Aged 39 and having had some of my symptoms for all of my life, today I finally saw an endocrinologist…at the hospital no less (ooooooooh!). That’s not all. No sir! I got a consultant. Fancy eh?! He had a lovely student called Gloria with him and I thought you know what? There aren’t enough young Gloria’s about. We need more. Anyway, endocrinology. Endocrinology is all about hormones and, as I used to teach the GCSE bunch, hormones are chemical messengers in our body. We think of teenagers having raging hormones, or perhaps menstrual or pregnant women being slaves to their hormones but there’s an awful lot more to those chemical messengers than that. The messages they send inside of our bodies are really important things like ‘Time to get rid of some of that water!’ or ‘Make some insulin she’s just pigged on chocolate and the blood sugar is too high’ or ‘Panic and run!‘ but even that oversimplifies the endocrine system. It must do what no parliament can: working together, communicating effectively and implementing the changes necessary for the good of the whole.
If you have had so much as a sniff of me prior to reading this then you will know that I have spent the last year bemoaning, often self-pityingly, how bloody tough running and generally everything has been for the last year, and it has. I’m sorry for whining, I just haven’t known what to do. I’ve been discharged from the community mental health team and this year has been all about rebuilding my life. Rebuilding my life looks like beginning to have social activities, working, being able to care for and manage the children on my own and this bloody fatigue has stopped me in my tracks. Just as mental illness is invisible, so too is the cloak of exhaustion that has held me back this year. I’ve found that to be a huge mental obstacle. Of course I don’t wish to have anything wrong with me but I have’t been able to let go of the yearning that there is something measurable, something visible. Anything but this constant fighting something unseen and subjective to me. What if I really am just weak or lazy or a hypochondriac? I even told one GP that I would completely accept if this was all in my head, I was fine with that, just please tell me how to stop believing that I have these symptoms. OK, what I actually told her was that I’d lick a badger if she told me it’d help, that I was desperate. It was unhelpful. I was sent away and told to go back to see my regular GP in a few months if things hadn’t improved. Given that I’d be experiencing this for over 3 years guess what? It didn’t improve. Shock! Who would have guessed eh?
With being positively Olympian in my negative self-talk every slow down and perceived failure has been a weapon to punish myself with. Thankfully with all that therapy (particularly the Schema stuff) I have defences against those weapons but it’s all an extra complication and distraction from what I want to be doing: living my life fully. So I did go back to my regular GP – the guy that knows me, that listens to me, that seems to get who I am and how I operate, and that is obviously an absolute nightmare to get an appointment with. In I went with my usual written list because I can’t rely on myself not to talk absolute crap during the appointment. He took my blood pressure and I told him it’d be textbook, it always is. Of course I was right mwhahahahahah but not be thwarted he then asked me to stand up and re-took the reading. It took all of a minute maybe? He asked if I’d ever seen anyone about any of this. Confused I told him no. Of course I hadn’t seen anyone about my made up pathetic-ness. Weirdo! I don’t think there’s a department for that. So he tappity tapped on the computer and told me he was referring me to endocrinology. Interesting, and errr why? His confidence in this decision really unsettled me. How could he be so sure that I was worth wasting more NHS money on? He explained that when I stood up my blood pressure dropped too much. Oh, right. I laughed that was funny because I often felt faint on standing but had felt fine that time so it seemed strange that he had actually measured an observable phenomenon. In fact I was in denial and began squinting at him wondering if he was making it up to be nice to me because he felt sorry for how mad I am. He explained his thinking and I thought ok, that makes sense, I’ll roll with it even although I know they’ll find nothing (because I am tortured by invisble forces – hey I’m still a bit mental, right). I appreciated that I was being progressed past the cycle of GP appointments and fruitless blood tests. I left a bit stunned and with a glimmer of hope: he measured something. I couldn’t have faked that blood pressure thing. Proof. Evidence. I’ve been dizzy on standing all of my life and all it took was about 1 minute to investigate. Wow.
And so, to Google!
I read and I read*. Obviously the NHS website, webmd, Endobible (http://www.endobible.com/) is fantastic and there were various others. I had sneaked a peek at my GP’s notes on his computer and saw that he’d written “addison’s?”. Well, I knew it couldn’t be Addison’s because one of the hallmarks of Addison’s is weight loss, LOSS! Me? I’ve ballooned. Defo not Addison’s. So more research: Cushing’s? No. Diabetes? No. Menopause? No. Insulinoma? I mean, I suppose it could be… Sheehan Syndrome? A possibility? I knew I was never going to figure it out from Google but I wanted to be prepared for when I finally got to see someone special. Hey, I had a 5 month wait so I had time. I bought a glucose meter to see if my blood sugar was a problem (it wasn’t). I took the requested 9am blood cortisol test as instructed (250mg in case you’re wondering!).
