What Happens When Doctor’s Don’t Know Everything.

Over the last year one thing has become very clear.  Dr’s don’t always know everything.

We recently went to our Dr to ask about the fact that Derek was not feeling great.  After being told several times that he should not be taking extra Hydrocortisone just because he was feeling fatigued, or unwell, or had a ball of gastric wind under his ribs.

Because of this, he stopped taking the extra “stress dosses” of HC and began charting his BP instead.  After 6 weeks of readings at 4 times each day, we went to the Dr.

We found that his BP will go into a clinically Hypertensive range of 154/96 with a 68 heart rate one day and clinically Hypotensive at 94/59 HR 101 the next.  Just the effort of standing, and the change of position could have his pulse rate jump by anything from 40-60bpm (up to a 90% increase), where it should only increase by 20%.

Derek had been trying to get back to a semblance of fitness, so we organised through ACC, to have a schedule of fitness sessions with his Physiotherapist.  The physio was doing the starting assessment, and found out about the problem with his BP and would not touch him without clearance from the Dr.

Armed with the readings from the previous 6 weeks we went along to the Dr to ask if he knew what was happening and why.  The first thing he did (and all kudos to him) was to admit that Derek was the one and only “Addison’s” Suffer he had ever dealt with, and didn’t know that much about Adrenal Infarction and the complications of it.

He looked at Derek’s medical records.  The Endocrinologist had written that at some point, and probably without warning, he would need his fludrocortisone increased.  So it was decided that perhaps a change of Fludro from 0.05 to 0.1mg per day could work to stabilise it.

Home we went, armed with the hopeful knowledge that it was the fludro out of sync that was probably causing the large difference in BP.

We tracked his BP for another week.  There was definitely a change in pressure and heart rate.  It continued going higher during the day, but falling further overnight.  It had also become more erratic.

OK, so 0.1 wasn’t the answer.  So go back to 0.05 but twice a day.  We had seen on various forums where others had had some success with this option.

Another week of tracking and another change in BP (or not).  Still heading upwards during the day and downwards at night and still no real pattern for week days and weekends.

We returned to the Dr with this new information.  He agreed that the extra fludro wasn’t doing anything positive so we should go back to 0.05.

He also had the results of some blood tests.  There was nothing markedly different from last time.  Kidney’s still not at a great level, everything else seemed fine.  Potassium and Sodium all comfortably within range.  Thyroid a little wonky but he has no adrenals so it is not unexpected, and not sounding an alert.

The Dr agreed that it was time to refer him back to his Endocrinologist and to a Cardiologist.  So we now wait for an appointment.

While we wait however, we don’t just sit here doing nothing…..

And the mystery continues.

Along with his BP and HR issues, he also can’t take a fright/shock or be startled now without “crashing”.

We decided we needed to get to the bottom of it.  Thinking it was BP related we went out on Saturday to go for a drive, taking the BP monitor with us.  One of two things was going to happen.  Either nothing would happen to cause him an adrenaline rush, or someone would do something to force me to break quickly and sharply, which would give Derek a fright, and I would get an adrenaline rush.

Thankfully the latter happened.  Derek was on the phone, and didn’t see the car in front of me that started to pull into another lane, and then started driving in both lanes, blocking everyone.  I had begun to speed up as we were going 20-30 km under the speed limit.  A little late, I realised he wasn’t pulling all the way over, and I braked harder than intended.  I got a little adrenaline rush as I thought for a brief instant, that I may hit him.  I felt my heart start to beat a little faster and harder.  I got a tingly feeling around my chest.  I am sure we have all felt it.

I asked Derek how he felt.  I could tell immediately that he hadn’t had an adrenaline rush.  It was obvious that it was going to be another drop.  I continued driving for about 2 minutes, until I could find somewhere safe to pull over.

We took his BP and pulse.  It was perfectly normal.  Almost TOO normal. His pulse was in the low 60’s.  Yet we could see, and he could feel, the usual symptoms.  Headache, feeling slightly ill, couldn’t keep his eyes open, felt weak, his speech went quiet, it slowed down.

We continued home (5 minutes away) and checked his BP when we drove in the drive (before he got out of the car).  It hadn’t moved.  His pulse was the same and his BP was within 2mmgh/l of the first reading for both systolic and diastolic.

We continued checking it every 10-15 minutes for an hour.  I had to wake him to do it as he went to bed and just lay there, unable to talk, or really communicate.  Still there was no change in his BP or pulse.

We are none the wiser.

