Foods I Don’t Eat Anymore

I’ve been following low carb high fat (LCHF) for over a year, which basically means cutting out most or all carbs, and replacing it with moderate protein and high amounts of healthy fats. This is a lifestyle that is approved of by lots of health professionals, including diabetes related organisations. I’ve written posts about the science and maths in the past, but the thing I want to talk about in this post is what it actually means to follow this lifestyle.

I’m calling it a lifestyle rather than a diet because I’m eating to keep as well as I can, not for some kind of ‘ end goal’. Ie I don’t do it for a few months and then go back to old eating habits and I tend not to have ‘cheat days’ like people on diets for losing weight tend to.

One comment I get a lot is ‘at least you’re not pregnant/have cancer. They have way more foods they can’t eat.’ Pregnancy is an easy reply- it’s 9 months. If you can’t manage to sacrifice booze and cups of coffee for 9 months, you’re not ready to be a parent, clearly. As for cancer, it’s usually people trying to be upbeat and ‘positive’, but it’s actually more annoying than anything else. Lots of people have diets and lifestyles they follow to keep them healthy or to try to anyway- there are lots of different types. Some of the things on my list are because they don’t fit in with LCHF, some are because they make me react with my reactive hypoglycaemia so it’s best to avoid them. So here are the things I don’t eat anymore:Cake


Pasta and noodles



All Fruit

Fruit juices


Pastries like croissants

Pudding in general

Waffles, pancakes

Ice cream/frozen yoghurt/custard

Potatoes and sweet potatoes

Chips and sweet potato chips


Some sauces which use flour or sugar eg ready made sauces you can buy in supermarkets

Most Chinese food

Most takeaways except things like Indian meat and kebab meat

Crisps except when I’m nearing crisis

Chocolate except dark chocolate with minimum 85% cocoa solids

Battered things eg battered fish, chicken nuggets, chicken Kiev

Drinks with sugar in, even natural sugars

Most diet drinks except from Coke Zero now when I’m having stomach issues

Hot chocolate, milkshakes, Frappuccinos

Tortilla wraps

Beans except ones which are green

Fast food

Some types of soup – some have a lot of carb in


Crackers and thin breads

Sugars and sweeteners

Semi skimmed milk

Jams and jellies

Honey and syrups



Some condiments which are packed with sugar eg bbq sauce

Salad dressings which have a lot of sugar in

Cereal and granola

Yogurt except for natural and Greek yoghurt


Quiche and pasties or anything with pastry

Things with lots of preservatives also tend to have a lot of carbs in them. So things which have a long shelf life tend to be out for me

Couscous and quinoa except in small quantities

Pulses and grains except in v small quantities

Sometimes, I go for a best case scenario, like if I’m eating out. Salads, meat and dairy are good, but sometimes options are limited so I go with foods which have the lowest carbs but aren’t necessarily as low carb as I would like.

Now if you see me eating one of the things on my list, I don’t need chastising. There might be a reason for it: I could be treating a hypo. I might be doing a test to see if my body can tolerate reintroducing certain foods. I might just have thought ‘sod it I really want to eat cake’. All of those are legitimate reasons! The good thing is, I’ve been doing it consistently for so long now that I don’t really want to eat a big slice of cake because I would basically have a hangover from the carbs. So it’s not actually worth enjoying a slice of cake for 5 minutes a lot of the time!

There are some foods I love which I can eat plenty of on LCHF:


Deli meat


Things with cream cheese



I’ve discovered a new love for fish and seafood

Meat in general

Bacon… lots and lots of bacon

All day breakfasts (minus the bread)

Mixed grills

Raclette and fondue are amazing meals for me!

Cauliflower ‘mac’ and cheese is one of my favourite meals

As is butternut squash, mozzarella and bacon bake (as close to cheesy chips as you can get!)

You just have to be a bit inventive and imaginative with the way you eat things. Overall I’m finding the pros of this lifestyle outweigh the cons in terms of how I feel and manage blood sugar. Having said that, low carb puddings are not up to much!


Cautiously Optimistic: Switching from Hydrocortisone to Dexamethasone

Or, in layman’s terms, ‘my endo took me off one type of steroid and put me on a different one’.

This actually happened at the start of January, but I wanted to give it a bit of time before I wrote a blog post about it because:

a) there’s always a honeymoon period with any new drug

b) it would have just been a stream of consciousness of my random opinions at that point in time and not necessarily of any use to anyone else

c) cortisol is a hormone, and HC/Dex replace that hormone. Hormones work best in cycles, particularly in women. So you can’t actually tell if something is consistent until at least 6 weeks have passed.

My ‘old’ steroid for Adrenal Insufficiency was Hydrocortisone, which I took 3 to 4 times a day. My new one is Dexamethasone, which I take once a day. Both are part of the glucocorticoid steroid family, but they’re slightly different. In a nut shell:

  • Hydrocortisone mimics the body’s natural circadian rhythm and lasts about 4-6 hours. Dex lasts up to 36 hours.
  • Hydrocortisone starts to work after about 20 minutes. Dex is much slower (I actually have no idea how long it takes, more on that later)
  • Dex is long acting, HC is short acting
  • Dex is a synthetic version of cortisol so doesn’t shift around the body the same way HC does.
  • You can’t really updose on dex, because it takes so long to work. So I still have to take HC for updosing. You can stress dose on dex though. But that’s another blog post. Shout out to my friend and her endo colleague for helping me do the conversions so that I can tell paramedics what dex equals in oral and IV HC terms if I ring them.
  • Dex is more ‘potent’ so if you do conversions, you can take less total during the day than you can on HC.

