The Continued Lack of Answers

I went to see my boss’s wife’s internist earlier in the week and my GP today. Both basically said something like, “Anything I say will be conjecture – the endocrinologist is really the one who is going to get this whole thing figured out.” So I continue to play the waiting game. The GP had run tests to see if I had Epstein-Barr activity, and to check my levels of iron, B12, and folic acid. I did not have active Epstein-Barr, and my levels of iron and B12 were fine. My folic acid was very high. She said, “Are you taking supplements? You might want to cut down.” I said I was, but that I didn’t think my supplement had folic acid listed on it. She said, “You really have a lot – it’s clear that your body’s good at absorbing it, because this is really high.” Then Michael asked, “What is folic acid in?” She replied, “Leafy green vegetables.” Well, that made us crack up. It turns out that my diet, which is extremely rich in leafy green vegetables, due to my love of arugula, spinach, and all sorts of greens, is more than sufficient in folic acid. I came home and looked it up, and it’s also abundant in dried beans and legumes. This may explain why I have so much of it. It has no known toxic level, so I’m not in any danger by continuing to eat lots of beans and greens.

The GP wants me to have a glucose tolerance test – that’s where they take your blood, give you a sugar drink, then take your blood once an hour for three hours. They do it when you’re fasting. As anyone who has had breakfast with me in the last ten years knows, I cannot have juice, syrup, or jam first thing in the morning, so I’m not anticipating this being any fun at all. I can already tell them what’s going to happen. I’m going to feel very, very bad.

In 1996, my nurse practitioner at Kaiser in Virginia suggested I could have this test if I Really Wanted To Know if I Had Hypoglycemia, and said that if I just wanted to continue to operate as if I had hypoglycemia, that was fine too. That was what I chose.

So the good news is that everything’s fine, except for whatever’s not fine, and we don’t know what that is. My GP said her guess, considering my difficulty sleeping, was cortisol issues, but she emphasized that that was purely a guess, and again, the endocrinologist was the one to sort it out.


Still a Wreck

Hi folks – I’m still suffering. I called my OB/GYN today, told her I was feeling worse, and asked her if there was any way I could get in to see an endocrinologist sooner than August 10th, since my level of functioning is very poor right now. She said to call on Monday and they’d call around and try to get something worked out for me. I would be perfectly willing to drive up to the Bay Area if it required that. I’m still exhausted, I’m hot, my heart is going faster than it should be, I’m anxious and weepy by turns, incredibly tired, shaky, sweaty, my breathing is labored, I’m slightly feverish, and this weekend my throat has been hurting. This all sounds a lot like hyperthyroidism to me, but of course I’ve had one thyroid panel come back fine already. We we’ll see what we can get arranged in terms of getting me in to see someone. I have been remembering my dreams more often than I usually do in the past few days – and in all my dreams, I have plenty of energy. Then I wake up and I feel awful again. It’s unpleasant.

Letting My Public Down

Just wanted to put a quick note up here to explain my lack of posts since May. I’m suffering from some sort of extended illness that’s causing me massive, life-altering fatigue in the middle of a period in which there is much to be done at work. My apologies for my absence from this endeavor.

So far they’ve determined that I do not have mononucleosis, my blood sugar levels are fine, and there’s nothing amiss with my thyroid. I have an appointment with an endocrinologist on August 10th (happy birthday, Francesca!) and will be seeing a GP soon to do more evaluation.

The good news is that whatever it is, I seem to be slowly improving. I was unable to go to work much of the first week of June, and now I’m slogging through it, though it’s a struggle. I was having tingling in my hands and feet, and that seems to have abated. I was having daily fevers up to 99.1, and now they’re only up to 98.7 or so (an afternoon temp of 98.1 or 98.2 is normal for me – I tend to be in the mid-97s when I get up in the morning). The panic is mostly gone, though I’m still weepy from time to time. Don’t play any U2 song around me, or I Will Certainly Cry. My memory seems to have improved. I feel like I can breathe again most of the time. I still have a weird burning sensation in my right shin. I’m still exhausted when I get up in the morning. I walked half a mile yesterday and had to stop from tiredness – and this from someone who last month was walking 18 miles a week.

Additionally, I’ve been off the Pill for several weeks and off spironolactone for about a week and a half and my skin hasn’t gone haywire. It’s not perfect, but it’s certainly nowhere near the severely broken-out condition it was when I first went to the doctor about it in 2001.

The nurse practitioner I saw at my OB/GYN’s office listened attentively to the whole strange sequence of events and said, “You have a delicate biochemistry, don’t you?” That felt better than the reaction it seems like I usually get from doctors, which is a sort of silent “What a pain – this one’s totally psychosomatic” attitude. Believe me, I do not *enjoy* being the canary in the coalmine – if I could choose to be otherwise, I certainly would.

So the answer so far is no answers. I’ll let you know when I know more.