In Dr’s we Trust?

Without really thinking, we do.  They are Dr’s, they know it all.  But putting all your faith in these special people, especially specialists, is not always a safe option.

We have been going around in circles trying to get more things sorted.  Derek’s lungs don’t appear working properly.  He gets breathless quickly, when talking, when walking, when laughing.  He is now worse than he was a year ago.

We used to walk 5.5km in an hour with no stops.  Now he walks that distance in 1 hour 20 minutes and he has to stop.

We are trying to find out why he is going down hill so have asked several medical people to investigate.

We went to a specialist Endocrinologist in June this year. One we have been to several times.   We mentioned this reduction in ability, but it was not recorded.   He spent a short time with us, discussed things, then wrote a letter to our GP.

This is an important letter as it tells Derek’s GP how he is doing currently with his health and his medication levels.

We have recently changed GP’s as our previous one has recently retired.  Therefore the new Dr needs all these specialist notes, to ensure she is treating Derek properly.

At the time of transferring, we decided to get a copy of all of Derek’s GP’s notes from his previous GP to see what had or hadn’t been noted.

What I found floored me.

We all put our faith in the medical profession getting things like medication correct..  But is that faith justified?

To put your all trust in what Specialists say (and they are supposed to be the all knowing Gods of Medicine), has again proven to be very dangerous.  Thankfully this time, we ignored what the specialist wrote, and the Dr didn’t bother reading what the specialist wrote.  Instead, the Dr asked US what medication Derek was on.

What the letter stated as Derek’s medication was  dangerously wrong.  This specialist  is the one responsible for making note of what Derek’s medication should be on a daily basis to keep him alive.

According to the latest letter to our GP (and the one that the hospital would read to confirm dosage) The letter states ….Hydrocortisone is 10 (5 at lunch, 5 at dinner)….

hc dosingThe letter should read 10mg HC in morning, 5mg at lunch and 5mg at dinner.  There is 10mg of Hydrocortisone daily missing.  It is half his daily dose to keep him alive!

If Derek took that low a dose he would not be conscious to take HC at lunch time on the 2nd day.  He takes 10mg in the morning (6am) rolls over to let it kick in, then takes another 5 before lunch time, and another 5mg at 4pm.

Derek has had blood tests done at 8am before his morning dose of HC and it was found that he had a level of  9nml/L in his system, the absolute minimum a normal person should have is 250nml/L.  It should actually be in the 500’s at that hour.  Less than that and you are probably in crisis.

Taking 5mg at lunch time, then 5 in the late afternoon would not be enough to keep him alive for more than a few of days, and those would be a major struggle to stay conscious.

Taking Hydrocortisone is not like eating extra food.  You can’t take your normal dose one day, stay in bed all day, and store it up, to use when needed another day.  It peaks at 2 hours post taking, and only lasts in the system for 4-6 hours.  Once that 4-6 hours is up you start to go down hill until you take your next dose.

Derek cannot get out of bed in the morning except to struggle to the toilet if he hasn’t taken any HC.

And the kicker is, the less HC you have in your system, the quicker you use it up as your body starts fighting to cope, so it use up what it has to function pretty quickly.

So putting on a legal document that he is only on 10mg a day when he struggles to stay out of crisis on 20mg, is a medical misadventure waiting to happen.

NEVER PUT ALL YOUR TRUST IN YOUR DR.  Always get a copy of your medical notes, and check them for accuracy.  They have a habit of not recording everything you say, interpreting it how they want so it fits the book, or just brushing it off.  Or worse, not checking their own notes, when writing to inform others of important information.

There is no excuse for getting critical details wrong when it could seriously harm someone

 

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3 thoughts on “In Dr’s we Trust?

  1. Derek’s dose, schedule is the same as mine……but last week I increased my afternoon dose to 10mg. I had just been feeling poorly and thought I would try an increase. I feel better after a week of 25mg daily instead of 20mg. I didn’t check with my doctor, I just did it on my own. I hope that I can go back down after a while. Quality of life is most important to me.

    • We have played around for over a year working out the best dosing and schedule, without the endo’s advise. Trouble is, he is not feeling really great at the moment, but we are looking at possible thyroid involvement now, just to add to everything.

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