Anyway, to start off with, me and dex were not friends. I went from taking HC on a Thursday to starting Dex on a Friday. But dex takes longer to start working, so effectively my body thought I was missing my morning HC dose and did not like it at all. I felt sick, dizzy. shaky, moody, had stomach ache…  however, by 5pm something weird happened. I’d decided that if I was going to be miserable while I was withdrawing from HC and getting used to dex, I was going to do so with some new yarn and crochet projects. So I persuaded my husband to take me to hobby craft on the way back from a medical appointment to purchase said yarn. Usually we park in the disabled space outside, I choose what I want and then sit in the car while he pays because I can’t manage standing up in queues. However, that day I thought ‘I feel pretty spritely in comparison to earlier’ and decided to queue because it wasn’t that long. And then I remember thinking ‘I can’t usually do this at 5pm!’ because I usually spend an hour before my HC doses feeling like I’m going to pass out and needing to lie down.

Pro number 1 to dex- I don’t have the peaks and troughs so much during the day in terms of energy. I don’t have random crashes and I don’t feel really, really terrible in the hour before I used to take my HC dose. It does mean I have no concept of time anymore though because I used to be able to tell what time it was depending on how crappy I was feeling.

Which brings me to con number 1 of dex- my body clock is a bit haywire. The worst bit of the whole transition was my body took a while to get used to the delay in dex working. So I was finding myself awake at 3am because it was kicking in quite late in the day. It’s less of a problem now, but it still does happen somedays and I don’t really know why. It’s like jet lag- I really want to sleep but can’t.  And you kind of need the peaks and the troughs because that’s what makes you feel like a human being. So being ‘flat’ all the time isn’t necessarily a good thing. So then I started napping in the day more instead.

This caused me a few problems too. I used to have my naps in the afternoon. Now my naps are in the morning. It literally flipped overnight. But sometimes I still feel awful in the afternoon which I’m pretty sure is linked to cortisol and blood sugar, but I haven’t worked it out properly yet. Problem is, before I would sleep through the rough feeling. Now I don’t want to/can’t sleep at 2pm but feel rough. But also still need a nap in the morning. So con number 2 of dex- napping is less predictable 

However, I don’t need as many urgent naps anymore. If I go out, I don’t need to factor in a ‘and then I die in the corner quietly’ moment as much. As long as I pace myself properly, I can manage things a bit better than I could on HC- pro number 2 of dex.

In terms of stresses, my body copes better than before. The postman brought a letter from the DWP last week which usually means I have to updose and have an urgent nap but I didn’t need to last week. I dealt with it quite well! Pro number 3 of dex.

If my body clock isn’t skewed, I tend to sleep better on dex because my palpitations, pins and needles, vibrating feelings inside, night sweats and feeling sick night time symptoms have improved a lot. Pro number 4– this is the most exciting one by far!

I used to get stomach ache without fail every day and need to eat a lot of crisps to replace the salt I was wasting. Since I started on dex, I haven’t eaten any crisps and only had the stomach ache a few times. Number 5- bad low cortisol symptoms seem to happen less in the day. I still have them, but now I’ve just realised how badly ill I was before.

I’m eating a lot less when I’m on dex, which is good because I tend to eat when I’m feeling hypo, or when my cortisol is low. Pro number 6 for definite. Despite this, I’ve rapidly put on weight since switching to dex, which I’m pretty sure has to be because it’s a different steroid. So that’s con number 3.

I was sick a couple of weeks ago, and trying to work out what the hell to do with my steroids was a massive pain and involved some really stupid maths. Con number 4. But, I didn’t go to hospital which I would usually, so definitely pro number 7! Although, I did sleep for about 3 weeks, because I didn’t realise I was ill- I was just putting it down to dex being stupid. Those weren’t a pleasant 3 weeks because I didn’t get any of my warning signs to stress dose. So I have to relearn everything again- con number 5. That said, tapering back to baseline took less than a week and was positively a walk in the park in comparison to when I take HC (3 weeks of hell basically)– pro number 8.

Because of the way dex works, if I’m having a bad mental health day, it tends to be pretty bad, which I didn’t find so much on HC. It makes me incredibly anxious and obsessive and there’s not a lot I can do to correct it. Con number 6. 

One thing I’m still really struggling with is the fact that when I was on HC, I got pretty good at appearing vaguely normal and not falling over things when I felt everything going black or feeling dizzy (which was every day). Except my dizziness has changed so I feel like I’m trying to walk around a rocky boat all the time, and I fall over a lot. I’m hoping I’ll be able to retrain myself. Con number 7. I also feel sick nearly all of the time now, whereas it used to be limited to certain times when on HC. Con number 8. 

I generally feel more ‘with it’, more steady and have been able to achieve more day to day than I could on HC. So even though my cons list is almost as long as my pros list, some of those I’m hoping will become less annoying or I’ll get used to them as time goes on. I’m in by no means cured- if anything, this experience has made me realise how badly ill I was before and how I was probably pretty much on the verge of adrenal crisis 95% of the time.  By a healthy person’s standards, I’m still very limited because of my illness, but for me, the small improvements I’ve seen the last few weeks have made a massive difference to my quality of life, even if it’s only the tip of the iceberg. One of the biggest pros? I don’t have to worry about missing a dose. My life isn’t ruled by my tablet alarms 4 times a day quite so rigidly (I still take meds at those times but I won’t die if I miss them)- if I’m having a bad day, it doesn’t matter if I don’t wake up because I won’t die if I miss my dose. It’s so much less stressful than before! Big pro number 9 for sure!

