How Covid Levelled the Playing Field

Truth be told, I’m not really bothered about when lockdown ends. My life pre-lockdown was pretty similar to now. When I’m having a really negative day, it’s actually quite hard for me to listen to people moan about how crap their lives are right now, and how much they’re looking forward to doing stuff again once things go back to normal. Because it makes me think ‘my life was crap before, crap during and will still be crap after lockdown, according to them, and I still don’t have anything to look forward to’. Or at least, that’s what I’d feel like all the time if I let myself. Instead I try to frame it differently and think about the ‘positives’ covid has had on my life (if there’s such a thing!). Here’s how covid has actually put me on the same level as everyone else:

1) everyone’s suddenly talking about health. Before, I used to avoid talking too much about my health because other people (and me) found it depressing/they didn’t really care/there were other things to talk about. Suddenly health is all anyone wants to talk about!

2) people suddenly care about their health and germs. I always actively stayed clear of sick people, had antibacterial gel in my bag all the time anyway, used to change my clothes as soon as I got home… sound familiar? Now everyone is washing their hands all the time and the majority stay home when they’re ill.

3) no one is allowed to socialise. I used to feel like I was missing out on life because I’d see people on social media going out and doing basic things like going for a walk. Or meeting up with friends. My social life mostly came from social media and texts. Now everyone’s in the same boat, so I feel like I’m missing out on less.

4) everyone’s in limbo. No one knows when things will go back to normal (if it ever will) and our lives are ruled by what a middle aged man (Boris) tells us to do. That’s pretty much how my life goes- I wait for a middle aged doctor to tell me my test results and we might have a plan of action (or not)

5) lots of things are now accessible to me that weren’t before. I can do so much more online! From medical appointments to ordering stuff, to university courses if I wanted to, to watching theatre performances. None of this was available before, but now it is.

6) people know what it feels like to be stuck in their houses for a long time. Not able to leave the house for days? Yep. I know exactly what it feels like.

7) everyone now seems to care about mental health. I’ve had more welfare checks about my mental wellbeing since covid than I ever had in the years before while I was chronically ill. But the circumstances are the same for me- isolation, pretty high risk of death, life on hold, no end in sight…

8) people are scared of dying. That might sound odd, but considering I can die purely by forgetting to take my pills, let alone get out of bed and do anything, it’s actually been quite nice to have people vocalise their concerns about death. It’s made me feel a bit more normal!

9) there’s some recognition that the NHS/welfare system has flaws. I don’t mean the staff. I mean the system itself. Lots of people have had covid and have realised that there isn’t much long term support either financially or in continued care for people who have long term, debilitating illness. Or even people who haven’t had covid who’ve been furloughed- the system only cares about you to a point, even if whatever problem you’ve encountered isn’t your fault. Ultimately, you are still a number to them.

10) people are (rightly so) concerned that their health status is going to have an impact on what they’re allowed to do in the future. Vaccination passports have been a thing this week. Although, ironically, the people who are moaning about having to prove they’ve had the jab are most likely the same people who demand that I give them my entire medical history when I use my blue badge and ‘don’t look disabled enough to them’. You shouldn’t feel anxious about going out in case you get interrogated about your health.

11) The world moves slower. Everything takes twice as long in covid. From sending letters to doing the weekly shop. People don’t expect answers or responses there and then anymore. It’s a lot less stressful for people like me who aren’t always able to respond or do something immediately.

12) People are having to be more flexible. Boris has a habit of going on tv to do do a press conference and almost deciding what the next day’s rules are going to be like once he’s started speaking. Which means people have had to get used to plans being really loosely made. Or someone has to self isolate so things change. I used to feel a lot of pressure about being well enough to do certain things (still do), and, a lot of the time, I’d just not bother planning things in case I wasn’t able to do it. Now people are at least a lot more understanding/aware, which means I feel like I have a bit more of a choice.

13) there’s a bit more empathy about my daily challenges. There’s no such thing for me as ‘nipping to the shop over the road’. It would take at least an hour of getting ready/preparation to do that and a lot longer to recover. Covid means that what used to be simple tasks for everyone, like going to the shop, now take planning- you need to take a mask with you, you could only go at certain hours of the day at one point, you have to plan your route around the supermarket, you have to socially distance and queue for a lot longer… Lots of people are finding things like supermarket shopping stressful. I’ve always felt that level of anxiety about it, but now other people can empathise too.

