout with GD, I was on Methimazole for nearly a year before I had a reaction. We had also just conceived so I would have been switched anyway to PTU. I was taken off just a few weeks into the pregancy. I stayed in remission after delivery.
Fast forward about 6 years and I relapsed. I restarted PTU and have been taking it for a year. It has been fine. I personally liked the Methimazole a bit better because I only had to take it once a day and I think I felt just a bit better on it but I imagine that is a very individual assessement. It is very likely that I am just that much older this time and the GD is being a bit peskier to manage. I don’t think the PTU has been a significant difference.
Take care,
LaurelI’m so glad to hear this, LaurelM! I’m on day 2 of the PTU and so far there’s been no reaction, but obviously it’ll take a little time before it’s clear that I’m out of the woods, so to speak. I’m going in to get blood drawn next week to test my levels for for the first time since being on medication, as well as my liver enzymes. I’ve got my fingers crossed that this will be the drug for me.
Hi Steph82! I’m glad to hear that PTU didn’t cause a reaction for you and that you are feeling better!
Hello Misslex, There is a dermatological condition called Grover’s Disease which I have been diagnosed with. I have a minor case and control it with Triamcinolone Acetonide Cream or Ointment, which is a low cost generic. When I first got it I wondered if it was related to talking MMI. I doubt that it is, I think I got it from swimming in a pool which the management keeps at too warm a temperature, thereby turning it into a gigantic petri dish. I have switched to a cooler pool and it seems to be going away. Anyway, before concluding that a rash is GD or MMI related, it’s worth considering this as a possible cause.
cmac wrote:Hello Misslex, There is a dermatological condition called Grover’s Disease which I have been diagnosed with. I have a minor case and control it with Triamcinolone Acetonide Cream or Ointment, which is a low cost generic. When I first got it I wondered if it was related to talking MMI. I doubt that it is, I think I got it from swimming in a pool which the management keeps at too warm a temperature, thereby turning it into a gigantic petri dish. I have switched to a cooler pool and it seems to be going away. Anyway, before concluding that a rash is GD or MMI related, it’s worth considering this as a possible cause.Thanks cmac! This is good to know for the future. Unfortunately the reason my endo took me off of the MMI is because my left eyelid swelled up, making me look like someone had punched me, in addition to the normal side effect of itching and hives that many have on MMI. Right now I’m on my second day of PTU and so far so good!
Kimberley – I promise I’m not rejecting conventional treatment at all! I just want an outside perspective which is why I want to talk to a local naturopath, just to see what they have to say. I might go ahead and make an appt with a new Endo instead since I really don’t care for mine!
I think its crazy that my Endo is having me wait 3 months though because my numbers were slightly hypo and she has not checked my liver enzymes yet, aren’t they supposed to with PTU since its dangerous for the liver? That part makes me nervous! I am feeling a bit hypo (cold and very sleepy) but I’ll take that over hyper right now!
@Steph82 – Many docs routinely test for liver issues, although the latest medical guidance favors testing only at the start of treatment and then if symptoms of liver problems occur. (These symptoms can include fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes). Even in PTU, liver issues are fairly rare, but it *is* an issue to be aware of.
You know your body – and if you feel like you are slipping further into hypo territory, don’t be afraid to be the “squeaky wheel” and request a more timely appointment!
Good to know there are symptoms with liver issues! I asked my doc if there were and she rolled her eyes at me and said no. Did I mention I want to find a new doctor lol! I don’t know if its just her personality or culture or what but she rolls her eyes and giggles at my questions, makes me feel like she thinks I’m an idiot! My liver was never tested at the start of treatment…
Doctor did say that if I was feeling bad in any way to call and they would check things sooner. I really good lately so I’m hoping it continues!
Kimberly wrote:You know your body – and if you feel like you are slipping further into hypo territory, don’t be afraid to be the “squeaky wheel” and request a more timely appointment!Solid advice indeed. Had I really listened to my body and not made excuses (stress, aging, etc.,) I might very well have caught this dang disease long before things got as bad as they have.
While I’m not going to call a doc every time I sneeze I am definitely gonna listen closer to my body and respond according if something feels “off”.
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@ Steph82
Be it personality (or lack thereof, culture, or the way they part their hair) if your doctor isn’t a good fit for you by all means look into hiring a new one. Notice how I used the word “hiring”? I think we often forget that doctors are our employees. We hire them to do a job. If they are not performing then it’s time to find a new one.
I’m not sure I’d take eye-rolling and laughing as kindly as you did- this is serious biz and if a doctor fails to respect that it makes one wonder what else they aren’t doing right. I sounds like you’ve aleady got this sorted, though, and good for you!
No matter the case I’m happy to hear that you’re feeling good- that’s GREAT news! Enjoy every moment of it!
I hope you continue to feel better and all goes well with you and yours,
Boomer
Hi!
I started out on MMI, but after 2-1/2 months I had to switch to PTU. I wasn’t allergic to MMI, but it made me feel sedated, exhausted, brain dead and very fatigued. My endo said the same thing could happens with PTU, but it didnt. Neither drug controlled my thyroid levels on a consistent basis, and I was worried about long term use and liver problems, which is why I chose to have TT.
Hopefully the PTU will work great for you. Only annoyance for me was the very bitter taste, but not everyone tastes that.
Amy
amosmcd wrote:Hi!I started out on MMI, but after 2-1/2 months I had to switch to PTU. I wasn’t allergic to MMI, but it made me feel sedated, exhausted, brain dead and very fatigued. My endo said the same thing could happens with PTU, but it didnt. Neither drug controlled my thyroid levels on a consistent basis, and I was worried about long term use and liver problems, which is why I chose to have TT.
Hopefully the PTU will work great for you. Only annoyance for me was the very bitter taste, but not everyone tastes that.
Amy
Thanks, Amy! So far I haven’t experienced the bitter taste, but I am feeling more tired and “fuzzy” than I was when I was on MMI – good to know that this is something other people have experienced. How did TT work out for you?
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