I’ll probably think of more pros and cons after I’ve posted this, but I can always write a part 2 😉

5 Quirks of Having a Rare Disease

The end of February marks Rare Disease Day. Most of the time, having a rare disease is difficult, because it can be quite lonely and isolating. I wrote about some of the challenges in this post a couple of years ago. However, it does have its quirks and funny moments.

1. When other people try to offer you advice to ‘cure’ your rare illness.

I used to get really irritated when people would tell me about how if I eat 5 leaves of kale picked at the height of a full moon and brewed (ok, slight exaggeration) then I’d be cured. I’d think ‘seriously, my own doctor keeps getting my illness wrong, how can you possibly know how to make me feel better?!’.  Now I tend to find it amusing and nod and smile. If it helps them to think that they’ve cracked the code that has experts in the field stumped in the 30 second conversation we had about it, then fine. Maybe the kale cure didn’t work because I stirred the potion anti-clockwise rather than clockwise…my mistake.

2. You become an expert in your condition.

Mostly out of necessity more than anything, because you can’t just rock up to hospital and expect people to know how to treat you. And if you don’t feel like dying that day, it becomes a priority to make sure you educate yourself as much as you can about the ins and the outs. It does work out to be a positive thing a lot of the time though because it forces you to take responsibility for your health and be proactive about staying healthy. It does mean you spend a lot of time reading medical articles and trying to piece things together- I dread to think what my google search history looks like!

3. You’re used as a teaching tool a lot when you’re in hospital.

Once word gets out that there’s a rare disease patient, a lot of med students get sent your way. It’s not because you’re getting more or better treatment than the other patients, it’s so that they can all ask you the same questions and try to ‘diagnose’ you for practice. It depends on what mood you’re in or how nice they are- you can either make them do all the hard work and give very brief answers, or you can volunteer information that you know will lead them in the right direction. One student finished his consultation by saying ‘did the others ask you any different questions? Am I on the right track?’ which I found amusing!

4. You get used to telling Doctors they’ve got it wrong.

Rare disease is complicated enough. Being an anomaly of a rare disease makes it more challenging. Generally, because of the teaching tool thing, you get a lot of people stood around your bed at senior review with the consultant. But that doesn’t mean the consultant is a specialist in the field of your rare illness, it could mean he or she is the closest specialist on duty that day. So if they get basic facts about my illness wrong, I correct them. Which usually leads to a few gasps and shifty glances from the med students if a) I’ve dared to interrupt the consultant and b) I’ve told them they’re wrong. Whichever way you look at it, teaching tool or not, I’m still there for treatment, and if the understanding of my illness is wrong, my treatment is going to be wrong too. A good consultant would listen to the patient and discuss it. A poor consultant would say something like ‘fine, if that’s what you think’ and then try to bombard the students with a whole load of words they don’t understand and hope that I don’t understand either (which usually I do, you know, because of all my reading from point 2). It takes guts to challenge doctors and I only do it if I know I’m definitely right, but if I hadn’t in the past, I probably would be dead right now.

5. Your illness is used as a plot line in medical dramas a lot.

TV needs to have drama and sometimes normal stuff like flu and alzheimer’s just seems a bit bland. So rare diseases get used a lot because it makes the character look good when there’s a dramatic ‘save’ when they diagnose them and because writers can over-dramatise it as much as they want because 99.9% of viewers won’t have heard of it so can’t shout ‘you’re wrong!’ at the tv. Grey’s Anatomy once had a halloween storyline where Dr Karev had to run around tracking down a kid with the same illness as me who’d gone trick or treating on the wards because if she got scared by someone jumping out at her she would die (so he said). Not entirely true, but vaguely close. It’s quite fun to be able to diagnose the patient in the first 10 minutes of the programme though, and then feel super smug knowing you’re ‘better’ than Dr House when he eventually gets it (after he’s ruled out Lupus and Cancer, obviously).



Occupational Therapy

When I gained my newest endo, he was the first person to actually think about me as an entire person, not just a walking set of illnesses and symptoms that needed treating. He realised that me waiting around for tests and trying different treatments and being bounced from doctor to doctor in various hospitals was doing nothing for my mental health, self esteem and physical health, so he got me an appointment with the Occupational Therapy department at the same hospital.

I already have physio in the same department (albeit different Hospital) and I’ve been to occupational health when I was still working, but aside from knowing that OT helps with ‘every day’ stuff, I didn’t really know what to expect. But I was quite keen to go because I like to be proactive and if there was something I should be doing to help myself daily, I wanted to do it.

I’ve been going for about a year now, every 3 months. To start off with, I had to fill in a questionnaire about my levels of activities, health, mental health, and perception of my illness, which we revisit every now and then. The therapist was lovely and said that she usually only dealt with people who had a diagnosis of Chronic Fatigue Syndrome /ME but my doctor wanted me to see her because there’s a lot of overlap between ME and adrenal insufficiency in terms of symptoms. It wasn’t going to do me any harm trying it, basically.

I got a bit of a shock when she asked me what I wanted to have some kind of control over or ‘say’ in my life. What did I want to be able to do that I currently couldn’t? No one really asked me that the past few years, it’s been more a case of ‘dont do that’ and very little attention paid to my quality of life. So I said I wanted to work on building up my tolerance to walking, because I could only walk about 30 seconds before I felt like I was going to pass out and things start to get fuzzy.

