[jillie74]

#1071400

Thanks! My Endo. is practically non-existant. In fact, I found out I had Graves because he left me a voicemail saying "Your tests came back positive for Graves Disease. We’re calling in a prescription. Thanks." Needless to say, I am trying to get a good referral for a different doctor in the Pittsburgh area.

And yes, the PTU tastes awful. But, I guess it’s better than a pounding heart, shaking hands, and hot sweats….

THanks!!!!

[Kimberly]

#1071401

A quick note on Methimazole – the FDA bulletin that I read did indicate that there had been 5 cases of liver failure (3 resulting in death) in patients on Methimazole since the FDA started tracking "adverse events" in 1969.

PTU had 32 reported "adverse events" during that time frame, which resulted in 13 deaths and 11 liver transplants. About 1/3 of the patients were children, which is probably what resulted in this latest warning.

So the "adverse events" occur to one person about every 4 years on methimazole and one person every year or two on PTU. Pretty small odds, although it sucks if you’re the one!

I’ve heard speculation on another board that the number of serious cases could be significantly reduced if more doctors based dosing on Free T3/T4 instead of TSH. Because TSH is a lagging indicator, dosing off of TSH can result in patients taking too high of a dose for too long.

By the way, the FDA article mentioned that the American Thyroid Association plans to "update" its treatment guidelines for Graves sometime in the next few months. (Hey, thanks for thinking of us! )

[julies]

#1071402

Hi everyone

It has been a couple of crazy days for me

I had a terrable reaction to the Methimazole, hives red, hot, itchy

The on-call Endo took me off, told me I needed surgery, I am not ready for surgery. The PTU I took for a week, I was not in a nice mood, I only took it for a week. Is that a side effect, I would like to try it again,

I am very confused now ” title=”Confused” />

Jules

[ewmb]

#1071403

Why surgery and not RAI? I’d ask that question. RAI isn’t invasive and you have small children if I remember. A few days inconvenience with your own dishes and toilet etc. over recovery from surgery was my choice. You’ll have to make your own though. But ask lots of questions…….. Get a second opinion if you want to. I did that and didn’t tell my original doctor I was going to do it but did tell the second doctor that I was asking for a second opinion. I ended up staying with the first one since they were both of the same opinion and the first one was closer to me.

Let us know what happens.

ewmb

[trixytee34]

#1071404

well, Im back for some more updated info. I have just had my first true follow up appt. since starting the Tapazole. I had all the blood work done possible under the sun and have received my labs in the mail. While at my appt., my endo asked me a few questions about my symptoms, fortunately pretty mild over all. I am not really liking the occassional heart palps that I take a beta blocker only as needed, along with "mild" dry eyes and dry skin here and there. Since my blood work was not back before I met with the Dr., he told me he suspected my TSH levels were starting to creep back up towards the normal range and said to continue the Tapazole for another 4+ months, with a lab overhaul in between (in 6 weeks) and we will go from there. I received my test results by mail yesterday and my T3 uptake was 33% (normal range), T4 is 8.0 (normal), T7 is 2.6 (normal) but my TSH is still < .010 ?? I am confused as how I can have all normal levels overall but still have GD? :” title=”Question” />

[Ski]

#1071405

Couple of things ~ first, the TSH level lags behind the T4 readings, simply because it is "calculated" by the pituitary based on a running average (weeks’ worth of measurements). Since the T4 has only recently dropped, the TSH may remain suppressed, even for a few more weeks. You’ll probably notice it coming up by the next set of blood tests. In the meantime, the T4 level is likely the best one to watch. (Not sure what T7 is ~ perhaps we have different nomenclatures in different countries, if you’re not from the U.S.) Clarify ALL of this with your doctor.

Second, just because your levels are normal, this isn’t like a virus where you can say okay, ALL GONE, I’m better! Your body has literally been under attack, and reaching normal levels is just the beginning. Now you need to stabilize at normal levels. THEN your body can begin to heal from the assault. That takes time, perhaps months, before you can say you feel like you used to.

In the meantime, a little better every day, that’s all we ask. ” title=”Very Happy” /> Look for the small improvements, rejoice in them. Nothing happens quickly with thyroid imbalance, OR with correcting a thyroid imbalance. Be grateful each day that you’re further along the road, look at what you’ve come through, KNOW that it’s getting better all the time.

[trixytee34]

#1071406

Okay…well, it’s been another few weeks of treatment and I have found that I have interchanged some of the symptoms for others. My heart palps are not as frequent (but still creep up every now and then)….BUT…my mood swings are not too thrilling. I have found that EVERYTHING seems to upset me. ESPECIALLY…my husband! UGH! My patience has run pretty thin and my sleeping pattern is off again (even though I am on 10mg Ambien also). I have found that my appetite is almost void one moment then I am famished the next. Lucky me, I am not one of those with GD to not have the weight loss issue, which means I seem to be creeping up in the pounds. I find that I cannot sit still, my mind is constantly racing and I am grinding my teeth more often than not. Any other time in my life, I might have thought I was losing my mind, but I do have to say that I am thankful to read that I am not the only one out there going through this.
Again…thanks for you out there that have shown me a saving grace!

Until next time…..

[trixytee34]

#1071407

Thanks for all of your input. I have had my 8 week lab follow up this week since my last appt. and received a call from the Dr’s office to ask how I was feeling because of my results. I explained all of the symptoms I have been experiencing (all of them under the sun from dry, irritated eyes, crazy insomnia, high HR and palpatations, numbing and tingling sensations in my arms and painful stomach and digestive issues) and was told to discontinue my Tapazole (10mg) all thogether and for me to come in for blood tests every few days to make sure I am not having any medication side effects? HUH??! I was also told that my TSH was back up to 2.2 (isn’t that good?).
I have been feeling like CRAP these past several weeks and have only found that it was to be expected by reading through many pf the entries on this website. It appears that everyone goes through a pitsy period with GD and feel okay one day and then terrible the next, so I never thought to call my Dr’s office to complain about it? My next, "true" appointment wasn’t scheduled until Oct but my endo wants me in asap. Not sure what to expect now???

[ewmb]

#1071408

Did they check your white count, liver function things that could indicate that you are not doing well on the tapazole? I actually went hypo on medication. If you TSH and other numbers are in line with normal I guess that they want to see if you are in remission. I went off medication, I think I was on 2.5 mg, to have uptake done last summer. I was around your TSH and after I had the tests I decided not to go back on the medication. I didn’t stay in remission and went hyper again and chose RAI this summer. Call him back and ask some questions if you’re not sure what he said at the appointment. It can sometimes be hard to remember when you’re not feeling well.

Let us know how things go off the medication.

ewmb

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