Illness Burnout

Everyone knows you can get burnout from working too hard, being exhausted from looking after the kids, exercising too hard… but did you know you can get burnout from having a chronic illness?

It’s not so much the ones you have to manage by taking meds a few times a day, that’s not really that big a deal and takes maybe 2-3 minutes per day, with a bit more input if you get flu or something. It’s more the illnesses which need constant maintenance and monitoring and which impact massively on your life.

It’s bloody knackering. It’s like having a pet or a child but never getting the good bits. And unlike a pet or a child, you can’t have ‘me time’ or leave them with the grandparents for the weekend. There’s always a big part of you which wants to say ‘f*** it, I’m not dealing with this today’, but you don’t get that choice if the end outcome is death.

Here are some of the things that make me feel burnt out with my adrenal insufficiency sometimes:

1. By far the one that annoys me the most day to day is following a medical low carb diet. It’s supposed to make me feel better, help me lose weight and lower my cholesterol. But it doesn’t. So what’s the point in doing it. Why can’t I eat what I want?! The diet itself isn’t the hard bit, it’s the guilt that comes with it, that I must be ‘doing it wrong’ since it’s not working.

2. Keeping records and diaries. If there’s a medical app for it, I probably have it. The only way I can prove to my doctors that I am actually doing what they tell me or that I’m not fabricating my weird quirks is by documenting everything. So everything I eat and drink is recorded along with physio, blood pressure, blood sugar, temperature, how often I need to go to the toilet, sleep, changes to my meds… everything I do is recorded because no one knows what’s relevant and what’s not until they see it. It’s time consuming and annoying and depressing all at the same time. And it makes you obsessive.

3. Doing a lot of maths. Grams per carb per serving, timing blood sugar readings, working out my steroid doses daily, making sure I have enough meds so I don’t run out, organising said meds.

4. Constant monitoring or reflecting to make sure the maths stays right. You can work out your steroid taper plan at the start of the week but have something happen which scuppers it and have to do it alllll again. And stabbing your finger multiple times a day to check your sugar level is never fun.

5. Going to appointments. I see my chiropractor staff more than I see my mum. Hours waiting in hospital waiting rooms, travelling to appointments, mostly to be told ‘nope we still don’t get it, do this test then come back’.

6. Having to chase people. The NHS computer officially hates me. Something to do with when I changed my name after getting married (3 years ago) means that it tells people I’ve been referred for an appointment but it never actually completes the referral. But everyone thinks it has. And then it refuses to let itself be overridden! Aside from that, I spend a lot of time talking to people and being the point of liaison between departments.

7. Having to argue with people. This is a particularly horrible one. I spend a lot of time arguing with people to get my correct treatment. I’m not wanting anything extra to the protocol, the problem is some people are unwilling to acknowledge they don’t know the protocol so refuse outright. There have been a few times where I’ve thought ‘why the hell am I arguing for a prescription which keeps me alive when no one here seems to care if I live or die? Maybe I should just give in’. That’s a particularly dark place to be in and takes a lot of coming back from.

8. Monotony. It’s so boring living with the same routine. But it’s hard being spontaneous when you have naps, meals and tablet schedules.

9. Restrictions. I’m not allowed to drive, I can’t walk far at all, I can’t really go out by myself because of those reasons and I can’t stay by myself for long periods of time. As well as the physical things I can’t do but I can’t be bothered writing. I’m proud of myself when I make myself a cup of tea!

10. Fear of missing out. Everyone has this to an extent, but when you physically can’t do things or have to live so rigidly you spend a lot of time thinking about things which might have been were you not sick.

11. Always having to be prepared. Might seem like fun when you’re in the scouts, but being prepared for any medical emergency is a giant pain. It’s not wallet, phone, keys when I leave the house, it’s emergency injection, phone, pill bag and testing kit. And many snacks.

12. Having to field unwanted advice. People are trying to help. It’s with good intentions. But it’s never nice feeling like someone thinks you’re not ‘trying hard enough’ if they catch you on a burnout day.

13. Having to constantly think about it. I don’t actually want to think about it all the time, but there’s a lot of ‘if I do that will X happen’ or ‘is it nearly tablet time’ thoughts. Pretty much every few minutes because that’s how often my symptoms all shift around.

