As some of you may be aware, I have seen a couple of endocrinologists to date for my adrenal insufficiency and I have not connected with either of them. Some may call it ‘Doctor Shopping’, some may say that it is me with the problem because shock horror, every doctor is the right doctor aren’t they and how dare we question them?
Well the answer to that is no, and not all endocrinologists are equal when it comes to adrenal insufficiency – or any endocrine problem for that matter. Because at the end of the day, medical knowledge on any specialty does not begin and end at medical school. It extends to continuing professional development, an open mind and a belief that not all patients fit the standard.
So no, I do not call it ‘Doctor Shopping’, I call it exercising the right to a medical consultation while being treated with understanding, belief and respect.
If you have read my previous blogs you will know that my journey with adrenal insufficiency has been a bumpy one and one that was frequently dipping to the area of denial and an intense love-hate relationship with my steroids. If you haven’t read these blogs, here is the link if you fancy reading them. Mind you, they don’t make for exciting reading and you could end up sobbing into your coffee and eating custard creams.
I have had years (and I mean almost six years) of attempts to wean, 1mg every month, 1mg every 2 months, 0.5mg every month, every two months and more recently 0.5mgs every three months. It has been tiring, draining and more to the point it has taken its toll on me mentally as you can probably imagine.
Adrenal insufficiency can give some very specific symptoms when it comes to low cortisol. Symptoms that many doctors disregard because they may not have been listed or studies done to prove them. Now that is fair enough, one can only go on what knowledge one has acquired but then again, the patient should not be dismissed when they report what is happening to them either.
I recall telling one doctor how I was (still am) highly sensitive to bright lights and loud noises and smells. The smell of coffee beans is overpowering to me and everything that I smell is exaggerated. I told him how I get an ache in the tops of my thighs (usually when I would try and reduce my steroids), I told him how I was easily startled with sudden loud noises if they woke me up at night.
‘Those symptoms are not caused by adrenal insufficiency’, was his somewhat blunt response.
It was only when I confided with some people in a support group that I realised that I was not the only one to be hypersensitive to things, or get that awful ache in the tops of my thighs. More to the point, I was not the only one that had my symptoms disregarded and been made to feel like an idiot by the very professionals that were meant to assist me.
Another specialist suggested in the nicest possible way that perhaps I took the odd 4mgs of hydrocortisone for ‘euphoria’ and no, I am not joking about that either. Believe me on this one, if I wanted euphoria then my book reaching the bestseller list on Amazon would do that, or perhaps a ticket to Namibia or even meeting the singer Usher (I love Usher, like proper fan-girl crush) – but 4mgs of hydrocortisone for shits and giggles? I don’t think so.
Promising myself that I would never see another Endocrinologist again, I continued to try and manage my condition while holding down a full time job and waking up at 5am each and every morning thinking that I had gone to Hell in a basket.
What makes this whole thing even harder to deal with is the fact that there is no end in sight. No respite from symptoms, no patient education and support, no protocols in place and no clear cut treatment pathway to assist me other than instructions of taking my preds once a day and everything should be fine (once a day would be fabulous but I have to split my doses into four times a day as they only last a few hours).
So what now?
A few months back I was given a name of a specialist who is reportedly very good. I sat on that info for a couple of months, wondering if I could muster the courage and energy to make contact – you can’t blame me for being cautious.
But as the old saying goes ‘You have to kiss a lot of frogs before you find your Prince’ – not that I am planning on kissing any endocrinologists of course. I will just settle for an open minded, compassionate doctor, a treatment plan and a way of making my prednisone doses last longer than three hours.
Wish me luck.
Samantha Rose Copyright August 2018 ©