Archive for the ‘eye puffiness’ Category

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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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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So I’ve been on PTU for 4 weeks now and most days I feel fine. However, I don’t feel like I’m being perfectly controlled.

I got sick last week and I felt like my thyroid levels were high, so I tried taking a 1/4 or 1/5 of my PTU pill during the middle of the day, which I don’t normally do.  The one day it worked perfectly. My eyes became less sore and my sinuses became less runny.  Yesterday I tried the same thing, but I must have overdosed (I took 1/2 pill) and I was shivering cold all day, even in a hot bath, and I was exhausted.

It’s tough for me to distinguish having a cold from having symptoms of a high thyroid.  Yesterday I was runny, congested and exhausted and tired. Today I feel mostly fine, which tells me that it’s not 100% a flu virus making me sick, it’s my thyroid levels adding to my symptoms. I had a sore throat for 3.5 weeks straight and it finally went away. 


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Okay, so after some debate, yes, I do have Thyroid Eye Disease or Graves ophthalmology, however, I don’t have the bulging eyes. I do have dry and puffy eyes and some photosensitivituy still, although that has been better lately.

I FINALLY was given PTU (Propylthiouracil) last Thursday and noticed an instant decrease in appetite. However, by the end of the first week I started getting tired. I also had a sore throat. On Friday, I felt suddenly weak and had to lay down. I did not feel any better after an hour and my heart was pounding and I was exhausted. I called Telehealth and they sent me to the Emergency ward at the hospital. I got an EKG and my heart was normal.  After about 2-3 hours I started feeling better.

Apparently, I just had a big drop or swing in thyroid levels (at least that’s what they think happened). However, I never read about that happening anywhere online, so I had no idea what was happening to me. All I had read was that those were symptoms of agranulocytosis, and I was panicking. 

I am currently taking 50 mg of PTU, twice a day. I wonder if it’s too much because I am exhausted again today.

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I apparently do not have Graves eye disease, or Graves ophthamology. My eyes do not bulge, but they are constantly sore, photosensitive, and extremely dry. The lids, top and bottom get swollen, which drains throughout the day, but then I get very dark circles underneath my eyes.

I am going to get my thyroid removed and I hope this helps because my eyes feel this way all day, every day. It seems worse when my thyroid levels are high.

My doctor is completely lackadaisical in treating me and I’ve been given no drugs to help me in the 8 months I’ve had the disease, simply because my last blood test was “not that high”, even though my symptoms fluctuate from day to day, week to week. Currently, I feel my levels are extremely high.  Even the pharmacist reacted with disdain when I came in to try another brand of beta-blocker instead of fulfilling a prescription for PTU.  

He’s like, “Have you schedule RAI or thyroidectomy yet?”

I said, “No. I’m still waiting for drugs first.”

His look said it all. I’m not getting the kind of treatment I deserve. I actually think that drugs might be perfect for me because my levels aren’t too high. I think that makes me a good candidate to go into remission. I need to do more research, so if you know anything, please comment below!


Updates on this issue see:

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I finally took it upon myself to find some local resources. Even with a supportive family, no one really knows what I’m going through, especially when you’re good at faking being fine. I am, however, looking to meet people in the Kitchener-Waterloo area who also have a thyroid disorder.

I had read that coffee was not good for the condition, and reluctantly went on decaf for a couple of days, but have officially been told by my doctor that it’s alright. Thank god!

I read in my little thyroid book that if you get gray hair before your 30 that this is a warning sign of possible future thyroid problems. Sure enough, I am the only sibling in my family to get gray hair in my 20s and sure enough, thyroid problems at 31, 1.5 years after my daughter was born – almost like it was scripted.


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