I haven’t actually come up with a solution for feeling burnt out about illness, except you have no choice and have to get on with it and hope that things will get a bit easier at some point. Self care is important, but sometimes you’re too worn out even for that! People bring new parents food and useful presents- maybe there’s a chronic illness version of those?! 😉


Keep Calm & Carry on makes invisible illness hard

British people are known for their stiff upper lip, keep calm and carry on and ‘man up’ mentality. If we all pretend something isn’t happening, it’s not really happening. We must maintain our lives the same as they’ve always been, at all costs.

This attitude is the foundation of a lot of problems surrounding invisible illnesses. When you get diagnosed with one, you kind of go through a few stages:

  • It won’t change my life. I’ll carry on as normal
  • This is actually bloody hard, maintaining the illusion of normalcy
  • Ok. I need to make some changes to the way I live. But I’m not asking anyone for help
  • People keep criticising the way I do things. I think they think I’m lying
  • I do actually need help with this. But I’ll only ask people close to me because I feel bad
  • It’s frustrating having to justify myself all the time; The criticising people step up the critique the more you ask for help.
  • I’m not going to justify myself anymore. Criticise me all you like. I need to do this to cope.

Part of it is the disabled person wants to keep things as normal as possible at first, so they try to keep it an invisible illness. But that’s why I think the keep calm and carry on attitude is so damaging- it pushes you into a state of denial from the word go and makes you feel like you have to get on with it. But it also makes it difficult for everyone else to empathise with you because they never really see what an invisible illness looks like for them to consider it normal because we’ve been conditioned to hide it.

It boils down to people still thinking that illness is a weakness. From the second we leave the womb, our bodies start to fail us. We get bugs, have injuries and we start a process that ultimately ends up in death. Whether it be 2 hours from birth or 200 years. So why is illness a weakness when everyone ends up the same anyway?

I’m really bad for admitting when I need help, letting people see the bad side of it and expressing when I feel ill. But I mostly feel like that because when I’ve tried to ask for help or say what I feel like in the past, even for non illness related things, people have told me to get on with it and toughen up.

So we can bang on about people not being judgemental about invisible illnesses or accusing us of being liars or exaggerating our illness because they’re invisible, but really it’s a wider problem. It’s ok to show weakness and ask for help. If you’re not listened to or not believed, the problem isn’t with you, it lies with whoever conditioned that person to believe that the only way to live was to keep calm and be in complete denial as to what’s going on in life.

No one has the perfect life. What does it look like anyway? If someone tells me to keep calm/calm down when I’m having one of my hormonal endocrine meltdowns, I tend to reply with ‘this is positively calm- if I wasn’t, you’d have been punched in the face by now!’ 😉 illness happens to everyone. Instead of tearing each other down and looking for holes in the person’s story about their illness, we should be supportive.

***Although, disclaimer, I also really hate it when people do over exaggerate their illness or milk it for all it’s worth because it makes it so much harder for the rest of us when we get tarred with the same brush!***

It’s never ‘just a cold’

I hate cough and cold and stomach bug season. I’m particularly scared of stomach bugs and flu, because those would 99% likely earn me a trip to intensive care. However, I’m also practical enough to recognise that if I’m going to get sick, I’m going to get sick. I can wash my hands and take precautions like having my flu jab, but people get sick. It’s life.

Except having adrenal insufficiency makes it complicated. It’s never ‘just’ a cold. Most people can carry on with life with a little bit more rest and fluids. A cold can wipe me out for weeks. Here’s why ‘normal’ illness is tricky for people with AI:

1. There’s a pre-illness phase. Most people can say ‘I feel like I’m coming down with something’ but I get a ‘I feel like I feel like I’m coming down with something’ phase. So before I even have anything that remotely resembles any kind of illness, I’ll have a ‘feeling’ which is a kind of pull behind the eyes, more lethargy (if that’s even possible) and my tolerance for things goes down to basically nothing e.g. Standing for a few seconds or walking for a few metres feels like an endurance test and then I need a 4 hour nap to recover. Trouble is, it’s only really obvious after you’ve got sick what was going on. Before it could have been any number of things making you feel like that!

2. Steroids mask symptoms. So I might not get a temperature but still have an infection. In fact, my temp goes down to 35.8/35.9 right before I get sick and then shoots up fast.

3. We tend to have issues with our immune systems. Steroids mess with it but lots of PAI patients have immune disorders. It means we catch a lot of bugs basically. And then our depleted cortisol reserve means that a cold can quite easily become a chest infection.

