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.
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Sunday, 7 February 2016
Sunday, 6 September 2015
September 2015 - Man vs Hedge year 3
Well, you might imagine that after all this time, I'd have mastered the art of hedging wouldn't you. Not quite.
As it was bank holiday weekend last week, it was the traditional hedge cutting weekend, but in fact it was never going to be that much of a hedge weekend because in fact I needed to spend time around my Dad's house clearing it out before the final house clearance on Thursday last week. So I only had one day at cracking the hedge and one day was never going to be enough to do it all. So in my own inevitable way I went at it with some vigour.
The good thing was that following last years false start when the shears I was using proved utterly useless we bought some new one's and these came out of the shed in pristine condition, razor sharp and raring to go. So I did the main face of the hedge and hacked away at it with quite some speed. In fact within about 3 hours I had completely finished the whole side of the hedge. It was a never seen before feat to be honest, I felt absolutely fine and a massive bag of conifer rubbish was produced in no time. Definitely a sign that my body was fitter than it was and my Cortisol was lasting pretty well.
On the Cortisol front, I haven't had a serious energy crash since I can't remember when exactly, I think it must have been early June. The hedge activity became a subject of my yearly blog because it was the one thing absolutely guaranteed to run me out of Cortisol but it certainly didn't on this occasion. However, the hedge wasn't finished yet....so it could prove to bite me before the end. But the big positive is the way my Cortisol levels are holding up no matter what I throw at my body and this is good news. I'm not exactly sure why, but I assume my body is used to the Hydrocortisone regime I have got myself in and the drug is being absorbed correctly.
So today was another few hours, and whilst doing the side of the hedge would have done me in once upon a time, the top of the hedge is an absolutely killer. When freshly cut the hedge is about 6.5 feet tall, it puts on between 1 to 2 feet every year and more than that in places. I am 5 foot 6. So there I am balanced up a ladder leaning across the top of this hedge with secateurs, pruning saw, lopping shears and a 'long-arm' aluminium pole trimmer thing. It is physically tiring at the best of times and this time although I didn't have a full on Cortisol crash I did start to feel the beginnings of one. So a sit down mid afternoon with a bite to eat and a cold drink (squash!) and I got though to my tea-time dose of Hydrocortisone without a big deal. It was a close call between being normally worn out and a Cortisol event. But I didn't push it and stopped at around 4.30pm and took the spoils to the tip. The top of the hedge still isn't finished, but there was significant growth, so not surprising. Growth not just of the hedge, but of ivy and next doors brambles growing up through the hedge.
So the hedge does take a slight win today, with my win on the bank holiday weekend, we'll have to call it 1-1. With all to play for when the final part of the top is done, maybe this coming weekend depending on the weather.
So the learning? I still need to get a bit fitter!
As it was bank holiday weekend last week, it was the traditional hedge cutting weekend, but in fact it was never going to be that much of a hedge weekend because in fact I needed to spend time around my Dad's house clearing it out before the final house clearance on Thursday last week. So I only had one day at cracking the hedge and one day was never going to be enough to do it all. So in my own inevitable way I went at it with some vigour.
The good thing was that following last years false start when the shears I was using proved utterly useless we bought some new one's and these came out of the shed in pristine condition, razor sharp and raring to go. So I did the main face of the hedge and hacked away at it with quite some speed. In fact within about 3 hours I had completely finished the whole side of the hedge. It was a never seen before feat to be honest, I felt absolutely fine and a massive bag of conifer rubbish was produced in no time. Definitely a sign that my body was fitter than it was and my Cortisol was lasting pretty well.
On the Cortisol front, I haven't had a serious energy crash since I can't remember when exactly, I think it must have been early June. The hedge activity became a subject of my yearly blog because it was the one thing absolutely guaranteed to run me out of Cortisol but it certainly didn't on this occasion. However, the hedge wasn't finished yet....so it could prove to bite me before the end. But the big positive is the way my Cortisol levels are holding up no matter what I throw at my body and this is good news. I'm not exactly sure why, but I assume my body is used to the Hydrocortisone regime I have got myself in and the drug is being absorbed correctly.