Then today arrived. Woo-hoo? Not really. I had mentally prepped myself for disappointment, that my battles with illnesses that are invisible would be continuing on. I figured the low blood pressure that my GP had measured was probably just a random one off and I was about to be very sheepish in a hospital that is for actual sick people. Of course I came prepared with my written list! Two pages but a whole lot more succinct than any attempt I would make at rambling verbally.
OMG the waiting area was so warm that I was nodding off. I had the routine weight, height and blood pressure taken and back to the waiting room. Zzzzzzzz. Then, it was time, I was called in to see Mr Consultant and Gloria – remember I told you about Gloria? Wow.That fella cut to the chase. Good on him. He recognised my scientific background and talked to me at an appropriate level. I’ve got to be honest, it was so amazingly refreshing not to have to sit there patiently nodding thinking yes, I know all this, please move on. I’m so used to being patronised, it was lovely to be seen as me. He asked my thoughts and I told him. Usually I’d be embarrassed, like as if I should dare to have an opinion, but I felt at ease. He told me just what I’d dreaded “I don’t think we’ll have any answers for you today, I’m not convinced this is endocrine… How do you feel about Chronic Fatigue? Have you considered that this could be side effects from your psychogenic medication?… Is this a sleep hygiene issue?… ” Internally I panicked: it’s the brush off! Oh no! I was instructed on to the bed thing. Blood pressure again. Good grief! Then he asked me to stand up, took the bp again and said “You’re slightly tachycardic on standing”. I silently thanked my body for being honest and not pretending to be fine. Slightly though. Not much. Maybe nothing?
We sat back down. Right, his recommendations: another blood test (ok doke), a continuous blood glucose monitor for a few days (did not see that one coming), a synthacthen test (pardon? They inject synthetic adrenaline into you. This should stimulate your adrenal glands to produce cortisol so then your blood cortisol level can be measured in response to being stimulated). Well, I’ll admit, I was surprised. You mean you actually want to do something before you dismiss me? I had not been expecting that.
Then we talked about Chronic Fatigue, that my symptoms were pretty much a standard list of CFS symptoms. What did I think of that? What could the trigger have been as there is usually a CF trigger? Had it been the flu all those years ago? Was is my poor sleep? Afterwards I came up with my own potential theory: it had been the Yorkshire Marathon 2018. I had never felt right ever since then. In my gut I do feel that the marathon was the final thing that pushed an already unbalanced body just too far.
Just as I was about to leave he said “Oh and PoTs. We should maybe look at that too. Depending on how these tests go we might want to give you a tilt table test.” Well, of course I’d heard of PoTS from all of my googling but I couldn’t remember what the chuff it was. “Right you are!” I said as I jollily left the room, thanking the Doctor for his time and still feeling very surreal that there were further tests to be done.
Of course I’ve been googling PoTS (Postural Tachycardia Syndrome) now and it is the one thing that I have read and gone that’s it! THAT IS IT. Is it PoTS though?
Well, I feel like it is but that doesn’t mean it is. Let’s all just calm down a minute. I’ll have to wait and see how this evolves but it is progress. A lot of progress. More progress than I had imagined in all honesty. I’m hoping that I use what I’ve learnt so far to keep me running – both as a human being and a runner! – safely. Apparently deconditioning is common with PoTS. The tiredness stops the exercise which deconditions the body which makes the exercise harder and on the cycle of deconditioning goes.
Whatever diagnosis I may, or may not, eventually end up with my trip to the endocrinologist gave me something that I really, really needed more than anything right now: validation and hope. I can run with that.
Note * I find researching about my health a bit of a compulsion because I do not fully trust medical staff. My ectopic pregnancy was missed because I should have been screaming in pain and I wasn’t. I was treated appallingly as a time-wasting-attention-seeker. When they finally performed the scan that I had been pleading for (several days later) I wasn’t allowed to leave the hospital. They operated and the fallopian tube was rupturing. It was caught just in time. Then there’s been the struggle to get the severity of my mental health difficulties actually taken seriously. The number of times I have been to GPs and reported, what I now know to be, standard depression, anxiety and even PTSD symptoms. Back and forth, back and forth. Let’s not forget my father-in-law who died earlier this year with a heart problem that would have, most likely, been entirely fixable had it been caught in time. Three years in a row he went back and forth to the GP about that and now he’s dead. There’s more but I think that’s enough fuel for my ‘why I do my own research’ fire. I accept that Doctors are human and that they are often working insane hours. I can see how easy it is to make a mistake with a conveyor belt of people to see. I would rather not be that tired mistake. That is all.