But What Cost, a Medical Misadventure

When the Medical Side is Under Control

4 years on from Derek twice having his warfarin stopped by a hospital who’s excuse is “Oh, the Dr didn’t realise the importance of bridging” and we have, with very little help from them, managed to get Derek as stable as he will ever be.

 

We have got his Adrenal Insufficiency as under control as it will ever be.  We have worked out through experiement, what dosing works for him (and it’s not what they say in the books).  We have added other replacement medication (DHEA, Vit D) which is helping.  We are learning the symptoms of low cortisol.  We should have learned, we see them frequently.  Derek updoses as he needs, which is different to stress dosing when sick, and how to stress dose (double or triple HC) when he IS sick.

He is being driven to work, although he works mostly from home at the moment.

But what is the unseen cost of the medical fraturnity almost killing him?

It’s the costs they don’t compensate you for.  It’s the cost of things he can’t do any more. The things we now need to pay to get done.  For some it is things like having to employ a builder, for others, it is having to downsize their home, pay a cleaner, pay a gardener, or just not do things any more.

Why is employing a builder a hidden cost of his injury?

Bedroom RenovationBefore Derek suffered his CAPS event we used to work together to do renovations to the house.  This included turning our downstairs bedroom, shower room, and toilet, into a Master Bedroom with ensuite.

The cost of this exercise was extremely low.  We paid just for the materials used.  We paid a very small amount to have 2 power points moved.  We worked weekends, nights, and took a few days off work.

Top Left is the entrance foyer of our home.  You can see the door to the shower room, and the door to the downstairs toilet.  The bedroom is the door to the right.

Derek built the new wall (back of new wardrobe).  He then demolished the old wardrobe, we gutted the room, insulated, relined, and created a new Master Bedroom.

This was done a year before CAPS.

We have done a couple of small outside projects, with a lot of help from others including building a garden and a garden shed  and an deck outside the dining room.

Derek designed the deck, but we had to call on friends and family to build it.  It is an amazing asset,  and again, we paid for materials, and food for workers.  The help to build these things was fantastic.  But what about the bigger projects. Something the size of the Master Bedroom.   Like a kitchen?  Or insulating the Living Room?

We are looking at selling our home in a few years and find something slightly smaller.  There is a lot of new building going on around our area and we have to have our home at the right level to get the right money.  That means insulation in the Living Room is essential, as is a new kitchen.

Once upon a time we wouldn’t have thought anything of it.  We would have just purchased the materials, contracted a kitchen manufacturer to make the cabinets and bench top and over a period of a couple of months, done the work.  But not now.  And it was too big a job to ask friends to spend 2 days building.

So we had to pay a builder.  He is a great builder, with home renovations/alterations as his specialty, but still, we had to pay.  We have had to pay him for a lot of the other “little” jobs around as well.  Things that would normally take a weekend for Derek and I to do, now either doesn’t happen, or Chris comes to our rescue, but at a price.

So, Chris came in and gutted the lounge.  He then built a new ceiling, insulated the entire lounge, relined it.  We had to get a plasterer in to paint.  We had to get a painter in to paint it.

As for the kitchen.  It is a great Kitchen, I love it.  But again, we kept Chris employed where we could would once have done much of the work.

Gutted KitchenWith the help of a friend we did remove the old kitchen.

Most of the kitchen was still in good enough shape to be used elsewhere.  It was after all, a Designer kitchen.  It just wasn’t a well designed kitchen.

Our friend agreed to remove it with her and I doing the bulk of the work including carrying the units down to her trailer, taking them to her place, and putting them in her garage, for her to have installed in her home.  Derek did the little bits.  He unscrewed units from each other, and supervised, or held things while Sian and I did the hard labour.  Thank the Lord for Sian.  She has a new kitchen and Derek didn’t end up overdoing things.

But once everything was removed the walls were a complete mess.  Patches here and there.  Holes in the wall.  No insulation,  It had to be gutted.  We also needed to install a new window as one of the windows was sitting below the height of our new bench.

 

rebuilding

Chris, working hard (instead of Derek)

Enter Chris again. It wasn’t a big room.  For someone fit and healthy, which Chris is, it was a 5 day job to put up new ceilings, new wall lining, and install the new window.  Working along with the plumber and electrician it took 2 weeks in total.  Inbetween that, we had the kitchen company come in and install the units and bench top.

Then Derek and I could do some more work.  Well I could do some more work.  Derek “supervised”.  I plastered, sanded, and painted.  Derek did bits and pieces, working as he could, taking extra HC as he needed.  It took several days, with me doing the bulk of the work.  It was hard work, but rewarding.

Once we had the units installed it was time to put up the tile spashback behind the sink, and along the bench top.  Again, Derek cut a few tiles with a motorised tile cutter, and I did the installing of them.

KitchenFinished

The Finished Kitchen

All Up, for the living room and kitchen, it cost us $10,000 for work that 5 years ago we would have done ourselves.  This was the cost of employing a builder for work that Derek was once very capable of doing, and in a good timeframe.

So what is the hidden cost of a medical misadventure.  So far in the last 12 months it has added up to $10,000 and rising.  This, you do not get compensated for.

 

I understand that others would already have to get someone in for this, but when it is something you would have previously done yourself, it makes a difference. It certainly made a difference to the cost of the Kitchen.

For others it may be something different but there will always be hidden costs that are not compensated for, or that have no real measure and that are not thought about when it comes to the cost of a Chronic, or unexpected illness.

 

 

 

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Know Your Own Numbers

Aside

Every few months we get a question from someone on a forum as to what a normal BP or Temperature, or blood result is.

Everyone will jump in with one of two answers:

  1. The books say…….
  2. Mine is……

Both of these are valid responses. However, the book “Normal” is simply what the middle of the Bell Curve is.