14) you can buy pretty much anything online. If you still can’t face everyday life, you can now get practically everything online and delivered to you. Lots of companies now have letterbox friendly items listed. I thought Amazon prime was an amazing thing pre-pandemic, but now I can get almost anything I want without even getting out of bed!

15) it’s now the done thing to be in bed/pjs by 7pm on a Friday night. Or just not get dressed all day. I put my pjs on at 5pm every day and am in bed by 7.30pm. No one bats an eyelid when I say this now!

16) people now realise the important things in life. Holidays and social lives are great, but there are lots of little things that happen in life which are actually probably the best things in life. Like seeing your family and friends for a chat, without feeling the need to have a busy day out planned. Or enjoying a piece of cake in the sunshine. Or doing arts and crafts with your kids. The everyday things that people either took for granted or were too busy to appreciate. When you feel like all your independence and freedom has been taken away, those little glimpses of enjoyment feel a million times better.

Everyone is currently living for when things ‘go back to normal’. Which I understand completely, because I used to think that about me being sick, that one day I’d get my normal life back. Almost a decade on, and I’ve realised I won’t, and that’s upsetting but I’m fine with that. What’s more challenging to manage, is how I feel about the divide between me and everyone else and what their lives are like. Again, that won’t change, people will always be able to do things I can’t. But I’m hoping that other people will retain the empathy they currently feel when the pandemic levelled the playing field between us, and some things will stay the same once things do eventually go back to normal.

New Diagnosis: Isolated ACTH Deficiency

This one’s more of a new diagnosis in name, rather than it meaning anything changing treatment-wise for me, since it comes under the ‘secondary adrenal insufficiency’ diagnosis which I’ve had for years. But it’s definitely good to have it and will hopefully get rid of a few problems I have with doctors!

When I first got diagnosed with AI, it was more by accident than anything else. I’d been admitted to the brittle asthma ward with recurrent asthma attacks and after 2 weeks there with no answers, the consultant ordered a short synacthen test as a last minute precaution before I left the hospital (my bags were packed and I was ready to leave). Suddenly he was back and said I had to stay longer and diagnosed me with adrenal insufficiency. The theory was I’d developed AI because of the high doses of (known as exogenous) steroids I’d been taking for my asthma. I needed the steroids, I’d taken them as prescribed, but when you take steroids for a long period of time at exogenous doses, your adrenal glands can get lazy and shut down production of their natural steroid, called cortisol. Sometimes it’s possible to regain function by slowly tapering off it, but a year later a new endocrinologist and another short synacthen test said this was unlikely to be the case and I’d be steroid dependent for life.

However. My argument was that everyone was just assuming that I was AI because of the exogenous steroids. But I’d actually had symptoms of AI for a long time before that. I slept a lot as a child, like 20 hours per day. When I was really stressed about GCSEs, I basically did nothing but sleep and had stomach ache and headaches, to the point where I was put on half days at school. I felt like there was a lot more to it.

This is where the hospital which diagnosed me and treated me for a year after diagnosis really screwed up. They didn’t test my ACTH level at the time, they only checked my cortisol and my adrenal glands’ ability to produce cortisol. The pituitary gland makes the hormone ACTH, which tells the adrenal glands to make cortisol. When there’s enough cortisol in the blood, the pituitary gland stops making ACTH. So you can have adrenal insufficiency either because your adrenal glands don’t work (primary) or because your pituitary gland doesn’t make the ACTH to tell the adrenal glands to make cortisol (secondary). The diagnostic test is supposed to be a baseline measurement of cortisol and ACTH followed by an injection of ACTH and then more blood tests. If you have primary AI, your initial bloods will show low cortisol and high ACTH, if you’re secondary AI, it’ll show low ACTH and cortisol to start with, but higher cortisol after the injection.

Except my results were always a bit weird. It’d show no cortisol pretty much for all parts of the test, which, if you follow the diagnostic criteria, should mean primary adrenal insufficiency. Except that’s not fitting with the SAI from exogenous steroids diagnosis. And no one had ever tested my ACTH, so it was all just ‘assumed’ that’s what it was. ACTH testing is expensive so no one wanted to do it because I already had a diagnosis. Meanwhile, my health record said ‘possible secondary adrenal insufficiency from exogenous steroids’.

