October 2020 - Something is going on!

Hello again, time for my 2nd post of 2020, not exactly prolific but I've got a little bit to report.

It has been on and off for a while, I've had these episodes of feeling a bit exhausted but nothing a sit down and an early dose of Hydrocortisone hasn't sorted out....maybe the odd extra dose of Hydro. If you remember a while back my daily dose was slightly raised by 5mg per day from 20mg to 25mg per day - 15mg at breakfast, 5mg at lunch and 5mg with dinner. As reported in my August 2020 update a pretty major event has happened, moving house.

I reported last time that I had lost 3kg and my BMI was 23, well I've now lost 5kg and my BMI is down to 22. So I decided that enough was enough, and I thought I'd better contact a doctor to check everything was ok. I 'ummed' and 'ahhhed' as to which doctor to go for, whether it be my GP or the Endocrinologist who looks after me and after a bit of thinking I decided to go for the latter. It isn't uncommon if you've got a pituitary condition for another hormone to go a bit out of kilter, so that was my first choice. Having emailed and then chatted on the phone, some blood tests were ordered. The blood form came through the post and I made an appointment and had them done.

The report that came back was that my Testosterone was high, because I hadn't long had my 12 weekly injection of that, but my Thyroid was at the 'low end of normal'. I looked up symptoms of low thyroid on the NHS website:

Tiredness - definitely got this

Being sensitive to cold - got this too

Weight gain - quite the opposite of this!

Constipation - thankfully not!

Depression - nope!

Slow movements and thoughts - yes, although I can also attribute this to low Cortisol (or low Hydrocortisone in my case)

Muscle aches and weakness - definitely, although again, I could attribute this to much higher activity levels and moving house

Muscle cramps - yes definitely, particularly in my hands

Dry and scaly skin - yes, getting worse over the last couple of weeks

Brittle hair and nails - well, at my age my hair is going to be on the run, one of my nails has split, which is quite unusual for me

Pain, numbness and a tingling sensation in the hand and fingers (carpal tunnel syndrome) - Nope

Later symptoms of an underactive thyroid include:

A low-pitched and hoarse voice - this can definitely be me at times!

A puffy-looking face - definitely not, I'm thinner in the face than I was.

Thinned or partly missing eyebrows - haven't really looked at this!

A slow heart rate - I've always had quite a slow heart rate of 50-60bpm, but I have a graph on this in a minute.

Hearing loss - if you ask my wife, she will tell you I never listen to her, is this the same thing?!

Anaemia - don't know.

So it isn't a slam-dunk 'I've got everything on the list', but I do have a fair few (the weight gain symptom versus my weight loss being the most obvious clash). But of course this is where hormones catch you out, because probably if I listed several other conditions created by the pituitary, I'd probably match quite a few of them too.

The answer for the moment is to have another blood test in a month or so, to see if my Thyroid level is stable or worse and then take it from there. If it is lower then I can start Thyroxine tablets to see if this helps, or if the Thyroid levels are stable or better then we need to look at something else, don't ask me what!

How about some data? Why am I losing weight and what about my heart rate. Like many people I wear a fitness tracker, so I downloaded some stats into Excel (other spreadsheet applications are available), and here is what I found.

Weight loss. The obvious reason for losing weight is because I've gone on a diet, but I haven't. I haven't changed my food intake much at all for years, I eat a mixture of fairly healthy with lovely puddings and pizza on a Saturday night. Have I increased my activity level, well I would have said "no", but my fitness tracker says otherwise. Of course in the lead up to the house move and a couple of weeks after, activity levels surged. But they haven't gone back to normal despite me not doing anything radical (July was the house move):

As you can see, I've gone from a number of steps averaging 6,000-7,000 to well over 9,000 and into the 10,000 range, quite incredible. My work schedule hasn't changed, I still walk the dogs as much as I ever did. However, all the little jobs around the house, the fact the garden is bigger than it used to, the house is slightly larger.....it all adds up. So my activity level HAS gone up and it has stayed up!

Heart rate, it said above in the symptoms that your heart rate could go down if you have low Thyroid. I don't have my fitness tracker set to constantly monitor my heart rate, however having downloaded the data off of it, it turns out that it does monitor it every 2 minutes at night and I'm assuming it does that in part to track 'light sleep' and 'deep sleep'. So I've analysed that data too:

Well what do you know! I'm no doctor so I don't really know whether averaging 53bpm overnight down to around 50bpm overnight is really a big deal. However the data doesn't lie and it is showing a downward trend in my overnight heart rate. They say your heart rate lowers if you are very fit I think? What with me walking many miles a day now, perhaps that is it!!

