Skip to main content

A new disorder

It seems I have a new disorder to add to my collection. Before I went to ATS, regular readers may remember, my thyroid numbers were off at the NIH, and that my local doc. had run some follow up tests here at home.

I called today to check on the results and it seems the local doc. concurs with Kevin. They believe I have something called Hashimoto’s Syndrome. It’s actually not that rare, does run in my family and is very easily treated. I’ll start taking a thyroid hormone at a low dose at first to see if things improve.

I was elated at the news, to be honest.

Kevin at NIH (and pretty much everyone else) has been on my case about losing weight for some time, but especially since I entered the drug trial. And I have tried. Of all the diets I’ve tried, I’ve found Weight Watchers to be the easiest to comply with. I like the points system. But, even when I’m on my best behavior, carefully logging everything, exercising etc I never lose anything. In fact, I gain.

With all of my other health issues and complications, this is no easy task. And when it’s never met with any positive reinforcement or success, it’s so demoralizing. Several months ago I just gave up completely. I can’t even begin to tell you how humiliating it is to weigh in week after week and never even once meet with even a pound of success.

The more you struggle, the more everyone is an expert, monitoring everything they see you eat to see if you’re really being honest – or just a pig. Emotionally, I couldn’t deal with it anymore.

I’ve been dreading the nutritionist even more than my pulmonary function test results lately. Thankfully, when she dropped by for her “talk” I wasn’t in the room, and Karen told her to ease up on me.

I’d complain about this to my doctors, as well as about the fatigue I sometimes have for months on end, and it felt as though no one believed me – except Kevin. (Fatigue goes with so many of the other health issues I have going on that I don’t think anyone cares when I whine I’m tired.)

He’d noticed my thyroid was off on the last few trips, and this time I felt like he must have done quite a bit of research on the issue. He gave me some papers to take home to my local doctor. She ran her own battery of tests, and upon reviewing my blood work for the last year, seems to agree with Kevin.

For years actually, my thyroid, which I have tested regularly because of my family history, has hovered around the border between the normal and abnormal range. Now, it seems as though it’s been slipping more into the abnormal range.

I just hope this helps! I don’t think my psyche can take much more failure in this department.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.