Archive for May, 2010

So how am I doing with this life-altering disease? Pretty well, actually. Admittedly, I was diagnosed with mild Graves disease and mild (Level 2) Graves ophthalmology, but nothing feels mild with this disease, especially pre-PTU.  However, once I started medication, and after the initial 3-6 week adjustment period, my life is actually pretty normal right now.

EYES: My eyes are better than they have been in a while (especially after the second flare up).  The bags under my eyes got better. There is still some lingering photosensitivity and I have to wear sun glasses when I drive, I expect both to diminish in time. After the initial flare up, I did get to a point where I didn’t have anymore photosensitivity, but still had the bags. Right now, the bags aren’t too bad and the photosensitivity is still present. Call me vain, but I prefer the “no bags”, well, small bags.

NOTE: My eyes got better after 1 year of constant puffiness and flare-ups – it just stopped. I have some remaining puffiness, particularly under my left eye, but they don’t flare up the way they used to! Good luck to all!

PTU DOSAGE: I think that I am permanently upping my PTU dosage to 2.5 pills a day.  The two 50 mg pills a day just isn’t enough to keep my heart palpitations down. The extra 1/4 pill in the morning and at night help keep me feeling good all day. Yes, I said I’m feeling good!  I never thought I’d get there, but that’s what the right medication does. 



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I am trying to capture everything that I learned about life on PTU.

I opted to take an ATD, (” anti-thyroid drug”), as my first course of action. Like any disease, you must first learn the lingo.  The ATD I’m taking is called PTU – Propylthiouracil.  When I was prescribed it, all I was told was “If you get a fever or sore throat, go to the doctor”.  I have already blogged about taking PTU, so you can read how the sore throat thing worked out here , however, I did leave out some details.

The first time I took PTU, I was overwhelmed by the strong metallic taste. Worst yet, it lasted a while. I was drinking a flavoured drink at the time of my first dosage (Greens to Go – it’s supposed be healthy and high in antioxidants. It’s expensive, but tastes good.  Is it a cure? No.).  Anyway, I couldn’t get over how different my drink tasted after taking the pill. It changed the taste, making it bitter. While I was on a relatively small dosage – 50 mg, twice a day – it didn’t taste like a small dosage.  For a while, I tried to take my pills after my morning coffee and after my dinner, so I could still enjoy them. However, after 1-2 months of being on the pills, I hardly notice the taste at all any more and don’t worry about it at all!


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As a diehard coffee drinker, I was wondering if I could drink coffee with Graves disease. 

First, before I was diagnosed with the disease, I went from drinking an extra-large Tim Horton’s to going without a coffee completely on some days (which is unheard of for me).  This was because I felt stimulated without having a coffee, although I missed the routine.

  • Americans should note that an extra-large Tim Horton’s coffee is about the same as a Starbucks Grande – 16 oz.

When my levels are a little high, yes, I can notice an increase in heart palpitations. When my levels feel normal, I don’t notice any difference at all from before the Graves diagnosis.

What do the doctor’s say? I’ve been to 2 endocrinologists who both say that coffee doesn’t affect my thyroid levels, and that as long as I can live with the symptoms, I’m free to drink coffee. Yay!

On a side note, I just looked up how many calories are in my drink of choice, an XL double-double. It turns out there are 280 kCal!  Okay, so time for me to drop the extra cream and sugar. Sheesh!

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It’s so hard to find anything helpful on the thyroid eye disease, or “Graves ophthalmology”. It’s all so individual and basically all I know is that it should clear up in a few months to a few years. Wonderful.  I’ve had the eye disease since January 27, 2010.  It seems to get worse when my symptoms for high thyroid also flare up. My doctor tells me that the two diseases are only loosely correlated and may not run in sync, but in my personal experience, they seem highly related. 

I’ve been told not to take extra PTU, but it seems to make me a) feel better and b) helps my eyes. How am I supposed to suffer when I know that makes me feel better? Call me obstinate, but I think I know my body better than someone who’s met me once (I switched doctors recently, although they both said don’t mess with my PTU dosage).  I think they say that because PTU takes a while to take full effect, but it does also have short half-life, meaning it’s out of my system within 12 hours, so I feel relatively safe self-medicating.  If you’re a doctor and can convince me otherwise, please say so.

My eyes flared up again this week – haven’t been this bad in months (well, I got it in January) – extra puffy and extra photo-sensitive.  I wake up and they feel swollen. Today, I finally got some relief  – a little less puffy and sensitive by the evening after about 7 days of them being worse than usual.  The only solace is knowing that once it’s gone, it should be gone forever. Probably about a year left of symptoms. Nice. I will post a photo one of these days.  Not bulgy, but horrible bags.

Two things happened that could explain the eyes, possibly.


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A couple of things have happened since my last blog. I finished this intense program that I was taking that was really stressing me out. I’ve been off for a week now and things are feeling better.  I was told to wait about 2 more months to try to conceive, but it’s been 5 months since my miscarriage and I’m getting antsy. With the stress gone and the PTU starting to “kick in” I’m pondering trying this month.

My greatest concern, as always, is my eyes.  They are still puffy every day and it’s hard to look at myself every morning, but I haven’t let it slow me down yet. Life’s too short. I stopped using eye drops for a while because they weren’t sore anymore, but I find it helps with the puffiness, especially at night time. 


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