One of the things Derek does is keep a track of his medication. What he takes and the time he take sit. Each time he takes a medication he records it. If ever we need to go back and see a pattern, we can. It also helps him to know whether he has taken his meds or not as he won’t record them until he has taken them.
If he skips a normal dose because he is taking more, he indicates that as well. Because of that, we are able to see what happened when he got a UTI recently.
Last year he was a little unstable, his BP was playing up, his heart rate was dropping steadily, having gone from a normal 65-75 BPM resting to 52BPM resting. He records it on his fitbit so although not perfect, if there is a trend, it can be seen. There was clearly a trend. It was a steady downhill slope.
It had got so bad that we were canceling events we were supposed to go to, he stayed home while I did all the “Christmas” things. Derek had to miss my brothers Birthday, we were glad we didn’t have any big things planned.
In January, because he was becoming worse we went to the Dr and talked about this trend. She decided to put a stop to it by changing his BP meds.
With that change came stability.
We had been invited to a nieces wedding but I had tentatively accepted for me and not Derek as we didn’t think Derek was stable enough to travel.
Once the BP meds were changed, we decided that he could travel and so accepted the invitation formally, and then organised leave. We planned to drive up, stay for a couple of nights, then drive home again.
Derek keeps his HC at the lowest dose possible for him to function and work, and keep his weight stable. Some days he will “top up” for one reason or another. For example, we had a driver do something crazy in front of us when I was driving one day and it caused his normal “reaction” of a cortisol crash which requires a stress dose.
He topped up the next day as well (for what reason we can’t remember).
He went a few days without having to take any extra. Then he updosed again. It wasn’t stress dosing, just feeling off, so updosing. In total by 10mg a day, going from 22.5 to 32.5 a day.
Then one Saturday he had to take more. We presumed it was because of the heat and the fact he had worked outside. This sort of made sense, but the fact was, he hardly did anything and had to keep sitting down.
Sunday he felt like he had run a marathon on the Saturday and he could only rest. He had no energy to do anything else, so he took a small updose. It was only 2.5 extra, but it was enough as long as he didn’t do anything
On the Monday he didn’t updose. By Monday night he felt off again. This time he decided not to updose. He worked from his home office, but not for long, and not well.
Monday night he felt worse and he had a little wind. Nothing specific. The wind was not where it was last time he had a crisis, so he didn’t believe it was the same thing. He got out of bed and went for a walk, having taken omeprezole but it didn’t seem to help. He settled down for the night, but it was a very restless night, with not a lot of sound sleep for either of us.
Tuesday morning he woke up and decided he would not go to work in the office that day but rather, would work from home. He had definite discomfort in his stomach. He had a lot more wind, and he felt rather unwell, with fatigue, discomfort, hard getting out of bed, his brain wasn’t as sharp as normal. It was a day to updose.
No Crisis Today Thank You
Our day went like this:
- 0545 – 10mg HC Derek woke to take his first dose of the day. Earlier than normal.
0655 – I left for work
0710 – I called from the train. His wind was worse so I told him to take more HC.
0715 – 10mg HC. His wind was worse so he took the extra.
0805– I arrive at work. I txt my daughter to check on her father. He is complaining he is still unwell.
0830– I get a call from my daughter to say the discomfort he felt had turned to pain.
0840 – I instruct Tammy to make her dad take another dose as he was getting worse.
0850– 20mg HC. Tammy leaves for work having confirmed Derek had taken extra. I am on the train home.
0950– I arrive home from work.
By now Derek had taken 40mg HC and looked as if he had skipped his morning dose. I had to decide did I call an ambulance, take him to hospital or try and get him an appointment at the Dr. I phoned the Dr and asked for an urgent appointment. If I hadn’t been able to get one, we were heading to hospital.
- 1030 – 5mg HC while sitting in Dr’s surgery waiting to see the Dr.
1030 – Dr confirmed UTI from very clear dipstick.
1045 – Got blood tests to confirm UTI.
1230 – 20mg HC. The 20mg from 8.50 was wearing of, the 5 from 10.30 had no effect.
1530 – 5mg HC – Normal dosing.
1800 – 2.5mg HC – Normal dosing.
1830 – 5mg HC – extra dosing
2130 – 5mg HC. – Night cover. He went straight to sleep as if he had no extra cortisol.
We had managed to keep him out of hospital so far, but he was only just functioning.
That night we went to bed but I didn’t go to sleep quickly. Before I could settle I set an alarm to wake up and get him to take a middle of the night dose. We decided that he would take 5mg at 3am. I did not want to find an unresponsive husband in the morning.
Professor Hindmarsh from the Great Ormand Street Children’s Hospital had reported on a study a couple of years ago. He had recommended the theory of Circadian dosing, and early morning dosing when ill. The theory (a very sound one given the number of people who go into crisis around 4am) is that you are at your lowest between midnight and your first morning dose, so you should make sure you have enough to cover you if ill. Who were we to go against this theory? Better safe than sorry,.
For dosing on Day 2 Derek decided to try something slightly different. He was on antibiotics so the instructions according to the UK Addison’s Disease Support Group guidelines you should Double your normal daily dose when you have a temperature of more than 37.5° Celsius (99.5° Fahrenheit) or more than +1° Celsius above normal. Treble your normal daily dose if your temperature rises to more than 39° Celsius.