It’s that phrase that has caused me the nightmare of problems since diagnosis. What the doctor meant when he wrote it was ‘we don’t know for definite if your AI is primary or secondary so I’m going to refer to it as possible’. But what all the other doctors treating me saw it as, was ‘you only maybe have adrenal insufficiency, you might not actually have it’. That, combined with ‘exogenous steroids’ means that a lot of doctors think ‘you’re a bit of a steroid addict, you should be tapering off your steroids and you don’t actually need them’. Which is completely wrong and is the exact opposite- I need the steroids to stay alive.

Which is also exactly what someone who’s addicted to something would say, isn’t it? This meant that my GP refused to prescribe them to me on more occasions than I can count. When I’m admitted to hospital, they refuse to give me them, or don’t understand why I need them at specific times. I’ve had to beg people, crying, for them, and started hiding them away and (pretty much) stockpiling them. I got good at working out which doctors were more likely to give me them and not ask questions, and learnt how the computer system worked if I put prescriptions in at certain times of the month.

Which is also like what an addict would do. But I wasn’t an addict. I did actually need them to survive, but that stupid phrase on my record meant I had to work the system because doctors were either ignorant or thought they had me sussed as an addict. I was forced into addict-like behaviour because my condition is too rare for anyone to understand it properly. Plus when you’re ill or under emotional stress, you need to increase your dose. What’s more stressful than saying to someone ‘without these drugs I will die pretty quickly’ for them to turn around and say ‘you do what you have to, dear, but I’m not giving you any more’?

Fast forward to now and my ‘new’ diagnosis of ‘isolated ACTH deficiency’. I did manage to convince someone to test my ACTH level, which came back as ‘untraceable’ and therefore not conclusively fitting in either the primary or secondary box when you combine it with my low cortisol. Technically the diagnosis is ‘secondary adrenal insufficiency from exogenous steroids or isolated ACTH deficiency’, but still. The isolated ACTH deficiency means my pituitary gland hasn’t completely broken and still makes some of the other hormones, but it doesn’t make ACTH. An adrenal antibodies test done recently (another one they missed off to start with) shows that I’m not primary, so combined with the ACTH test, we can conclusively decide I’m secondary AI. Hooray!

But we still don’t know if it’s because of the exogenous steroids or because I never made ACTH to start off with, and we’ll never know. Remember how I said if you take steroids, your body shuts off its own cortisol production? Well it also does the same with ACTH. Because I had to argue for years for the test, both my adrenal glands and pituitary could have got lazy and now won’t work properly even if they tried. They’ve wasted away (atrophied in medical words). If there was a point where I could have recovered function back by tapering off steroids, it’s gone now. It doesn’t matter how my AI was caused now, I have it for definite and the treatment is the same regardless of cause.

Isolated ACTH deficiency is pretty rare, so the fact that it’s written now as even an either/or diagnosis is a good thing. It means the ‘possible’ has been taken out, and shows that I *am* actually steroid dependent and should therefore not have to beg for steroids any more. It basically validates what I already knew to the medical world. And my new endo is really good and basically clears up any ambiguities in her letter.

So it’s a diagnosis in name. Nothing changes daily treatment wise for me. But I’m hoping it has a massive change on the way I get my treatment from healthcare professionals in the future.

Looking for ideas: what does progesterone do?

I keep sitting to write a blog post/mini rant about hormones but it ends up really long (and ramble-y!) so I’m going to try to keep it focussed to my main question.

What does progesterone do?

Bit of background: I’ve got adrenal insufficiency and take hydrocortisone to replace the fact I don’t make any cortisol. I also don’t make any ACTH. We’re assuming my AI is secondary but we don’t actually know because the hospital I was under at diagnosis really, really messed up. Now it’s a chicken and egg scenario- did my lack of cortisol mess up my ACTH production, or did I always have a pituitary problem, which caused my adrenal gland to get grumpy? In short, we don’t really know what hormones my adrenal and pituitary glands actually make, and I’ve been arguing with doctors for about 3 years to get them to check them. But it’s a bit like having a giant ball of yarn in a tangle and trying to unravel it. It goes against the grain to talk about hormones, but actually, I think this is why I’ve been having so many issues in researching/getting doctors to listen- we don’t talk about it enough.