4. We have to apply sick day rules which means doubling or tripling our steroid dose. However that involves maths and rational thinking, which is difficult to do at the best of times let alone when you’re feeling ill! And also remembering what you’ve taken and why gets tricky especially if adding in nighttime doses. Vomiting or upset stomach becomes a bit of a drama because that’s when you have to think about injections and hospitals. You spend a lot of time foggily thinking ‘do I feel crap because I’m sick and a normal person would feel like this or do I feel crap because I’m heading to crisis?’

5. There’s such a thing as ‘too ill to sleep’. Sleep is what you need when you’re sick. However, when you’re sick your body is supposed to make lots of cortisol fast to help fight illness. Replacing cortisol is a lot of guesswork and the body makes adrenaline to compensate when it senses it’s lacking cortisol. This then makes it hard to sleep- basically your body thinks it might die so it won’t let you sleep. Which makes you burn through cortisol quicker. Then it can quite quickly flip to not having enough cortisol to keep you alive and you can suddenly find yourself unable to wake up. This is more likely to happen overnight than any other time.

6. You have to keep eating and drinking. Lots of people don’t want to eat when they’re ill. We don’t really have that choice because if we don’t eat and don’t have enough cortisol, we could have a hypo (drop in blood sugar) and end up in a big mess. Not eating and drinking= trip to hospital.

7. We can’t necessarily take over the counter medicines. Chances are, if you have AI, you probably also have other medical conditions. I personally can’t take decongestant (which is in things like night nurse and lemsip), anything with paracetamol based products in, and cough sweets or syrup unless they’re sugar free (but they have laxatives in- fun!).

8. It takes ages to recover. Even if you didn’t end up stress dosing, it knocks you sideways and your body is playing catchup. Even something simple as a slight cold can take a while to get over. And if you did stress dose, it takes longer because you have to get back down to baseline. If you try to get to baseline too quickly, the bug can come back. But the longer you’re on a higher dose, the harder is to get back to baseline. Tricky.

So the safest thing to do in winter is to hibernate.

But that’s not living. So here’s what I do to look after myself:

  • Wash my hands regularly.
  • Avoid close physical contact with people
  • Have my flu jab
  • Learn what my ‘feeling before a feeling’ symptoms are and pay attention to them
  • Not get steroid guilt about stress dosing and stress dose earlier rather than later
  • Wear a scarf that I can pull over my mouth and nose when I’m in busy crowded places. Ironically that includes the hospital!
  • Avoid people who are sick. I don’t mean a slight cold because I can pick that up anywhere. But if it’s making you feel terrible it will make me seriously ill. And any kind of sickness is a definite ‘stay away’!
  • Avoid people who have had a live vaccine (that I haven’t been vaccinated against). The flu vaccine that kids get is a live vaccine so if I hadn’t already had my flu jab, I’d have to stay clear for a while. Likewise for things like shingles vaccine. Normal vaccines are fine though.

Waiting to do tests

Waiting to do tests or procedures is annoying enough when you’ve got a fixed date or are on a waiting list. Waiting to do tests when your body has to be cooperating is even more annoying.

I have to do something called a day curve test, which is where blood is taken at fixed times of day to see what my cortisol level is doing while I’m taking my hydrocortisone. This will help determine my baseline dosage, although it’s only a snapshot of what’s happening at a specific time on that day, so it’s only one of the factors which help decide this (i.e. Sitting around in a hospital all day uses less cortisol than having to to walk around). I also need to repeat my ACTH test because the last one wasn’t sent to the lab in time, which has to be done without any hydrocortisone in my system. So I can’t do both tests on the same day. Both have to be done at a hospital in a different county to me, so I’ll need someone to be able to take me (causing logistical problems) and I’ll need a babysitter before and after the ACTH one because I won’t have taken my HC. More logistics. Thankfully, I don’t have to book the tests, I can turn up to the department on the day and they’ll sort me out, so one less thing to worry about!

So besides all the planing involved, I have to be on my baseline to do the tests. Which I’m currently not. It’s a cumulation of things, mostly starting with a hospital trip in July, followed by my Grandma dying, a bit of some kind of illness- all of which required stress dosing- and then my body having a particularly rough time tapering from the stress dose.

Why is it so hard tapering this time? Because I was on a stress dose for a long time is the easy answer. The longer the higher dose, the harder it is to come back down. Secondly, I haven’t had a death since I got diagnosed so I was making it up and massively underestimated how much you need to stress dose for subconscious emotional stress, which put too much pressure on my system. Thirdly, I know I need to do these tests. Nothing is going to happen until I do. So I’m stressed about getting to my baseline which ironically means it’s taking me longer to taper because I need the extra HC to counteract the stress. Stupid, right? I tried to bully myself into getting to my baseline by doing a rapid taper and it ended up with me having an internal debate as to whether I should be injecting and calling an ambulance and trying not to pass out. Not the best idea I’ve had.

