Well what's this, an actual pituitary update in my pituitary blog, whatever next.
It is now well over 3 years since my pituitary tumour bit the dust, and I am still under the watchful eye of my Endocrinologist. Making sure that my blood tests, replacement hormones and residual pituitary tumour are still in the shape he expects them to be. That's the thing with the NHS, they spend a lot of time and effort getting you diagnosed, a lot of time and effort to fix you, but then they don't just wave you out of the door and say "go get on with it"......no, in fact I have had so much follow up. Something you can't ignore in the value our NHS gives us. I have had countless blood tests, several MRI scans, visits to my Endocrinologist....all costing valuable time and money. All to make sure that I am in the best health I can be and that the tumour doesn't come back and bite me. I think that we perhaps take the NHS a bit too much for granted, but that's another story.
Here's another 'hidden' cost of my treatment. I am 'lucky' in that I have a condition that means I get free prescriptions - I assume it is because Hydrocortisone keeps me alive. This benefit isn't means tested, it is mine by right in the current system. This means I avoid the £8.40 every time I go to the chemist. I take 2 Hydrocortisone tablets every day, rarely a bit more than that. My prescription gives me 122 tablets every 2 months, there's 30 in a packet. So in simplistic terms, every year I would have had to pay 6 lots of £8.40.....not the end of the world to keep me alive. But unfortunately this drug is one of the one's that went 'generic' several years ago and far from saving the NHS money, it actually costs them a fortune. You can see from the link below my packet of Hydrocortisone actually costs the NHS £78.50
http://www.evidence.nhs.uk/formulary/bnf/current/6-endocrine-system/63-corticosteroids/632-glucocorticoid-therapy/hydrocortisone
So I pay nothing for my 3.5 packets of tablets each month, I could have paid £8.40 on a prescription, but the NHS pays £274.75 for 3.5 lots of £78.50. Scandalous! I understand on the continent the equivalent for a similar drug by a different manufacturer is only a few quid.
Anyway, rant over, what about me.
My PSA (Prostate-specific antigen) test was fine, my Testosterone levels are fine, my Cortisol is fine (I'd soon know if it wasn't) and my MRI scan shows that the residual amount of tumour left over has not grown at all since the last scan. So it is all good news. I will still be on 6 monthly check-ups until 5 years since tumour removal and then if all is still well, then I can get less regular check-ups and only go back if something is specifically worrying me, like vision changes or headaches (both a sign that the tumour could be re-growing).
So I don't have to worry about the pituitary side of things. Yes I still have to keep taking the (expensive) tablets and injections, and I still have to carry around my emergency Hydrocortisone injection kit, but that is just part of 'me' now. Fitness wise, I continue to creep ever forward, I'm still doing the Pilates, loads of walking and a bit of light weight training (I think the last one is more for vanity than anything else, but it makes me feel better). I sometimes forget that at my lowest ebb before diagnosis, I couldn't walk for 2 miles in half an hour without feeling faint....probably 2 miles would have taken 45 minutes not 30 minutes. But anyway, looking forward not back.
The future is bright.......
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Wednesday 31 August 2016
Tuesday 30 August 2016
August 2016 - Man vs Hedge year 4
Well, another bank holiday weekend, another Man vs Hedge blog post. You'd surely expect such an update by now. This years is going to be slightly different, because this year it isn't all about Cortisol it is more about accepting that sometimes the right tools for the job make all the difference.
This year I didn't have any issue with energy crashes, Cortisol lows or any of that nonsense. I adjusted my dosing appropriately so although I didn't take any extra during the day, but I did split my dosing differently and spread it through the day in smaller regular doses. In that respect, preparation and accepting that a change in dosing WOULD be necessary (not "might" be necessary, or "lets see how it goes"). Accepting that made life a whole lot easier.
