Tuesday, October 30, 2012

my adrenal history

Vertical section of kidney, from Grey's Anatomy, on Wikimedia
Vertical section of kidney,
from Grey's Anatomy,
on Wikimedia

This is an image from Grey's Anatomy showing a sliced kidney; the adrenal glands sit on top of each kidney. So if you've ever had a kidney infection, that spot in your mid-lower back where you felt pain is pretty close to where your adrenals are located.

When I had adrenal issues, I drove the moderators of the Adrenals Yahoo! group half nuts with my demands for explanations for every recommendation they made. Val was pretty patient about providing me references when she had time, but one thing it never occurred to me to ask was why she said people should not try to do any sort of detox while healing their adrenals; she just said detox was hard on adrenals. Since I had absolutely no plans to do any detoxing at that time, I never asked, and don't have references. I will likely look them up at some later time, but for the purpose of this post, I am just accepting this as a very true statement.

This will be a very long post as I need to cover my previous health history, which is a bit of a long story.

But before I begin with that, I need to point out that I am not a doctor of any sort. The labcoat on my avatar is because I used to be a biochemist. Furthermore, you ought not take avatars seriously anyways, even if I add a stethoscope! ;)

a bit of medical history

As an aside, I am going to begin by discussing reactive hypoglycemia. This is a disorder in which the pancreas overreacts to elevated blood glucose, producing too much insulin, which drops the blood glucose very low. People with reactive hypoglycemia need to eat often, preferably protein and fat based meals (which the pancreas is less likely to overreact to), to maintain decent blood glucose and not be ill.

Because we have blood glucose meters commonly available today, one can easily test for hypoglycemia and discover if one has it. This is important because the high levels of insulin produced can lead to insulin resistance and hence T2 diabetes. Thus avoiding the highs and lows of reactive hypoglycemia via appropriate diet and exercise can postpone or even prevent T2 diabetes from occurring. If diet and exercise are insufficient to stabilize blood glucose, metformin can be used to prevent the liver from becoming insulin resistant (usually, it is the first organ to develop IR).

We know all this is true because of bG meters becoming available to the general public. However, it was not that long ago that reactive hypoglycemia was a "wacky" diagnosis. A patient went to a doctor and complained of certain symptoms, the doctor did a bG test and if the patient didn't happen to be low right that minute, they decided this was a bunch of nonsense. If the patient was unlucky, they left with a referral to a psychiatrist. If the patient had a clue or two, they went to an alternative doctor of some sort and if that alternative had a clue, they might receive treatment that was actively helpful to them.

Within my lifetime, I clearly remember the time when hypoglycemia was considered a bunch of nonsense, though it is understood to be a real condition today. Medical "science" is not as definitive as doctors imply.

The reason I bring this history into things is because both with regards to "adrenal fatigue" and with regards to "elevated reverse T3", mainstream medicine considers these to be "wacky" diagnoses today and I strongly disagree (though will have to get into rT3 at another time as this post already has too much to cover!).

a bit of Jackie's medical history

I had a myocardial infarction in May of 2007. They were unable to clear the blockage with a angiograph, thus I was put on heparin and scheduled for a coronary artery bypass graph (CABG). I was told it would take about 3 months to recover.

Three months later, I was still on the Fentanyl patch for constant pain and Percocet for breakthrough pain and often could not get out of bed by myself.

The first year after my surgery, I saw the cardiologist every 6 months, the endocrinologist every 3 months and the internist every 3 months. I did everything they asked and learned all about dosing insulin. I maintained very tight bG control and my A1cs were consistently under 6%.

And I got worse. I became more and more fatigued. Some of this was my fault, as when I had a reasonably high-energy day, I tried to catch up on everything I was behind on as I had not yet learned about pacing myself. Then I'd be stuck in bed for 2-3 days recovering.

I decided exercise would be good for my heart, so rejoined the YMCA and began taking a water exercise class in which every other person was 10-20 years older than me. I could not keep up with them and again, wound up in bed for 2-3 days after each class.

With my doctor's approval, I dropped medication after medication that I believed was causing problems (and I did improve slightly when I lost the statin and beta-blocker).

But overall, my fatigue simply worsened and worsened.

The entire problem with the word "fatigue" is that everyone is tired at the end of a long day, but if you grab a hold of yourself and make yourself get up and do things anyway, you *can* manage to do the dishes, get a load of laundry in, make it through a few more chores and finally drop into bed exhausted, and by tomorrow you'll feel better. Having been a college student, graduate student and then salaried employee while I was a single mom, I was quite accustomed to "fatigue".

