Tag Archives: testosterone

In my Head

I spend a lot of time in my head.

Observing, synthesising, debating and concluding. All by myself. All in my head.

I’ve always done it. I don’t know how not to do it.

I put it down to being an only child, where there was no one else to share my thoughts, or the scenarios and debates I created in my head. My parents were hard working migrants, trying to put food on the table and provide their first and only born with the education and opportunity to achieve and succeed.

I’m sure as a creative child, those thoughts would have been fanciful and self-deluded. After all, there was no one to point out the flaw in my plan for schoolyard domination. I developed resilience via a steep learning curve.

Adolescence did not change my modus operandi, particularly as my parents went through an ugly divorce in my pre-teen years. The arguments, the late night whispering and the removal of my dad’s clothing into 40L plastic bags were all observed, recorded and filed away…for future reference.

My young brain recorded that trust and intimate relationships are fraught with danger.

Now as an adult, happily ensconced in an intimate relationship that looks nothing like my parents’ or anything else I had witnessed or imagined, I still find myself spending quite some time in my head.

Observing, synthesising, debating and concluding.

And in dealing with undefined auto-immune dis-eases, I find that I spend more time retreating, in my head, wondering how did it all go so wrong? What can I do to stop it, reverse it, halt its progress?

I’ve spent many hours googling down the rabbit warren, coming back more overwhelmed than clear. I’ve read books on neuro-plasticity finishing them with great hope that my brain can repair itself from the chronic fatigue short circuit and my short term memory will return.

I’ve scoured the latest journal articles on lupus research and the effectiveness of rituximab and the latest in immuno-suppressants. Hoping that pharmaceutical companies will add another drug option to the market, given that it’s been over 40 years since the last dedicated lupus drug.

I’ve struggled to find any information that could explain the importance of testosterone for females, and why my pituary gland is malfunctioning, without having to enrol in a degree in medicine. Although I suspect I have the first year of theory covered.

I even had my hopes raised when ABC’s Catalyst program, did a story on testosterone, but it was short lived as they chose to focus on middle aged men and menopausing woman. Because it appears that the sex lives of baby boomers, deserves more research and funding than those living with auto-immune disease.

I’ve fallen in and out of love with meditation, struggling to find a routine, a niche, a regular space in my day. Started drinking kefir daily, and once I got past the tangy and surprising effervescence of my coconut milk, my gut started to thank me immediately.

My yoga practice ebbed and flowed, largely due to the instability of my spine as the arthritis of my sacro-illiac joint decided to stand front and centre in 2014.

It started as a niggle, but ended with another red flag on my littered path.

The pain in the dimple of my left glute, my left knee giving way as I walk Franki to the café or try to manage the 45 stairs to freedom. The tingling in my left heel, the numbness in my hamstring.

Of the three episodes I’ve experienced in the second half of the year, I seem unable to acknowledge the symptoms until my back spasms, my hip locks and I can no longer turn my neck or lift my arm. Then the desperate call to the physio. As I’ve said before…I can be a slow learner.

And then the humility kicks in and I need to exit my head.

I ask my husband to wash my hair. I ask friends to walk a little slower. I ask Franki not to stop and sniff at every lamp post, perhaps every third one instead.

I tell my yoga teacher it’s a non-pretzel day, I can only do a 30 minute session and ask “can we do some breathing and meditation to complete the hour?”

And I ask strangers to help me untie Franki from the café chair leg as the Fisio-taped back and shoulders make my movements laboured as if my life has been catapulted into slow motion.

It’s those moments where I realise I can’t spend all that time in my head. That in fact, my life can be made easier by just opening the doors and sharing, asking and letting go.

Yes, 2014 has been a challenge. Not because my prognosis has become any worse, and not because the treatments have been wholly unsuccessful. Like everything in life, it has its success and its shortfalls.

I’ve experimented, struggled, rejigged and reworked.

Always in my head. But slowly, with others.

And with only hours left in 2014, I can only hope that I can approach the next 365 days with a little less “in my head” and a little more “in the marinating bowl” with others.

I’ll share my puzzle pieces, and ask for a different perspective. I’ll try them again, this time in a different place or space, sometimes by myself but also with others.

And I’ll remind myself that just as my parents tried valiantly, so will I.

Because life doesn’t always play out the way it does in your head.

Advertisements

Turn Off & Tune In

In March this year I decided to take myself off all my medication.

The Prednisone, that is meant to keep the immune war at bay, the Plaquenil, an immune-suppressant drug that helps lubricate the Nancy Kerrigan knees and the Lyrica, that is meant to turn off the burning sensation on the soles of my feet.

I wasn’t advised by my medical team and nor did I ask them. After all, it is my body. I had just spent 6 weeks detoxing from an experiment with methotrexate. Words can’t begin to describe how horrible I felt on this drug. But I had had enough.

What was truly making me sick? The A.I. conditions or the medications?

In February after a routine gynaecological exam, because clearly I hadn’t suffered enough, the gynaecologist stated he was concerned about endometriosis and felt it needed to be investigated. I was approaching the end of my “fertile years” and if childbearing was on the agenda, best to check it out.

Childbearing could not be further from my mind, after all I was still pulling chunks of my hair out of the shower drain. Childbearing was never high on the list. In fact, the thought was (and still is) rather terrifying.