But what made the whole task SO much easier this year was the use of a better ladder and a better hedge trimming device. Sadly Deb's dad passed away earlier this year, but he had a battery powered extendable hedge trimmer. We have our own corded electric hedge trimmer which never worked on our hedge, it made a right mess of it. So for years I used manual hedge shears as they did a much better job, I didn't expect any electric trimmer to be up to the job, conifer hedge seemed to immediately blunt our trimmer. But for whatever reason, I tried the 'new' hedge trimmer out and it was like a hot knife through butter, it was a complete revelation. Plus there was no trailing lead to a) have to plug in and get in the way and b) Deb didn't have to worry about me cutting through the power lead (I never worried about cutting through it obviously). Tools for the job pictured below:
I tried the new trimmer out just to see how it would fare, and rather than just "try it out" I ended up trimming about 40ft of the hedge so quickly it was amazing. So when it came to the bank holiday weekend just gone I managed to completely do all of the side and top of the hedge over 2 days. I did get a bit wet as it rained on the Saturday, but never mind. This also included a huge amount of next doors brambles which were becoming very invasive so I was really useful to be able to hack through them with the long hedge trimmer without needing to be too close and get tangled up in the thorns.
So I think the hedge is finally conquered and with the right tools it will be much easier to manage now. It might sound weird, but I have enjoyed my battles with the hedge over the years, but being able to just buzz straight through the growth is so much easier, particularly across the top - the top is probably 6 foot across, so only being 5 foot 6 tall and the hedge being around 7 foot tall it is normally quite a reach.
So maybe the last Man vs Hedge update? We'll see :-)
I have an Endocrinology appointment tomorrow, just a checkup to make sure everything is ticking along fine. I've had some blood tests and an MRI scan, so should get the results of those. I'm not expecting anything but good news, but may post a quick update later in the week.
Monday 1 August 2016
July 2016 - A sharp scratch
My latest post is pituitary related because it regards a journey made whilst I was having loads of pituitary related blood tests, but this post is not directly about pituitary issues but about overcoming the fear of needles, of both injections and blood taking. The fear of many things isn't necessarily rational but scary nonetheless. Also I have been reading a book called The Chimp Paradox by Prof. Steve Peters and I realise that I absolutely used his techniques but before I had even read his book. The purpose of writing this piece is in the hope it might help someone, showing how I overcame my fear and hope it helps someone else do the same.
The mainstay of The Chimp Paradox book is of course the Chimp part of the mind, it is an emotional and irrational beast. The book also talks about the human and the computer parts of the brain. The human is us and the computer is where we can store things that both the Chimp and the human can reference to help them make sense of the world. Essentially you program things into your 'computer' so they become the 'norm' and then when an event happens the pre-programming takes over. I don't usually read self-help type books but the Chimp Paradox is a very good one and although I haven't read it all yet, I have gone over the parts I have read several times.
For me, when I used to have blood tests I used to nearly pass out. I don't really know why I used to fear the blood test so much, it wasn't like I had good reason to, I'd never had a bad experience. Prior to 2013 when my pituitary journey kicked off, I had very few blood tests as I had no long term medical conditions. My main fears were:
Just typing the above out makes the whole thing seem ridiculous, but that is what I felt. So in 2013 when the blood taking was very frequent it was pretty inconvenient to keep feeling this way. By the time I had come out of hospital for the 2nd time in June 2013, I had already started to be de-sensitised by blood taking, but I was still scared. I suddenly realised that I had a chance to put this right, I had some real hard evidence about what this blood taking was doing to me. That is, not a lot really!
So I sat myself down and wrote out some of the above statements about blood tests and what they meant to me (the list was a bit longer than the above) and I looked them all through and spoke out loud to myself. "Did my arm actually drop off at any point", "did I bleed uncontrollably"...... As you may guess, the answer was "no" to every question. It is true that I did bruise a bit on quite a few occasions, but even so, no permanent damage was done. I felt I had to get this evidence clear in my head.
It took quite a while for me to go through all my silly statements and rationalise them. What I was doing was essentially programming my computer with facts. Previously all the irrational stuff was coming from the Chimp.....all those statements about my arm falling off were emotional things, the Chimp ruling my mind and telling me lots of falsehoods. Getting some facts programmed into my 'computer' helped me settle the Chimp down and me too. I started going to blood tests much calmer, knowing that actually if I just relaxed things would be much better. The "sharp scratch" actually did become less painful (I'm not sure if that was a physical thing or a mental thing) and I pretty much never bruise now, I'm convinced this is because I am more relaxed. I also think that even though the phlebotomists that I see are very good, I think it must put them under pressure if they see someone stressing out in front of them.
