A Free Gift

More than twenty years on, the autoimmunity that gave me diabetes has decided to reward me for my loyalty with a free gift: Addison's Disease

And so ends ten days of nightmares.

It began on Saturday July 1st. England lost to Portugal on penalties in the Quarter finals of the World Cup, but it was still a good day. I'd met a friend after the game for a single drink and something to eat. I was on my way into Whitechapel Tube Station on my way home, probably around 11pm and alone, when the world switched off.

I'd like to tell you what happened, but the truth is simple: I can't because I don't know.

I've filled in some gaps from information given to me by the paramedics. Witnesses said I'd simply stopped, fallen to the floor and started having a seizure. Certainly, I'd bitten my tongue, as I woke up with blood in my mouth and smeared across my face.

The paramedic who attended first tested my blood sugar at 1.2.

1.2 mmol/l

That is 22 mg/dL

A few minutes before, I'd been walking (ok, on crutches) along the street feeling fine.

A few minutes before that I'd given a friend a quick hug and said goodbye.

And perhaps ten minutes before that I'd tested my blood sugar at 6 mmol/l (108)  with no insulin active in my system.

It didn't make sense.

Certainly not then, when I came round to a sea of strange faces asking me questions I could neither understand nor respond to. Not a few minutes later as I struggled to articulate simple words on my arrival at the A&E Department of the Royal London Hospital (fortuitously located almost directly opposite Whitechapel Tube.) And it still didn't make any sense to me around half an hour later when the post-glucagon vomiting started.

It still didn't make sense the following morning, when I realised my blood sugar had never at any point, even after Glucagon, been recorded at higher than 6 (108). Overnight I'd had less than a single unit of insulin and still my blood sugar remained within range.

It had been late when I'd arrived at the hospital and I had accepted that I would be better to stay until morning but fully expected to have recovered by then and to go home to figure out the cause of my spectacular low. I didn't expect to feel so absolutely horrific. To be unable to stand up without the room spinning, to feel sick and to have so much unexpected pain from my still plastered ankle.

I've had bad hypos before.  I've had seizures before. I've had Glucagon before. But I've never felt this bad afterwards before.

The one consolation seemed to be that I'd been cured of diabetes.

Running basal rates of around -80% (by which I mean 20% or normal ratesl) I was still almost continuously hypoglycaemic. My own Diabetes Specialist Nurse (DSN), who is based at a different hospital, has told me since that the doctor treating me at The Royal London had actually contacted her on that Sunday and asked if I really did have Type 1 Diabetes!

I proved a problem to the diabetes team at The Royal London. They fully admitted to being unfamiliar with pumps, as they don't support pump patients. I've also never been a patient there before, and they had no idea of my diabetes or general medical history. I wasn't it much of a state to help. Tired, frustrated and permanently hypo despite continuous carb consumption, I just wanted to go home, regardless of what the consequences of doing so might be.

I spent last Monday alternately lying flat to reduce my dizziness, or being violently sick. I had to push the staff to get my plaster cast removed to check for a wound infection, as my whole leg burned with pain. At one point, I had an intravenous dextrose infusion and my pump switched off, yet was still recording blood sugars of less than 4 (72).

By Tuesday my leg had proved to be fine, the vomiting had diminished and I seemed to be able to avoid hypoglycaemia by taking just 0.05 units of insulin per hour (Down from an average basal of 1u/h.) Seemingly out of ideas for what to do to better stabilise me, the team at The Royal London let me go, in order that I could return the following day to my own diabetes team.

I spent Tuesday night waking to the alarm every 90 minutes to check my blood sugar and eat sugar as required. By Wednesday lunchtime I was exhausted and my blood sugar had slid back to 1.6 (29) with no symptoms at all apart from being sick, which had been happening regardless of blood sugar level anyway! I remember clearly lying on my bed trying to swallow tubes of glucose gel without being sick. I remember panicking because I knew I was going to be late for the appointment with my diabetes team, but I don't remember clearly the details of the journey to the hospital, (or, sadly, how I came to lose my Oyster Card)

When I arrived, I sat in the waiting room, resting my head on my knees as the only way to stop the world from turning around me. My name was called by the lab tech who takes bloods, but by the time I'd stood up, she had disappeared. I reached the front of the waiting room before falling forward....

It might seem mad, but when my consultant, seated but stooping to reach eye level with me as I lay on a couch, patiently and compassionately explained they would have to admit me and that there was no way I could go home, I started to cry. As terrible as I felt, I just didn't want to stay in hospital again. But if I'd gone home, who knows what might have happened.

Over the next 24 hours, I got through around 3 litres of Lucozade and 8 tubes of glucose gel, yet my blood sugars, tested hourly by staff, remained steadfastly low. At times I remained below 2 mmol/l (36mg/dL) for several hours at a time. What amazed nursing staff was that I felt exactly the same when my blood sugar was 1.5 as I did when it was 5.5. The same was, unfortunately, terrible, but I definitely had no indications of actually being so low - unsurprisingly I guess.