I did point out that in order to have children, I would need to be physically and emotionally well enough to even enjoy practicing and as a relative newlywed I wasn’t exactly hanging from the chandeliers.

He suggested I have some blood work to check my reproductive hormones, but expected no real surprises, “you’ve got to keep in mind that your body is going through enormous stress and sometimes it just shuts off unnecessary requirements.”

No shit, Sherlock!

But those words did spark off a chain of thoughts… somewhere and at some point I did recall reading that hormonal levels are often askew during active A.I flares. And with the majority of A.I. diseases affecting women, it would make sense to check reproductive hormones.

But after 18 months of appointments with specialists across many fields, no one had bothered to check reproductive hormone levels, despite the fact that they are directly linked to energy production, mobility, muscle building and strength. The three things I was struggling with on a daily basis.

To provide a little context on why hormones are important and often overlooked, here’s the skinny, or skip ahead if you’ve heard this before.

Hormones are a naturally occurring chemical substance, triggered by the brain and released through the body by glands across our body in short bursts and pulses. They make up endocrine system. The main glands that produce hormones are the adrenal glands, pancreas, ovaries, pituitary gland, thyroid, parathyroid and testicles. Ref betterhealth.vic.gov.au/bhcv2/bhcarticles etc…

As a CFS patient, cortisol levels are one of the first things my endocrinologist tested for in addition to my thyroid levels. Not only my Thyroid Stimulating Hormone (TSH) level, but also my T3 and T4 levels. To put it simply, a TSH level is an average calculated from T3 and T4 levels, therefore if you have an imbalance in either of these levels, the TSH is likely to mask it, therefore why your results come back “normal”. If you’ve never had T3 & T4 checked insist that you do, but be prepared as Medicare will not cover it.

Check out Better Health by VIC govt for a more detailed explanation here.

So in late February at a follow-up appointment with my GP, I asked if my hormone test results had returned, as I hadn’t heard from my gyno.

And as he sat there, pouring through the numbers, looking for any red numbers to highlight an abnormality, there it was.

Testosterone test - Feb 14
Black & White, but an asterisk usually spells problems testosterone level in Feb 14

Undetectable levels of Testosterone. WTF??!!

How long had it been like this? What caused this? What does this mean? Could this be part of the solution?

The short answer is “it could well be.”

Like all reproductive hormones they fluctuate over the course of a menstrual cycle, so diagnosis or treatment decisions based on one reading can be misleading and potentially dangerous. But when more than one came through at undetectable levels and all my other hormones indicated I was nowhere near peri-menopause, it was clear that for some reason the pituitary gland had stopped sending messages. It had simply turned the chandelier lights off.

Treatment and access to treatment when you’re diagnosed with an androgen deficiency is a complex and hairy beast. Google androgen deficiency, and if you live in North America, Asia or South America there’s no government approved treatment for women – it appears they don’t even recognise it as a medical condition.

If you live in Australia, you will come across many more articles suggesting “there is no standard treatment” and a diagnosis “is controversial” rather than “there is a possibility that this may contribute to the symptoms associated with auto-immune presentation.”

The key is to find a progressive endocrinologist who is prepared to say “we don’t know why it happens, but there are ways to reboot the system.”

I lucked out! I figured it was time! Professor Eden is the ducks-nuts of endocrinology and women’s health. Young, smart, approachable and empathetic.

As he told me, “I’m in the business of giving people hope.”

Butterfly light

He explained the complexity of hormone testing and in particular the complications of measuring testosterone. It simply doesn’t exist! But what he was able to do was explain that testosterone is critical for women, but it’s not the amount circulated in the body that is important, it’s the 1% that is being absorbed by body tissue that is critical to understand. This is what’s critical to restoring energy and chandelier gymnastics.

Then he grabbed a pen and a piece of” to-be-recycled” paper and scribbled down a formula, which brought back nightmares of my university statistics class, and circled SGBH – sex globule binding hormone.

A healthy woman in her reproductive years should have a reading between 6-9. I was sitting at < 0.1. Clearly room for improvement.

The plan: application of transdermal (skin) testosterone cream daily for a month, retest the SGBH and see how my body responds.

There is one pharmacy in Australia that currently provides a testosterone cream specifically designed for women, and it is only available on script. The concentrated dosage is 1% and of course, the tube is pink!

I’ve been on testosterone cream since April, increasing in dosage and concentration under the direction of Professor Eden. I’ve also been off all other medication (except for a period post-operative to confirm my gyno’s original suspicions) because I wanted to see whether any improvement in my fatigue, joint pain and mood was directly due to the hormone replacement.

I can report that in the last four weeks I have been able to:

  • return to a one-hour yoga class – weekly
  • return to a one-hour Pilates class – weekly
  • I got back on my road bike for 30mins, in windy conditions and didn’t blow away or blow up (once)
  • I survived my first 45 min spin class
  • And today, I returned to the pool and did slow laps with the rehab crowd (all over 50 and recovering from life’s little shocks and wake-up calls).
It's been a while since the swim bag
Franki inspecting the bio-degrading bag in my swim bag!

And last week’s blood test results showed an SGBH result of 3. Finally heading in the right direction.

Is this part of the puzzle?

I don’t know. But I’ll keep you posted.

 

For more info about Androgen deficiency, Monash Uni has some great info…check it out here.