[amosmcd]

#1059642

I started out in early Sept on MMI, which worked very well but gave me unbearable side effects. My endo switched me a month ago to PTU. I have not had any of the side effects I had on MMI, but I’m feeling very anxious, my HR is a little elevated and I’ve started having palpitations again–even though my endo just increased the PTU a week ago.

I was seeing my primary doc yesterday anyway and had my thyroid labs drawn. Hopefully will get the results early next week. But it makes me wonder why it took the MMI only a couple weeks at most to work and the PTU doesn’t seem to be working?

Anyone been on both? Thanks!

Amy

[snelsen]

#1176422

I am wondering if it is the (simplistic, I know) because since all of this is a guessing game re dosing and amount of ATD, that you are not receiving enough to counter the massive amount of extra thyroid hormone that is racing around your body, and causing the hyper symptoms. Are you o a beta blocker, too? Good thinking to have your labs drawn.
Believe me, those labs are known now. I look up labs on the computer ALL THE TIME, both as a professional, checking labs of patients, and also checking all my own labs, cause we have electronic access to that information as patients. If a thyroid panel is drawn in the morning, even in a super busy lab, they are certainly available to your doc now. I suggest calling the primary doc’s office, tell them (if you haven’t already) to fax them STAT to your endo, then call the endo, tell the office they are coming. The labs should help everyone decide what to do, along with your symptoms. It is a tricky business. You do want the ATD’s to help, but you don’t want to be plunged into hypo territory, either. All of this is so darned unpredictable. Hard for everyone!
Good luck, hope to hear from you again, glad you switched to PTU, I took it, too. So glad you are relieved of the unbearable side effects of MMI
Shirley

[amosmcd]

#1176424

Hi, Shirley!

I work at a hospital and we are not allowed to access our own medical records. We used to be able to, but for the past couple of years it’s a big no-no.

I will call my endo’s office and ask them to step in and rush the thyroid labs. They usually get results in a few days. The lab has always told me that one (or two) of the thyroid tests takes a day longer than the others. I think it depends on what place runs the tests. My primary care doc and the endo are on the same computer system and large medical group (in different buildings) so can easily share info between each other.

I’m not on a beta blocker, although I have one. My blood pressure has been on the low side, so I’d be afraid to take it unless my endo tells me to. I’m not as hyper-feeling as I was before getting diagnosed, but the anxiety is a lot worse.

I don’t have it nearly as bad as some folks on this forum, but I’m not feeling good right now, so would really like to feel normal again. I just posted a new post about my new endo appt. So other worries with that, too. Glad i’m going to work today and can be distracted by that. Thanks for your advice, Shirley. I really appreciate it. We still need to get together soon!

Amy

[gatorgirly]

#1176425

I would ask your endo about taking the beta blocker as I think it would really help that anxiety feeling, HR, and palpitations. I always have had low blood pressure, but taking the beta blocker does not lower mine significantly or noticeably. I do remember when I was first diagnosed, they told me to take 20mg propranolol at once in the morning and I felt like I was sinking into my mattress. I called and explained this feeling and they said I was taking too much and my bp was probably way too low. Once I started taking 10mg every 6 hours (now down to 10mg once a day), I felt a lot better and didn’t even notice the effects of it unless I missed a dose.

PS – I took PTU and did very well on it. My thyroid was a pesky little bugger and I could not achieve remission and had RAI eventually, but the PTU made a huge difference compared to how I felt pre-diagnosis/during the time it took for the PTU to kick in.

[Kimberly]

#1176426

Hello – To add to what Shirley said about dosing, keep in mind that you pretty much have to start over in finding the “sweet spot” when you switch from methimazole to PTU and vice-versa. There are some *general* guidelines for converting a dose of methimazole to an equivalent dose of PTU, but since they are two completely different drugs, this will still likely take some tweaking.

Take care!

[amosmcd]

#1176427

Called my endo’s office about the labs. Doc himself called back– the primary care doc’s office drew other labs but not the thyroid ones! ARGH!! So rushing in before work and he will call me with results tomorrow. ARGH!

All for now,
Amy

[catstuart7]

#1176423

My endo said when switching me from PTU back to MMI that the general rule is 10:1 so 50mg PTU is 5mg MMI. I’ve found so far that the methimazole is slightly more powerful than the PTU but it is very very similar at that ratio. I noticed you mentioned eye puffiness in another thread – for me that kicks up once my FT4 gets toward the bottom end of the range. I’m not sure where that fits in with TED.

[amosmcd]

#1176428

I posted in my other recent thread an update on my labs, which are now normal. Started on a beta blocker and reducing my PTU back to 2 pills a day instead of 3. Follow up with endo in a month for more labs. Hope I don’t get hypo again, but that seems to be the pattern I’m in. Hopefully the beta blocker will help with anxiety and palpitations.

Looks like the PTU is as effective as MMI with labs. The endo is not sure why the anxiety and palpitations are still hanging around, but thinks the ups and downs with my labs is the culprit.