Since then, I’ve not been overly successful on the increasing my tolerance to walking but it has increased, just not to the level we’d have hoped so far. But she’s also helped me with things like pacing, sleep and concentration. To be honest, she said I was doing an awful lot of the stuff she’d recommend anyway, and that I’m pretty much a model patient (gold star for me!), but it was actually really good from a mental health and self esteem point of view for someone to actually tell me this. I’ve been doing the best I can for my health and someone was actually acknowledging it! I actually needed that reassurance.

The last time I went to her, I’d been feeling pretty fed up because I felt like I was losing more independence rather than gaining it. I was down to washing twice a week and only when my husband helped me. I wasn’t really getting dressed because I had no energy. I was sleeping a lot and not really going anywhere and I kept ending up in Hospital. I told her that psychologically, if I could do a couple of basic things for myself then I might feel better, but my husband was having to work a lot, and because I rely on him for washing, eating, doing jobs in the house, going places, pushing the wheelchair (which we bought) … pretty much everything, I was getting pretty depressed. It was also getting dangerous because I wasn’t able to make myself food so hypos and low cortisol episodes were happening a lot.

Then she started asking me questions- if I had x would this help me? I was a bit confused and said ‘what, like equipment?’ And she said yes.

It never occurred to me that there might be things that could help me at home that the nhs could provide. I always assumed that it was for old people. She talked me through all the various options and we decided that a shower stool and a perching stool for the kitchen might help me get some independence back.

Now I can choose when I wash. Seems like a basic thing right? But mentally it’s so much more empowering being able to decide when to be clean, not relying on someone else. I’m still limited- I can’t do it every day, I have to have a nap beforehand and a snack and it has to fit in with my schedule around my illness but it’s still way more choice than before. And the perching stool for the kitchen means I don’t have to stand when I’m trying to prepare food. It makes it a bit safer, since standing and heat are guaranteed triggers for me. Again, I’m still limited- I only really make soup and put salad in a bowl but it’s still more of a choice than I had before. Choice over simple things, I’ve discovered, is a fundamental right, and I’m actually a bit cross at all the other HCPs I’ve come across who I’ve told these kind of difficulties to in the past and just ignored me- I was still alive, therefore who cares about how I feel about my independence?

It was actually a quick turn around as well. Within 2 weeks of the appointment, the stuff had been delivered. I don’t know if it’s because I’m a young person so I got overlooked in the first place but it’s definitely worth finding out if there are things that the nhs can provide you with to help if you’re in the same situation as me. I was never told anything so I didn’t think I was eligible. But it’s made a lot of difference!

When you’re the unusual of the unusual

Adrenal insufficiency or Addison’s disease does seem to be getting more diagnosed than even a few years ago when I was first diagnosed. Or maybe it’s just I’m paying attention whereas I wasn’t before. Either way, it’s still classed as a rare illness.

The last time I went to my endocrinologist he said I was unusual, highly complex and he’d need to go away and read about me. I’ve been told by various medics I’m complex, weird, an anomaly, mystery…, so I’m fairly used to it and I usually laugh about it.

Except I really don’t like it. I laugh about it because I’m stuck with it and I’d rather find some humour in stuff than be bitter and twisted or upset about it. But that doesn’t mean I have to like it. And everytime I hear someone tell me ‘you’re just a bit messed up really’ in more fancy, medical words, it makes me feel a bit hollow.

Having a rare illness is isolating. Especially in a world of the Internet where you can find a million and one google results about how to make a unicorn piñata in a nanosecond, you can find anything and everything about lots of illnesses. Granted a lot of them aren’t necessarily useful, but you also find communities, forums, support groups and blogs.

Having a rare illness means there’s a lot less of that. The last time my GP googled something about my condition my blog came up in the first 5 results. I felt both pretty proud but also a bit disheartened.

But when you’re the exception to the exception, it’s even more isolating. My GP rang me to sort out my new meds my endo put me on and she didn’t really understand what the ins and the outs were of what I was taking them for. In the end I said ‘that one is for if I think I might die immediately, this one is for if I’m concerned but I don’t think I’m going to die and that’s my daily steroid’. But it means unless my GP goes away and does some research, which she can’t necessarily because there wasn’t a lot to start with, even in the medical world, I know more than my GP. So I can’t ask her for advice.

I’ve got a temperature and a bit of a cold so I need to apply some sick day rules. It’s always a bit tricky anyway, even on the ‘common’ treatment for AI, but I haven’t found anyone who is on the same treatment plan as me, despite asking on Facebook groups. The only thing which kept me from getting stressed about it was the fact that my endo also told me I had brilliant insight into what’s going on and how to manage things. In saying that he at least gave me confidence that whatever I thought was best probably was best. Obviously I have no idea if I did it right or not, but I didn’t die overnight so I’ve still got a 100% success rate!

It’s the unknown, not having anyone with similar shared experiences or having to hunt like mad to find them, the blank looks from Doctors… I’m dreading if I need to go to a&e or call 999 now because they sometimes used to struggle with stuff before- I’ve had to do my own IV to oral maths before and am regularly asked ‘how much of this/how often/is this right?’ kind of questions. (Although I’d rather that than someone treating me blind). Now there’s even more maths and an unfamiliar for AI treatment plan to contend with!

So today I guess I’m feeling the isolation more than usual and the hollowness and emptiness I feel when I get told I’m weird. It doesn’t help I have a ‘normaI’ cold on top so I feel crappy! If I have to be sick every day, sometimes I really wish I had a more straight forward illness, if that even exists!

