Introduction

My diagnosis

Let me introduce myself.  I’m Julie, wife, homesteader, gardener, mother, and homeschooler.  I have worn many hats through my 46 years, and I’m always evolving, learning, researching, and changing.  My formal education was in Chemistry and Physics.  Undergraduate was a double major at Hope College in Chemistry and Physics, and my research field was nuclear chemistry.  Graduate school was at the University of Chicago in Physical Chemistry (surface science).  I have a master’s degree and stopped just shy of my PhD, but had to quit because I was too sick to continue.

This is where life stopped going according to plans.  I was going to be a college professor, as was my husband, Scott.  His master’s is in theoretical Physics.  I was diagnosed with fibromyalgia when I was 19, but this was a new and bizarre disease that no one knew much about.  I took the medication they prescribed and continued on with school.  6 years later I had to accept reality, that I was really sick and had to quit.  Scott quit after his master’s degree and got a job so I could stop working and stay home. 

I’m not one to sit still.  I couldn’t do a lot of physical labor, so I learned to knit and cook.  I became a master knitter and I took cooking lessons from Julia Child, Jacques Pepin, Charley Trotter and Rick Bayless through cooking shows on Chicago PBS. 

And then 9/11 happened.  Scott was working at the Merchandise Mart in downtown Chicago, and we didn’t know what was happening.  He was evacuated, spending hours on a train parked outside the city, as was everyone trying to get out of downtown.  It was then that we realized we needed to move back to Michigan.  Scott found a book in the library called You Can Farm, and it started our path back home.

Scott found a good job in Grand Rapids, and we moved to 30 acres and I started farming.  I was going to do what I could, and the good food started making me feel better.  It wasn’t perfect, but a huge improvement.  The biggest change came from drinking raw goats’ milk.  That ended up being one of my first farming businesses, raw goat milk shares.  I am still drinking raw goats milk, milking my own goats and making goat cheese, butter, and cream.

Our oldest, Carl, was born just after we moved to Grand Rapids.  Our second, Anne, was born 2 ½ years later.  I remember milking goats just a week after she was born.  Each pregnancy broke something new.  I’d improved a lot with a good diet of grass fed beef, pastured poultry, raw milk and organic veggies, but after Anne was born I got worse.  A milk customer said she thought I might have thyroid disease.  What’s a thyroid?  I had no clue, but I was on to a new thing to research.

I spent my schooling trying to avoid Biology.  I HATED Biology.  And now I was diving deep into endocrinology.  I learned through forums about the reality of thyroid disease.  Traditional medicine thinks they have it all figured out, it’s easy.  But they keep saying we are fine, that there’s nothing wrong, but we are exhausted, achy, depressed, anxious, and in pain.  I learned they don’t have it figured out.  It is in fact very complex and difficult to untwist.  That all the hormones are linked, and that there are many ways for the endocrine system to be messed up, and the symptoms are many and confusing.  Everyone is different, but the common thread is fatigue, anxiety, depressions and many times pain.

It has taken me years to untwist all that is wrong with me.  I think we might have all the major problems figured out.  I am panhypopituitary with chronic pancreatitis.  In future posts I will talk about how I figured a lot of this out.  But for now, it’s enough just to explain what my diagnosis is.

Pan means all, hypo means low, pituitary is the master gland in the brain that controls the entire endocrine (hormone) system.  There are two lobes in the pituitary, most people just have one lobe underfunction, but the severe cases have both.  I’m in that category.  I don’t make enough of almost all my hormones.  Most people only know about sex hormones.  Those are just a part of our endocrine system.  I’m on estrogen, progesterone and testosterone for deficiencies in my sex hormones, but there are a lot of others and they all interact.  The other prescription hormones that I’m supplementing are thyroid, cortisol, aldosterone, and anti-diuretic hormone.  I take supplements for calcium and potassium for my low parathyroid hormone and low renin.

