You're Fired!

Two minutes into my appointment my narcolepsy specialist basically pulls a Donald Trump and tells me he no longer wants to be my doctor. Why? Because he just found out I'm taking hydrocortisone for severe adrenal fatigue. He tells me there's no such thing as adrenal fatigue and that I'm getting "bad information" from my doctor. He said, "You do NOT have adrenal disease. Have you ever SEEN what a person looks like who ACTUALLY has adrenal disease"? To which I reply, "Yep. Every time I look in the mirror." I also told him that I was not asking his advice on hormone-related issues, just as I don't ask my hormone specialist to treat or advise on my narcolepsy.

I've butted heads with this doctor before over my holistic and integrated approach to medical treatment. But he's used to "knowing everything" and having patients just blindly accept his advice. The problem is, the drugs he had me on caused me to gain 70 pounds, made my depression worse, gave me kidney stones, atrial flutter, stomach ulcers, tooth enamel damage, etc. At one point, I had to decide that the pharmaceutical cocktails were only making me worse. He's had a bee in his bonnet ever since.

Ordinarily, I would have already said "sayonara" to a doctor with such an obvious god complex. I mean, I don't drive ten hours round-trip to see this guy because he's so warm and fuzzy. The problem is, he's the only doctor I've found that is knowledgeable about narcolepsy with cataplexy and is willing and able to prescribe Xyrem, the medicine I take that helps me to get restorative sleep. It's the ONLY narcolepsy-related pharmaceutical that I take, and I have found NOTHING else that comes to close to working well for me. In addition, I'm smack-dab in the middle of my Social Security Disability case, and he's the main doctor that is providing documentation of my disability.

So three minutes into my appointment, I go into a full cataplexy attack. Meanwhile, he's telling my husband that 5-htp, which I'm taking instead of antidepressants to help treat catapexy, killed a bunch of people several years ago. Total lie. And that it comes from China. Total misinformation. I don't know if he learned his scare tactics from the democratic party or what. There was a tainted batch of L-tryptophan that killed some people many years ago. But 5-htp is NOT L-tryptophan. And the company that makes it does not get their ingredients from China.

Two cataplexy attacks later, I leave with the answer to only ONE of the narcolepsy-related questions I needed addressed at this semi-annual visit. So he did at least decrease my Xyrem dose to address the sleep eating problem. Apparently this is common when your dose is too high. Who knew? I've gained about 15 pounds since I started sleep eating, so at least one positive thing came out of the visit. But now I have start all over with a new doctor, after I had to fight my HMO to get special permission to go outside my service area to see THIS winner. If anyone knows of a narcolepsy specialist in the Northeast Florida area that doesn't have H.U.B. Disease, AND is knowledgeable about Xyrem, please let me know!

Setbacks

People with chronic illness know this well: Just when you think you've got a handle on one aspect of your illness, another crops up to throw a monkey wrench into the whole thing. I've recently had a setback with my thyroid disease because I finally was able to convince my doctor to treat me for adrenal fatigue. It's common for people who have gone for years without a proper diagnosis of thyroid disease and/or those who were on a T4 only medication like Synthroid or Levoxyl to develop adrenal fatigue. I've known for years that my adrenals were causing me problems and contributing to my cataplexy, fatigue, and even excessive sweating. But convincing your doctor of that is another matter.

The new doctor at my primary doctor's practice is much more open to suggestions than other doctors I've seen, especially if you bring her some information to back up your theories. I had been trying to get my doctor to run my Reverse T3 for almost a year now, especially after I stopped losing weight on Armour and began having some hypothyroid symptoms again. This new doctor agreed to run it, and we quickly concluded that my body is not absorbing and utilizing the thyroid hormone that I'm taking, which is why I'm not losing weight, why I'm feeling so tired, why I get huge cracks in the heels of my feet, and why it makes perfect sense that my adrenals are failing too. I'm trying not to be annoyed that almost a year was wasted while my know-it-all doc ignored me, and focusing instead on feeling hopeful that this new doc is willing to treat my adrenals with hydrocortisone (HC).

But it's not easy treating the adrenals, let me tell you. For one thing, we're both at the mercy of piece-meal information. The 1st edition of the Stop the Thyroid Madness (STTM) book says to gradually increase your HC up to the proper dosage. But that would give me these incredibly sickening adrenalin rushes, kind of like the feeling you get after you've run a mile as fast as you can. So I asked people on the STTM Facebook page, and the author told me there had been a revision to the book advising you to begin at the full dose right away to avoid the adrenalin rushes. Ugh. So I started over again.

Then my Armour started making me sick. I would get these horrible gut-wrenching stomach pains, along with severe nausea right after I took my Armour. That's when I was advised to cut back on my thyroid meds. So now I feel terrible because I'm on the wrong dose of Armour. I started having one of the worst hypothyroid symptoms that I haven't experienced in almost two years: digestive issues. That's a polite way of saying that I have to run to the bathroom at a moment's notice. So now I'm carrying ginger root capsules around with me 24/7 like the pre-Armour days. I was told swallowing my HC with apple cider vinegar would help cut down on the stomach issues. Nope. The last time I tried that, I felt like someone had kicked me in the gut; and it felt like that ALL DAY LONG. I'll just stick with the ginger root, thank you.

To make a long story long-ish, I'm feeling a little frustrated and discouraged right now because I've essentially had to make myself feel sick in order to make myself feel better. I'm sure that makes sense in some realm of reality, but right now it just ticks me off. I have the energy of a slug and the personality of a porcupine being poked with a stick. So I just keep muttering this mantra under my breath: "A setback is a setup for a comeback. A setback is a setup for a comeback." Now where are those ginger capsules...