This is NOT what chronic fatigue feels like. During my good days, I felt like I had the flu, weak and tired and it was hard to stand for long. During my bad times, I was LITERALLY unable to get out of bed for days at a time, not even to get a glass of water (which was not so bad, since I couldn't get out of bed to pee either).

Taking a shower, while sitting in a chair, and getting dressed thereafter, could sometimes take more energy than I had for the entire day. Days I had to cook, I couldn't shower also.

And days I had doctor appointments were the worst. I had to cook 2-3 days in advance, to make sure I'd have food for the week, and then recovery time for after the appointment. And sometimes, despite resting for several days in advance, I just couldn't do it.

I had a "good" day once, where I sat down to make a shopping list, called a cab to take me to the grocery, used a motorized cart to shop, and came home to put groceries away. This took me 16 hours!

A very bad bit of this was the loneliness. To spend a half hour talking on the phone could exhaust me completely. I missed my husband, who was an over-the-road truck driver at the time, but simultaneously feared him coming home because I'd have to make some attempt to talk and be social and it took me 2-3 days to recover from that. Stuff like planning a holiday with family members would take me MONTHS to recover from.

That is what REAL fatigue is like. And my doctors ran blood tests, including everything I asked from like Lyme's, an ACTH-stim (test of adrenal insufficiency which I later discovered was badly misinterpreted), and basically... had no answers for me.

Now, the term "adrenal fatigue" does NOT refer to the type of chronic fatigue I am discussing. The notion of "adrenal fatigue" is that the adrenal glands themselves are fatigued, and thus cannot produce enough cortisol for one's needs. In severe cases of adrenal fatigue, chronic fatigue is the result, but there are other possible causes of chronic fatigue.

Some of the most fascinating work on mitochondrial dysfunction as a cause of chronic fatigue has been done by Dr. Sarah MyHill who also treats many other possible causes, such as low rbc magnesium, etc. I highly recommend her site and her downloadable PDF about how to begin healing chronic fatigue.

about adrenal fatigue

The symptoms of both adrenal fatigue are very vague. From the Adrenals Web site, low cortisol symptoms include:

  • Allergies getting worse
  • Body ache - all over
  • Clumsy
  • Confusion
  • Continuing hypothyroid symptoms with a high Free T3
  • Dark circles under eyes
  • Diarrhea
  • Dizziness
  • Emotionally hyper sensitive
  • Fatigue
  • Feeling better after 6 pm
  • Feeling of doom or panic
  • Flu like symptoms
  • Headache
  • Heart palpitations
  • Highly defensive
  • Hypoglycemia
  • IBS symptoms
  • Inability to focus
  • Inability to handle stress
  • Inability to interact with others
  • Inflammation that doesn't go away
  • Irritable
  • Jittery or hyper feeling
  • Low back pain - in kidney/adrenal area
  • Motion sickness
  • Nausea
  • Rage or sudden angry outburst
  • Overreacting
  • Paranoid
  • No patience
  • Shaky hands, internal feeling of shakiness
  • Weakness - general or localized

Thus you really can't diagnose by symptoms. Whenever I hear someone state that they have "adrenal issues", my first thought is to wonder what their lab results are as any of these symptoms can be due to other things.

However, I did have several reasons to believe I had adrenal issues. My sister has Congenital Adrenal Hyperplasia (CAH), a genetic disorder that means she can make no cortisol at all; thus the odds are good that I have at least one bad gene where she has two. An online friend from a diabetes newsgroup suspected I had adrenal issues and she was rather conversant with both low and high cortisol symptoms as she had cyclical Cushings. And finally, I was learning about heart disease prevention from Dr. Davis and I posted in his forum about my symptoms and he suggested I have my adrenals checked.

So after my endocrinologist misinterpreted my ACTH-stim test and told me I was fine, and then recommended antidepressants (hah!), I decided to take my health into my own hands and had a diurnal saliva test done.

I failed miserably; I was making almost no cortisol.

treatment for adrenal fatigue

Depending on the degree of adrenal insufficiency, recommended treatment varies. Medical recommendations are... nothing, as mainstream medicine does not seem to consider anything short of full blown CAH or Addison's disease, where no cortisol is produced, to be real and the rest to be "wacky". So when I say "recommended" treatement, I am referring to alternative treatments.

There are several herbs and supplements that can be helpful for minor adrenal issues.