On Thursday afternoon, the SHO came to see me and explained that, as they'd suspected, my adrenal glands are no longer working correctly. My morning cortisol level that day had been less than 40, where normal is 200-250. Cortisol is a major antagonist to insulin and my persistent hypoglycaemia, as well as my other symptoms, were down to the lack of this hormone.

The SHO touched my arm and asked if I was ok.

I didn't, honestly, know how to answer that question.

I was relieved to have a reason for the way I had been feeling, and for the hypoglycaemia. At least it would be corectable, now we knew what was causing it. And at least Addison's is relatively strightforward to manage.

But who wants another chronic condition? Who wants something else to squeeze onto their medical ID tag, more tablets to take, something else to think about during illness or travelling?

Not me.

Damn you autoimmunity. I didn't want your bonus gift.

Comments

[rachel]

Ugh, how scary and how annoying of a bonus gift.

Caro,

I'm so sorry you have to cope with yet another chronic condition.

Damn autoimmunity is right.

But seriously, your courage in the face of a truly frightening week -- and yet another diagnosis -- is inspiring.

Sandra

[Sandra Miller]

Uh, That was me :-)

[Lyrehca]

Jeez, how scary! How will this new condition affect your day to day diabetes control? Once the Addison's is treated, does that mean your sugars, as they are, will go back to acting "normal" the way they did before you had the Addison's?

[Scott K. Johnson]

Oh Caro!

What a scary scenario. As you say, glad to know what the cause is.

As Sandra said - your courage is inspiring.

All the best!

[Kerri.]

Caro, I'm thinking of you over here. I know that you will handle this diagnosis with grace and poise, as you appear to handle everything else, but I'm sure your mind is spinning and things are stressful at the moment.

We're here for you. Always.

[art-sweet]

Oh Caro, how utterly terrifying.

I'm glad you got it figured out, and yet - what shitty, shitty luck.

Is there anyone who can come and stay with you for a while? A friend, a relative... just someone to back you up until you feel more stable. I'd do it if I weren't on the other side of the damn ocean.

Many hugs from the other side of the pond.

[julia]

How terrifying! Will the medication for Addison's help with the bg control? Here's hoping, anyway.

[Andrea]

Caro-

OMG- that is truly scary stuff! I'm sure not knowing what was going on must have been very frightening for you. I strongly believe that the unknown is usually much scarier than the know... if that makes any sense.

It sucks that you ahve to deal with a chronic illness... there's no debating that, but I think it's good that you know what you are dealing with and not left with some condition lurking under the surface. This is something you can manage and I'm sure you will be just fine. You sound like an extremely strong person.

I am So sorry that you had to go through all that, but I'm also SO glad that you are ok... that is what's most important.

keep fighting! :)

[Lea]

Hi, just sending you hugs from down south. Thinking of you! These are all gifts that can be done without. Just a pity it cannot be returned to a store. xxx

[Chrissie in Belgium]

Oh Caro, I am really sorry to hear about what has been happening to you. When will it end???!!!!!! One shit after the other!

Are you home yet? Hospitals suck, but OK sometimes they are really necessary. I am really thinking about you! How is it going in relation to managing the D? Do you still take very low amounts of insulin or does the Addison medicine make the diabetes behave as before? If I have a million questions - you must have a trillion! Please keep us informed. We care. I CARE alot!

(((((((((((HUG)))))))))))))

[Heidi]

Hi Caro

You are sure right that autoimmunity sucks. Not only do we have to handle one autoimmune disease, but we're also more susceptible to the other ones :-(

My best friend has Addison's, which causes troubles sometimes, although most of the time she does fine. We got to know each other when we were both admitted to the hospital upon our different diagnoses and got to share a room there.

All the best!

[Tiffany]

I'm sorry this happened to you, Caro. It totally sucks with a side of lemon!

If you need anything - be it an ear to rant in or a slice of dill pickle - I'm only an email away!

('Course the pickle is a continent away so you take your chances with that one)

[type1emt]

Man,Caro thats really rough (((hugs from the other side of the Atlantic!)) Is your bp fairly low too? (hence all the dizzyness?)
Thinking of you-feel better soon

[Johnboy]

Hey Caro, I'm sorry to hear about this additional layer of complication.

I do have another friend with both conditions, and the key to the addison's seems to be finding the right hormonal balance and in understanding what impacts hormonal levels.

I know that this must be hitting you hard, but I also don't doubt your ability to handle it.

You are a major source of inspiration to me. Hang in there, Caro. You are blessed with both the brains and the resolve to do it!

[Penny]

So sorry, Caro. Stupid autouimmune diseases!!

[Caro]

Guys, I'm totally overwhelmed by all your responses. Thank you all so much for caring.

Lyrehca, Julia, Chrissie... and anyone else who asked it... yes, once I am taking the correct amount of hydrocortisone, my bg control should return to much as it was before. In fact my diabetologist said that diabetes gives us a good clue of whether things are right or not. If I'm not taking enough hydrocortisone, I will tend to still be too low on low insulin doses. If, on the other hand, I am taking too much I'll need more insulin.

I'm still fine tuning it at the moment, as Johnboy says, it is all about getting the right balance. I feel like I'm slowly getting there, I can't believe it has been less than a week since I found out!

Oh, Tiffany, the pickle sounds mighty tempting ;-)