Diabetes Insipidus

I went to my endo a few weeks ago and had a pretty amazing appointment as far as progress made in terms of trying to work out what’s going on. But it’s pretty hard to explain what’s going on and I’m not doing a great job at explaining it verbally. It’s partly because it’s all still new and I’m having to relearn, but partly because I’m getting used to being on new treatment. Possibly the easiest of my ‘new’ things to explain is diabetes insidipdus (as I currently understand it, anyway).

If you don’t like talking about peeing habits this isn’t the post for you. It’s not something I would usually talk about on a blog, but. actually, maybe if I had read this 30 years ago (if I could read or if blogs existed) I might have improved my quality of life considerably before now! So maybe it will help someone else.

Diabetes Insipidus is nothing to do with the diabetes that everyone knows about- type 1 and type 2, which is related to blood sugar and diet. Diabetes Insipidus (DI) is to do with how the body manages water through the kidneys, which is controlled by a hormone called antidiuretic hormone or vasopressin (ADH or AVP). This hormone comes from one part of the brain and gets ‘stored’ in the pituitary until it gets a signal telling it to release it- the signal being when the amount of water in the body is too low. Then it helps the body (kidneys) retain water rather than getting rid of it, which is why your wee goes yellow when you’re dehydrated.

If you have DI, the hormone messages don’t get through, so the body struggles in retaining the water when it gets too low, and it makes you feel really thirsty as it tries to replace the liquids its lost. An outcome of this is people with DI drink a lot and need to go to the toilet a lot.

There’s a big question mark as to whether or not my pituitary hormones work, which are being tested. However, I need to go to the toilet constantly and drink a lot, which is why my endo started me on treatment for DI. Some things that should have really indicated DI in the past include:

  • going to the toilet multiple times an hour. Some nights I get up twice an hour, even though I’m not taking on as many fluids.
  • I just assumed I was always well hydrated because my urine was always clear. But apparently it’s just because my body wasn’t retaining any of the useful bits of it and I was flushing my electrolytes out.
  • I need to drink a lot, I’m constantly thirsty. Like I feel like I’m in a desert kind of thirsty.
  • I spend a lot of time needing the toilet but trying not to go because I don’t want to look ‘weird’ going to the toilet for a fourth time in an hour.
  • I always had to know where the nearest toilet was and would feel quite anxious if I knew there wasn’t one nearby.
  • If I was getting in a car or going to the cinema, or somewhere I couldn’t use a toilet when I needed to, I’d stop drinking fluids 2 hours before so I would be able to manage a whole hour and a half before needing the toilet. Which, I’ve now learnt, is a really bad thing to do with DI!
  • Whenever I have low cortisol or my body is under stress, I need to go to the toilet really badly as an impending crisis symptom. I said to my husband before ‘it feels like my body is shutting down’ when that happens, which it kind of is if I do have problems with my pituitary.
  • If I need the toilet badly, I can’t ‘hold it’ like other people can. Because other bits of my body can’t cope with it. Which I always assumed was because of low cortisol, which it might still be, but it could also be because of DI. Haven’t worked it out yet!

No one told me it wasn’t normal, so I’ve done that pretty much all my life. It’s not the worst symptom I have of all my conditions, but it’s a particularly annoying and embarrassing one, and people do tend to like to point out how often you go to the toilet and take the piss (pun intended). However, I started a very, very low dose of treatment for DI and it’s already made such a difference! It’s actually amazing. I take a nasal spray three times a week at night time (desmopressin). I have to limit my fluids to 500ml for 1 hour before and 8 hours after I take it, which is hard, but it’s worth it for the benefits.

  • I only get up once at night to go to the toilet. I still wake up for other symptoms, but I’m getting better sleep because of it. Like I can actually sleep for a whole hour in one go rather than waking up every half an hour
  • I need the toilet less in the day. I’m spending a lot less time uncomfortable because of it, and far less time going to the toilet.
  • I’m retaining the good bits from water. So I used to crave salt at night time because my electrolytes were all a bit out, and I used to have a funny heart rhythm which both went away if I ate crisps (because of the salt). It was getting to the point where I was licking salt because it was so bad. But now I’m retaining the electrolytes better, I haven’t eaten any crisps for 2 weeks. It’s early days, but I’m hoping that continues.
  • Having DI means I can apply for a toilet card. It’s like the one for crohns disease, where the idea is you can present it to a member of staff and they will (hopefully) give you access to a toilet not usually made available to the public. They don’t have to, but they should. It just means it’s a bit less stressful going out.

Like I said, going to the toilet all the time was annoying, but I didn’t actually know it wasn’t normal until recently. I just got on with it! But now I know what ‘normal’ people have in terms of toilet habits, I’ve realised that actually it was taking up a huge part of my life, was very inconvenient, and was having a wider impact on things like my sleep, my level of anxiety going out and that actually, I do avoid specific places or activities because of my fear of needing to go to the toilet. So, early days, but so far I’m really appreciative of my endo for asking me random questions and not just dismissing me!



I tried to make soup today

Not even homemade soup where I had to blend anything, I mean soup from a plastic tub where you stick it in the microwave and stir part way through.

Over the past couple of years, I’ve had a lot of people who are supposed to be helping me or giving me support tell me that I’m lying and my illness doesn’t limit my life as much as I say it does. Or they tell me that my condition(s) should mean I live a ‘normal life which isn’t restricted in comparison to other people my age’. Pah. I was having a bit of a grumpy day in my head anyway because my new meds have changed the way my dizziness feels, which means I spend a lot more time falling over things and being clumsy. And I already had issues with coordination anyway. So when I made soup and it went a bit wrong, it made me particularly grumpy! Although I decided to turn it around and find the humorous side of it, because otherwise I’d spend half my life being angry in my head. Plus it was also quite funny. Here ends the grumpy part of this blog post.