So today was another few hours, and whilst doing the side of the hedge would have done me in once upon a time, the top of the hedge is an absolutely killer. When freshly cut the hedge is about 6.5 feet tall, it puts on between 1 to 2 feet every year and more than that in places. I am 5 foot 6. So there I am balanced up a ladder leaning across the top of this hedge with secateurs, pruning saw, lopping shears and a 'long-arm' aluminium pole trimmer thing. It is physically tiring at the best of times and this time although I didn't have a full on Cortisol crash I did start to feel the beginnings of one. So a sit down mid afternoon with a bite to eat and a cold drink (squash!) and I got though to my tea-time dose of Hydrocortisone without a big deal. It was a close call between being normally worn out and a Cortisol event. But I didn't push it and stopped at around 4.30pm and took the spoils to the tip. The top of the hedge still isn't finished, but there was significant growth, so not surprising. Growth not just of the hedge, but of ivy and next doors brambles growing up through the hedge.
So the hedge does take a slight win today, with my win on the bank holiday weekend, we'll have to call it 1-1. With all to play for when the final part of the top is done, maybe this coming weekend depending on the weather.
So the learning? I still need to get a bit fitter!
Sunday, 12 July 2015
July 2015 - Latest check and update
Well hello there.
This year is rushing past, I can't believe it is nearly mid-July. I love this time of year and don't want to it move past this point, but such is life!
This Friday 10th July, I had an endocrine MOT - time to go and review my body's performance over the last few months. In the last few weeks I've had some blood tests and an MRI scan to check the pesky tumour is still behaving itself. The short story is that I'm doing fine and everything is doing very well - which to be honest is fantastic news. I didn't really stress about it beforehand, but when your consultant says to you all the good things, you can't help but be a bit relieved. In fact I had probably underestimated how much of a relief it was, silly really but only natural I suppose. There were a couple of main reasons....
1. The eye
As I have reported before, I have slightly more fuzzy vision in my left eye. I noticed this last year when I had some new glasses made up and I think in the back of my mind it was either because the pituitary tumour had damaged my optic nerve previously or in fact because it was regrowing and starting to squash my optic nerve again. Now the latter scenario was pretty unlikely because in early 2014 my MRI scan showed that there was only a small residue of tumour left. The chances of that getting so large in a little over a year that it would once again impinge on my optic nerve was pretty slim, although not impossible. So hearing from my consultant that they had compared the 2014 scans against the latest scans and detected no change in the amount of residue tumour left, was very good news.
I think I have sussed the eye thing out now. It probably was damaged by the tumour pressing on the optic nerve, the damage was done before I even realised. After the operation the focus (no pun intended) was on my visual fields and sorting my hormone balance out. Not my actual vision. So life went on, I had got used to the vision I had. Then during late 2014, I had my eyes checked and changed prescription and at that point expecting better vision realised that my vision was still a bit blurred in the left eye. So only at this point did I really notice it. The good news is that the eye consultant doesn't think it is degenerative, it is just damage that occurred and that's that....and if he is right then it's fine. I'd rather not have the damage, but I have grown accustomed to my eyesight now and it hasn't got any worse since I've noticed it. So I will go back to the opticians at some point and see if they can tweak my prescription to get me a bit better. It is amazing how the brain can compensate though, looking out of both eyes I rarely notice anything. It is only when you cover the right eye up and really focus (pun intended) on my vision that I realise it isn't quite up to par. So now's the time to move on and forget it I think!
2. The fear
I think the fear will always be there, these tumours can regrow. But they are benign and I am being monitored regularly, so even if it does regrow it isn't going to get as big as it did before and cause as much as of an issue as it did. So a valid worry, but not one I'll lose a lot of sleep over
Overall though I have been feeling REALLY well. It is something we all hesitate to say because we perhaps believe as soon as we say it out loud the gods of 'sods law' will crash down upon us and bring in a reality check. Well there you go, I've said it out loud now, although I did wait until I passed my MOT. I'm not sure exactly why, but as soon as I went on holiday in early June, I haven't had one cortisol related energy crash. I was having them fairly regularly ever since, well ever since for years.....it is only since mid-2013 I've realised what they are. The only thing I have changed is having my morning dose a bit earlier, as soon as I get up and before my breakfast rather than after my breakfast. It isn't long, probably 30-40 minutes difference in dose time. I try to do the same with my lunchtime dose. Can it really make this much difference, who knows, but I haven't changed anything else. This has spurred me on to get a bit fitter still if I can, I'm not going to go mad, but if my body is up for a bit more then I'm going to push it a bit harder and see what happens.
