Lets talk about Graves and healthcare, I'll totally make it fun yeah?!

Lets talk about Graves and healthcare, I'll totally make it fun yeah?!

Image above; welcome to artwork in hospitals

Usually by now I'd have a pile of new styles in stock and be making promotional stuff; this year, I've had to show most things as pre-orders and it's a bit of a hodge-podge on the photos front. 

I feel like I should probably explain this, especially as quite a few of you have been kind enough to send get-well-soon wishes when I have mentioned healthcare issues. But I'm finding it quite tricky to collapse a year of healthcare drama into a blog for people who like lingerie, so, um... I'll do my best to make it either informative or silly, you know?

On reflection this is also things I did instead of doing much else life-wise, as well.

As regular readers may recall, I have been seriously ill for twenty years now. You can read more about that elsewhere. In the last few years I have been deteriorating. In the real world, healthcare isn't like House, or Grey's Anatomy, theres no spare teams of people who are just like super into diagnosing you, plus there's this little pandemic thing, so getting even basic healthcare has been a challenge.
This year I started getting the consultants check-ups I should have every year again, and they... had some concerns.

As did I, since the ever-changing array of issues I deal with started to speed up enormously, and meant I basically wasn't functioning at all. My blood pressure and heart rate shot up, I have non-healing wounds and striations, extreme muscle tension causing constant migraines, I wasn't sleeping because I was so itchy, all sorts of random things.

The consultant suggested I need an endocrinologist and a dermatologist. The GP (primary care physician) insisted on tests before they did that, then got the results and were like ok woah yeah endocrinology it is then.
But then nothing happened. The GP's practice kept saying endocrinology had suggested more tests, and all the tests showed up things wrong (unusual for someone with an M.E diagnosis!) but no specialist referrals appeared. In fact, several of the GPs I saw digitally suggested things like "it's just stress, take two weeks off work" or "its probably white coat hypertension" or "its probably menopause"

In the end the person I lived with paid for me to see someone, and thank god they did because I was getting much worse, very fast, and it turns out I definitely have Graves Disease, and at the time, I also seemed to have adrenal insufficiency.

I'm a very irritable person at the best of times.

Graves causes your metabolism to speed up because your immune system has decided to divebomb your thyroid so it pours hormones into you in vast quantities. At its worst the Adrenalin Insufficiency stops you from speeding up when you do in fact need to - like when you are wounded - so that seems like it explains a few things, right?


I got given a medication to slow the thyroid down, and strict instructions to avoid injury or infection if at all possible, and emergency drugs for if I couldn't do that, and a warning card to carry. And referred back into the NHS for further tests and so on, which this time did work... sort of.
By which I mean they recorded me as having had a short synacthen test for the adrenal insufficiency, when in fact no such test had happened, amongst other issues.

Two days after I was told to avoid injury, and about 18 years after I was diagnosed with a blood clotting disorder that means that even minor surgery has to be accompanied with medication to ensure I don't just carry on leaking blood everywhere, I was told I needed a breast lump biopsy.


Absolutely the worst waiting room chairs. For your mammogram, of all things, why.

You didn't think I'd just developed one problem at once, did you? Oh no, when I add to my bespoke collection of healthcare problems, I do it at full throttle. So yeah, I've got a breast lump that is very slowly growing, and I started off with a registrar who was just like "well you don't have any serious illnesses" and implied we could just ignore the adrenal thing.  This kicked off a 6 month process of horrendous admin (honestly, the clinical work after this was fine, but there is something horribly wrong with notes, communication and appointment booking in healthcare, and it pre-exists the pandemic) that has finally resulted in a biopsy next week, or at least, I really really hope so.

Meanwhile! in my healthcare system experiences this year;

  • 111 and a walk in clinic (like A and E/emergency care but for things that are less life threatening) suggested an ultrasound for a non-healing finger injury. But they can't do that. The GP then said they can't do that without a surgical referral. So we made the referral and got told it was an inappropriate referral. Then I got booked for an ultrasound anyways, but after waiting for 3 hours I discovered that they had filed another patients ultrasound scan as if it was mine and the consultant had left because he'd seen all the patients, obviously.
  • Once they did the ultrasound they found inflammation. This apparently should be seen by a rheumatologist urgently, but nobody told me that and in any event the first available appointment is in March next year
  • I then found I also had a surgery appointment which could only be cancelled with an original reference number and a PIN from the GP, which fo course, I didn't have. "Just ask your GP surgery for it" was the advice. Anyone in the UK is now piddling themselves laughing because getting admin details from GP's receptionists is a Greek gods level task.
  • I have scaly bald patches on my scalp (probably auto immune?) My dermatology referral has been waiting since February
  • We are in theory trying to get all my hospital care in one hospital to help communication. But it's apparently impossible to refer me to the right pain management consultant for that to happen


So... it's been a year, folks. Sorry there weren't as many new pants in it as I'd like, I've basically had a full time job as a patient instead! However i did get a shoot done, I am excited about this corselette, albeit probably because I can inexplicably get my 2XL hips into the M sample, and I finally learnt how to put text over an image. Surely I will be a social media whizz by next week, except that I got booted for saying in exasperation one day that I was so hacked off by the kafka-esque nightmare of referrals that I was going to kill someone. Totally a clear and credible threat, good job the algorithm keeps us safe!

My first and what probably should have been last attempt :)