If you didn’t read my last post ‘You’re Depressed! – The Medical History of a Life Coach‘, this is going to make zero sense to you, so go and check it out now and I’ll be waiting for you to return.
It was cool to know that my latest lump wasn’t about to eat half my face away and that it was connected to my hemochromatosis.
Even so it still sucked knowing that there was nothing I could do to stop the recurring abscesses other than maintain a regime of phlebotomies.
I suggested a course of leaches to my oncologist and Helen added that she’d be happy to vacuum them up when they got full and fell off me, but he didn’t seem to think it was that funny. Phlebotomies it is then.
By now I have resigned myself to the fact that this is how it is, and there’s not a lot I can do to alter that fact. Until that is, I started to have the same conversation over and over again and all of a sudden I started to feel a lot more hopeful.
The first time a Life Coaching client mentioned the Primal Blueprint and the Paleo Diet to me I paid little attention. After all, I don’t need to lose weight and I thought I was eating healthily enough with plenty of fresh fruit, vegetables and whole grains.
I only really started to become intrigued when successive people told me how much their energy levels had increased when they adopted the Paleo and Primal approach. I don’t want to go into the whole Paleo movement here, if you want to know more check out my post The Paleo Experiment.
I started to do some research and talk to Paleo enthusiasts. Almost without exception everybody was seeing amazing energy gains and in July of 2010 after purging the house of carbs both Helen and I donned our furry underwear and went Primal.
There is one rather large downside of going Primal and that is a phase knows as ‘carb flu’ that kicks in after a few days and can last for anything from 2 or 3 days to 2 or 3 months depending on the individual.
Carb flu is your body adjusting and converting over to burning fats for energy as opposed to carbohydrates and sugars as is usually the case with a modern diet. It’s called carb flu because amazingly enough you feel like you have the flu when it kicks in.
About a week after we started things I got the carb flu and I got it bad. In fact my energy levels went from a 4 or 5 out of 10 to a 1 or 2. I was absolutely exhausted and struggling to keep going.
Just seeing clients and writing for my blog was about all I could do. My social life went down the toilet and all I wanted to do was lie down all the time. Bizarrely though I still wasn’t sleeping well even though I was so crushingly tired.
I managed to keep going for a few weeks, but with no improvement and some friends over from the UK in October that made it problematical to maintain I came off the Paleo Diet.
That prompted me to feel a bit better, which was completely counter-intuitive to what every single person I had spoken to told me would happen.
And I’m not talking about 2 or 3 people either, I must have contacted in some way shape or form 30 or 40 Paleo advocates, including interviewing the author of the excellent The Primal Blueprint, Mark Sisson.
I’d known that Helen had been researching holistic approaches to my problems and for a while had been pushing me to go and see a guy in Orlando called Dr Edwin Lee. The problem was, it meant having to go out of network and as such my health insurance wouldn’t pay a dime. And this guy was not cheap!
I kept putting it off because the last thing I wanted to do was spend a lot of money and not get the results I wanted.
I also think there was a fear that if I went to see Dr. Lee and he said there was nothing wrong with me, that I’d have to conclude that I really was nuts!
And nobody hires a nuts Life Coach trust me!
Eventually after a particular bad week in which I had to move two client sessions because I felt I wasn’t capable of doing my job to the best of my abilities I started to do my own research and came across something called:
It seemed to fit perfectly with my symptoms, although why I should have it was another matter altogether.
Adrenal fatigue is usually caused by very high stress levels, and my stress levels haven’t been through the roof in 6 or 7 years, so why the hell should I have it now and not 10 years ago?
Helen also did some research and came home one evening with a string of tests to run on me. The tests were taken from the book Adrenal Fatigue The 21st Century Stress Syndrome by James Wilson PhD, and I passed every one with flying colors, meaning I had adrenal fatigue.
The more I read about this issue, the more I realized it summed me up to a tee.
Except the stress bit. Although I have to be honest and say maybe, I was stressing about how I felt more than I thought?
I realized I needed to get help if I was to start unraveling this whole mess. So at Helen’s insistence I made an appointment to see Dr Edwin Lee at The Institute for Hormonal Balance
I’m not a big fan of alternative medicine, especially not homeopathic medicine, but Dr Lee intrigued me because he was an endocrinologist by training and had an amazing pedigree in traditional medicine.
He had broken away from the mainstream because of his disillusionment with how patients were being dealt with and because of the medical communities reluctance to accept some very common and serious conditions. Not least of which, is adrenal fatigue.
You know what it’s like when you go and see a ‘normal’ doctor. She asks you what the problem is and you tell her. She then proceeds to investigate that area and hopefully come up with a diagnoses.
If you tell your doctor you have a pain in you neck, it’s doubtful she will ask you anything about your diet, or you feet, or your family history, because she’s focused on your neck.
Holistic health doesn’t work like that. As the word suggests it involves looking at the whole person and looking for connections where maybe none had been seen before.
As we talked and Ed asked me questions about my general health I got a lot of head nodding and smiling. Then I told him I had hemochromatosis and his face lit up. “Fantastic” he said “It’s been a quiet day, but this really gives us something to go on”
I felt like I’d slipped into an episode of ‘House’, but this guy was no Vicodin guzzling, insult-hurling loon, he was genuinely caring and interested, in not just my condition, but me as a person.