So we are going to try his glucose levels next.  The problem is, we have to wait to see what happens with a fright.  Unfortunately I can’t just make a very large sudden noise and frighten him myself, as tempting as it might be.

We have done a lot of reading on the topic of the Adrenal Medulla and epinephrine/norepinephrine.  There are definite links to these hormones and stress.  There doesn’t seem to be a lot of research into what the effect of not having an abundance of these hormones does.

Adrenal medulla

The inner part of the adrenal gland is called the adrenal medulla. The adrenal medulla produces hormones called catecholamines such as adrenaline and noradrenaline. Catecholamines play a role in the response to acute or sudden severe stress, for example during life threatening event.

Catecholamines are responsible for the palpitations (racing heart), sweatiness, widening of eyes and shakiness of the hand when faced with sudden fear or other stressful situation.

This information is all over the internet.  What we can’t find is what happens when this process doesn’t happen properly and you don’t get the palpitations, sweatiness, etc with sudden fear or stress.  Does the body skip to the next section (rest and digest), or is it part of the process fails but another part kicks in, and then is not switched off because again, the Medulla has failed it’s job.

It is very hard when you have a rare condition, one that is so rare that little research has been done.

If we could find an answer to what is happening when Derek faces the sudden stress perhaps we could find a way to reduce the impact but the Dr’s don’t know and we don’t know how to get them to investigate.  In the meantime, we are having to do it ourselves.

Dr’s don’t know what to do with Derek.  If anyone has an answer please let us know.

8 thoughts on “What Happens When Doctor’s Don’t Know Everything.

  1. He is actually having a really good day. He came home from work feeling positive. His BP seems stable, and well into normal range, with a steady pulse. All is good. Long may it last. Thanks for asking.

  2. This fascinates me. Well, not the fact that the doctors don’t know everything. I have experienced that. I also have Adrenal Insufficiency. Some endos confidently say I have Addison’s, while others disagree. AND I just recently discovered my HR is all over the place, but my BP stays “low normal.” I have an appointment with a cardiologist soon to figure out what exactly my heart is doing.

    I wish doctors would change their mentality. Stress fluctuates during the day. Cortisol levels vary day to day. One magical dose day in and day out is not ideal. Oh well. Thank you for recording Derek’s story. The more of our stories that we have published online, the more we can change the perception that this disease is not as simple as, “Take your pills. You’re fine.”

    ~ Amber

    • I have read some of your blog. Thankfully, after the first crisis Derek hasn’t had any more need for Urgent care.
      I will be following you now, as I am keen to see what others are going through, in the hopes that Derek will not have to go through it.
      Education of those with Adrenal Insufficiency (he doesn’t have Addison’s as it is not autoimmune) and of their primary careers, who become their advocates in an emergency, is the key as the Dr’s don’t deal with it enough to know what they should do.

      • I go through periods where I am perfectly fine (two years urgent care free!) and then episodes where it feels like I’m there at least once a month. I’m hoping to break my previous record. Right now I’m at 5 months urgent care free and counting! 🙂

        And I completely agree with you on the need for education and personal advocates.

      • Amber I hope you are still crisis free. We still don’t have an answer but Dereks BP has settled for the last couple of days after having a major drop to 67/37 the other night. It took 24 hrs but it came back up without medical intervention thankfully.
        The drop was after having another “incident” when he got a fright while I was driving. It is becoming frustrating but hopefully one day someone will have an answer for him.

  3. I asked my professor about this… He was asking if its primary or secondary addison’s? And he said if he’s the doctor hed ask for certain tests like
    , me mga labs ako irerequest and magpapadirect 24 hour cortisol levels ako. Tapos Magpapa-urinary 17-ketosteroid ako , also he added ultrasound

    Do you have anymore information?

    • Thanks for the reply.
      It is Primary Adrenal Insufficiency due to Adrenal Infarction from Disseminated Intravascular Coagulation. Confirmed by both ACTH Stimulation Test and CT.
      He also has Primary Antiphospholipid Syndrome with very high Anicardiolipin Antibodies and Lupus Anticoagulant and has a low Platlet count.
      He has no function in either his Cortex or Medulla. His last ACTH results were Random Cortisol 10 nmol/L (250-700 range), 40 minutes later 9nmol/L (250-700 range) and he started to go into crisis.

      Apart from that he hasn’t had any other tests in the last 12 months for things like 24 hr Cortisol urinary 17-ketosteriod. He does have Aldosterone, Sodium/Potassium, Creatinine done regularly.

      Feel free to read the full blog to see what actually happened, and direct your professor to the Catastrophic Antiiphospholipid pages to see exactly what happened.

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