Ahh, the irony. Catching up (part 2)

Howdy.

In part one I reviewed the whole, "doctor did blood tests, put me on synthroid without exploring any less addictive options, still doesn't entirely help" thing.

In this edition, I am going to continue reviewing the adventures that followed that experience.

I began taking the synthroid (starting with less than 50mcg, then moving up to 75mcg, then 88mcg, where I am now) at the very end of February. In addition, I also started taking potassium chloride, vitamin D, and a big, fat multivitamin.

On Feb. 28th, I had to travel to Seattle for a week long summit. So I'd been taking the meds and supplements for only a few days before finding myself at a conference surrounded by strangers.

It was about three days into the conference when I realized I was feeling weird. I couldn't concentrate on anything, I was dazed, the slightest thing confused me. I was acting drunk (which, given I don't drink, is not funny).

Turns out that that is what high doses of Potassium Chloride do to you, just before they kill ya.

I almost didn't make it home because I got disoriented and confused at the airport. I became almost delirious on the last leg home, arguing with the stewardess about the duration of the flight (which was about forty minutes, but I was convinced, for some irrational reason, that it was three hours and couldn't figure out why they wouldn't give me water).

When I got home I realized that something wasn't right. The next morning, after displaying more neurologic issues, I looked online for side effects of synthroid, then vitamin d, then, finally, potassium chloride. Ta da, that was it.

I then called into the nurse for confirmation, which they waited too long to give me. Then in my next blood tests it showed that I had pretty bad hyperkalemia (high potassium). No duh.

Meanwhile, I was prepping for and doing presentations all over the US. Travelling to Tucson, DC, Los Angelos, London (England, okay, one trip outside the US), Baltimore, Columbus, and more. Every month involved travel, so there wasn't much time to focus on doctors appts, and health.

During all this, I did notice that the synthroid was helping me tolerate the ups and downs of travel better. I was getting more restful sleep (although not entirely refreshing). The vitamin D was really helping with the chronic pain, weakness, and stiffness.

But it did not fix two of my main concerns: food allergies and pain/fatigue episodes. Yes, the episodes did seem easier to recover from, but it didn't stop them, which was the whole point.

So, I started doing the rounds among all the specialists the endocrinologist had suggested.

First,
- The Neurologist: said, with his hands behind his head, already dismissing me before I sat down, that all I had was migraines. He gave me some samples of some beta blockers. Then he asked, yelling down the hall as I was leaving, if I had heart problems. When I said "yes," he told me to nevermind on the beta blockers, as they were contraindicated for people with heart issues.

Then, he just went back to his room and closed the door. Not suggesting anything else to help instead.

I have been tested for migraines twice in the last decade. Both times I turned out to be negative for more than average headaches.

and on to:

-Rheumatologist: Saw me for five minutes or less. Sat down and said "I already know what is wrong with you. I have a diagnosis. Don't you feel better already, knowing what you have?" He then pinched me in four places and announced that I had Fibromyalgia. He then commented that, "I'm surprised you didn't figure that out yourself on the internet."

He didn't seem to realize that I'd been tested for FM previously, thoroughly. After a thorough check up, it turned out that I didn't have all the symptoms necessary to have that disorder.

When I thanked him for his time, and asked him what kind of treatment does FM require, he told me that there is no treatment. That FM can't be cured, only lived with. There was a brochure the nurse could give me on my way out. Have a good day...

That inspired me to find someone to dispute his claim, because I knew that if that diagnosis stayed on my record no other doctor would bother with me.

I posted on Facebook about it, and a friend of a friend pinged me, saying that I should check out the Fibromyalgia and pain clinics (there was one on my area). They could conclusively prove I don't have FM.

So I called the local area FM clinic and made an appt, which I had to pay for out of pocket (my empty, empty pocket).

When I met the doctor, I told her that what I wanted was to prove I didn't have FM. Something, I'm sure, she wasn't expecting.

She did a thorough exam (thank god), and told me I didn't have FM. However, I did very likely have chronic fatigue. The CDC has a test for it, which I, unfortunately, scored high on.

She then suggested I get a metric shitload of blood tests (52 in all) and come back to her for treatment.

She said that with those tests she could determine what was really wrong with me, what the underlying cause of my pain and fatigue was-- and cure it. I was stunned. I'd been told that FM, CFS, and those sorts of things can't be cured.

She laughed and said that that was what most doctors said. But, usually, when a person shows up with what amounts to chronic flu symptoms, chances are that they are actually harboring at least one, usually several, chronic infections. Any one of which gives you flu symptoms. So, if those infections are found and treated, and the body supported after that so it can fully recover, often people essentially "get over it". They may always be suspectible to relapse if they're not careful, because they were vulnerable enough to get into trouble the first time. But with care, the person can recover and stay that way.