I decided at 11.30 that there was no way I was going to be able to make my lunch without having a lie down first, so laid on my bed and flicked through instagram. At 12pm, I got up because it had been 2 hours since my last snack and my reactive hypoglycaemia/insulin resistance/something else yet to be discovered means that I really struggle if I don’t eat every 2 hours at the moment (another thing not recognised by the government/some medics). So I kind of had to move even though I didn’t really feel ready to.

I found my soup in the fridge- my husband buys me ready made fresh soups with about 10g of carbs in per half a pot because I have to follow a low carb diet (also not recognised- I’ll keep pointing these out even though I said I wasn’t going to be grumpy anymore). But I have to make sure I eat enough fat/calories at the same time to take into account not eating the carbs, so I did a bit of quick maths/guesswork and decided to eat some cheese with it too.

All I have to do is pour half of the soup into the bowl, put the rest back in the fridge for tomorrow and put the bowl in the microwave for 90 seconds, stir and microwave for another 90 seconds. Then I get the bowl out of the microwave onto a pre-laid out tea towel which is directly in front of the microwave so I don’t burn myself. I can do it because I’ve practised it. I have a system. But if the system goes wrong, or I have to do it in someone else’s house or when people visit our house and move things, I can’t do it and usually end up burning myself (although according to *some* people I’m fine and I’m lying). Then I sprinkle pre-grated cheese onto it. I’m not lazy, grating takes too much effort.

Except today, I was really tired, so I overshot with the soup and poured more into the bowl than I meant to. No big deal? Just eat it anyway? No, because that messes up my carbs, and I don’t want to do any more maths because I hit my quota of brainpower for maths right now and I’m on a restriction of carbs. Plus if I eat too many carbs in one go it makes my blood sugar drop too fast. So no, it’s actually reasonably important I have the right portion. Tip it back into the pot then- that’s what I did. This happened:


It’s not really that big a deal, but it kind of is for me. I forgot that there would be some kind of overspill from the bowl to the pot. So it leaked down the side of the bowl. Trying to stop that happen, I tipped the bowl backwards and it all fell out the back of the bowl. I kind of just stared at it for a bit and decided to put the bowl down and take a photo of my silliness so that I could bitchily say in my head ‘THIS is why I need extra help’. Eventually I worked out how to get enough soup in my (new) bowl, clean up the mess on the side and then microwave my soup.

The problem isn’t so much the physical act of cooking. I know *how* to cook, I can physically lift light things like a bowl, I know how the microwave works. It’s being able to do it safely. What happens if I get one of my sudden dizzy spells while I’m getting the soup out of the microwave? I burn myself. Or if I start getting the shakes while I’m carrying it to the table? I burn myself. Or if I get a muscle cramp while doing something with hot soup? I burn myself. Or, something goes wrong like when I tried doing a simple task of pouring it into the bowl? I usually end up burning myself. And my body can’t cope with even a little bit of burning because I don’t make the hormone which responds to stress. This is why I don’t use sharp knives or the hob- can you imagine me and my coordination with fire?! On a particularly bad day, burning myself on soup could actually kill me.

The other thing is, I ration out my energy so that I can do a task. I don’t have any extra for when things go wrong or take a little bit longer or involve extra thought. So it might not seem like a big deal to other people having to spend a minute cleaning up soup that you spilled, but to me, that’s a minute of walking to the sink to get the cloth, walking back to wipe the surface, having to think logically because the soup is too thick to be absorbed, having to walk back to the sink to get a bowl to scoop the soup into, wiping the surface again, walking back to the sink to rinse the cloth, walk back to my soup *and then* carry out the rest of the task I’d set out to do. Which I can’t just leave until later because I need to eat at set times to manage my conditions and by this point I really needed to eat. In fact, I half thought about leaving it like that until my husband got home from work, but all I could think of in my head was how unsanitary it was and knew I’d obsess about it for the rest of the day, which would make me feel worse (also not a problem according to the people who tell me I lie). Once I’d microwaved my soup, I was holding the bag of cheese and a spoon and put the bag of cheese in the sink and the spoon in the fridge rather than the other way around. Then thought ‘hang on, something wasn’t right there’ and took 30 seconds to work out what had gone wrong. Also quite funny, but annoying when people regularly tell you that you’re ‘fine and are over exaggerating’ because it’s pretty hard admitting you’re a bit like a 90 year old dementia patient rather than a 30 year old as it is, never mind being told you’re lying about it.

I guess the point of this blog post is that disability doesn’t fit neatly into boxes which people keep trying to put me in. And it gets harder when it’s an invisible condition, because it really depends on the individual person. There’s probably no one in the UK who has my exact same illnesses presenting in the same way, which means a tick box form can’t possibly work for a lot of people anyway. I’m pretty good at making it look like I can handle life because I’ve practised in my house. I have a routine. I’ve worked out what I can and can’t do and don’t do the things I can’t. Do I want to eat soup every day for lunch? Not really, it’s boring and my food choices are already limited because of my medical diet- I’d rather eat a bag of doughnuts! But the last time I used the hob I had to call an ambulance. And anything else requires maths to work out my carbs. So it’s easier to eat the same thing every day. Just because I look like I can do it and can physically use the microwave or lift a bowl doesn’t mean I’m doing it safely- I probably shouldn’t be using the microwave a lot of days, but I don’t really have a lot of choice.