Blood test wise I'm also on track. I've been having Testosterone injections since late last year instead of the gel and they seem to be working fine as well as being much more convenient than rubbing gel on every day. Apart from the inconvenience, the gel was also beginning to really irritate my skin, so the injection makes more sense. It does spike my testo levels somewhat, because you go on a steady downwards curve for the 10 weeks the injection lasts, then 'boof' you have the injection and the levels whoosh up. It is a bit sore in the bum-cheek for a couple of days too, but nothing too bad (I have to moan a bit, I'm a man). My latest testo graph did make me smile a bit, I have had 3 blood tests at the end of the 10 week periods to check the hormone levels, and the most recent test was just after the injection - obviously levels were going to be a lot higher. Check out that zero reading back in February 2013!
This year is rushing past, I can't believe it is nearly mid-July. I love this time of year and don't want to it move past this point, but such is life!
This Friday 10th July, I had an endocrine MOT - time to go and review my body's performance over the last few months. In the last few weeks I've had some blood tests and an MRI scan to check the pesky tumour is still behaving itself. The short story is that I'm doing fine and everything is doing very well - which to be honest is fantastic news. I didn't really stress about it beforehand, but when your consultant says to you all the good things, you can't help but be a bit relieved. In fact I had probably underestimated how much of a relief it was, silly really but only natural I suppose. There were a couple of main reasons....
1. The eye
As I have reported before, I have slightly more fuzzy vision in my left eye. I noticed this last year when I had some new glasses made up and I think in the back of my mind it was either because the pituitary tumour had damaged my optic nerve previously or in fact because it was regrowing and starting to squash my optic nerve again. Now the latter scenario was pretty unlikely because in early 2014 my MRI scan showed that there was only a small residue of tumour left. The chances of that getting so large in a little over a year that it would once again impinge on my optic nerve was pretty slim, although not impossible. So hearing from my consultant that they had compared the 2014 scans against the latest scans and detected no change in the amount of residue tumour left, was very good news.
I think I have sussed the eye thing out now. It probably was damaged by the tumour pressing on the optic nerve, the damage was done before I even realised. After the operation the focus (no pun intended) was on my visual fields and sorting my hormone balance out. Not my actual vision. So life went on, I had got used to the vision I had. Then during late 2014, I had my eyes checked and changed prescription and at that point expecting better vision realised that my vision was still a bit blurred in the left eye. So only at this point did I really notice it. The good news is that the eye consultant doesn't think it is degenerative, it is just damage that occurred and that's that....and if he is right then it's fine. I'd rather not have the damage, but I have grown accustomed to my eyesight now and it hasn't got any worse since I've noticed it. So I will go back to the opticians at some point and see if they can tweak my prescription to get me a bit better. It is amazing how the brain can compensate though, looking out of both eyes I rarely notice anything. It is only when you cover the right eye up and really focus (pun intended) on my vision that I realise it isn't quite up to par. So now's the time to move on and forget it I think!
2. The fear
I think the fear will always be there, these tumours can regrow. But they are benign and I am being monitored regularly, so even if it does regrow it isn't going to get as big as it did before and cause as much as of an issue as it did. So a valid worry, but not one I'll lose a lot of sleep over
Overall though I have been feeling REALLY well. It is something we all hesitate to say because we perhaps believe as soon as we say it out loud the gods of 'sods law' will crash down upon us and bring in a reality check. Well there you go, I've said it out loud now, although I did wait until I passed my MOT. I'm not sure exactly why, but as soon as I went on holiday in early June, I haven't had one cortisol related energy crash. I was having them fairly regularly ever since, well ever since for years.....it is only since mid-2013 I've realised what they are. The only thing I have changed is having my morning dose a bit earlier, as soon as I get up and before my breakfast rather than after my breakfast. It isn't long, probably 30-40 minutes difference in dose time. I try to do the same with my lunchtime dose. Can it really make this much difference, who knows, but I haven't changed anything else. This has spurred me on to get a bit fitter still if I can, I'm not going to go mad, but if my body is up for a bit more then I'm going to push it a bit harder and see what happens.
Blood test wise I'm also on track. I've been having Testosterone injections since late last year instead of the gel and they seem to be working fine as well as being much more convenient than rubbing gel on every day. Apart from the inconvenience, the gel was also beginning to really irritate my skin, so the injection makes more sense. It does spike my testo levels somewhat, because you go on a steady downwards curve for the 10 weeks the injection lasts, then 'boof' you have the injection and the levels whoosh up. It is a bit sore in the bum-cheek for a couple of days too, but nothing too bad (I have to moan a bit, I'm a man). My latest testo graph did make me smile a bit, I have had 3 blood tests at the end of the 10 week periods to check the hormone levels, and the most recent test was just after the injection - obviously levels were going to be a lot higher. Check out that zero reading back in February 2013!