Consciously, I try to put it to one side and not get wound up about it because it won’t help (easier said than done). But I can’t help what my subconscious does when I’m asleep, and that’s what seems to be causing me a lot of problems right now- nightmares about tests/hospitals/Adrenal crises…

So yes. Waiting for tests is annoying. And I could really do with some stress free, illness free and just general injury/drama/surprise free weeks so that I can get them done safely! Fingers crossed!

Red Flag

Every year in this week of September I have to renew my Red Flag with the ambulance service. I don’t actually remember it, my phone just reminded me to do it- very useful that I must have set up an annual alert when I first did it!

A Red Flag is important for patients with Adrenal Insufficiency for a few reasons:

  • When you ring 999, it puts you automatically on a red 2 call out if you’re conscious and a red 1 call out if you’re unconscious. These are the fastest call outs for an ambulance and means the ambulance gets dispatched from the second the flag is picked up by the call handler.
  • Not every ambulance service has hydrocortisone or solu-cortef on board. It depends on the trust. Likewise, not every ambulance crew is able to administer it, again depending on the trust. The red flag means you’re sent an ambulance with the capacity to be able to treat you e.g. Paramedic crew rather than technician
  • It gives the crew attending to you some information about you and your condition before they arrive. This is extra to the stuff that dispatch usually give to them. That means they can come up with a treatment plan en route or look things up if they’re unaware of the condition. It also apparently beeps at them constantly every 30 seconds until they get to you to make sure they’ve read it!
  • You’re more likely to be taken to the nearest trauma or major hospital (if available or appropriate) rather than a local one even if it’s closer. This is a good thing if you need to be in ressus or with a specialist team. The crew decide though- obviously their priority is to get you to hospital quickly for your benefit and so they can get back on the road and help other people.

It’s pretty easy to set up a Red Flag. In my trust, I email them every year and give them:

  • My name, address and DOB
  • The name of my condition and the steroid I take for it (hydrocortisone)
  • My GP name and address
  • The address(es) I want to be flagged. You should only have a couple- so I have my home address and I used to have my work address on there.
  • An emergency contact/next of kin

Then someone will email me back from the ambulance service to confirm it and it’s done! I had to ring up to find out the address in the first place, but I just googled my ambulance trust and rang the number there.

There have been a couple of times where the red flag hasn’t worked, but most of the time it works really well. To make doubly sure, I usually ask the dispatch if they’ve found my flag when I’m ringing for an ambulance.

I’ve been doing my research…

I did what every patient isn’t supposed to do and I consulted Dr Google. Which I think is fine if you have something like a headache which suddenly becomes a brain tumour from just a few clicks, but as a rare disease patient, I probably would have died by now had I not gone on Google and tried to piece things together. For example, here is where my research paid off where some of my doctors were wrong and I had to work hard to persuade them:

  • My blood pressure can go up not down in adrenal crisis
  • I put on more weight when my steroid dose is too low rather than when it’s too high
  • If my steroid dose isn’t adequate, I can’t sleep, not because it’s too high
  • Sometimes I need extra HC at night
  • My body compensates for a lack of cortisol by giving me adrenaline rushes. Which cause huge problems.
  • My body gives me an asthma attack as one of the pre-cursors to adrenal crisis. Treat the AI first and the asthma attack stops…

There are a few more examples but you get the idea. Something I’ve been banging on for ages about is my ‘I need to eat’ feeling and everyone’s been a bit stumped.

Basically, I feel terrible eg sweating, shaking, feeling sick, fatigued, dizzy, out of it, headache, stomach ache, but my blood sugar is ‘fine’. But if I eat, I feel better. So then I got told to check my blood sugar and keep a diary, which is when I noticed that my blood sugar starts to go up when I feel ill and then goes back down again as soon as I eat.

Which is not supposed to happen and I got told that by every doctor I told it to. What’s supposed to happen is you eat, your blood sugar rises, insulin kicks in and brings it back down to normal about 90 minutes after. They said I wasn’t recording it right, that I didn’t measure it properly, basically anything to do with me getting it wrong.