He was just excited because he knew the hemochromatosis was responsible for a lot more than I realized.
“Do you have get many dental problems?”
“That will be the hemochromatosis”
“What about fertility issues?”
“Er yeh, those too”
“That’s the hemochromatosis as well”
Holy shit, so a stream of doctors and specialists that could clearly see my medical history never managed to link these things before and this guy did it in 10 minutes!
We talked some more and he said that on the surface he thought I definitely had adrenal fatigue, and possibly leaky gut too.
There is a recognized medical condition called Cushings Syndrome in which the body produces too much cortisol.
There is also a recognized medical condition, called Addison’s Disease, in which the body doesn’t produce enough cortisol.
Both of the above are very serious illnesses and not something you want to hear your doctor tell you you have.
Imagine looking down on a football field 100 yards long.
As you look to your left you can see that the last 5 yards has Cushing’s Syndrome painted across it in big letters. And to the right the last 5 yards has Addison’s Disease written in.
Wise person that you are, I’m sure you’d like to live around about the half way line, because that’s going to be optimal.
However, if you’re unlucky enough to live on either 10 yard line your quality of life will suck, but don’t worry, because the medical and insurance industries will tell you you’re just fine!
That is where adrenal fatigue falls and even though more and more doctors are becoming aware of it, it’s still not taught in medical school and is still, from an insurance standpoint, undiagnosable.
In other words, for you to be able to claim for an illness there has to be something called an ICD-9 code.
Without that on your claim form your insurance company will stare at it blankly for a few moments before summarily dismissing it and probably laughing in your face to boot.
As far as they’re concerned, you have something that doesn’t exist and they don’t give a shit how sick you are.
Ed (and by the way I’m calling him Ed, because that’s what he insisted on me calling him) called for a number of tests, not least of which was a saliva cortisol test which is really the gold standard for adrenal fatigue.
Because cortisol levels vary depending on the time of day it’s necessary to take 4 readings spaced out over the course of the day to get an accurate diagnoses.
He also ran a load of blood work including some stuff that I’d never had done before and started me on melatonin to help me sleep and some vitamins/enzymes that he suspected I may be deficient in.
When I went back for the follow up two weeks later he had some startling news.
One of the things that I forgot to say was he’d said at the consult he thought I may have a pituitary gland issue that was also impacting on my thyroid function (or something like that, I forget exactly now).
Amazingly my blood results did show a reduced thyroid function, something I’d never had before, but he was less concerned by that than he was my cortisol levels.
Below is a graph to show what a cortisol graph should look like with the dotted line being optimal.
Unfortunately for me, mine didn’t look quite as good as the bottom one and Ed immediately said he needed to put me on oral hydrocortisone because mine was the graph of somebody that dies early from cancer.
He then informed me he’d had to do that with clients less than 10 times in his career and it was only a short-term fix because this stuff can wreak havoc over extended periods of time.
And then the kicker.
Yes high cortisol levels kill sleep patterns, but so do extremely low cortisol levels. Finally an answer.
Like Adrenal Fatigue, Leaky Gut Syndrome is not recognized by the medical community at large and doesn’t have an ICD-9 code, even though it’s a very real problem for millions of people.
In layman’s terms the gut starts to leak nasty bacteria and toxins through the intestinal wall and this can cause all sorts of issues, including something that I have that I didn’t mention in Part 1 (simply because I forgot), Irritable Bowel Syndrome – sorry if you’re eating your breakfast.
Things were starting to become clear and Ed was busy tying the loose ends together.
He thinks I may have had leaky gut syndrome for years, probably brought on by a combination of stress and food intolerance’s (although the prolonged or heavy use of Nonsteroidal anti-inflammatory drugs like Ibuprofen can worsen the condition).
The bodies response to leaky gut it to produce cortisol to try and heal the inflammation. If the damage is ongoing the body has to produce more and more cortisol thus putting more and more stress on the adrenal glands until they eventually get to the point where they cannot produce cortisol, and that’s not good at all.
So where are we now?
Ed decided to run a state of the art blood test that looks for delayed food intolerances. He thinks my body has a serious aversion to one or more food groups. I explained that doing the Paleo meant I’d ruled out gluten and diary, the most common suspects.
Unfortunately though, many food intolerances are delayed by as much as 6 months and almost impossible to spot without doing something called an ALCAT Test.
Maybe the reason I felt worse doing the Paleo Diet was because I was actually eating more of the food or foods that I am sensitive to?
And that’s kind of where we are now. I’m waiting on those results in the next week or so to see what they tell us.
The hydrocortisone has definitely made a difference and I have more energy than before I went to see him, but I’m a long way from feeling brilliant and it can take months to restore full adrenal function.
However, I am a lot more optimistic and I’m relieved to be working with somebody that is looking at me as a person and not just a collection of random symptoms being spouted forth by a raving hypochondriac.
If you want me to keep you updated on this let me know and I can maybe do a follow up post in a months time. I just don’t want to whine about my health all the time and piss everybody off!