[amosmcd]

#1059571

Just got a call from my endo. I had stopped Methimazole 3 weeks ago due to being hyPO and got my labs drawn last Friday as scheduled to see what would happen off the Methimazole (which I hated and did not tolerate, even though it worked.)

Here’s my labs:

TSH
11/16/12: 4.760 (0.270-4.20)
12/7/12: 0.054

FreeT4
11/16/12: 0.60 (0.93-1.70)
12/7/12: 1.22

FreeT3
11/16/12: not done
12/7/12: 4.5 (2.0-4.4)

TPO auto AB
12/7/12 111 (0-34)

TSI
6/14/12: 210 (0-139)
12/7/12: 396

I’ve been feeling hyper the last week to 10 days. Not horrible, but getting heart palpitations again, feeling more anxious, and my heart rate is up and down (right now it’s 84, but I’m feeling anxious after talking to the doc!)

We discussed the plan, and I said I didn’t want to decide on a definitive treatment (RAI vs TT) until after the first of the year. He said he thought a trial of PTU would help, since the Methimazole made me so sedated. I’m to let him know if the PTU does the same thing. I’m to take 50mg twice a day.

I mentioned not wanting RAI and prefering TT, but he is really against TT. He would not even give me a referral to a surgeon. Said TT should only be done in cases where there is TED, which I don’t have. He said I should seek out an endo second opinion if I’m set on TT. I told him I do have small studies that show increased risk of breast CA after RAI (which is what I’m afraid of) and he said he would look at them at my next appt in 6 weeks.

Right now I’m overwhelmed with fear that the PTU will zonk me out like the Methimazole did, so I’m really not wanting to start it (but will, of course.) I felt so good off of it while I was euthyroid for about 10 days. I am also very worried about a dear friend who is ill and it could be very serious, she just started seeing the doc last Friday. My son and I are spending the holidays with her (she lives out of state) and she still wants us to come. She sees a specialist today. My autistic nephew was just diagnosed with Bell’s Palsy today–my sister also lives out of state. So I’m worried about all this, and tired of the ups and downs of Graves, even though I really do have a mild case. It should be able to be handled just with ATD’s, but of course I have to have an intolerance to them. I’m putting the cart before the horse with PTU, but my endo says they work the same way. And of course I’m worried about RAI vs. TT, which I had posted about a while ago.

I guess I’m just venting. On the 22nd, it’ll be 2 years since my Mom passed away, and Christmas has never been the same since (which is why I wanted to spend it with my friend.)

Thanks for listening again and putting up with my whining.

Amy

[catstuart7]

#1175831

Hi Amy, I hope the PTU works out for you – I was able to tolerate it okay. They say the ratio of methimazole to PTU is 1:10, so were you on 10mg of methimazole before? Because of PTU’s short half-life (2-3 hours) it is best to take it in divided doses 3 times a day I’m so sorry about your mom and the difficult family times coming at the holidays now – I hope your visit with your friend brings comfort.

[snelsen]

#1175832

Hi Amy, I did great on PTU. If you want the name of another good endo in Seattle PM me. I had surgery, wanted surgery, had a lot of good reasons, plus my own preference to have surgery. Since your endo does not have a legitimate reason relating to your health I think he is out of line big time for not assisting you with a referral to a surgeon. I also worked in surgery at UWMC for 20+ years, so I can use my contacts for anywhere in Seattle , find a good surgeon for you to speak to.

(My mom died on Chistmas day, also.”
Shirley

[amosmcd]

#1175833

Hi, Catstuart–

I was on 10mg of Methimazole to start with back in Sept, then it was tapered down to 5mg the last month I was on it. I wanted to be on a smaller dose of PTU. Sounds like it’s not that that much different than the 10mg of Methimazole. I don’t want to take the PTU 3 times a day anyway, plus I responded pretty quickly to the MMI (tired of typing Methimazole!) and I’m sure my endo doesn’t want me to get hypo again.

I’m frustrated with my endo. He asks what I want to do and when I tell him, he says no. It’s only adding to my anxiety.

I’mhoping my friend will not be diagnosed with anything serious (they are looking at Lymphoma as a possible diagnosis. She will find out more after a CT scan tomorrow. She is scared, I am so worried. More anxiety.

Thanks for your post.
Amy

[amosmcd]

#1175834

Hi, Shirley–

Yeah, I’m not too happy with my endo. I couldn’t believe he wouldn’t give me a referral. Maybe he thinks if something went wrong during surely, I’d blame him–fat chance since he’s dragging his heels about the whole thing

I think he thinks his reasons are legitimate, but I want to at least speak with a surgeon about TT before I make a decision.

Not looking forward to starting the PTU tomorrow. Just gotta cross my fingers it doesn’t sedate me like the MMI, but the first listed of common side effects is drowsiness.

I’d love another endo’s name. I’ll PM you now.

Thanks, Shirley!

Amy

[catstuart7]

#1175835

Hi Amy, to give yourself your best chance at experiencing PTU positively please consider splitting it into 3 doses – this is recommended in the detailed patient information. My guess is you are taking one 50mg pill twice a day right? With a pill splitter you can chop them up and take 37.5 (3/4 of a pill) 1st dose, 25mg (1/2 a pill or two 1/4’s) second dose , 37.5 mg (3/4 of pill) third dose. I set my cell phone alarm to remind me of the middle dose which is the easiest to forget. I know you said you didn’t want to take PTU 3x’s a day so I won’t be offended if you ignore all this but I want you to have your very best chance for success. I hope your friend will get some good news with the CT scan. Good luck no matter what!