I did a few experiments. The more I ate, the faster it came down. Sometimes it wouldn’t go up at all after eating which is very odd. Then last month my new endo diagnosed me with reactive hypoglycaemia. Which means my body over produces insulin when I eat certain things and it makes my blood sugar drop fast. Aha! Progress! I knew I was right…

That didn’t explain the whole ‘why does my blood sugar go up when I don’t feel well’ thing. It’s never dangerously high, we’re talking about anything over 6.2 and I start to feel horrible, which is normal range, so medically, no one really cared about it until recently. But I feel terrible, and I feel awful most of the time anyway, so getting rid of the 10+ episodes of whatever it is every week would be nice.

So I went on google, and painstakingly did some research. I haven’t actually run this past my endo yet so I could be completely wrong, but since I started thinking about it this way, it’s got a tad easier to predict. Which is definitely a win!

Also bear in mind that I found the colouring in diagrams aspect of biology much more interesting than the actual science behind it when I was at school. Obviously regretting that decision now, even if I did have pretty notes.

  1. When your fight or flight system kicks in, your body releases a bunch of hormones so you can run away from the bear chasing you. I don’t make cortisol and my insulin production is messed up but I do still make other adrenal hormones like adrenaline.
  2. These hormones make your liver (I think?) dump a whole load of glucose in your blood from stores which makes your blood sugar rise. To the average human, this would only happen in a stressful situation, but because I’m currently not stable, standing up waiting for the kettle to boil is a ‘stressful’ situation for me on some days. So my blood sugar rises but not for any obvious reason.
  3. Once you’ve got yourself out of danger, your body releases insulin to bring your blood sugar down to a normal level. Except I don’t make cortisol, which is one of the hormones which encourages this to happen. And I’m also insulin resistant and reactive hypoglycaemic and everything is totally confused by now in my body. So I think my insulin doesn’t get triggered or is triggered too late.
  4. Which means my body has a kind of ‘going into shock’ moment and I feel terrible. But if I eat something, it goes ‘foooooood, we know what to do now, we need to make some insulin!’ And that’s when my blood sugar starts to come down. And the reactive hypoglycaemia bit means it comes down fairly sharpish.

I’ve also noticed that when I’m eating a lot and it’s not making me feel better, if I take more hydrocortisone, I’m suddenly not hungry anymore and I don’t feel as terrible. So clearly there is a link there too. Plus a lot of these episodes are at night when I don’t take HC and my cortisol is at its lowest.

I reckon, if my science is accurate, I could be onto something here. Problem is, I’m told to avoid eating carbs and taking updoses of HC where possible. So someone needs to decide what they’d like me to do when I have these episodes because I’ve been told off for both in the past. At the moment I’m making it up and doing what I need to avoid hospital, but that’s clearly not a long term solution!

If anyone has any thoughts, different science or experience I’d be interested to hear too! 🙂

Mental Health & Chronic Illness

I broke up with my psychiatrist last week. Or rather, we decided her sessions weren’t benefiting either of us so we stopped them. However, I don’t feel like I got the help I need or anything remotely useful as to how to cope or manage my mental health in relation to having a chronic illness. I’ve got a long-term, debilitating, life-threatening, life-limiting condition, which is tricky to manage and has meant that I’ve lost an awful lot of my life, but I haven’t had an iota of support in coming to terms with it or learning how to cope with it from the NHS in terms of my mental health. But I’m definitely not the only one who has a chronic illness where mental health directly impacts on physical health (and vice versa) so why is there such a gaping hole in support in this area?

In my case, I was sent to the psychiatrist for 2 reasons:

1. I’m depressed because of what’s going on health wise (situational), and because I take steroids. Regardless of why I’m depressed, I’m still depressed and need help, especially because depression causes low cortisol and low cortisol causes depression, and you get stuck in a loop.

2. My hormones and chemicals don’t function properly. There are 2 bits to the human stress response: the conscious one where you can control how involved you get emotionally with something (like in point 1), and the unconscious bit which you can’t help because your body responds automatically to it. Neither works for me, which makes me ill when it gets triggered. My endo wanted the psychiatrist to assess and treat both responses, but prescribe medication to help with the unconscious part so that it affects my physical health less.

Except I didn’t get support for either. I do things to help myself every day, but only because I did some research and asked friends what helped them. I pay for private counselling because the NHS won’t provide me with a trained mental health therapist (the ones I’ve seen in the past are untrained and follow a tick box questionnaire) and they definitely won’t allocate one who understands endocrine disorders, whereas the one I found does.

