Archive for December, 2010

Okay, so I had an Christmas party last night and I had 3 glasses of red wine. All weekend my eyes had been relatively inflammed and puffy. I woke up this morning with good eyes – that never happens!

What I’ve just read is: “The resveratrol in red wine, is rich in antioxidants and reported to offer improvement in TED. ”

This is awesome news for Christmas, but what if I get pregnant again? Hmm, maybe the plant bioflavinoids found in dark chocolate will have a similar effect.

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!

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So what has my life been like since the diagnosis?  Despite 2 miscarriages – the first one most likely due to Graves (GD was undiagnosed before I got pregnant), and the 2nd one unrelated – I am doing fairly well. My biggest complaint is the Thyroid Eye Disease, and even that seems a little better these days.

Let’s start with my eyes.  As I’ve read, the disease can wax and wane.  I have definitely noticed this – unexplained improvements (good days), and unexplained flare ups (bad days). Lately, I noticed that they were worse right before bed time, which didn’t make sense to me. Plus, I’d wake up worse but they’d get better throughout the day (usually, I don’t see a big improvement throughout the day).  Well, I got blood work done yesterday and I may have an explanation. My last blood test for TSH was 1.9!  Until my last pregnancy which endedin October, it had always been below normal. Now it’s smack dab in the middle of normal. After my  miscarriage my symptoms worsened and I thought my thyroid levels were spiking. I started taking extra PTU (self-prescribed), which I think maybe triggered this TSH improvement (I had only been on 100 mg / day).   I had read that changes/swings in thyroid levels could affect TED, and that if I was going hypo (even temporarily), then this could worsen my eye condition.  For the last two days I’ve taken my 2 PTU pills a day (50 mg each) and my eyes are better today!  Could be coincidence, but I’ll keep paying attention to the association between my PTU dosage and my thyroid eye disease.


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Two weeks ago I was marveling that my eyes were looking better and was hoping that it was going into remission (I’ve had it for 11 months).

Today, my eyes are as bad as they’ve ever been.  I think the hardest thing about this disease, besides looking tired every day, is that it’s so unpredictable and I’m not able to take control of it. There is the feeling of helplessness and hopelessness.  I have no idea what to expect, or when. I don’t know what makes my eyes flare up or calm down (I’ve done nothing differently over these last two weeks).  I have no idea how long I will look this way.

If you have TEDs (especially if you’ve seen an improvement), please let me know!

This article is pretty good.

Sometimes when my hyperthyroid symptoms are bad I take extra PTU. I wonder if this triggered my eye symptoms?  This article suggests that it might have.  My pulse still seems a little fast but still,…Even though the extra PTU makes me feel temporarily better, perhaps creates inconsistent levels and greater fluctuations? Does anyone know or are all treatments for this disease trial and error? Because so far, no one can give me any straight answers so I experiment.

Update April 17, 2011

Since my “vasculitis’ started in January 2011, I have noticed my eyes seem less puffy. Is it because my immune system is now attacking my veins? Either way, the puffiness has been better these last few months. For those who are keeping track, it seems better after 1 year with the disease. There is still some residual bags under my eyes that will probably require surgery – the left eye puffed up pretty good at the outset of the disease. Maybe time will slowly make it better. Plus, I have been under lots of stress with the vasculitis and the pregnancy, so maybe in the summer when I am less stressed and more active and healthy that I will notice a gradual improvement. One can hope!

Updated June, 2011

I now know had a severe b12 deficiency. That means that my TED symtpoms went away on their own after almost exactly 1 year! I have some residual puffiness that won’t go away, but no more fluctuations! Now that I know I’m not dying, I couldn’t be happier!

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Originally posted May 21, 2010 as “Hyperthyroid: Funny smelling pee. More frequent urination and bowel movements.  I’m reposting because I noticed a lot of people search “PTU and foul urine smell

Now that title should raise some eyebrows! haha. I keep forgetting to mention this symptom, but yes, my pee has not smelled the same since diagnosis.  I’ve had IBS, or irritable bowel syndrome since my teens, basically, and ironically, Graves disease has eliminated the constant constipation that I used to suffer from. One of my IBS symptoms was funny-smelling pee – basically it smelled kinda stinky – kind of like farts. Gross! I know, I’m disgusting.  Now, it smells kind of medicinal, but also stinky like farts.  Just throwing it out there in case anyone also has this symptom. I suspect it’s because of the sped-up metabolism and the PTU?

Also, I noticed that I pee more frequently when my thyroid levels are high. I just noticed recently that I no longer wake up in the middle of the night to pee!  High thyroid levels used to make me thirstier, but it also made me pee and poo more. I woke up every morning with a loose bowel movement and would have at least one more throughout the day.  Now, I sleep through the night and wake up to a semi-firm bowel movement. We must take comfort in the little victories. ha-ha.

PS, I’ve changed my blog theme a few times. If you’re wondering if it’s the same site you’ve been to before, it is!

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