There was a further complication, in that when I was in hospital I had to face an extension of blood taking, which was having cannulas inserted into various parts of my hand/arm/leg. This was actually far worse than the injection, because these needles lived inside your veins for ages. I do still struggle with the cannula concept a bit, but again I have evidence that they didn't kill me. So I had to do the facts-based chat with myself on this subject too.
So for me, confronting my fear with loads of facts based on experience of what had happened in a couple of dozen blood tests and getting those facts embedded in my brain is what took away my fear of needles. Don't get me wrong, I don't breeze into the blood clinic shouting "whoopee, a blood test", but I view a blood test now as very much a transactional thing. Nothing to worry about. It has completely transformed this part of my life.
Of course the above tips won't work for everyone, perhaps I was lucky. If you hate needles, it is worth trying to understand exactly why and then try and confront those fears with some facts based on some evidence of what has actually happened to you. You never know, you might end up like me, a more sane person when faced with the sharp scratch.
The mainstay of The Chimp Paradox book is of course the Chimp part of the mind, it is an emotional and irrational beast. The book also talks about the human and the computer parts of the brain. The human is us and the computer is where we can store things that both the Chimp and the human can reference to help them make sense of the world. Essentially you program things into your 'computer' so they become the 'norm' and then when an event happens the pre-programming takes over. I don't usually read self-help type books but the Chimp Paradox is a very good one and although I haven't read it all yet, I have gone over the parts I have read several times.
For me, when I used to have blood tests I used to nearly pass out. I don't really know why I used to fear the blood test so much, it wasn't like I had good reason to, I'd never had a bad experience. Prior to 2013 when my pituitary journey kicked off, I had very few blood tests as I had no long term medical conditions. My main fears were:
- The blood test site wouldn't stop bleeding and I would bleed to death
- My arm would somehow not cope and drop off
- It would be REALLY painful
- After the blood taking I felt I could barely use my arm as I was convinced I would start it bleeding
- Some kind of long term damage would have occurred
Just typing the above out makes the whole thing seem ridiculous, but that is what I felt. So in 2013 when the blood taking was very frequent it was pretty inconvenient to keep feeling this way. By the time I had come out of hospital for the 2nd time in June 2013, I had already started to be de-sensitised by blood taking, but I was still scared. I suddenly realised that I had a chance to put this right, I had some real hard evidence about what this blood taking was doing to me. That is, not a lot really!
So I sat myself down and wrote out some of the above statements about blood tests and what they meant to me (the list was a bit longer than the above) and I looked them all through and spoke out loud to myself. "Did my arm actually drop off at any point", "did I bleed uncontrollably"...... As you may guess, the answer was "no" to every question. It is true that I did bruise a bit on quite a few occasions, but even so, no permanent damage was done. I felt I had to get this evidence clear in my head.
It took quite a while for me to go through all my silly statements and rationalise them. What I was doing was essentially programming my computer with facts. Previously all the irrational stuff was coming from the Chimp.....all those statements about my arm falling off were emotional things, the Chimp ruling my mind and telling me lots of falsehoods. Getting some facts programmed into my 'computer' helped me settle the Chimp down and me too. I started going to blood tests much calmer, knowing that actually if I just relaxed things would be much better. The "sharp scratch" actually did become less painful (I'm not sure if that was a physical thing or a mental thing) and I pretty much never bruise now, I'm convinced this is because I am more relaxed. I also think that even though the phlebotomists that I see are very good, I think it must put them under pressure if they see someone stressing out in front of them.
There was a further complication, in that when I was in hospital I had to face an extension of blood taking, which was having cannulas inserted into various parts of my hand/arm/leg. This was actually far worse than the injection, because these needles lived inside your veins for ages. I do still struggle with the cannula concept a bit, but again I have evidence that they didn't kill me. So I had to do the facts-based chat with myself on this subject too.
So for me, confronting my fear with loads of facts based on experience of what had happened in a couple of dozen blood tests and getting those facts embedded in my brain is what took away my fear of needles. Don't get me wrong, I don't breeze into the blood clinic shouting "whoopee, a blood test", but I view a blood test now as very much a transactional thing. Nothing to worry about. It has completely transformed this part of my life.
Of course the above tips won't work for everyone, perhaps I was lucky. If you hate needles, it is worth trying to understand exactly why and then try and confront those fears with some facts based on some evidence of what has actually happened to you. You never know, you might end up like me, a more sane person when faced with the sharp scratch.