For those who make enough cortisol overall, but have a disordered dirunal rhythm, adaptogen herbs are useful. Ashwagandha and/or rhodiola both are known to both lower and raise cortisol, fixing up an uneven rhythym.

For those who make enough morning cortisol but fall below normal by mid-morning, licorice is recommended. Licorice extends the life of cortisol within the body, thus fixing this particular rhythmic disturbance.

Adrenal cortex extracts can provide small doses of cortisol when needed (whole adrenal supplements are not recommended as including the adrenal medulla means including adrenaline, which is generally already high in low-cortisol individuals) for those who are low at various times. Isocort was the recommended extract used on the group as they knew how it compared to HC.

For those who are high at bedtime and thus have sleep disturbances, holy basil, phosphatidyl serine and zinc can lower cortisol and thus assist with sleep.

And finally, for those who have very severe adrenal insufficiency, cortisol replacement therapy is needed. Cortisol is a steroid, so we are talking taking steroids here.

There are long-term steroids that can be taken once daily, such as medrol and prednisone, which rely on the liver converting them to cortisol as needed, which may be very good choices for those with healthy livers. But better still is hydrocortisone (HC), which is very similar to cortisol and used directly, but must be taken throughout the day to mimic normal diurnal rhythms.

Because all of these possible modes of treatment effect cortisol levels, the diurnal saliva test MUST be done prior to treatment. Otherwise, you don't know what you are treating or how to treat it!

Just because we're willing to investigate alternative treatment modalities beyond mainstream medicine is no reason to be stupid!

What can help adrenals if you suspect a problem before testing is a good B-complex, vitamin C and sea salt.

Once you have your test results, I highly recommend posting them to the Adrenals Yahoo! group for advice.

my decision to self-treat my adrenal insufficiency

The theory of treating adrenal fatigue with HC is thus: when cortisol is low, the pituitary continually produces ACTH, the hormone which signals the adrenals to produce cortisol. Because the adrenals cannot produce enough cortisol, the ACTH continually "beats up" the adrenals, weakening them further. By taking sufficient HC to replace all cortisol needed, the pituitary stops "nagging" the adrenals, allowing them to rest and heal.

The opposing theory is that by replacing cortisol at physiological doses, the adrenals will cease producing it at all and shrivel up and you will become dependent on HC for life.

Honestly, telling someone who takes 4-6 shots of insulins daily that they might have to swallow pills for life if they go for some alternative treatment, well, it's just not a very persuasive argument. I was literally often bedridden and in constant pain. Swallowing pills, even if it did become a lifelong pursuit, was nothing compared to what my life was at the time.

Furthermore, I had by then joined the Adrenals Yahoo! group, which was very different from other groups. There were a handful of moderators who had been there for years and years, helping hundreds, if not thousands, of folks treat their adrenal issues. As noted, I was a complete pain-in-the-ass asking questions all over the place and interrupting their providing assistance to others by my insistence they explain everything to me in detail.

One of the things I learned was that nearly everyone who had treated with HC had experienced a time when they had suddenly had high cortisol symptoms, and had to begin weaning off of HC. So the experience of all these folks who had tried this was that while the adrenals did stop making cortisol temporarily, they seemed to come back.

And for me, the empirical evidence of that many people being assisted trumped references.

Practically speaking, there are two ways to self-treat. HC is available as a cream over-the-counter, and if one finds a formulation that is easily absorbed, one can treat simply with the cream. As it happens, I had very bad poison ivy when I began, so I started with the cream as I needed it anyway.

But the more common method is to treat with dosed HC pills. By definition, self-treatment means buying these yourself, without a prescription. This can be done using international pharmacies fairly easily, though it is a "rule" of the group that this information is not provided publicly to protect the sources.

Attempting to mimic natural diurnal rhythm is a tricky thing. First, most with severe adrenal insufficiency have been running on adrenaline for a long time, so paradoxically, may need lots of sleep when they start on HC as they're sort of withdrawing from constant adrenaline. Second, you can easily misinterpret how much HC you need and "run out" before your next dose. IME, that crashing feeling takes 2-3 days to recover from, so it's best to overdo a bit, rather than risk a crash. So... going on HC is not some sort of instant cure.

I remained on various doses of HC for well over a year before I suddenly had high cortisol symptoms and began weaning. Meanwhile, I had tested myself for reverse T3 and had treated that as well. I weaned off both HC and T3 meds and while I remained disabled to an extent, I was MUCH better than I'd been in years.

And ALL of that is a prelude to what happened to me during stages 3, 4 and 5 of the GAPS introductory diet, which will be another post as this one is already too long.