What man wouldn't want a Testosterone spike like that! It is 'manufactured' of course, but nonetheless the fact the graph is steadily on the rise, shows that my lowest levels are now not so low....and my consultant said that despite how the graph looks I am within the right range. It is most probably also contributing to my feeling of wellbeing. I don't think you can underestimate the effect testo has on mental wellbeing as well as physical wellbeing...being able to build some strength is one thing, but being much more positive is pretty useful too.
So the summary is, feeling pretty epic.
Another thing I noticed was that for a couple of years before diagnosis I had a couple of brown patches on the side of my face and neck, real skin discolouration. It looked like a part of my skin had a sun tan, when the rest of me was much whiter. I now realise this was a symptom of lack of cortisol, more commonly seen in Addisons Disease. The pigmentation has faded almost entirely now, not completely gone but hopefully it will. It was only recently I even realised it was connected. I wonder how many more things will manifest themselves? Me forgetting to bring things downstairs my wife asked me to, forgetting to buy something at the shops my wife asked me to.....they're all getting blamed on lack of cortisol now. For as long as I can get away with it.....which knowing my wife, won't be long!
So I'm off, catch you again soon! Cheers, Carl
Thursday, 18 June 2015
June 2015 - the old and new me
So what have I been up to lately, well enjoying life that's what!
I've been on a cruise to Norway and this week been on a couple of days out and I've never felt better. To illustrate a point I found a picture of me from 2008 wearing the same suit on a different cruise ship as the suit I wore last week on holiday. To set the scene, in 2008 I knew nothing of what a pituitary gland was, nothing about Cortisol and the important job it did for your body. But what I did know was that I had some funny eyesight problems, which had been investigated by an eye specialist. He had a good look at my eyes and found nothing amiss - but I know now that what I was experiencing was some early disturbance of a pituitary tumour pressing on my optic nerve.
During the few years preceding my diagnosis how many times did people say to me "are you okay, you look a bit pale".....and of course I turned around to them and said "yes, I'm fine". Well any changes would have been very subtle and neither my wife nor I would have seen them, other people were far more likely to spot when things didn't look quite right. On the left below is me from 2008, I can see now that I look very pale and much thinner in the face (in 2015 much rounder face and ruddy complexion....and I hadn't been on the wine at that stage of the evening). I weigh pretty much the same now as I did in 2008, so I haven't put any overall weight on. On the right is me last week, I've even got a bit of a double-chin....but oddly that makes me kinda happy! On the left it looks like my neck was so thin I couldn't even make my bow tie sit straight.
Okay, I can make a joke of it now and it isn't exactly a scientific study. But both my wife and I looked at these two photo's and it shocked us a bit. In the 5 years between the photo on the left being taken and the tumour coming out, how much bigger did it get....how much less damage would it have done if it had been discovered earlier. Makes you wonder.
The first time he saw me my Endocrinologist said I presented looking like the typical pituitary patient, very pale and thin faced, now I really see what he meant!
I've been on a cruise to Norway and this week been on a couple of days out and I've never felt better. To illustrate a point I found a picture of me from 2008 wearing the same suit on a different cruise ship as the suit I wore last week on holiday. To set the scene, in 2008 I knew nothing of what a pituitary gland was, nothing about Cortisol and the important job it did for your body. But what I did know was that I had some funny eyesight problems, which had been investigated by an eye specialist. He had a good look at my eyes and found nothing amiss - but I know now that what I was experiencing was some early disturbance of a pituitary tumour pressing on my optic nerve.
During the few years preceding my diagnosis how many times did people say to me "are you okay, you look a bit pale".....and of course I turned around to them and said "yes, I'm fine". Well any changes would have been very subtle and neither my wife nor I would have seen them, other people were far more likely to spot when things didn't look quite right. On the left below is me from 2008, I can see now that I look very pale and much thinner in the face (in 2015 much rounder face and ruddy complexion....and I hadn't been on the wine at that stage of the evening). I weigh pretty much the same now as I did in 2008, so I haven't put any overall weight on. On the right is me last week, I've even got a bit of a double-chin....but oddly that makes me kinda happy! On the left it looks like my neck was so thin I couldn't even make my bow tie sit straight.
Okay, I can make a joke of it now and it isn't exactly a scientific study. But both my wife and I looked at these two photo's and it shocked us a bit. In the 5 years between the photo on the left being taken and the tumour coming out, how much bigger did it get....how much less damage would it have done if it had been discovered earlier. Makes you wonder.