Sunday 8 May 2016
May 2016 - why have a pituitary blog?
I was reminded today that I have a blog - one that I started nearly 3 years ago when I was first diagnosed with my pituitary tumour. But why did I start it?
Well I think at the time, it was cathartic. I had a lot on my mind and I decided that writing it down might help me make sense of all that was going on. After all, I had just had my first ever stay in hospital, my first ever surgery and my first ever tumour! I had never kept a diary, and still don't, so sharing my inner-most feelings wasn't a natural thing to do for me. But once the words started flowing I decided why not make them into a blog. Which indeed I did.
My initial reasons once the first few posts had come out, was that actually it made keeping friends and family updated really much easier. They could read my blog and see how I was doing, so it took away those awkward conversations where someone was not sure what to say in case they got it wrong. They could read the blog, see that I'd been having a hard time and get straight to the point. But then I realised as the weeks ticked by, it really helped at a practical level to look back and see what happened and when. Often I'd think "when was that appointment" or "what exactly happened at that point" - and there it all is captured in my blog.
I know for sure now if I hadn't written it all down, whether in a diary or a blog, I would have forgotten some elements of the story and although it might sound a weird thing to want to remember, it does help make sense of events in the here and now. Something of which I will come onto in a moment.
I also had the grand idea that writing this all down and putting it on the Internet might actually help someone. I've had various conversations in the last 3 years that prove on a few occasions it has indeed been helpful for people. That I am pleased with, certainly when I started Googling my symptoms soon after it first was reported that I either had a pituitary tumour or something wrong with my adrenal glands, I found web pages that talked factually about the conditions. But what I did not find so easily was 'real people' who had the condition and how it made them feel. Searching now only 3 years later, I do see more such blogs and I am much more into Twitter now and much feedback can be found there too.
So if you are reading this blog, then I hope I am making sense :-)
So even now, can my blog help me see something that I might not otherwise have done? Well yes, it can. I had a brief Twitter conversation with someone (hi @hwganendodoc !) who had just found the blog, so it made me go back and have a look at a few of my early posts, these two in fact:
My hospital stay after my pituitary operation
http://chpituitarytumourblog.blogspot.co.uk/2013/07/may-2013-hospital-stay.html
The events leading up to my 2nd stay in hospital
http://chpituitarytumourblog.blogspot.co.uk/2013/07/june-2013-another-trip-to-hospital.html
So, post number 1 was a very scary time, no doubt about that. But although it signalled a difficult time for me, the overall feeling looking back on that time was that it was about healing and getting better. Getting better from something I barely knew I even had, bearing in mind I only had my MRI scan on 18th May and on the 28th May I had the operation to remove the tumour. All a bit of a whirlwind. But it was a positive period of time, fixing me up and looking forwards.
Post number 2 is altogether different. It is about living with Adrenal Insufficiency. The harsh fact, which I often overlook, is that my pituitary gland was damaged by the tumour and as a result will probably never fully work again. This means I do not produce enough of my own Cortisol and have to take Hydrocortisone tablets on a daily basis. I don't really think about it that much, pop some pills every day and that is that. I know that if I stopped taking the tablets I would get ill, which of course I wouldn't do on purpose. But when you get unwell, as I did in the events leading up to my 2nd hospital stay, adrenal insufficiency can turn something quite innocuous into something life threatening.
Now it really stops me in my tracks typing that last sentence, because I don't think of myself as having a life threatening condition. But reading back my post from that hospital admission and chatting it through with my wife earlier, really made me remember just how unwell I was. "All" I had wrong with me on the surface was a throat infection (sinusitis and pharangitis) nothing that a few paracetamol wouldn't cure. However, in a 'normal' person their body would also trigger a very clever endocrine system into action. The body would recognise that it was under stress from an infection and the pituitary gland would tell the adrenal glands to pump out cortisol and keep on doing it until the body reported back to the pituitary gland that all was well, and to pack it in (a feedback loop). However, my body didn't do that, so a simple infection put me in hospital.