The important thing for me is that I keep trying to keep independent and do things for myself rather than relying on other people. It’s just unfair that trying seems to mean the same as lying in some people’s eyes.

I love my endo

I saw my endo on Thursday. I’ve seen a lot of endos, but this one os by far the best and most senior. I crashed since then so haven’t felt well enough to write an actually useful blog post, but equally there are some things that people I socialise with should probably be aware of, and also if other people read this who have similar conditions, it might help me learn too 🙂 I will write a better blog post at some point but here’s the gist.

  • I might have a rare or little seen version of AI (or something else, it got a bit confusing) which my endo needs to go away and read about but he saw a case once 20 years ago. With this in mind, he changed me from hydrocortisone to dexamethasone.
  • My cholesterol is still crazily high so I’ve been started on statins
  • I might have another condition called diabetes insipidus, which, helpfully, is not remotely related to diabetes that most people have heard of. It’s to do with the way the body processes water/fluid. So I’m starting treatment for that.
  • My low carb diet has been lowered further to 60g carb per day with more protein but he’s going to think about how my blood sugar doesn’t cooperate much and see if a further reduction in carbs helps.

I’m pretty good at recognising what to do (he said so too which made me feel proud!) and when but I’m going to be relearning a lot. And I’m a bit apprehensive because in that one appointment, I’ve made more progress and had more changes made to my medication since I got put on hydrocortisone 4 years ago. And the switch from pred to HC wasn’t a pretty one, although I know a bit more about it so I should be in a better position to manage it! But I’m going to get it wrong and will beat myself up about it. It might mean I have a meltdown in a completely inappropriate place or I could end up not managing as much as I thought I could and backing out of something or taking an urgent nap. I don’t know what’s going to happen. And, unfortunately, if I do have the rare thing, I don’t have anyone to ask or to learn from because it’s hard enough finding people with AI full stop!

I’m not going to hide away until I work it out though because my life is already limited so much as it is. So far I’m feeling positive about it- I’ll just do what I usually do and think ahead, risk assess things and factor in the changes. Then learn from any mishaps. Apologies if you end up on the wrong end of one of my hormonal mishaps though 😉 Obviously I’ll try not to be mean or rude because it’s not fair!

In the meantime, if anyone takes Dex for AI or Addison’s and has any experience of it, I’d be interested to chat. 🙂

‘It’s *just* your hormones’

This phrase annoys me two ways and they’re both the polar opposites of each other! It’s a phrase that gets batted around quite a lot as a way to ‘excuse’ women’s behaviour, in particular. But whichever way it’s used, it’s irritating. So it’s now one of the phrases I’d quite like to see eradicated.

Hormones control everything. I don’t think most people realise that all of your systems rely on hormones to make them work. Hormones tell the different bits of body to do things, they’re like messengers. Otherwise your body is just a bunch of post boxes without any mail getting delivered anywhere else. They zip around all day every day, even when you’re asleep. In fact, a lot happens when you’re asleep and you don’t even know it. It’s actually pretty miraculous that we wake up every day because so much has to work in the background while we were counting sheep.

There are some hormones you need to survive. Some you’d die if you didn’t have them- cortisol is one, insulin is another. Not your life would be more miserable or you’d have horrible symptoms. You’d actually die without them pretty fast. Which makes hormones pretty damn important since they’re all linked together. And if one goes a bit haywire, chances are this has a knock on effect on the others. But it’s a bit like spreading gossip or Chinese whispers- the messages get changed slightly as it goes through the system, or things change so that by the time the second message has got through, it’s too late to be effective. Hormones are tricky things.

Which is why I get really mad when someone says ‘it’s just your hormones’. It’s said in two ways:

1. To try to dismiss what you’re feeling.

In the same way saying ‘calm down’ never makes the receiver feel calmer, telling someone ‘it’s just their hormones’ when they’re distressed, or words to that effect is like lighting a match. Particularly if you shout it at them. In fact, if I am having a meltdown, shouting at me is about the worst thing you can do, because it makes the hormone imbalance worse. Someone who has a hormone imbalance isn’t necessarily physically able to produce the hormones that help other people rationalise, keep calm or let go of something. And when you’re feeling really unbalanced hormone-wise, you’re not just having mood swings, or being irritable or tearful, you’re also likely feeling paranoid, guilty, anxious and possibly suicidal. About what? Probably about something minute. But can you get your body to realise that? Not easily- it’s not a mental problem, it’s a chemical problem. So hearing things like ‘get a grip’, ‘just let it go’, ‘calm down’, or it’s ‘just your hormones’ makes you feel even more paranoid, tearful and stressed which adds to the problem. Even if it is something stupid to everyone else, a person with an imbalance can’t get a grip, and telling them so just makes it worse because you know you’re being ‘silly’ and you can’t do a thing about it.

I tend to have meltdowns at home and not in front of other people unless I get caught out. But because it’s not just people like me who will have this problem, pregnant women also have similar imbalances (although they get a bit more of a free pass), here’s what helps me when I’m in a cycle, so maybe it might help some other people.

I will be going round in circles- sorry about that. I’m usually so disorientated by whatever it is that’s stressing me out I won’t remember the start of the cycle so will keep going over it. And it will sound like blithering but it’s important that someone hears my concerns and takes them seriously. It might be stupid. But to me, it’s really not at that point and if you want me to stop having a meltdown, trying to snap me out of it actually takes longer! So listen to me. Write my main worries down or summarise them to me at the end so I can see I’ve been heard and you can repeat to me that we’ve been over it.