The first time he saw me my Endocrinologist said I presented looking like the typical pituitary patient, very pale and thin faced, now I really see what he meant!
Tuesday, 26 May 2015
May 2015 - two whole years!
Yes, you heard it right. Two whole years since my pituitary tumour was removed, the 28th May 2013. So what then, does two years mean anything?
No not really - as time whizzes by the memories of all but the most horrible bits fade away, the times when I was less than 100%, those days/weeks leading up to diagnosis are a blur and only the most memorable spikes remain. In chronological order I think it boils down to this:
(nothing much pre-hospital at all, it just hadn't sunk in or seemed real)
I do still have my moments of annoyance with my condition and rebellion but I suppose that is only natural.
So the summary of all that is:
Cheers, Carl
No not really - as time whizzes by the memories of all but the most horrible bits fade away, the times when I was less than 100%, those days/weeks leading up to diagnosis are a blur and only the most memorable spikes remain. In chronological order I think it boils down to this:
(nothing much pre-hospital at all, it just hadn't sunk in or seemed real)
- Sitting with Dr Kar, him telling me it was definitely a pituitary tumour, showing me an MRI scan of my head and pointing to the mass. Saying it would be best if it were removed.....he'd refer me to a neurosurgeon
- Sitting on the hospital bed being admitted, going through the consent form with the registrar and the things that could in theory go wrong with the operation
- Being given a 'nil by mouth' sign by my bed (advanced notice the operation was a reality)
- Being wheeled down a corridor in my bed to the operation
- The anaesthetists trying to get a line in me to put me out prior to the operation
- Waking up after the operation and looking into the face of the nurse in the recovery room (forgotten the name, will never forget the face)
- Finding I had about 5 cannula's hanging out of my body
- Leaving hospital (which was good, but scary)
- Getting diabetes insipidus (bad)
- Getting admitted to hospital a second time with an adrenal crisis (also bad)
- Waking up with an oedema in my legs (definitely not good)
- Sitting back in my living room after the 2nd hospital visit feeling the weakest I have ever felt in my life
- Getting the results of my short Synacthen test confirming I didn't make enough Cortisol and probably never would
- End of 2013, finally feeling that my life was back on track, feeling fitter than I'd felt in ages and hormones balanced (good!)
I do still have my moments of annoyance with my condition and rebellion but I suppose that is only natural.
So the summary of all that is:
- A lot of 'stuff' happened
- It was a long time ago now, water under the bridge
- The NHS totally rocks!
- I've come a long way and I've good health and fitness
- It could be a whole lot worse!
Cheers, Carl
Friday, 17 April 2015
April 2015 - So, I can see my medical records now
I've been ruminating on a blog about this topic for a few weeks. Suddenly a few weeks ago, I noticed something online, someone had given me access to lots of my own data, someone who I hadn't expected to, my GP surgery.
It was only when the subject came up on Twitter that I realised why, because the government had given a commitment that all GP surgeries must provide online access to patients medical records, with an original deadline of the end of March 2015....although this seems to have slipped somewhat. I was unaware of this move and I'm sure many citizens are also unaware that this move was afoot. My local GP surgery uses a system called EMIS and I already use it to order repeat medications and book doctors appointments. I went online to order some meds, and noticed this new entry "view your medical records". I clicked into it and was amazed to see the level of data on display, see screenshot below:
As you can see I get access to pretty much everything there is to know about me. The most interesting reading was the 'recent documents', as this contained loads of referral letters back and forth between my doctors and various consultants during 2013/2014 when my Pituitary issue was being resolved. All the correspondence between my GP and Endocrinologist I had already seen because he kindly copies me in on everything, but the same cannot be said for all, and there was plenty I had not seen before.
So what then, I can see all this data, what am I going to do with it? On the one hand it feels right that I should have access to this information, it is MINE after all. But had I not had all my health issues in the last couple of years would I really be that bothered, probably not. Some of the data available is beyond me anyway, I can view blood test results from a full blood count taken a while back, the level of detail is staggering and I never even heard of some of the data contained within that report - Haematocrit, Neutrophil, Lymphocyte.....never heard of them. So yes, the data is there, but unless I have clinical training I can't really do anything with it. Sure I can compare one against the other and see a trend, but that's about it. Also some of the results do have a graphical indicator showing a normal range and if you fall outside that range the word 'abnormal' appears, but again, do I panic when I see that, or in fact is my 'abnormal' totally normal. So I can see that GP surgeries may in fact be a bit worried that providing all this extra information may result in a flood of phone calls from patients asking what their new found data means. The reality is that you still need an 'expert' to help you understand how the numbers are relevant to you and in fact even if the number is "right" or "wrong", this may not be reflected in your well-being. If you are feeling well as a result of some treatment, the hard numbers may only tell part of the story to how a clinician may prescribe further treatment.