I realise now that the sickness and diarrhoea I had was actually my body not coping and having an addisonian or adrenal crisis. The fact I can't remember a fair bit from that day (so my wife tells me), the fact that when she spoke to the doctor on the out of hours service about what was happening he immediately phoned A&E and booked me a bed and told my wife to drive me immediately to hospital was a pretty big clue. The fact that when I got to hospital I was immediately put on IV antibiotics and fluids, that I also had hyponatremia and partial renal failure don't paint a particularly good picture of the day.
So what reading my own blog has helped me realise is that although I'm not going to worry about my condition any more than I have been for the last 3 years, I most certainly should not take for granted what needs to happen if I feel myself getting into an adrenal crisis. I carry quite a few Hydrocortisone tablets around with me and I carry my emergency steroid injection kit with me too.
If you are still reading by now, and have adrenal insufficiency and you haven't got an injection kit - blooming well get one! This is something I have read quite a few times from patients, they have been diagnosed with adrenal insufficiency (even primary AI, Addison's Disease) and have been several months without an injection kit. I can't overstate how much you should get one. I've never had to use mine yet, but I'm guessing it will happen one day, or my wife will have to use it on me. If I had an injection kit way back in June 2013, would my outcome have been any different, who knows. Speak to your endocrinology team and I'm sure they will sort you out with a kit, don't rely on your trusty GP to know you need an injection kit, GP's are absolutely brilliant, but you may be the only AI person in the entire population of their patients, so they may not be as clued up as your endocrine team.
What I most certainly know now, is that after my first stay in hospital I started to recover quite quickly given the operation I had just had. But during and after my 2nd stay in hospital I felt really really awful. It took much longer to recover from an AI event than it did from major skull-base surgery. If that last fact doesn't drive it home to me then nothing will.
So there, that is another blog I've got off my chest.
For the 3rd anniversary of my pituitary tumour operation I shall raise a glass to the event from somewhere in the Mediterranean sea, on a cruise ship.
Cheers!
Well I think at the time, it was cathartic. I had a lot on my mind and I decided that writing it down might help me make sense of all that was going on. After all, I had just had my first ever stay in hospital, my first ever surgery and my first ever tumour! I had never kept a diary, and still don't, so sharing my inner-most feelings wasn't a natural thing to do for me. But once the words started flowing I decided why not make them into a blog. Which indeed I did.
My initial reasons once the first few posts had come out, was that actually it made keeping friends and family updated really much easier. They could read my blog and see how I was doing, so it took away those awkward conversations where someone was not sure what to say in case they got it wrong. They could read the blog, see that I'd been having a hard time and get straight to the point. But then I realised as the weeks ticked by, it really helped at a practical level to look back and see what happened and when. Often I'd think "when was that appointment" or "what exactly happened at that point" - and there it all is captured in my blog.
I know for sure now if I hadn't written it all down, whether in a diary or a blog, I would have forgotten some elements of the story and although it might sound a weird thing to want to remember, it does help make sense of events in the here and now. Something of which I will come onto in a moment.
I also had the grand idea that writing this all down and putting it on the Internet might actually help someone. I've had various conversations in the last 3 years that prove on a few occasions it has indeed been helpful for people. That I am pleased with, certainly when I started Googling my symptoms soon after it first was reported that I either had a pituitary tumour or something wrong with my adrenal glands, I found web pages that talked factually about the conditions. But what I did not find so easily was 'real people' who had the condition and how it made them feel. Searching now only 3 years later, I do see more such blogs and I am much more into Twitter now and much feedback can be found there too.
So if you are reading this blog, then I hope I am making sense :-)
So even now, can my blog help me see something that I might not otherwise have done? Well yes, it can. I had a brief Twitter conversation with someone (hi @hwganendodoc !) who had just found the blog, so it made me go back and have a look at a few of my early posts, these two in fact:
My hospital stay after my pituitary operation
http://chpituitarytumourblog.blogspot.co.uk/2013/07/may-2013-hospital-stay.html
The events leading up to my 2nd stay in hospital
http://chpituitarytumourblog.blogspot.co.uk/2013/07/june-2013-another-trip-to-hospital.html
So, post number 1 was a very scary time, no doubt about that. But although it signalled a difficult time for me, the overall feeling looking back on that time was that it was about healing and getting better. Getting better from something I barely knew I even had, bearing in mind I only had my MRI scan on 18th May and on the 28th May I had the operation to remove the tumour. All a bit of a whirlwind. But it was a positive period of time, fixing me up and looking forwards.