[LaurelM]

#1175836

Hi Amy,

I have been OK so far with the PTU. I take it morning and night. When I first started, I was taking it at noon as well. Taking the MMI only once per day was nicer but the twice a day isn’t bad. I do have to set my cell phone alarm to remind me and I have one of those pill dispensers that you fill at the beginning of the week so I know at a glance if I took it or not. I have not noticed drowsiness but I have noticed occasional fatigue and hair loss but I am attibuting that more to the fact that while we seem to been getting closer to a matainence dose, we haven’t quite settled in on one yet.

Perhaps your GP/family doc could give you a recommendation/referral to a surgeon if you endo won’t. I feel pretty spoiled by mine. I recently saw her with my daughter (for an unrelated issue) and she asked how I was doing and noted that she always gets an update from my endo. I expressed that though I am doing mostly well, I am sometimes tired of it. She responded that she thought I was getting good care but that if I ever wanted another opinion, she would give me a referral. Needless to say, I’m a big fan of our Dr. and family medicine in general. I also really do like my endo. I think his preference is to give the ATDs a good trial to see if avoiding RAI or surgery is possible but I think he would also take my preferences into consideration. I can’t remember if I sent you his info before but if you want it, send me a PM. He is on the Eastside.

I am hoping for the best for your friend. You have a lot of stress to deal with right now.

Laurel

[amosmcd]

#1175837

Hi, Catstuart–

I did see it said 3x/day on the pt info sheet. I don’t know what to think. I want to take the PTU in whatever way will cause the least possible sedation. That’s the side effect that just wiped me out with the MMI. Don’t know which way would be best for that.

I do appreciate your suggestion!

Amy

[Kimberly]

#1175838

Hi Amy – Sending {{{hugs}}} your way during this difficult time of year.

Since your endo opened the door for getting a second opinion, perhaps that would be helpful in your case?

Also, when discussing studies on cancer, make sure you are using those studies that specifically looked at RAI for treatment of hyperthyroidism vs. treatment of thyroid cancer, since the dose is much higher for thyroid cancer patients.

Wishing you success as you get started with the PTU!

[amosmcd]

#1175839

Hi, Laurel–

I think I’ll start with the twice a day the doc prescribed, and then change to 3x/day if it makes me drowsy and sedated.

I hadn’t had a primary care doc for a few years and just got a new one early this Fall. So I’ve only seen her once. I like her so far. I’ll make an appt to see her; I need to anyway just to follow-up from my last appt. I’m glad you have a good relationship with yours. The last two I had went to concierge medicine and I really liked them and had been with them for years, so that’s been disappointing.

As much as I’d like to see your doc, starting the first of the year, my insurance is really cracking down on seeing docs only affiliated with the hospital in Seattle where I work. Otherwise they only pay 70%, which I can’t afford. I still have choices I can make within that for other endos. But I really appreciate your offer!

Amy

[snelsen]

#1175840

Amy, just sent a PM

[amosmcd]

#1175841

Thanks, Kimberly! The studies I looked at were for RAI for Graves treatment.

I’m definitely going to get a second opinion, and might just switch endos if I find another one I like better.

Thanks for your support and help.

Amy

[amosmcd]

#1175842

I got very good news from my friend! The CT ruled out lymphoma, so she is undergoing treatment for her spleen problem. We are all so relieved!!

The next day my son called me and told me my treadmill is broken (it’s 15 years old at least and he’s been running on it and the front roller is cracked.) So now I have to find a new treadmill. Hate walking outside in the cold and rain. Will look at used sports equipment places, because I can’t afford a new one. So another stress. I’m not made of money!

I’ve been taking the PTU for 3 days now. So far it’s not causing the drowsiness and sedation that the Methimazole (MMI) did, but it’s been upsetting my stomach and has the worst aftertaste. Yesterday at work I had a bout of diarrhea and had to go lay down and rest. Immodium helped with that, but hope that’s not a frequent side effect. It’s not listed on the side effects, although stomach upset is. I’m taking it with breakfast, and a snack at bedtime. Didn’t sleep well last night, but hoping that isn’t a new side effect. The MMI caused a lot of sleep disturbances. Probably take a little nap later.

It’ll be interesting to see how it plays out the longer I’m on it.

Amy

[catstuart7]

#1175843

I’m so glad for your friend! Always good to know something good happened for somebody. I’m so glad you aren’t feeling drowsy from the PTU – I’m especially interested to see what happens because I was on it and switched back to MMI recently and not feeling too great. But yeah PTU does taste horrible, I made a game of finding ways to swallow it as quickly as possible putting it far back on my tongue – it’s like the second the water hits it the water gets flavored with it and the taste soaks in. Still small price to pay if it works otherwise. As for GI symptoms, I had some slight nausea the first couple of days and then nothing after that.

[amosmcd]

#1175844

Thanks, Catstuart!

I hope the MMI works better for you. It has the same nasty taste, but for me the taste went away as soon as I drank something with a flavor to it. The PTU aftertaste just wells up like a bitter gas once it hits my stomach. Bleh! But I’ll trade that for the sedation of the MMI. I hope you don’t get that effect, but I seem to have been a rare case.

Take care,

Amy

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