An example is my recent Testosterone blood test. I had a blood test and injection in January and then another one this month, the first at a 12 week gap between injections and the most recent at 10 weeks, because after the 12 week my blood test showed my Testosterone was quite low in the 'normal' range, so we tried a 10 week period. The overall graph shows I am still on the 'low normal' range, but the pure numbers show that the levels of Testosterone in the blood are raised to what they were, so in a purely analytical sense, the 10 week versus 12 week scenario has shown an improvement. But what I will still need help with is interpreting what this means from a clinical point of view. Does this difference have any significant impact on my long term health, where in that 'normal' range should I be, or in fact does it even matter. I am fairly sure that when I am low on Testosterone I get more muscle cramps, and I believe that I have had less of them in this 10 week period, than previously. Otherwise, I'm not sure I'd notice any well-being difference between the two doses.
I like being informed when I speak to doctors, that can only be a good thing for me, but I wonder how much it complicates the patient/doctor conversation? I wonder what doctors really think of anyone like me that could in theory walk into my next appoint with lots of print-out's and questions?! Do they prefer well informed patients, or uninformed patients.....
The 'recent consultations' area of the website does contain dates of when you saw a doctor, but no detail about what or any sight of notes that the doctor may have written. This is very useful as a reminder as to when you saw a doctor for a certain issue, I like it. I'm not bothered that very little detail is shown, it is probably for the best I think.
The other point that occurs is that it feels pretty weird is the speed of which information is available. How many times have you been told by your GP surgery to ring back in a week when your blood test results will be back. In fact the blood is sent to the lab on the same day and is processed very quickly in most cases, overnight I believe. I had my recent blood test at 11am, and I could view part of my blood test result at 9am the follow day online! This is a real bonus. As it happens the Testosterone part of the test did take nearly a week to appear online, but still. It also feels a bit big-headed to be able to see this information and potentially be able to share it with your consultant before they've even realised it is there. I feel empowered, but also hesitant.
As for the other info that is available, lots of useful stuff. I can check when I had my last flu jab or tetanus jab, check what allergies are registered against me and potentially spot any errors and correct them before any issues arise. This is definitely a good thing.
So overall then, a very good initiative. Slightly odd that it was turned on by my GP surgery without any fanfare or notice, just slipped under the door quietly - if I didn't go into my online access very often I'd never have known it was there. Equally no advice on how to interpret or use this information. Finally the ever present "is it safe having all this data online" question. Well that doesn't really bother me, yes of course someone could hack into the information or guess my log-in and password....but really, is it important to someone to know my blood test results or that I had a pituitary tumour removed in 2013.....not really. If someone wants to snoop around my patient records, good luck to them!
17/04/2015 - Just a quick edit, I found an article online that shows which bits of the patient record can be chosen to be displayed, clearly someone ticked all my boxes, but a surgery could choose to display a lot less:
http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer
From a pituitary point of view, I can discuss all this with my consultant when I next see him in July. And if you're reading this now Dr Kar, I probably won't walk with lots of print-outs of my blood test results.....but may be armed with a few more questions than I otherwise might have had :-)
It was only when the subject came up on Twitter that I realised why, because the government had given a commitment that all GP surgeries must provide online access to patients medical records, with an original deadline of the end of March 2015....although this seems to have slipped somewhat. I was unaware of this move and I'm sure many citizens are also unaware that this move was afoot. My local GP surgery uses a system called EMIS and I already use it to order repeat medications and book doctors appointments. I went online to order some meds, and noticed this new entry "view your medical records". I clicked into it and was amazed to see the level of data on display, see screenshot below:
So what then, I can see all this data, what am I going to do with it? On the one hand it feels right that I should have access to this information, it is MINE after all. But had I not had all my health issues in the last couple of years would I really be that bothered, probably not. Some of the data available is beyond me anyway, I can view blood test results from a full blood count taken a while back, the level of detail is staggering and I never even heard of some of the data contained within that report - Haematocrit, Neutrophil, Lymphocyte.....never heard of them. So yes, the data is there, but unless I have clinical training I can't really do anything with it. Sure I can compare one against the other and see a trend, but that's about it. Also some of the results do have a graphical indicator showing a normal range and if you fall outside that range the word 'abnormal' appears, but again, do I panic when I see that, or in fact is my 'abnormal' totally normal. So I can see that GP surgeries may in fact be a bit worried that providing all this extra information may result in a flood of phone calls from patients asking what their new found data means. The reality is that you still need an 'expert' to help you understand how the numbers are relevant to you and in fact even if the number is "right" or "wrong", this may not be reflected in your well-being. If you are feeling well as a result of some treatment, the hard numbers may only tell part of the story to how a clinician may prescribe further treatment.