The psychiatrist said to expect good days and bad days with my mental health (agreed) and that until my physical health improves, my depression won’t improve. But my physical health won’t necessarily improve, to which she said I just had to get on with it, basically. In other words, I’m not really her problem because my physical health is what’s driving my symptoms, despite the fact that those mental symptoms are negatively impacting on my physical health. How do I fix that?

She said I should be doing CBT, which I am. However, CBT only helps if your thoughts or interpretations of something are creating problems because you’re mistaking emotions for facts, or catastrophisising or trying to second guess people, for example. Except, as I pointed out, I’m not having an irrational emotional response which I’m mistaking for fact if I get upset because doctors tell me to my face that they think I’m lying (and then get proved wrong and apologise, but the damage is already done). Or I’m not catastrophisising if when I go to hospital I have to argue with people because their lack of action due to inexperience of AI has the potential to kill me and almost has done a couple of times. And I’m not second guessing doctors if everything I worry about or predict might happen actually does happen. Or the fact that I have to contemplate death and know that I wouldn’t survive things other people my age would on a regular basis. Yeah, sometimes I do blow things out of proportion and CBT does help, but what about the stuff directly linked to my illness like I’ve just mentioned? What do I do about the pretty regular, traumatic or negative encounters I have which make me depressed? And I can’t control my involuntary response to those things either, so I’m fighting on two fronts.

But I’m clearly not the only person who will have these experiences or problems. And, even if I didn’t have a rare disorder and had something more ‘common’ but still debilitating, mental health support doesn’t seem to exist to help you come to terms with your illness. In balance, I actually deal with my illness and its restrictions quite well- I’m not a bitter, angry person because of it, but only because I’ve worked hard on my mental health myself. Not everyone will be in a position to be able to do that and we shouldn’t have to be really.

Someone should be trying to help us because it’s bad enough being sick never mind feeling like you’re isolated and exhausted from it to deal with the mental side. Irritatingly, as soon as I said my Grandma had died, she suddenly sprung to life and offered me bereavement counselling, which I don’t feel I need because those emotions were far easier to process.

I think there’s a massive problem here which needs addressing. But then mental health treatment in general on the NHS is patchy and inconsistent I’ve heard from other people. I’m definitely not going to get any help by not seeing my psychiatrist again, but actually, my mental health improved slightly after I made that decision because I could stop being anxious about the appointments and the fact that she clearly doesn’t understand AI at all and kept coming out with unhelpful comments. For now I guess I’ll keep plodding along then!

Food & Diet

Most people don’t really think about what their bodies need and how they fuel it. Like, people go on diets and say they’re ‘clean’ eating, but it’s not very often that people actually look at their body’s needs, tailor a diet plan to suit them and watch how their body responds to it. It’s usually something that’s been found online or in a book that fits ‘the masses’ and mostly (but not always) for aesthetic or weight loss reasons rather than overall health. In our culture, thin=healthy. But that’s not always the case.

I’ve been having issues with feeling well and diet for a long time. The only way I could vaguely feel like I wasn’t going to pass out or faint for a long time was by eating a lot of sugar and carbs. There’s a cortisol-linked reason behind this, which I’ll go into in another post, but I’ve learnt recently that this is also partly because I’ve got reactive hypoglycaemia. So basically, I’d eat a lot of carbs and feel better temporarily, but the carbs made my blood sugar drop too fast and I’d feel like I was going to faint again. Which meant I’d have to eat again to make my blood sugar go back up and the cycle continues- it’s like being on a roller coaster with the highs and the lows. I became a bit like the plant in Little Shop of Horrors- the more I ate carbs, the more I had to eat them to keep me feeling ‘stable’.

I’ve been to see many dieticians and they were a bit stumped. But with an actual diagnosis now and the advice of eat 5/6 small meals a day rather than 3 big ones from my endo, I’ve been doing some experiments, reading and learning. I’m essentially eating the same or less than I was before, but more routinely and regularly. Here’s what I’ve learnt so far:

Eat like a sheep- little and often

Those were my endo’s exact words. Now I eat a meal of some description every 2-3 hours, regardless of whether I’m hungry or not. Mentally, it’s a lot easier to deal with because I’m not as hungry all the time, but there are times when I definitely feel I have a bit more energy than before. (Although I’m stress dosing currently so not a completely valid test for the scientists amongst you).

