Damn Your Eyes

A note about my eye exam today:

I need to update my blog more often — for myself, more than anyone else. This morning, I had my first eye exam in 7 years and I looked back here to see if I’d said anything about the last time and saw I’d had a reaction to the yellow eye drops. I had no memory of this and it saved me from possibly having another reaction today for a not-really-needed test. So, I’m going to make a note about today’s experience to remind myself in the future not to bother going to an ophthalmologist again!

My vision was 20/15 the last time I had my eyes checked. I never needed glasses at all until July of 2020, when I realised I couldn’t see my vein very well when putting in a peripheral IV catheter to do IVIG. Since then–not even 2 years–I’ve gone up 3 magnification strengths and my right eye has significantly worse vision than the left. My distance vision is a little worse, too, which I realised when my husband (who is 12 years older than I am) could make out signs on the highway that I couldn’t.

July, 2020: The first day of the rest of my farsighted life: I had to borrow my husband’s glasses to put in my IV.

Of course, this is totally normal for people my age, but my brother started to need glasses after spending time on a submarine and had a theory that it was because he didn’t focus on anything more than about 8 feet away for so many months. I think this might hold some truth for those of us who spend so little time outside, looking at horizons and focusing on long distances.

I have a ton of eye symptoms, which bother me much more than the need for readers, but I’ve been told there is no remedy for any of it (except dry eyes). I was told in the past: “When your overall health is poor, your eye health is poor, too.” The ophthalmologist today actually said that my eye health was good, but my symptoms are probably neurological (migraines, dysautonomia etc).

Some of my eye symptoms are: floaters; blurriness; pain in orbital muscles when moving my eyes; itchy eyelashes; dry eye to the point that when I blink in the mornings, my tears feel like acid hitting my eyeballs; right eyelid spasms; light sensitivity; trouble tracking when scrolling on my phone or reading blocks of text; migraines that feel like my right eye is going to explode out of its socket (it’s silly, but I often push my eye back in with the palm of my hand because it really feels like it might pop out). I used to say that my eyes felt like I’d put grit into Vaseline and then smeared it over my eyes.

I have had radioiodine ablation on my thyroid for Graves disease (or some sort of autoimmune presentation of hyperthyroidism–endocrinologists have disagreed on whether it’s actually Graves) and was told to pay attention to eye symptoms, but the doctor today didn’t see any evidence of that being a problem. I am also positive for one of the Sjogren’s markers (carbonic anhydrase VI IgG antibodies), which ophthalmologists treat no differently than dry eye. He rattled off a bunch of things that I’ve tried in the past that have done nothing (eye drops, eye scrubs) and some I haven’t (take omega 3s, humidifier in bedroom).

He said my optic nerves, blood vessels, maculae etc were all normal. During the visual acuity test, none of the letters were sharp, but I could guess most, even though they were blurry. The doctor said my vision was considered 20/20 because I could guess 3 out of 5 of the bottom line, adding he wouldn’t be able to see any of them at all. This is the thing when you’ve had great vision your whole life–you don’t really know what is “normal” or acceptable.” I hate not being able to see the letters clearly, but being able to guess them at all, even though I was straining and it was very blurry, is still considered 20/20.

They said I am doing no damage to my eyes using the cheapo 3-pack of Costco reading glasses. It doesn’t matter what strength I use or whether I use different magnifications (I have various glasses scattered in different rooms) or whether I’m using the lenses that work for one eye, but not the other. Essentially, if you can move the phone/book closer or further away and make it work, then everything’s fine. They said I could get prescription glasses, but, if I’m getting by, there is no need. I don’t want any more energy expenditure on anything, so I’m sticking with what I’m doing. My husband was mildly alarmed by this: But if you can get prescription glasses that correct for the differences in your eyes and it makes your life better, why not? Energy is why not. It all comes down to having nothing extra to give.

For anyone with MCAS, I have had the yellow eye drops 3 times and, the last time, I had a reaction. A friend told me I could ask for a retinal scan in lieu of dilation, which I did and it was easy and only took a few minutes. Once in the past, I was told that one of my eyes had high pressure (intraocular fluid pressure) and this can be a warning for glaucoma and I should keep an eye on it (I just caught that totally unintended pun when I did a reread 🙂 ). The gold standard for checking eye pressure is the use of yellow numbing eye drops, which are used with a slit lamp and blue light. A step down from that is a handheld tonometer, which still needs numbing drops, but they don’t have the yellow dye. Lastly, there is a device called an Icare, which doesn’t need drops at all. The latter would have been my preference since I don’t know what caused the previous reaction (the dye, the numbing medication or the preservatives), but they didn’t have one at the location where I had my appointment today, so I decided to skip the pressure check, thinking/hoping I probably don’t have a problem.

Lastly, I want to note that this was BY FAR the most risky covid exposure I’ve had (or, really, just human germ exposure, in general). The rooms are tiny with no windows or ventilation and the doctor and his assistant both had to get very close to my face. Also, they cancelled my appointment last week because the ophthalmologist was out sick and I wonder — out sick with what? Even a head cold would be a deal-breaker for me. All in all, I regret the appointment because the risk of contracting a virus was very much outweighed by the chances that I have eye problems that can be remedied (I now know). But I didn’t know what was normal or should be treated and I certainly would want to know if intracranial hyper/hypotension was causing any eye damage (as seen on a CINE MRI, I have blocked cerebral spinal fluid flow in my brain because of low-lying cerebellar tonsils, which can cause intracranial pressure issues). I didn’t know if wearing shitty readers could damage my eyesight further (they can’t) and I didn’t know if having worse vision in one eye was a concern (it’s not) and I didn’t know if I could brush off all of my eye symptoms as neurological (I can). Now I know and you do, too. 🙂 Title Credit

Hyperthyroidism

goiters

After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.”

It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.”

I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.