An example is my recent Testosterone blood test. I had a blood test and injection in January and then another one this month, the first at a 12 week gap between injections and the most recent at 10 weeks, because after the 12 week my blood test showed my Testosterone was quite low in the 'normal' range, so we tried a 10 week period. The overall graph shows I am still on the 'low normal' range, but the pure numbers show that the levels of Testosterone in the blood are raised to what they were, so in a purely analytical sense, the 10 week versus 12 week scenario has shown an improvement. But what I will still need help with is interpreting what this means from a clinical point of view. Does this difference have any significant impact on my long term health, where in that 'normal' range should I be, or in fact does it even matter. I am fairly sure that when I am low on Testosterone I get more muscle cramps, and I believe that I have had less of them in this 10 week period, than previously. Otherwise, I'm not sure I'd notice any well-being difference between the two doses.
I like being informed when I speak to doctors, that can only be a good thing for me, but I wonder how much it complicates the patient/doctor conversation? I wonder what doctors really think of anyone like me that could in theory walk into my next appoint with lots of print-out's and questions?! Do they prefer well informed patients, or uninformed patients.....
The 'recent consultations' area of the website does contain dates of when you saw a doctor, but no detail about what or any sight of notes that the doctor may have written. This is very useful as a reminder as to when you saw a doctor for a certain issue, I like it. I'm not bothered that very little detail is shown, it is probably for the best I think.
The other point that occurs is that it feels pretty weird is the speed of which information is available. How many times have you been told by your GP surgery to ring back in a week when your blood test results will be back. In fact the blood is sent to the lab on the same day and is processed very quickly in most cases, overnight I believe. I had my recent blood test at 11am, and I could view part of my blood test result at 9am the follow day online! This is a real bonus. As it happens the Testosterone part of the test did take nearly a week to appear online, but still. It also feels a bit big-headed to be able to see this information and potentially be able to share it with your consultant before they've even realised it is there. I feel empowered, but also hesitant.
As for the other info that is available, lots of useful stuff. I can check when I had my last flu jab or tetanus jab, check what allergies are registered against me and potentially spot any errors and correct them before any issues arise. This is definitely a good thing.
So overall then, a very good initiative. Slightly odd that it was turned on by my GP surgery without any fanfare or notice, just slipped under the door quietly - if I didn't go into my online access very often I'd never have known it was there. Equally no advice on how to interpret or use this information. Finally the ever present "is it safe having all this data online" question. Well that doesn't really bother me, yes of course someone could hack into the information or guess my log-in and password....but really, is it important to someone to know my blood test results or that I had a pituitary tumour removed in 2013.....not really. If someone wants to snoop around my patient records, good luck to them!
17/04/2015 - Just a quick edit, I found an article online that shows which bits of the patient record can be chosen to be displayed, clearly someone ticked all my boxes, but a surgery could choose to display a lot less:
http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer
From a pituitary point of view, I can discuss all this with my consultant when I next see him in July. And if you're reading this now Dr Kar, I probably won't walk with lots of print-outs of my blood test results.....but may be armed with a few more questions than I otherwise might have had :-)
Tuesday, 14 April 2015
April 2015 - Electroretinography
So today, off I went to Southampton General Hospital, Orthoptics department for a specialist eye test.
The very first thing to note, is don't entirely trust what Dr Google tells you! Inevitably when you have a procedure coming up it is human nature to want to know what to expect. Years ago this meant trying to track down someone else who has had the procedure, but nowadays just fire up your computer and all the information is at your fingertips. But as it happens I had viewed Electroretinography video's and information for the American market, and things aren't done quite the same over here in the UK.
In America the electrodes placed on your eye are contained in a kind of contact lens and an eye speculum. In order to do this the surface of your eye is anaesthetised. But over here, all that happens is a very thin wire is placed on the eye and fastened at either side, you hardly even know it is there, it just feels slightly itchy/scratchy and I forgot about it after a while.