Eat low carb/low GI

I’ve been eating low carb high fat anyway, but the key is eating even fewer carbs at each meal but more often. That’s not zero carbs, I still need to eat carbs, but I *think* I feel relatively steady on between 10-25g carb per meal depending on the time of day. It’s a massive case of trial and error though.

Some foods trigger when they ‘shouldn’t’

Some foods make me feel terrible, I’ve discovered, even if they’re low carb or low GI. Raspberries should be fine but seemingly aren’t. Likewise with sweet potato and dark chocolate. Pretty much any of the foods I really enjoy, which is pretty frustrating! So it’s a case of working out which foods cause problems even though they’re on the ‘ok to eat’ list. You’ll be relieved to know that small amounts of Nutella seems to be fine (thank god!), possibly because it’s probably part of my blood stream by now 😉

It depends on the time of day

I was eating a portion of porridge recommended by a dietician but with a bit of experimenting I realised that actually it was eating that amount of porridge which was messing me up by lunchtime with the rollercoaster feeling. I halved the amount and I stopped feeling quite so all over the place. However, I seem better if I eat slightly more carb in my evening meal.

You have to think about food combinations

This is where it gets hard and maths-y. Each meal needs to have carb, protein and healthy fats. So that sometimes means I end up eating a hunk of cheese if I can’t find anything else to go with a salad. Cheese and peanut butter seem to fix a lot of problems, especially if I’m not feeling well and need something fast. Although not at the same time, that’s just gross!

But you also have to think about *where* the carbs come from

More maths. Carbs coming just from vegetables makes me feel shocking most of the day, except for at lunchtime, where I worked out that carbs coming from obvious carb like sources e.g. Bread or oatcakes makes me feel terrible. At 10.30 and 14.30 meal I eat oatcakes with protein and fats and at lunchtime I eat only vegetable soup and salad at the moment.

You can’t cut the calories

If you’re cutting carbs, you can’t cut calories as well, otherwise you don’t get enough energy. Problem is, we’re in a culture where people think fewer calories means better for you. Actually, lots of low fat or low sugar things have more carbs in them than the full fat versions. It just makes eating out or from packets hard work sometimes.

Eating in the middle of the night is ok

I used to try to convince my body I didn’t need to eat and try to tough it out because that’s what the dieticians said. But having done some research, all that happens if I avoid eating overnight is that when I do eat my porridge first thing, my body peaks and drops blood sugar a lot quicker, which then causes me problems for the rest of the day. I tend to eat things with 0 or traces of carbs overnight, which has been working so far.

Cortisol and blood sugar are linked

I’ll go into this more in another post, but just to add to the difficulties, sometimes my blood sugar is off because of what my cortisol is doing. But I can’t check cortisol in the same way I can check blood sugar, so it’s another thing to guess at and experiment with.

I’m still learning, and I think I’ll be learning for a while. It also takes a lot of planning and organisation to get right, which is actually pretty complicated, especially if I’m not at home. So I’ve got alarms going off all over the place! I’ve got a testing metre so I can check my blood sugar which has been helpful and means I can vaguely work out what I should be eating or what isn’t a good idea to eat. I’m trying to get used to the way my body feels with it though- numbers and measurements are good indicators, but aren’t the be all and end all. I’d rather learn my body’s instincts if I can. And sometimes I’ll eat cake and put up with the feeling crap afterwards because sometimes you have to eat cake!

Photo: google image

Synacthen Test Results

A couple of weeks ago, I had to repeat my Synacthen test. You can read about they whys and wherefores in my previous post about it, here. This is the third time I’ve done this test, and, this time, I was hoping for some definitive answers about whether or not I’ve got Primary or Secondary Adrenal Insufficiency, or both. The other times I took the test, they didn’t collect an ACTH sample, which is one of the ways you can rule in Secondary Adrenal Insufficiency, despite me asking them to last time. This time my endo and I both agreed that it was important to get this result.

However, I’m a tad grumpy because my bloods weren’t processed within the 30 minute window for ACTH testing, meaning they couldn’t get a result. So we still don’t know! And I might have to potentially take part of the test again, which I’m not happy about, because you have to stop steroid medications, which is horrible.

Not all of the test was pointless though. We did get my cortisol results back. My baseline result was ‘less than 10 nmol/l’ and my 30 minute response after ACTH injection was 63 nmol/l. For reference, a ‘normal’ person’s levels should have been 500 ish at baseline and increased further by 30 minutes. I’ve told many doctors many times that I might ‘look ok and sound ok, I’m just good at compensating’ and this test kind of proves it. On the day of the test, I was able to walk the short distance into the hospital and sound coherent in conversations, but with a level that low, both before and after the test, I wasn’t far off being critically ill or dying from very little shock or over exertion. Maybe I should give myself more credit that I am still able to even vaguely function, be nice to people and not be a hormonal wreck all the time even though my bloods came back like that!