I’m looking for ideas about the ‘female’* hormones in general, but specifically progesterone because I recently did a progesterone challenge test. The results came back as showing I don’t make progesterone, but I’m not menopausal or pregnant. So they don’t know why I don’t make progesterone. According to the consultant, the only reason women make progesterone is because it’s the body preparing to get pregnant. If your body knows you couldn’t sustain a pregnancy, it doesn’t make progesterone. I’d already kind of worked this out because I only have periods when I double or triple my steroids, in other words, I’ve suspected for a long time that my body needs a hell of a lot of cortisol to have a period, so when I’m on my baseline, it uses the cortisol to keep me alive rather than wasting it on periods. I’ve been on various versions of the pill, but none worked.

However, I’ve also been saying for a while that I feel like something else is stealing my cortisol. My reason for wanting all the hormone tests was if my body is deficient in something else, could it be stealing my cortisol that I’m replacing in tablet form to compensate for whatever else is missing? But, again, this is a chicken and egg scenario. I asked the consultant if it was possible that low progesterone meant my body was compensating elsewhere and using my cortisol instead, which meant low progesterone (beginning a never ending cycle)… he said I didn’t really need progesterone so it was ‘fine’.

But if I don’t need progesterone, why do they give it to menopausal people? And why do trans women report they have fewer mood swings and night sweats when they take it?

What I’ve learnt is that if you’re not menopausal or not trying to get pregnant, no one really knows or cares what it does. Which baffles me anyway, but is definitely a problem for me. How many other hormones could I be deficient in which ‘don’t matter’? Are they all stealing my hydrocortisone/cortisol? There’s so much stuff online which is fake news or people trying to sell their vitamins and supplements to people, it’s hard to narrow it down to what’s fact and what’s not.

Here’s what I’ve learnt about progesterone (briefly):

– Its primary function is to prepare the body to get pregnant

– it talks to and feedbacks to other female and male hormones

– if you don’t make progesterone, estrogen can become the dominant hormone which causes other problems

– people who have had menopause are at a higher risk of certain cancers, heart disease and start to develop brittle bones. Because they don’t make progesterone

– people going through menopause sometimes get put on hormone replacement therapy (HRT), which includes progesterone, because it helps alleviate some of the symptoms like night sweats and mood swings.

– there are some studies which suggest that taking progesterone improves symptoms of rheumatoid arthritis/joint pain

– anecdotally, trans women have found that taking progesterone along with estrogen helps them develop a more feminine figure because it helps redistribute fat in the body

So my main questions are:

If I don’t *need* progesterone, why do menopausal and trans women sometimes take it?

Does the fact I don’t make progesterone contribute to symptoms I currently have like night sweats and poor sleep, (seemingly) random bouts of anxiety/irritability, joint pain, brittle bones and water retention/gaining weight? All of these things have been ‘blamed’ on my steroids by doctors, but I actually have fewer of these symptoms when I take more steroids (maybe because I’ve got enough cortisol to make progesterone with?)

Could it be stealing my cortisol?

How does progesterone link with other hormones? What other hormones should I ask to be checked?

Like I said, early menopause has (apparently) been ruled out, despite having lots of those symptoms. And I’m having a hard time to convince my doctors to check hormones, so I almost need to be rationing out my requests. So I’m looking for ideas.

At this stage *any* random comment could potentially be helpful, whether it’s based on your experience or (even better) you’ve got a website or article I can read. A lot of my illnesses have been diagnosed by me coming across something by accident and doing many experiments on myself. Followed by many months of arguing to find that a lot of the time my hunch was right. Half of my useful research I found when googling it came as a result of me seeing a Ru Paul’s Drag Race advert on Netflix and thinking ‘oooo I wonder what hormones trans women take’

So I’d be extremely grateful if you can help! Do you know anything about progesterone and its role, particularly with pituitary function? Do you know which tests I should ask for in particular? If you don’t want to leave a public comment, please feel free to message me 🙂

Thanks if you can help! And if not, thanks for reading 🙂

* I refer to female and male hormones because those are the words doctors used when talking to me. However, I appreciate that everyone makes both types of hormones.