So what happens is that you have a couple of wires stuck onto the back of your head and onto the forehead. The lights are turned off and you then look at a TV with various flashing chequerboard images shown, but you have to look at a red dot in the middle of the screen. Alternate versions are shown and initially to both eyes then a patch over each eye. Then the electrodes are placed on the eyes and the tests repeated. Then at the end, a bright strobing light is shone into each eye, first a white light, then a blue light, then a very bright white light. I wasn't asked if I was an epileptic! All in all it is a straight forward set of tests.
What I do find odd, is having had the test in its UK form, being very non-invasive, why the Americans do things differently....different technology but the same outcome? I would assume so, is one approach better than the other?
All this data is fed through the receivers stuck to my head into a computer which interprets what my eyes have seen. I assume there is an expected level of information being received through the optic nerve and I will be measured against that, as well as each eye being measured against the other. I didn't see the computer screen the clinician was working on, but my wife tells me the wavy lines were pretty unintelligible to her. So once the data has been unscrambled a report will go to my eye consultant, who I am seeing next month. Let's wait and see what that tells me.
Overall the tests were easy to sit through and barely uncomfortable. The flashing images were a bit mesmerising and sent the eyes a bit wobbly after a while, but no lasting effect. Another test to add to the few I've had over the last couple of years.
A techie side note, I noticed the TV used was an old cathode ray tube (CRT) version, very old looking technology. This at the moment is necessary apparently because the response times of old CRT telly's is very quick, and it is necessary to sync up the response times of the brain & optic nerve with the image being displayed. Using modern flat screen LCD/LED monitors isn't currently possible because their response times aren't quick enough right now. The scientist who did my test said she doesn't know what they'll do when their screens break as they are really hard to get hold of now, because no-one makes them any more! So if you have any old telly's lying around in the garage, don't take them down the tip, donate them to your local NHS Electroretinography unit (only joking!)
The very first thing to note, is don't entirely trust what Dr Google tells you! Inevitably when you have a procedure coming up it is human nature to want to know what to expect. Years ago this meant trying to track down someone else who has had the procedure, but nowadays just fire up your computer and all the information is at your fingertips. But as it happens I had viewed Electroretinography video's and information for the American market, and things aren't done quite the same over here in the UK.
In America the electrodes placed on your eye are contained in a kind of contact lens and an eye speculum. In order to do this the surface of your eye is anaesthetised. But over here, all that happens is a very thin wire is placed on the eye and fastened at either side, you hardly even know it is there, it just feels slightly itchy/scratchy and I forgot about it after a while.
So what happens is that you have a couple of wires stuck onto the back of your head and onto the forehead. The lights are turned off and you then look at a TV with various flashing chequerboard images shown, but you have to look at a red dot in the middle of the screen. Alternate versions are shown and initially to both eyes then a patch over each eye. Then the electrodes are placed on the eyes and the tests repeated. Then at the end, a bright strobing light is shone into each eye, first a white light, then a blue light, then a very bright white light. I wasn't asked if I was an epileptic! All in all it is a straight forward set of tests.
What I do find odd, is having had the test in its UK form, being very non-invasive, why the Americans do things differently....different technology but the same outcome? I would assume so, is one approach better than the other?
All this data is fed through the receivers stuck to my head into a computer which interprets what my eyes have seen. I assume there is an expected level of information being received through the optic nerve and I will be measured against that, as well as each eye being measured against the other. I didn't see the computer screen the clinician was working on, but my wife tells me the wavy lines were pretty unintelligible to her. So once the data has been unscrambled a report will go to my eye consultant, who I am seeing next month. Let's wait and see what that tells me.
Overall the tests were easy to sit through and barely uncomfortable. The flashing images were a bit mesmerising and sent the eyes a bit wobbly after a while, but no lasting effect. Another test to add to the few I've had over the last couple of years.
A techie side note, I noticed the TV used was an old cathode ray tube (CRT) version, very old looking technology. This at the moment is necessary apparently because the response times of old CRT telly's is very quick, and it is necessary to sync up the response times of the brain & optic nerve with the image being displayed. Using modern flat screen LCD/LED monitors isn't currently possible because their response times aren't quick enough right now. The scientist who did my test said she doesn't know what they'll do when their screens break as they are really hard to get hold of now, because no-one makes them any more! So if you have any old telly's lying around in the garage, don't take them down the tip, donate them to your local NHS Electroretinography unit (only joking!)
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