According to these rules Derek should not require double dosing, or anywhere near the doses he had taken. The decision we had to make was, do we listen to this, or do we do what we felt was needed.
I knew him, I could see how he was. We would do what was needed. His temperature was not a full degree above his normal (35.9), but he was clearly unwell and there was clearly a UTI to fight.
Here’s where things were changed up. We know, from all the reading we had done and the random cortisol test he had a few months ago, that it doesn’t matter how much HC he took, his body will only use what it needs, the Cortisol Binding Globulin would then grab what it could, and the rest would be excreted. So taking 20mg as a double dose would not necessarily keep Derek going. Especially when half- life is still only 90 minutes.
To double dose, he would be going very high at hour 2, then a big drop at hour 4, and then have to fight to get back up.
Instead, he decided to do double his dose by taking double the NUMBER of doses.
So he did this:
- 0300 – 5mg HC
0630 – 10mg HC – Normal morning dose
0830 – 10mg HC – “double Dosing”
1030 – 20mg HC as he felt himself crashing badly even though he was in bed.
1245 – 10mg HC
1500 – 5mg HC
1800 – 5mg HC
This made a total of 65mg for the day. This amounted to just below triple dose for the day but it is what he needed just to sit around doing nothing.
Thursday was going to be a lot harder as we were driving (me driving, him resting) 500km to a family wedding.
Dosing was going to be double the number of doses, rather than the strict double each dose amount. Again, we wanted to keep his Cortisol levels up, not do big highs and lows.
We were also aware that when travelling, Derek would updose as it made him so tired. This meant his dosing had to be extra for travel and extra for the infection.
- 0300 – 2.5mg,
0620 – 20 mg
0800 – 5mg Heading out the door for our trip
As I was driving over the bridge out of town I turned to look at Derek. He looked very unwell.
“Are you absolutely sure you want to do this. It’s not too late to say we can’t go. I will turn around now and take you home to bed.”
“No.” The answer wasn’t completely convincing. “We will go. We have to go, it’s your neice.” So we continued, very slowly up country.
- 1030 – 10mg (we stopped for morning tea)
1230 – 5mg (stopped for a leg stretch and cold drink)
1500 – 10mg (driving, but over the worst of the road)
1730 – 2.5 mg (we had arrived and he was laying on the couch sleeping)
2130 – 5mg to keep him going over night. I woke him for that dose.
This made a total of 60mg on Day 3
Continuing to reduce
Over the next 8 days he decreased his dose each day. He took what he needed, depending on how he felt. His dose went
Friday was the Wedding day. We went to the mall for him to have a hair cut. This required us to get a wheel chair as he had very little energy, and not enough to walk around looking for somewhere to have his hair cut. With everything going on he was still needing to updose.
So Friday was 57.5mg. Saturday we had a lunch to go to, but he could just sit, doing nothing. 40mg was the sweet mark.
Sunday we were driving home. He was still on Antibiotics, but was feeling a bit better so he stuck to 30mg. He was glad to be home, and exhausted. We had Monday off as we were originally planning on driving home that day.
Instead, we were able to just relax. He managed on 32.5mg.
Tuesday we were both back at work. Derek was going to work from home, I had to go into the office. He was almost down to his normal daily dose, but not quite, at 27.5
Wednesday he woke feeling like he was almost normal, so could reduce his dose. At least, that’s what he thought while in bed. Once up, that changed. For the next 3 days he took an extra 5mg 2 hours after his first morning dose. It seemed to work.
By Friday he was at 25mg, only 2.5 mg above normal.
Then Saturday hit. We don’t know what went wrong, or if it was related at all to everything else but while sitting having a morning coffee Derek got a sudden stomach pain. It went from not well to Do I need to inject, very rapidly. He was in pain, he was nauseous, his BP jumped up from his normal 125/75 (which is has been since new BP meds) to 157/90.
When I realised he wasn’t going to immediately throw up, I got him to take 20mg HC. He sat for an hour and his BP began to drop, his pain moved to discomfort, and he was able to relax.
The day isn’t finished yet so we don’t know what will happen with his dosing.
Stress Dosing Graphed.
This is what “Stress dosing” looks like when Derek got his UTI. To show what stress dosing looks like, we have overlaid in RED, the UTI going back 31 days from today. The BLUE broken line is a normal 31 day period. It shows the occasional top up dose for various reasons, but a reasonably straight line of consistent dosing.
Derek’s normal “top up” will be for any reason from feeling “off” to going out somewhere or working in the garden. It is a bump of 2.5 to 5mg as a one off dose.
I was heading home on the Tuesday expecting to call an ambulance. Instead, we managed things at home, with the help of a Dr.
If we hadn’t got to the Dr urgently, he probably would have been in hospital instead of at a Wedding on the Friday.
What we noticed on seeing the overlay is that as the UTI was coming on, he was updosing more frequently, but we didn’t know why. He would feel “off” so he would take an extra 2.5 to 5 mg, but we didn’t realise that he was doing that with more frequency until the big one hit.
He is still not well. He will probably still be suffering for another week. Hopefully he will be back to his normal 22.5 soon, but it won’t be until he is safe on that level again.
Only time will tell how he goes. We have more antibiotics in case the UTI comes back. We are hoping it won’t.