There was 3 weeks to wait to see her, so I waited. What else could I do? All the while I had given up the allergy foods and hadn't seen much change. And I missed squash! I hadn't realized that we ate it at least twice a week until I had to give it up. You know, it is one of the easiest veggies to get on the table at night when you need to feed your family. Anywho, I finally was in to see the Endo and basically was told there needed to be more testing done before she could prescribe anything. What I found out later (3 endocrinologists later) was that that nasty little autoimmune marker that no one wanted to discuss was telling them that my issues were more than what appeared on the surface.
Now here's a little info about me: I was not being a very good advocate for myself (repetitive, I know). I was taking what the doctors were telling me and letting that be the end all, be all of the situation. I was doing no research. I wasn't asking very good questions. The only thing I was doing was food and lifestyle journaling.
And the part that I've left out up to here is the swelling. Random swelling. It started with my eye one night. Then my lip did it. Then one morning I woke up to my lady parts swollen (oh you read that right!). My hand one day. Just my toes on my right foot one morning. And every time I told the doctors about this no one ever seemed to have an answer or to really care. It wasn't lasting for longer than a few hours so it must not be important. Well, that was just fine and dandy to the doctors but when you can't walk (or at least not comfortably) because your lady parts are swollen, well nothing seems all that fine and dandy!
I know they are horrible pictures but nothing
about the swelling is very pretty anyway.
So the second round of testing comes in from the endocrinologist and she diagnoses me with Hashimoto's Thryroiditis (oh does spell check hate that one!). Well what is that? I'd never heard of it before and until the last 3 years very few people had. Basically your Thyroid doesn't work. According to the Mayo Clinic:
Hashimoto's disease is a disorder that affects your thyroid, a small gland at the base of your neck, below your Adam's apple. The thyroid gland is part of your endocrine system, which produces hormones that coordinate many of your body's activities.
In Hashimoto's disease, also known as chronic lymphocytic thyroiditis, your immune system attacks your thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism). Hashimoto's disease is the most common cause of hypothyroidism in the United States. It primarily affects middle-aged women, but also can occur in men and women of any age and in children.
Doctors test your thyroid function to help detect Hashimoto's disease. Treatment of Hashimoto's disease with thyroid hormone replacement usually is simple and effective.
And symptoms include:
Hashimoto's disease does not have unique signs and symptoms. The disease typically progresses slowly over a number of years and causes chronic thyroid damage, leading to a drop in thyroid hormone levels in your blood. The signs and symptoms are mainly those of an underactive thyroid gland (hypothyroidism).
The signs and symptoms of hypothyroidism vary widely, depending on the severity of hormone deficiency. At first, you may barely notice any symptoms, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as the disease progresses, you may develop more-obvious signs and symptoms. Signs and symptoms of hypothyroidism include:
- Fatigue and sluggishness
- Increased sensitivity to cold
- Constipation
- Pale, dry skin
- A puffy face
- Hoarse voice
- An elevated blood cholesterol level
- Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid
- Muscle aches, tenderness and stiffness, especially in your shoulders and hips
- Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
- Muscle weakness, especially in your lower extremities
- Excessive or prolonged menstrual bleeding (menorrhagia)
- Depression
Seriously? OH. MY. Good. Grief! This was me. Cut and dry, me. I didn't have them all (well, I have the sensitivity to cold now, but I didn't then) and not all of my skin was dry just my eyelids, there's one for the books, right? And there will be many a post about my forgetfulness which up until this point I attributed to having babies. We've all heard that one! The ever-dreaded pregnancy brain! I just thought mine never went away.
And yes, while this first endocrinologist may have diagnosed me. That's all she did. The disease was never properly explained to me. The swelling didn't really bother her either. And the dosage of medication? Half of a 25 microgram pill every other day. That is less than 50 micrograms per week! What kind of difference was that going to make? So I began the hunt for another endocrinologist with the help of my OBGYN.
At my yearly exam in the Fall of 2011, I filled my OBGYN in. I hadn't seen her since June at the conclusion of the hormone therapy. Which in June, the hive condition was still relatively new. The swelling concerned her. Well thank God! Someone finally cared. Only her caring was a little scary. She thought I might be allergic to sperm. Specifically my husband's sperm. Oh wouldn't that just be great!!! Thanks to my handy food and lifestyle journal we figured out that almost all of the swelling incidents coincided with sexual activity. (I'd obviously figured that one out before hand but I was pretending I hadn't noticed... what was I going to do? Stop having sex?!) So we started with changing his soaps to all natural, free and clear soaps. But it's hard to tell if that was the trick that did it...
See by then I had found a new Endo, who had upped my dosage to 25 mcg Monday, Wednesday, Friday and Saturday, and by this point everything that touched my body was 'free and clear", not to mention the absence of all the allergy foods. And here is the kicker, thanks to my journal I had realized that the bulk of the swelling, especially the lady part swelling, coincided with tequila consumption. Yes also sex, but tequila consumption as well. So I gave up margaritas. I know, it is very sad but since then I've only had the swelling occur twice. And ladies and gents, I will take it! So to this date we've never had the dreaded sperm allergy testing done. And I really hope we never have to.
This new Endo seemed to be sent from God! She explained Hashimoto's to me as an autoimmune disorder and that where there is one autoimmune disorder there are bound to be more. She also explained to me that the hives are something called Chronic or Idiopathic Urticaria. Chronic because it is not likely I'll ever see them go away completely and Idiopathic because we still can't seem to pinpoint one thing that causes them. She brought up the markers for Rheumatoid Arthritis, explained that it also is an autoimmune disorder and that unless or until I see symptoms, a doctor is not a priority as there are no pre-treatments. What she did for me was open my eyes. She told me I had multiple auto immune disorders. That my immune system attacks my thyroid and the histamine receptors in my brain. What she somehow got to sink into my brain was that there was no, one-pill-cure for what I had. I have diseases that I will live with for the rest of my life and it was time to accept that. My sister is a Type-I diabetic, I completely understand living with a disease for the entirety of one's life. But until it happens to you, there is simply no way to know how you will react.
And then one day, she brought up my weight. Now I get it. No one wants to talk about this and for me weight has and probably will always be, a very sensitive issue. I had reached 207 lbs. I'm tall and curvy so I get away with carrying extra weight around better than most but still I'm not stupid. I was unhealthy and on a path to somewhere I did not want to go. This was right before Christmas so I told her, at the beginning of the new year we'd discuss it again. I recognize how childish this was of me but come on... it's Christmas! And there were goodies everywhere! But she said okay.
I did not want to end up a 300 lb blob with heart problems and high cholesterol and high blood pressure. Because if nothing else it would make the rheumatoid arthritis come on faster and would ultimately take my children's mother and my husband's wife from this earth. That is the place that this film took me to.
And that was the place I ultimately needed to be to start making some changes.
Coming soon... The Journey, Part 3
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