If nothing else, it fills up a blog post. I'm not sure what the data tells me other than I really am doing more physical activity which can't be a bad thing. But perhaps I'm burning way more calories than I'm taking onboard, after all that is what a weight-loss diet aims to achieve! Break out the biscuits..... :-)

I could certainly do without feeling bouts of exhaustion/tiredness because they are extremely inconvenient. In fact they hark back to pre-2013 when I was first diagnosed, I had bouts of extreme tiredness back then plus quite a few of those other symptoms like cramp and muscle aches and weakness. I could certainly do with an answer that's for sure.

I'll give you an update as soon as I have one!

August 2020

Wow, nearly a year since my last post. A lot has happened since then, most of it in the last few weeks.

The pituitary update element of this post is that all is well. I've had the usual bloods done which all came back normal, the eye checkup which was fine showing no further degradation of my optic nerve and an MRI scan which confirms that he tumour is still not re-growing. So a good set of results which means that I continue down the line of being monitored but nothing to worry about. Which is great news!

In terms of day to day pituitary life, things are relatively normal. 2020 has thrown a lot at us so far, mainly in the form of COVID-19. The stresses this has brought have not really affected me as I am lucky enough to be able to work from home, so this switch has been easy. Pituitary patients fall into the clinically vulnerable group which meant I had to maintain stricter social distancing, but not full shielding. Life continued pretty much as normal, at least as normal as it ever could be under such conditions.

The thing that really did affect me is the decision to buy a new house. One day back in April 2019, Deb walked the dogs past a house locally that had been renovated and remarked how nice it looked. We had been looking at houses for quite some time, but not that seriously. So in early May 2019 we decided to view the house and fell in love with it. But we didn't have our house on the market at that point and our 'dream' house sold quickly, and that was that. Or so we thought....

The estate agent called us back in November 2019 wondering if we were still interested, as the sale fell through. We were, but now things were getting serious, because it meant getting our house on the market. This happened fairly quickly and in early 2020 our house sold, our offer was accepted on the new house and everything seemed to be going smoothly. We would be moved in by Easter. However, lockdown happened......

To cut a long story short, following the end of the lockdown it took an age to get the move done for various reasons. We finally moved in near the end of July 2020. It really is a fantastic house and very much a dream house for us. It was a 1955 bungalow which was extensively converted into a very modern chalet bungalow. We are very lucky....but what does this have to do with a pituitary blog. Well dear readers, stress.

When you updose Hydrocortisone it is referred to as 'stress dosing'. I don't think I had really appreciated this term until the last couple of weeks. I frequently refer in this blog to my occasional crashes, well when you are moving house, the stress of that plus the unusually high physical and mental activity really exposed how clever the human body is and how reliant it is on Cortisol, or Hydrocortisone in my case. To say I was flagging a bit most days is an understatement. I am just at the end of 2 weeks off, the first week was leading up to the move and the second week was following the move. Up and down to our old loft, packing boxes, lifting boxes and constantly thinking about something. Getting up early and going to bed late. Then moving in and cleaning and unpacking and lots more brain activity. My body was just burning through Hydrocortisone like no-ones business. I took an extra 5mg most days and a little bit more than that some days.

I have lost 3kg in weight due to a combination of the physical and mental strains. I also found myself really needing extra food. A stupid thing to say really, because if you are working hard, you burn the calories and need to fuel up, but I'm just not used to it. My body aches and to be honest, anyones would....of course it would. It is just another stabbing reminder that I rely so much on the Hydrocortisone to keep me going. I can confirm that on the day of the move the one thing that wasn't packed and was very much with me was a stash of pills and my Hydrocortisone injection. We were only moving around the corner, but that is plenty far enough to get into real trouble if my medication wasn't to hand.

Hopefully, I will put the weight back on as my BMI is around 23 which is fine, but I was happier with another couple of Kg on me. Not doing 10,000 - 15,000 steps daily will probably sort that out, my normal daily is around 8,000. The day of the move I did nearly 25,000.

Moral of the story, don't be afraid to updose if there is good reason. I'm back at work tomorrow, so on a much more 'normal' schedule for me, let's see how that goes!

Photo is me and the dogs relaxing after mowing the lawn today