Things I've learned about Diflucan, compounded T3, and me

In my continued adventures, I started taking 200mg of diflucan over the weekend.

I started with feeling a little toxic about forty minutes after taking the drug, and otherwise just feeling a little tired. No other changes or side effects. I am wondering if this is working at all.

One thing I did notice, my nose ran like crazy, like I was coming down with a cold, when I sat next to the air conditioner. Especially for the first few hours after taking the drug. I had been having intermittent runny nose and stuffiness that I attributed to the AC before, but this was extreme.

The next day I took it, about thirty minutes later, felt a little toxic, then for about an hour and half, felt pretty disconnected, exhausted, and weak. Did have to hit the bathroom (urgent trips are completely not normal for me), but after I felt really, really good. Like I'd taken a hit of muscle relaxants and some Xopanex. It was kind of weird, in a good way, but unnatural for me.

And, of course, it didn't last. When I got home (all of this happened while at a brunch with friends, of course), and once again next to the AC, I got some light sniffles, but nothing major.

The next day, took the Diflucan at the same time of day, and soon felt completely exhausted, like I'd run a marathon. I am not sure what happened. I strongly suspect it was blood sugar (but it could also be the DHEA or ribose I took too), as I'd accidentally not included a lot the day before (habit). To compensate, I ate a number of carbolicious things (rice cereal with rice bran added, almond and rice flour pancakes- with forbidden cream cheese, and a big dose of ribose). I thought that had beat the low blood sugar, assuming that my insulin resistance would protect me from a crash.

I was wrong.

The following day I awoke in pretty extreme pain and fatigue. I had to go see my old endocrinologist that day too-- which is always taxing. She didn't want to hear about the new doctor and my taking T3 to supplement the synthroid. (I mean it. She didn't argue, she simply disregarded me telling her. Weird.) When I told her that I had been tested for epstein-barr and mycoplasma pneumonia and came up high on both, she immediately insisted I go see a infectious disease specialist. She insisted that the doctor who first ran the blood test and that I was actively seeing was hardly more than a chiropractor and that I needed to see a real doctor.

But, she's a "real" doctor, and refused to do the blood tests that now are such a big deal. Why should I want to go somewhere she considers "real" when "real" didn't get me anywhere in the first place?

Sigh.

Later that day, I took an extra DHEA and some more ribose (which I struggle with because it is pure carbs and my body can't handle it well. I use 1/5th the normal dose).

That night, the pain increasing, I actually ate some craisins (tried rinsing off the sugar first-- futile). It was a desperate act that should have caused a serious headache. Instead, the pain started to go a way a little.

Also, while I was at the endo's, I'd gotten a package from the compounding pharmacy. My T3 prescription had arrived. I discovered that I have to be very, inconveniently, strict about how I take it. It will bind to practically anything too easily, so I have to take it two hours after a meal, and one hour before one, every time. Great. That means I either have to wait an hour after I get up to eat (not really an option on busy mornings), or I get used to waking up an hour before I need to, taking the T3, going back to sleep for an hour.

I mean, I could take the T3 before bed, but I often eat close to bedtime in order to maintain my blood sugar levels through the night.

That night, at about 4:25am, I woke up feeling absolutely refreshed and great. Like I had during the weekend. I tried to go back to sleep, and eventually did for an hour or two. Then got up, took the T3, and went back to sleep.

Two hours later, I woke up feeling better than ever. It was great. And the feeling lasted all day-- took my diflucan, all the other meds, etc. (although I did blow off the ribose-- it was giving me headaches- I also cut down on the DHEA, because I wasn't sure that it wasn't the cause of my fatigue)

And today? Well, not that good. I didn't sleep well. Had temperature problems (sweats, hot flashes, cold spells), all night. And the pain that had gone away, was back again. Fatigue, achiness, and now a sore throat.

Not good (and I have to talk to the editor today). I took the T3 and tried to sleep a little more, but to no avail. Got up, did breakfast, felt better. Still fatigued, but now just the normal fatigue I get when I sleep while suffering from low blood sugar.

After breakfast, I took the diflucan. I am on the fence as to what symptoms it is causing, and what is caused by all the other, supposedly harmless, stuff I am taking.

I do know that, after taking the diflucan, I turned on the AC (humidity is intolerable here) and my nose ran only a little bit. After the diflucan fully kicked in, my nose isn't running and is only a little stuffy.

Could it be that that "allergy" I've "always" had is, in fact, a fungal infection? Interesting.

Meanwhile, I have noticed sores starting in my mouth and throat. Will have to see how that progresses.

Also of note, after I received the T3 from the pharmacist, I called in with some questions and learned that the doctor who is treating me is kind of new. She's "good" he says, but she's really just following a protocol. She won't be likely to be able to be inventive or flexible.

It makes me think, maybe I should check that "real" doctor, the infectious disease doctor the endo' suggested. Maybe it wouldn't hurt to get a second opinion if I am being treated by someone blindly following someone else's doctrine.

For example, her "protocol" says if someone's intestines are infected, have them take 200mg of Diflucan. But, it is now common practice to start with a loading dose of 400mg first, then drop to 200 after. But her protocol was written before that discovery was made. So here I am, with an obviously pernicious, chronic infection, not taking the most effective dosage course. (I found this out, of course, after starting the medication) There may be reasons for this, but none that she mentioned to me.

Oh, and by the way, the T3 (10mcg, supposedly time released), doesn't seem to be doing anything at all. Just to be clear. ; )

So that's where I stand.

I have to schedule my life around these drugs at this point (T3, synthroid, DHEA/prenenolone, ribose, maitake, diflucan, ribose, and more), dealing with a changing sea of side effects, while trying to get on with life.

Right now my biggest problems, as I see it (but I could be wrong...), are the soreness and pain coming back, fatigue, and these sores that are starting in my mouth and throat. They are not uncommon with Difulcan, but I don't like it.

All in all, I bet that the treatment for my intestines will be the easiest I'll be facing. I am pretty sure both the epstein-barr and mycoplasma pneumoniae will require IV treatments. I am expecting to be completely bed ridden with a side of seizures for those...

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...