Thanks, gatorgirly and catstuart for your advice and input! It’s good to have input from other Graves patients and also it helps not to feel so alone with it!

Amy

[Naisly]

#1176429

I will try to explain a bit more clearly.

PTU has a half life of about 75 minutes. One hour after you take it you swing hypo because PTU is at it’s strongest. After about 8hrs you start to swing hyper, TF3 starts to climb, for 4 more hrs you are quite hyper before your next pill.

amosmcd wrote:

The endo is not sure why the anxiety and palpitations are still hanging around

. A lot of endos don’t understand the dosing (believe it or not). Years ago, they used to only suggest twice daily.

So, what happens is you are swinging both hypo and hyper every day and this leads to more blood flow to your thyroid, which causes more antibodies. This is why it is important to take it 3 times a day. And NO, I don’t mean add to your dose, I mean SPLIT the dose your currently taking. I use a pill splitter.

And if you don’t believe me, thats fine, look up PTU manufacturers instructions -they all say 3x times a day.

Talk to your doctor aout it.

Oh and remember, just because your labs are ‘normal’ doesn’t mean they are normal for you – your ‘set point’. Most people do well with TF4 in the upper 1/2 mark.

~Naisly

[amosmcd]

#1176430

Hi, Naisly–

I’ll look it up because I’m curious, not because I think you’re wrong.

I do realize that “normal” labs aren’t necessarily normal for me, but it does mean the PTU is working, because a month ago, my labs showed me to be hyper. I had been feeling like the PTU wasn’t working at all, but obviously it is. Because I have Hashimoto’s and Graves’, my thyroid won’t stay put very long in a range that is normal for me, even on ATDs. But until I finish my research into TT, I have to work with the PTU.

My endo started out having me take PTU 50mg twice a day until I told him it was wearing off before the next dose, and he had me take 50mg three times a day. Now he wants me to cut back. I don’t have a problem taking it three times a day although with my work and sleep schedule it has to be 11:30am, 6:30pm and 12:30am, so can’t do the every 8 hours thing. I don’t think my endo would care.

I have felt better today after taking the beta blocker. I only took half of the 25mg pill since I’m so sensitive to meds and it helped. I’ll take the other half at bedtime. If it wears off too soon, I’ll take the entire 25mg pill. I just feel a bit sleepy, although that could be because the endo called me at 8:30am, then 3 of my 4 cats came in one by one to ask to be fed, then my son came in twice. I’m usually awake between 11-11:30am.

Thanks for the suggestions and info, Naisly.

Amy

[catstuart7]

#1176431

On PTU I had a much smoother experience – meaning consistency in how I felt throughout the day – taking it about 3 times a day. I sleep 9-10 hours a night so perfect 8 hour dosing was impossible. But I just picked the midpoint of my waking time and set my cell phone to beep at me at the time every day to remind me. Wasn’t a hardship at all. I’ve been taking my MMI twice a day since it has a longer half-life than PTU, but just today I’ve decided to split it three way just for the hell of it to see what happens. It won’t really change the labs, but maybe I’ll stop pigging out on junk food right before I’m due for the next dose and feeling a little hyper!

[Kimberly]

#1176432

Hello – The prescribing information for PTU recommends a 3x/day dosing regimen, but the latest medical guidance suggests 2-3x per day. My guess is that it’s probably easier to get patients to comply with the 2x/day regimen.

Although there certainly might be subtle shifts in levels in between doses, I have not seen any info from a *credible* source (medical association, peer-reviewed medical journal, university medical center, etc.) that patients *literally* swing between hyper and hypo in between doses of PTU. It seems to me that doing this 3x per day would be dangerous!

[amosmcd]

#1176433

I’m not doing too well cognitively lately and feeling overwhelmed by all the info I’ve gotten, so I’m not going to change my dosing schedule, although 3 x a day PTU may work out eventually.
I had to call the on-call endo tonight because I’ve developed a bad headache a few hours after taking the Atenolol (and I’m only taking 12.5mg twice a day.) He said to stop it for a couple days and then call my regular endo.

It’s been making me feel tired, too, although it was helping with the anxiety and palpitations. Just have to see how it goes.

I appreciate all the advice and input.

Amy

[Bobbi]

#1176434

It strikes me that to have credible evidence of the swings, you would have to do blood tests in between doses, every eight hours — which is probably not practical. What is known, is that the manufacturer information states that PTU’s viable period is 8 hours. That is what needs to be taken into account. I’m not sure that anyone knows what our levels are after 75 minutes, etc., for the same reasons. But what I do know is that if I did not take my PTU religiously every eight hours, I had periods of hyper symptoms in between doses. I also had serious brain fog — which might be explained by Naisley’s hypothesis about things. But, again, without really rigorous blood testing, I don’t know how anyone could “know.” As for why docs have gone to prescribing it twice a day, instead of three times a day, there could be any number of reasons, including a desire to minimize the liver side effects….if that were possible.

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