As for the allergies? Well, they can be caused by infections and imbalances in the intestines. If your intestines, where you absorb your food, are messed up, they cause your body to react incorrectly to food and other substances. This seemed kind of far fetched to me, but I remember being able to eat anything for most of my life, until I started taking antibiotics. And besides, most of my problems are food related. So it was possible.

I was psyched. That made sense to me.

Then, her office manager came into the exam room and told me that that would be $100 for that visit, $500 to $300 for all subsequent visits, and about $188 per treatment (possibly more), for about 18 months. Oh, and they don't take any insurance.

And on that note, I moved on. Don't get me wrong, I was curious to see if she was right, so I got the blood tests done (30 vials of blood), but I was going to have to find treatment I could afford.

Oh, how wrong I was...

Anyway, I moved on to the next specialist on the list:

-Nutritionist/Gastroenterologist: I waited three months to see this guy. He listened patiently to my whole story, then told me that I had food anxiety. That I had been misdiagnosed by everyone before seeing him (and I can't say he's entirely wrong, but what arrogance is that?!), that they had taught me to fear food. That I just had to ignore all my symptoms and start eating the diet he gave me. Totally ignoring my known and proven gluten allergy-- wheat, rye, and corn were high on his list of good foods. He didn't seem to care when I told him that would make me sick. He said that that was likely to happen, but do it anyway. "Eventually, you will be able to eat everything on the list. You'll be fine."

Sigh.

To refute him, I went to a different nutritionist, only this time at a holistic health center.

That guy, although he was really a slimy, car salesman kind of guy was so much closer to right. He did not dismiss any of my symptoms or allergies. And he immediately said the same damn thing that fibromyalgia lady did. However, his treatments were herbal and cheaper.

So I bought the herbs, they were pretty cheap, and brought them home. Then I looked each one up online and discovered that they were probably not going to be strong enough to truly cure what's wrong.

That led me back to the fibro' lady. She was a real MD, not a chiropractor, she could prescribe real meds. She had commented that trying to kill really deep seated infections was a bitch, needed really strong drugs, and might require several different protocols to really work. That car salesman implied that a box or two of herbals would put me right as rain, no blood tests to speak of, see me in three weeks.

I had about twenty pages of blood tests results by this time (from those 52 blood tests she'd requested), and had made just enough money to cover the return doctor visit ($500). So I made a return appointment.

I figured this:

The endocrinologist didn't care about anything but the thyroid, and could only test for and prescribe synthroid.

All other specialists, admittedly most of which she'd suggested, didn't care, thought it was in my head, or felt it was an untreatable disorder. They didn't want to actually hear me and cure me. My real problems had been utterly disregarded.

If I wanted to get to the bottom of my problems, I needed some who would schedule 52 blood tests on first meeting. Who really cared about my recovering from what was ailing me, not just about diagnosing me, taking my money, and getting me out the door.

So that meant my only option was the uber expensive, put me in bankruptcy, fibro' lady.

I mean, it couldn't hurt just to listen to her take on the results, right? I had already gone over them, line by line, online, and some, frankly scared me. There were some things I wanted to know.

So I went to the appointment with an open mind. I just wanted to hear what she had to say. Maybe my blood tests would show she couldn't help me. Or maybe there would be a more inexpensive way to do it.

To start, let me say that that doctor is amazingly thorough and patient. She is definitely worth $500. I just wish that my insurance, which I am already paying for, covered it, even a little.

She went line by line over each page of the blood tests, writing notes in the margins and telling me what every single one meant, particularly in relation to each other. The results were out of order like crazy, and she had to keep going back and forth through the pages, but still, she did every single one.

The results were kind of traumatizing.

I had hoped, having looked at them myself, that there were a few things wrong that I could see, but a lot of things were in the okay range.

But what actually happened, is some of the numbers I was worried or confused about were actually not an issue. Yes, my iron is high, but not super bad, and mostly because of the steak I eat every day. A few numbers were off, but the test had "hemolyzed" rendering those numbers irrelevant (and she too doesn't know why they're even there then).

And some of the numbers were much worse than I thought.
-My white blood cells are down a little, some of my IGG counts are low too.
-My DHEA is a little low, my Pregnenolone is so low I should be a ninety year old woman. (those two indicate that my Adrenal gland is broken, but I keep showing high, seriously high, cortisol for my blood tests) Those two account for a lot of my lack of endurance, strength, concentration, etc.
-Additionally, although my TSH numbers were improving, my T4 was perfect yet I still felt like crap. That's because my T3 was actually low and my reverse T3 was through the roof.

(TSH is the hormone the pituitary produces when the thyroid isn't working, higher is bad. T4 is the hormone the thyroid is supposed to produce --well there are actually three more, but endo's ignore that. Synthroid is synthetic T4. Your body is supposed to create T3 from T4 when it needs it. T4 is inactive, T3 is active).

