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Archive for the ‘eye puffiness’ Category

I’d stumbled across this site before, but it has a lot of really interesting theories about Thyroid Eye Disease (TED) / Graves Ophthamology. ttp://www.ithyroid.com/thyroid_eye_disease.htm 

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!

Here are some interesting facts and theories about TED from this site. If you are desperate (as I am) to at least improve your TED, then these might be worth giving a shot. Please comment if any have worked for you.

1. Pass the Potassium

When potassium is deficient the cell membrane allows more water to enter the cell than escape so cells swell up with water. This is manifested in people as edema and many hypers report gaining weight (me!) on very little calorie intake and generally having edema. Myxedema which is another form of edema and which is seen in Graves’ as pretibial myxedema or orbital fibroblast proliferation may have the same origin: from potassium deficiency. I consider it quite likely that potassium deficiency is a major contributing cause to TED and worthy of further investigation. However, I doubt if potassium deficiency is the only cause. Most likely it is one of several deficiencies whose combination leads to the condition.

Of these symptoms of postassium deficiency, I have highlighted the ones I have

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So, I’ve always struggled with defining what is wrong with my eyes because they’re not a textbook case of anything. All I know is that in January 2010 they got inflamed, I got double vision and photosensitivity and puffy eyes – and have been like that every day since. 

Since then my main symptoms are puffy eye lids and some photo sensitivity. I’ve been to the optomistrist who said that there is no sign of ocular muscle inflammation and my eye sight was still better than 20/20 (although they were very dry – I wasn’t on PTU yet, which helped with the dryness). 

So what do I have? I don’t really notice lid lag or a pronounced stare. Here’s a picture of my eye – sometimes it’s better than this, rarely has it been worse. The left is worse than the right. I also frequently feel movement behind my eyes, like a pulsing or twitching feeling, predominantly in my left eye, which is worse.

thyroid eye disease female thyroid eye disease male

Finally, I think it’s safe to say that pregnancy has not affected/improved my eye condition. It will be interesting/scary to see what delivery does to it. 

Updated Sept 17, 2010

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Last time I blogged my symptoms of Graves Disease (GD) were melting away. About week 8 they started to pick up again, culminating at week 13. This past weekend I had many symptoms: thinning hair, heart palpitations, exhaustion.  I started upping my PTU dosage, taking double my meds over the weekend just to control my symptoms, which didn’t allow me to sleep and made me feel awful because they seemed to exacerbate my pregnancy symptoms of exhaustion and nausea.  I went to bed a 7:00 p.m. on Saturday night and woke up at 8:00 a.m. Sunday morning, with a brief awakening at 2:00 a.m. where I had to read a chapter of my book to fall back asleep (Tipping Point, by Malcolm Gladwell – the 3rd book of his that I’ve read – all amazing!).

The good news: I had a “dating ultrasound” at 10.5 weeks and I actually saw the baby and its heart beat so I felt fairly comfortable that I wasn’t going to miscarry. We told our parents at 12 weeks. We haven’t told our friends yet, but I’m also starting a new career so I’m not broadcasting my pregnancy for that reason too. Although, I have started to show (a month earlier than my first pregnancy). I’m still a little heavier than the first time around – I lost all of the baby weight but gained 10 pounds after the miscarriage, for some mysterious reason, even though GD was in full effect. 

The bad news: I don’t know if GD has anything to do with it, but the exhaustion and the nausea are way worse with this pregnancy than with my first. After my epic sleep on Saturday, I feel a little better. I’m cruising into 2nd trimester so hopefully the worst is behind me. 

Graves Ophthamology update: my eyes got a little worse with the increase in GD symptoms, but haven’t fully relapsed (i.e., photosensitivity remained fairly constant).

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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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