Post number 2 is altogether different. It is about living with Adrenal Insufficiency. The harsh fact, which I often overlook, is that my pituitary gland was damaged by the tumour and as a result will probably never fully work again. This means I do not produce enough of my own Cortisol and have to take Hydrocortisone tablets on a daily basis. I don't really think about it that much, pop some pills every day and that is that. I know that if I stopped taking the tablets I would get ill, which of course I wouldn't do on purpose. But when you get unwell, as I did in the events leading up to my 2nd hospital stay, adrenal insufficiency can turn something quite innocuous into something life threatening.
Now it really stops me in my tracks typing that last sentence, because I don't think of myself as having a life threatening condition. But reading back my post from that hospital admission and chatting it through with my wife earlier, really made me remember just how unwell I was. "All" I had wrong with me on the surface was a throat infection (sinusitis and pharangitis) nothing that a few paracetamol wouldn't cure. However, in a 'normal' person their body would also trigger a very clever endocrine system into action. The body would recognise that it was under stress from an infection and the pituitary gland would tell the adrenal glands to pump out cortisol and keep on doing it until the body reported back to the pituitary gland that all was well, and to pack it in (a feedback loop). However, my body didn't do that, so a simple infection put me in hospital.
I realise now that the sickness and diarrhoea I had was actually my body not coping and having an addisonian or adrenal crisis. The fact I can't remember a fair bit from that day (so my wife tells me), the fact that when she spoke to the doctor on the out of hours service about what was happening he immediately phoned A&E and booked me a bed and told my wife to drive me immediately to hospital was a pretty big clue. The fact that when I got to hospital I was immediately put on IV antibiotics and fluids, that I also had hyponatremia and partial renal failure don't paint a particularly good picture of the day.
So what reading my own blog has helped me realise is that although I'm not going to worry about my condition any more than I have been for the last 3 years, I most certainly should not take for granted what needs to happen if I feel myself getting into an adrenal crisis. I carry quite a few Hydrocortisone tablets around with me and I carry my emergency steroid injection kit with me too.
If you are still reading by now, and have adrenal insufficiency and you haven't got an injection kit - blooming well get one! This is something I have read quite a few times from patients, they have been diagnosed with adrenal insufficiency (even primary AI, Addison's Disease) and have been several months without an injection kit. I can't overstate how much you should get one. I've never had to use mine yet, but I'm guessing it will happen one day, or my wife will have to use it on me. If I had an injection kit way back in June 2013, would my outcome have been any different, who knows. Speak to your endocrinology team and I'm sure they will sort you out with a kit, don't rely on your trusty GP to know you need an injection kit, GP's are absolutely brilliant, but you may be the only AI person in the entire population of their patients, so they may not be as clued up as your endocrine team.
What I most certainly know now, is that after my first stay in hospital I started to recover quite quickly given the operation I had just had. But during and after my 2nd stay in hospital I felt really really awful. It took much longer to recover from an AI event than it did from major skull-base surgery. If that last fact doesn't drive it home to me then nothing will.
So there, that is another blog I've got off my chest.
For the 3rd anniversary of my pituitary tumour operation I shall raise a glass to the event from somewhere in the Mediterranean sea, on a cruise ship.
Cheers!
Sunday 7 February 2016
February 2016 - 3 years have passed
I noticed that it is nearly 3 years since my initial blood test that flagged my low Cortisol. The blood test was on 7th February 2013 and the doctor rang me (actually my wife) on the 8th February causing panic in the Hall household. 3 whole years, what a lot has happened in that time.
I still think back to all the complications that I had and ignored prior to that bloodtest, such as the near passing out, the strange vision issues and the lack of body hair. But 3 years on, the life I now lead is much healthier with the right hormones within me - it is amazing what a difference two daily tiny Hydrocortisone tablets per day can make to a person. For me the main difference being much more being mentally alert and not having panic attacks and nearly fainting due to low blood pressure. Just those two tablets to keep me going, it is a minor miracle of modern science really.....not that long ago - maybe 100 years - I may not have been so lucky. Actually just looked it up on Google, it seems Hydrocortisone was only invented in the 1940's by this man https://en.wikipedia.org/wiki/Percy_Lavon_Julian
The biggest difficulty I face, and anyone replacing hormones faces, is trying to mimic the way the body would naturally produce Cortisol. It is still a bit of a mystery to me and to medical science, under exactly what circumstances the body will pump out Cortisol. Yes there are definite instances such as stress and infection that causes a raised Cortisol output, but for me I can still hit a Cortisol low unexpectedly, when the body has decided to burn through a tablet dose quicker than usual. Recently having faced bereavement of a loved one (my father in law) this was of course expected, the brain is going through a lot of hard work and amending my dosing regime is understandable and warranted.