But if I had good T4, why was my T3 not good? Because a lot of the T4 was being used for reverse T3 instead. So trusting my body to use the synthroid to make the right kind of T3 was obviously not working.

And that was just my hormone panel. The worst was yet to come.

The fibro' lady had been convinced that I had some chronic infections going on in my body from years of exposure in daycares and training centers. I figured I'd have, maybe, a few numbers a little above normal. I was afraid she'd brush them off as being on the fence and not treat me for them.

Boy was I wrong. According to the blood tests (which, mind you, at this point were several months old), I have a few infections, the worst of which is epstein-barr.

Yup, mono.

When you test for a virus in your body, they do a "one to ten" thing. So it shows up as 1:10, where there's ten antibodies in one measure. That means there are some antibodies, but they're not on alert, they're just patrolling. You had the infection in the past, and made antibodies for it, but you don't have it right now.

Some tests use a different max variable, but if you have 1:160, then you are probably suffering from an ongoing infection. Basically, 1:80 is highish but acceptable for just patrolling antibodies. Twice that is considered an active infection.

My epstein-barr numbers? 1:2560.

Yes, two thousand, five hundred, and sixty to one. Eight times the acceptable number of antibodies to show a previous, but inactive infection.

Oh, I've got mono alright... but there's more.

I also have Mycoplasma pneumoniae (igg is supposed to be at .09 or less, mine's 3.68), and an intestinal (and systemic) fungal infection. I apparently got that from all the antibiotics I'd taken in the past. Almost three times the acceptable limit in my digestive system, and almost twice as much simply in my blood system.

Keep in mind that if you have an imbalance of bacteria alone in your intestines (dysbiosis), you can get food sensitivies and other issues. And I've seriously got that.

And if you've got an imbalance that leans towards those pesky funguses (like candida, which is super common), you cannot eat sugars, starches, or anything that the fungus likes to eat, or you'll get sick. Huh, that sounds like me. It'll also make you crave those foods if you try to stop eating them. Sounds like me too. Mind you, I've been on a no/low carb diet for over five years, specifically because of those symptoms. No one else had ever told me why...

Oh, and quick tip, yogurt isn't really entirely effective in reintroducing bacteria to your body. Yeah. It seems I should've done more... to bad not one single doctor mentioned that. Even though I am living with the proof.

So it turns out that:

-- my symptoms are not in my head
-- my recurring bouts of flu symptoms; pain and fatigue had a definite cause
-- my increasing sensitivities to food have a possible cause (we'll see once I'm clear)
-- my incredibly limited diet was caused by something that can be cured, and not in my head (and not to be stopped or messed with til I'm cured)

The next steps?

Well, that's a good question. Keep in mind that I am broke. That I've not been really working this year because all my free time is taken up with largely useless doctor visits.

In order to be able to see this doctor and get my infections treated, I will have to work. But I can't work while I am dealing with infection die off and the side effects of the drugs to kill them.

But I have to work to pay for it, but I can't work if I get it, but...

So you can see my dilemma.

But, as luck would have it, I was just asked to co-author some new courseware. I would make about double what the treatment would cost (which would also almost cover the cost of the equipment upgrades I need to do the project, plus the treatment).

So, I accepted the gig. Yes, I am taking a risk. But what else can I do? I may not be entirely ready or able, when the time comes, to do the work, but I am going to have to buck up and do it anyway. Life's hard.

With that option covered (if the bid goes through), I have decided to try to do as much of the fibro lady's treatment as I can.

The treatment prescribed to me was:

I need to increase my DHEA/prenenolone, and get rid of my viral, intestinal, and bacterial infections (but I can't do all three at once, it could damage my kidneys and liver... that means I have to wait and do one at a time). Work on my T3 numbers. See if clearing my body of infection will raise my white blood cell counts. Improve my energy and sleep (since I can't heal without sleep).

To that end:

-Continue with the multivitamin, vitamin D, and synthroid for now. However, the doctor wants me off the synthroid, since it's not really working.
- supplement the synthroid with a synthetic, compounded T3 (an extra 40$ a month right there). Eventually increase T3 and go off synthroid
-take three months of Diflucan for the intestinal infection.
- take some ribose to boost my cell energy (commonly taxed from chronic infection)
- take probiotics (real ones) to replenish my intestines
- get another cortisol test done.
- start on the T3 replacement therapy, as soon as the shipment gets here.

Go back to the doctor in a month.

If all goes well I can start the oral and IV medication for the epstein-barr, and the IV meds for the mycoplasma pneumoniae. She'll also test my T3 numbers again to see if the replacement is working.

And now you're caught up with what I'm doing. (oh, I was just asked to write the next edition of my book, so that's good too)

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...