Ahhh, the irony. Catching up on the health thing again (part 1)

So it's been about six months since my last post and so many things have changed that I don't know where to begin.

On January 1st I won a special technology award that is only valid for one year. It kind of obligated me to do a lot of travelling, speaking, and other community things related to my area of expertise. In February, I finally found someone who took my feeling ill seriously and prescribed for me a bunch of blood tests to discover what was wrong.

And found a number of things.

But only treated one, considering me "cured" when that one thing was better (which is still isn't).

I was a bit confounded. On one hand, this person was the first and only one who bothered to respect me enough to assume I was sick when I said I was, and tried to find the cause. But on the other, she only focused on her one, favorite blood test to diagnose me, and then prescribed only one kind of drug, in the face of many options, to treat it (I think I mentioned that in the previous post, but it's so important it deserves mentioning again). Even if that drug was wrong for me, she would consider no other, or any other of the common blood tests to get more details.

One blood test, one organ, one drug. Period.

The other eighteen blood tests? Well, she does those to keep from being sued. You see, from time to time, some of her patients turn out to have something else seriously wrong with them that the one organ, one disorder she likes. So to avoid being sued, she just does the same large group of tests in case any new patients turn out to have gout, hirsutism, cancer, vitamin deficiencies, or kidney/liver disorders. In the same vein, despite her conviction that my only problem was my thyroid (which is in the neck of a human), she scheduled me for a ultrasound of my reproductive system because the women in the exam room next to mine had turned out to have ovarian cancer, and well, now she'd rather be safe than sorry.

(No, I don't have anything wrong with my underworked reproductive system, thank you.)

Despite the suspicious nature of her obsession with the synthroid and the organ it replaces, she did have a point. The only blood test that she focused on, TSH (thyroid stimulation hormone, produced by the pituitary, indicates the thyroid isn't working), was way, way off. It needs to be between 1 and 2. Mine was 10.36, indicating clinical hypothyroidism.

One of the biggest reasons why the thyroid might be having problems is adrenal insufficiency. Another biggy is a lack of adequate iodine.

Did she test for those?

No.

Why? She wasn't interested in curing the problem. That would put her out of business. Instead, she wanted me to take a drug, which once I start on it I have to keep taking for the rest of my life, that only replaces the inactive hormone that the thyroid produces, T4.

But, I was desperate. I felt really sick, I had travelling and performance to do, and she was a doctor. I didn't have time to find a second opinion. Lots of people I knew were on synthroid. But I didn't feel it was right for me. I thought maybe there was something else wrong, maybe I just needed more iodine, or less.

But I ran out of time. My insurance said that I'd gone to a doctor, I'd gotten blood tests, now I had to follow their advice....

... so at the end of February, at the expense of my own opinion, I gave in and started taking synthroid.

I started slower and at a lower dose than the endocrinologist wanted. I didn't discuss it with her, I couldn't. She wouldn't hear it. I was going to take the does she wanted, period.

I was to learn the hard way to ignore people like that. They don't know you and don't care. If it's wrong for you, that's actually not their problem. They get paid, even if you die.

Let me say that again-- they get paid even if you die. For some, that is incentive enough to do what they always do when people have X, Y, or Z. It doesn't matter if anything about you is different and contraindicated for that treatment. They do what they do, no changes, no give backs. You went to their office, no you do their dance little monkey.

That is why I had grave misgivings when I started the meds, and why I did it at half dose.

I had some side effects, and it didn't seem to help me in any way. Then after a few weeks, I went for two thirds. I noticed sweating, heat intolerance, trembling, increased fatigue. I called in and they just poo-poohed my complaints.

I found that if I modified how I was taking my BC (which I have found has accidentally saved me from getting the estrogen related cancers and fibroids that four out of five women in my family get-- three out of those four die of the cancer as a matter of fact), the sweats went away. I had to change that on a permanent basis-- probably a sign that something wasn't right.

Over the next several weeks, that dose was okay. Then, eventually I went for the full dose. I felt weird about it, like I was addicting myself to heroin.

I went back in to see the endo' and my TSH numbers were still high-- even though I was feeling better. So she increased me; first 1/4 more, then finally a fourth more than that.

At that final dose, I found myself not feeling better-- but gaining weight fast. I bloated up and now can't fit into any of my clothes. It sucks. My arms and legs are still skinny, but my face, neck, and abdomen are bloated up and getting a little pudgy. Not good.

And when I mention it to the endo? She tells me to live with it.

And the bouts of pain? The increased sensitivities to food, chemicals, sunlights, dust, mold, pollen, etc.? The fact that I am now having allergic reactions to shampoos, soap, conditioners that have never bothered me before? That I am starting to get rashes that don't go away for months? The fatigue and feeling like I have the flu?

Not related, in her opinion, therefore something that I have to live with, or at least not bother her with it. Seriously, as far as she's concerned it's a different specialist's problem.

So let's see:

-- recurring bouts of severe pain and stiffness
-- severe gluten intolerance/reactive hypoglycemia
-- really restricted diet due to allergies/sensitivities to: wheat, corn, yellow#5, artificial flavors, preservatives, nitrates, sulfates, MSG, and a host of other things-- not to mention allergies to latex, coconut, tin, nickel, bounce, tide, febreeze, most perfumes, perfumed soaps, shampoos, moisturizers...
-- sensitivity to air conditioning, central heating, mold, mildew, funguses, and dust. Serious, serious problems with dust.
-- recurring bouts of severe fatigue. Combined with the pain it feels just like a really bad flu
-- with the fatigue is bouts of non-restful sleep. Afer ten hours, I feel like I pulled an all nighter
--recurring pneumonia, happens everytime I get a cold or sinus infection. Often, just when I miss even an hour of sleep, will start to get a sore throat, sinus pain, itchy lungs.

What did the synthroid help?

-- a lot of the fatigue is gone
-- I can recover from fatigue and pain faster
-- I sleep a little better
-- I can definitely handle cold temperatures better. My fingernails turn less blue in air conditioning

During my initial experience with synthroid, I was also diagnosed with hypokalemia (low potassium) and really low vitamin D. That could attribute to my heart arrhythmia, fatigue, weakness, pain, and light sensitivity.

Given that, I started taking a good, for seniors, multivitamin and vitamin D. The endo also prescribed me potassium chloride-- which was contraindicated for someone with potential adrenal problems or underlying autoimmune issues. But I didn't know that at the time.

The vitamin D, which she dosed way, way too low, really helped from the start (after I raised the dose from 400 to 4000iu).

The potassium chloride? Almost killed me. And when I called it in from the airport, the nurse didn't get back to me for more than a day-- to tell me to stop taking it.

(turns out that high doses of potassium chloride is used to kill inmates on death row-- who knew?)

Idiots.

The next week, when I did the standard blood tests before a revisit with that endo, it showed I now had bad hyperkalemia. Too much potassium. The potassium chloride form of supplementation was way too strong.

And like a robot, without wonder why I could be too low one week and way too high the next, the endo just told me to stop taking potassium altogether. As if there hadn't been something underlying that was causing the original depletion. As if the previous months had not happened.

No alternative means of keeping my potassium up was suggested. Go team.

So that catches you up to what drugs I've been doing up to this week, what's been going on, and where I am healthwise.

Stay tuned for part two-- where I discuss all the specialists I needed to see, what I learned about referrals, what I learned about getting second opinions, why health insurance sucks, and more...