The results were sent in the post to me and my GP within 48 hours of the test along with very specific instructions, which kind of also highlights the seriousness of having low cortisol. I already knew the instructions anyway, and nothing changes medication wise for me because I’m already on replacements, but it did come with a very helpful, idiot-proof letter from the professor in endocrinology managing my care. It clearly says that I have Adrenal Insufficiency and not Adrenal Suppression (where the adrenal gland might be suppressed and stand a chance at recovery) and that no one is allowed to decrease my steroid dose. Hooray! I’ve been having arguments with various people about these two points for about a year, so it felt good to have it in writing.

Even better, it very clearly states that IM or IV therapy might be required ‘to prevent risk of adrenal crisis’. This might not seem like a big thing, but sometimes I end up in hospital arguing with medics who are refusing to give me my IV, that while I might not be in full blown adrenal crisis because I’m quite clearly talking and not unconscious in a coma, could we give me the IV while I have hypoadrenal symptoms so that I don’t have to get to coma stage before they give me it. This letter might help with that. And, the icing on the cake, it says ‘the lowest dose the patient feels well on is the safest dose’, in big letters and bold. Which means the this department seems to actually care about what its patients actually *feel* like and not just being on the standard 10/5/5 dose.

So my annoyance at the ACTH test being messed up kind of got neutralised a bit by the really helpful stuff that also came in the envelope. Fingers crossed I don’t have to do the test again though!

Insulin Resistance & Reactive Hypoglycaemia

I saw a different endo last week, which was mostly preparation for the synacthen test I had this week. However, we did talk about the hypos (low blood sugar episodes) I've been having, and I got diagnosed with something else; reactive hypoglycaemia.

A hypo isn't pleasant. When I have them, I feel shaky, sweaty, confused, have poor concentration, dizzy, and have a headache. Too low a blood sugar is dangerous, so needs to be treated so you don't become acutely ill.

The consultant actually diagnosed me with an 'abnormal phase 1 lag release' (whatever that is!). But that's a bit of a mouthful! I already have insulin resistance, which means my body needs a bit of persuading to make insulin, and then when it does it floods my system with it. But having reactive hypoglycaemia means that my blood sugar level gets pushed down by the excess insulin and I have a hypo, or something that feels like a hypo because my body doesn't know if it's coming or going.

Still following? If so, well done! It was at this stage of the explanation that I really wished I'd paid more attention in biology at school. Reactive hypoglycaemia also means that when I eat, my blood sugar goes up a tiny bit and then down a lot, rather than up a lot (ish) and down a bit like most people's do. I've been telling doctors this for about 18 months and they've all been telling me 'that's not right' or 'you're reading it wrong' but the professor in endocrinology I saw last week didn't flinch when I said it and knew exactly what was going on, so it can't be that weird!

This actually explains my 'I need to eat' feeling I get and why I need to eat seemingly constantly, even overnight. I eat something, insulin isn't used the way it's meant to, my blood sugar goes down and I feel hypo-ish so I need to eat to get my blood sugar to go up a bit and the cycle starts again. So really, when I feel hypo, it's because of what I've eaten a few hours ago because my body has a lag or delay. Which is a tad hard to predict!

Just to complicate things further, hypos are also really bad for Adrenal insufficiency, and hypo is one of the onset of crisis symptoms. It's been pretty entertaining trying to guess whether I need sugar, carbs or more hydrocortisone during these episodes!

My consultant's exact words were 'think and eat like a sheep- graze little and often'. Which made me laugh- a consultant with a sense of humour! Rather than 3 meals a day, I should be eating more like 6 or 7 smaller meals, made up of low or complex carbs (low GI). I've essentially been eating the right foods but the dieticians and my other endo told me to aim for 3 meals a day. So I did and it was hard. I'm hoping this might work better and I won't feel so much like I'm on a rollercoaster blood sugar wise.

I never have high blood sugar, my over producing insulin (albeit with a lag) takes care of that. I need to do some more reading about it and, from what my consultant said, it's not easy to work out and will be a lot of trial and error. But it feels like some progress after I've been hitting brick walls for almost 3 years with this.