Do something that shows me I’m not pissing you off. I will be over sensitive to everything and read things into things which aren’t actually there or are just coincidence. But it’s harder for me to think that if you’ve given me a hug or made me a cup of tea or come and sat next to me.

The worst thing about having had a meltdown is not knowing what to do with myself afterwards. Hormones are working overdrive and it sets the whole thing off again if there’s nothing to bring me back down to normal. So I need a plan. It’s doesn’t have to involve you, but I need the next hour planned out so that I can follow it and feel in control. But I won’t be able to come up with something myself because I won’t be able to see the wood for the trees. So it might be ‘go get your crochet, what animal are you working on?’ Or ‘watch an episode of X and then have a bath. Do you need a magazine?’.

That being said, this brings me to the second way people use the phrase:

2. To excuse negative behaviour

Like I said, I try to reserve my meltdowns to home and not eat random people alive just because my hormones have gone a bit crazy. Although a poor British Gas man got my wrath one day! I try to walk away from as many situations as I can or just stop talking if I think I might be rude. Sometimes I get it wrong, but I’ll always apologise afterwards, which is more than can be said for some people who don’t have hormone problems!

So I find it annoying when some people use it as an excuse regularly. Whichever way you look at it, no one deserves to be treated like crap all the time, hormone problem or no hormone problem. Something like PMT or being stressed at work is not a reason, in my mind, to be rude to everyone you know for a week every month. PMT is like a fluffy rainbow unicorn and my illness a fire breathing dragon in comparison- if I can try hard to minimise my outbursts as much as possible (or at least apologise), then other people should try too!

Note how I said try. Everyone’s human and has a bad day. I’m not talking about people who have a bit of an off moment or who are going through a hard time, I’m talking about people who use ‘it’s my hormones’ constantly as an excuse for being rude.

So you can see, it’s a bit of a tricky phrase because using it as an excuse is annoying but said flippantly is also annoying. Maybe it’s the ‘just’ that it always comes with. I don’t know. But I do know that I will probably walk away quite sharpish if it’s said to me so I don’t end up punching the person who says it to me!

ACTH Test Results

A few people have been asking if I have the test results back since I banged on about it so much (lol), which I do! I had to go to my GP nurse for an asthma review but got a letter front my endocrinologist bringing my appointment early from late March to early January the same morning, so knew something had shown up as a ‘needs to be dealt with urgently’. So I persuaded her to look up the results while I was there!

She didn’t know what they meant so I explained adrenal insufficiency and the ins and the outs. Basically my ACTH level came back as ‘untraceable’.

Briefly, like I explained to her, ACTH is the boss hormone that comes from the pituitary gland. It pulses at various points in the day so it’s not a steady stream of hormone, but there will be some floating around in your system all of the time. It’s highest in the morning. ACTH is what tells the adrenal glands to make cortisol, controls your thyroid, manages other hormones like growth hormone… it does a lot. Once these glands have got enough ACTH to do their thing, it feeds back to the pituitary gland and says ‘enough now’.

The nurse had a little bit of a panic when I explained to her the role of cortisol. You don’t die from having low ACTH, but you do die from not having enough cortisol which is stimulated by ACTH. We already know I don’t make cortisol, so the life threatening consequences of not having ACTH are dealt with. But the nurse was pretty worried, so there was a bizarre 5 minutes where I was soothing her and explaining that as I’d had this probably for 3 years anyway, another 3 weeks until I see the endo wouldn’t be harmful.

She was also confused because I was actually quite pleased with this result. There’s a reason for me still feeling to shocking!! And blood work means there might (and I say this hesitantly) be some treatment options. Obviously I need to wait and see what my endo says because he’s the expert, but I know a bit from the last 3 years of research.

Essentially, I have a pituitary problem because I don’t produce ACTH. However now we need to work out if the whole pituitary has shut down or just ACTH production. There are a few potential scenarios:

– I have no hormones coming from my pituitary and have hypopituitarism. This is another rare illness and would put me in the secondary adrenal insufficiency category.

– some of my pituitary hormones work and some don’t. So we’d need to work out which ones.

– my other pituitary hormones work and my ACTH doesn’t. Having been on steroids for cortisol replacement, my pituitary might have decided it doesn’t need to make ACTH anymore and stopped production. The only way to convince it to start again would be to stop steroids. But then I’d die. So my pituitary isn’t going to make ACTH again by itself either way.

You’d think I’d want only one of my hormones to not work and the rest of the gland to work fine. That works for most medical problems, but actually, things would work a lot easier for me if the whole gland didn’t work anymore. While bits of my Endocrine system still work, my body is constantly fighting itself to try and right itself and adding in hormones with tablets is never going to get the balance just right. So the tablets confuse the glands and the hormones even though I need take them to survive. It’s a bit like trying to push together 2 repelling magnets- they push against each other and try to right themselves but while you’re pushing them, they’re never going to attract.

It’s said that someone with an Endocrine disorder which is uncontrolled like mine has the same amount of hormones zipping around as a woman in active labor. Feeling that out of control all the time isn’t pleasant, so if there’s anything that someone can help me with to make me feel less unbalanced, it’s something to be excited about. Never mind if there’s anything that can be done to alleviate my physical symptoms!

So I got bad test results but it came as a bit of a relief really. I’d been feeling terrible anyway, but now there’s a blood result backing up how sick I feel and also says that I was right to keep insisting they test me for it for 3 years!