The two biggies are thyroid and cortisol.  Thyroid is used to burn our fuel.  It sets our metabolism rate.  Too little and things slow down.  The major symptom are fatigue, exhaustion, depression, weight gain, hair loss, and always being cold.  Cortisol is made by the adrenal gland and is the hormone we make to handle stress.  All kinds of stress, emotional, physical and digestive.  If you eat stressful foods, you will have less to handle emotional or physical demands.  Eat garbage, and you won’t have enough energy to exercise or handle a stressful day.  The main symptom of low cortisol is anxiety. Cortisol has another huge function, it gets thyroid hormone from the blood into the cells.  That means that without cortisol you will feel hypothyroid, even if your blood levels look fine.  As you can see, doctors will see a good lab test for thyroid and say you are fine.  You aren’t. You feel hypothyroid and are. 

Aldosterone and Renin are balancing hormones that control the sodium and potassium levels in your blood.  The first thing that is mis-understood is that if your aldosterone and renin are low, then you can’t keep adequate levels of sodium and potassium in your blood.  It doesn’t matter how much you take, your body will pee it all out.  Sodium and Potassium balance each other.  When sodium goes up, potassium goes down and vice versus.  When you are hypopituitary, both are low and taking one drives the other into dangerously low levels.  This is where I am at.  I take a steroid to increase my body’s ability to absorb sodium, then flood myself 4x/day with potassium to prevent me from going into a coma from low potassium.

Those are all controlled by one lobe.  The other lobe controls less, and the notable one that I am deficient in is anti-diuretic hormone.  It determines how much fluid your body retains.  If it is low, you pee too much and dehydrate.  The disease for this is called Diabetes Insipidus, or water diabetes.  You pee all the time, which is the main symptom of diabetes, but the cause is very different.  For me, the main thing it does is eliminate my dehydration headaches. 

I just recently learned that there is a link between the pituitary problems and my pancreatitis.  I should have been diagnosed when I was 19, but they missed the diagnosis of that acute attack.  I’ve been successfully dealing with it with a really low fat diet and lots of vitamin and mineral supplements.  My main symptom is pain on the left side of my back by my bottom ribs.  It pulls out a rib on my right.  After starting digestive enzymes, restricting all my fats, and lots of probiotics, I’ve almost eliminated that rib from popping out.  Finally.  25 years of pain from that rib.

The pancreatitis really affects my life with the underproduction of glucagon.  It’s the hormone we use to access and break down the glycogen in our muscles.  Glycogen is how our body stores carbohydrates and sugars for use when our blood levels drop.  So when I exercise, my body quickly runs through my blood sugars and tries to access the glycogen but can’t.  I get instantly weak.  So weak that my feet drag and I trip and fall and face plant easily.  I get wobbly and shaky and it’s dangerous.  I have many trips to the ER to stitch up gashes on my legs from tripping and falling or running into things.  I don’t walk straight, but veer into things. 

There isn’t really a good traditional treatment.  Glucagon supplements are bad.  They cause kidney damage and possibly failure.  One site warned that treatment with glucagon will probably make you throw up within an hour or two.  Not really a viable option.  But we’ve found another treatment, marijuana.  One study found that glucagon production is increased when you consume THC.  And that’s what I found.  My blood sugars were flying all over the place and I didn’t realize it.  I looked bipolar.  A friend suggested tracking my blood sugars, so I did.  100 strips in a weekend, testing and recording constantly.  And then it happened.  My sugars dropped from 100 to 45 in minutes.  The emotional rollercoaster happened and tracked with the blood sugar drop.  In response, all I did was smoke some marijuana, no food.  And within minutes I felt the crazy go away and my blood sugars went back to 100.  I found it, a way to stabilize my blood sugars and eliminate all the clumsiness and weakness.

I’m in the process of understanding and using marijuana to control my blood sugars.  I’m new to it, and I’ve got a lot to research and learn.  Hopefully all my research and work helps others find relief.  Hopefully, with time, the stigma against marijuana will go away.  It’s an amazing medicine with manageable side effects.  Used properly, you can live a decent life without spending it high.  It doesn’t cure everything, but is a much safer alternative to many nasty prescription and OTC medications. 

I hope to share my journey, how I figured all this out and how I manage it.  I also plan on sharing what I’m doing otherwise.  I don’t like to dwell on my illness, even though it takes most of my time to manage it.  I like to learn.  I have many interests and hobbies, and now that I’m retired, I get to do all those things I have wanted to do.