Actually I didn't need to take extra doses, but I needed to amend the times. I normally take a dose on waking which is around 7am weekdays and 8am at the weekends and then around 12:30 to 13:00 and around 18:00 for the final dose. Instead although I still take the first dose at the same time, I take the lunchtime dose at the time I NEED it. That may sound strange to anyone who hasn't got adrenal insufficiency, but essentially I take my next dose when my body says 'enough', which this last week or so has been around 11:30 to 12:00. Then my 'teatime' dose gets taken again when my body asks for it, which for instance today was around 16:15. I have learned that Hydrocortisone stays in the body for around 5 hours. So 8am until 13:00 is 5 hours, but today with the extra work and stress I'm putting my body and mind through I burned through it quicker. I find that in the evenings when I am less physically active I get by without issue - sitting here now at 21:45, five and a half hours after my last dose I feel fine. I seem to have a greater tolerance in the evenings, and I don't wake up dragging my knuckles across the floor either, or else I'd consider slipping in an extra dose. I will have to monitor myself closely on Tuesday though, that is the day of my father in laws funeral.....never been through one of those whilst on Hydrocortisone - it is going to be a long day!
So all in all, the last 3 years has been eventful, but I am in a good place. Let's hope it stays that way.
I still think back to all the complications that I had and ignored prior to that bloodtest, such as the near passing out, the strange vision issues and the lack of body hair. But 3 years on, the life I now lead is much healthier with the right hormones within me - it is amazing what a difference two daily tiny Hydrocortisone tablets per day can make to a person. For me the main difference being much more being mentally alert and not having panic attacks and nearly fainting due to low blood pressure. Just those two tablets to keep me going, it is a minor miracle of modern science really.....not that long ago - maybe 100 years - I may not have been so lucky. Actually just looked it up on Google, it seems Hydrocortisone was only invented in the 1940's by this man https://en.wikipedia.org/wiki/Percy_Lavon_Julian
The biggest difficulty I face, and anyone replacing hormones faces, is trying to mimic the way the body would naturally produce Cortisol. It is still a bit of a mystery to me and to medical science, under exactly what circumstances the body will pump out Cortisol. Yes there are definite instances such as stress and infection that causes a raised Cortisol output, but for me I can still hit a Cortisol low unexpectedly, when the body has decided to burn through a tablet dose quicker than usual. Recently having faced bereavement of a loved one (my father in law) this was of course expected, the brain is going through a lot of hard work and amending my dosing regime is understandable and warranted.
Actually I didn't need to take extra doses, but I needed to amend the times. I normally take a dose on waking which is around 7am weekdays and 8am at the weekends and then around 12:30 to 13:00 and around 18:00 for the final dose. Instead although I still take the first dose at the same time, I take the lunchtime dose at the time I NEED it. That may sound strange to anyone who hasn't got adrenal insufficiency, but essentially I take my next dose when my body says 'enough', which this last week or so has been around 11:30 to 12:00. Then my 'teatime' dose gets taken again when my body asks for it, which for instance today was around 16:15. I have learned that Hydrocortisone stays in the body for around 5 hours. So 8am until 13:00 is 5 hours, but today with the extra work and stress I'm putting my body and mind through I burned through it quicker. I find that in the evenings when I am less physically active I get by without issue - sitting here now at 21:45, five and a half hours after my last dose I feel fine. I seem to have a greater tolerance in the evenings, and I don't wake up dragging my knuckles across the floor either, or else I'd consider slipping in an extra dose. I will have to monitor myself closely on Tuesday though, that is the day of my father in laws funeral.....never been through one of those whilst on Hydrocortisone - it is going to be a long day!
So all in all, the last 3 years has been eventful, but I am in a good place. Let's hope it stays that way.
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