Most “normal” numbers are taken from a group (be it large or small) and are based on a Bell Curve of averages.

 

Bell Curve

In this image, all areas are “Normal” according to a “range” but where you sit will differ to the person sitting next to you.

The first thing Derek and I learned when he was diagnosed with AI is that there is no Strict Normal.  Most people will sit within a range, but they will not have identical numbers.

When you are sick, the first thing they check is BP, Temperature, Heart Rate and Oxygen Saturation and, if you are really lucky, they will do a few bloods.

That is great, but what if you normally sit in the High, and you are feeling off and now sitting in the Low end of the range. Although it might not be screaming “Warning… Out of Range for the BOOK”, if you know your own numbers, you can scream “Warning… Out of Range for ME!”

When Derek had pneumonia in 2014 he went into crisis before he showed real signs of being unwell. For him Adrenal Crisis (or low cortisol) can be his first sign of being unwell.

In 2015 when he got pneumonia (yes he has had it every year since 2012) we knew his “Normal” and once his temp showed to be out of HIS normal range we sought treatment. The problem is, for him normal is 35.9 so once his Temp hit and stayed at 37.3 (considered perfectly “normal”) we knew he had some sort of infection so sought help. We kept him out of hospital because the temp was one of the first signs. We knew HIS “normal” so were able to run with that, and get treatment underway before he became too sick.

The same thing happened this year with a throat infection. Because we know what his “normal” is, we could see that some things were off so he was already taking a bump in Hydrocortisone.

The problem was, he has no feeling on one side of his throat so by the time he had a sore throat he already had a throat infection. But, it wasn’t’ crazy out of control because again, he knew his normal readings and was already taking HC to fight what ever it was he was fighting.

How do we know his “normal”. Quite simple, we did regular checks of his BP over a 3 months period. And by regular I mean 3 times a day every day. And we charted it. We also did a 10 day Basil Temperature Check. We keep all his blood tests. I know it sounds crazy but what that means is we knew when:

  • he was over prescribed his Fludrocortisone when he first started it;
  • the fludrocortisone was becoming less affective, and therefore it needed to be increased;
  • he is low on cortisol rather than just tired;
  • he is low on salt and needs to get some more into him;
  • he has an infection that needs treatment;

Why is knowing YOUR numbers important?

If you have a chronic illness, YOU, not the Dr’s know when you need to seek help, and when you can manage it at home.

If you rock up to the hospital with a BP of 90/60 according to the books it is not a problem (maybe you need to drink a little more), but if your normal BP is 135/85, then 90/60 is a big difference and there is probably something wrong. Also, you have probably already tried drinking water. For some reason many Dr’s seem to think that you are an idiot because you haven’t been to medical school and they have (especially the young, newly trained or still training ones). If you can then turn to them and say “I know my normal, I have tried correcting this myself, I need help” then perhaps they will listen to you.

We had to do that once. A Dr tried to tell us that a creatinine level of 125 was “normal” for Derek because he had that level once before (yes, 3 months after kidney failure, which had been 18 months previous). We knew that for him normal was 110-115. She ignored us, and didn’t treat the dehydration (the 125 was a text book sign). He was admitted to hospital in Crisis and the next day a senior Dr came in, took a look at his bloods and said “put fluids up, he is dehydrated”. The same resident did not bother comparing a chest xray from when he was well, to the one she had taken that night. Had that occurred, she would have seen he also had the beginnings of pneumonia. But because she didn’t know HIS normal, she missed everything.

I wrote a complaint, not because she didn’t know his normal, but because she wouldn’t listen to us when we tried to tell her his normal.

Taking time when well, to find your normal may possibly save you a lot of stress when you are not “normal” for you.

For Want of an Emergency Injection!

Some people wonder why I keep going on about Adrenal Insufficiency, and key trying to raise awareness. The reason is, knowledge can save lives.

Recently I wrote a booklet called “Did you really just say that”. It is a compilation of quotes from Medical professionals to Addison’s patients and was written because of a discussion in a closed forum about what Dr’s had said to various patients about Adrenal Insufficiency.

The reality of what has been said by medical professionals (some who should know a lot more about the condition) and why we all have a problem with it, has been hit home to us all in a way none of us thought possible.

On 4th of January a beautiful young lady called Katie (24) had a common virus. This was something any normal person would shake off. She had started to feel unwell so went to bed. At some point during the night she was found by her parent unconscious and not breathing after they heard her fall..

They called an ambulance. They could not give her an emergency injection at home as they didn’t have one. The Ambulance service could not give her an emergency injection, they didn’t carry one.

Her Dr had previously said:

“It’s not a big deal, you should just take your hydrocortisone and you should be fine, don’t be over dramatic with the injection, you live near ER’s it’s not that necessary.”

Derek was also told after diagnosis that in New Zealand we were never that far from a hospital, so would never need an emergency injection. We ignored the Endocrinologist that said that and always make sure he has his on him. And this proves us right to do so.

Those with adrenal insufficiency are always told “don’t take extra hydrocortisone unless you have a temperature, are vomiting or are injured.”

With Adrenal Insufficiency,
when you go down,
you can go down fast!
Really fast!!

Kate was a college junior. After struggling for a while, in 2015 she began to improve and was able to return to college and start “living” again.

Then one day at the beginning of this year her mother announced on her facebook page”

medical

“On Sunday Katie became just slightly nauseous, a possible stomach bug. She said she was managing, no vomiting yet. Sometime through the night she must have become very ill. With Addison’s Disease the electrolytes can plummet dangerously low very suddenly At 6:30am Dave and I heard a loud crash. She had collapsed in her bathroom. It took a minute, two? to get into her room as her door was locked. She was not breathing. Dave began CPR, EMT’s were summoned and arrived in 2 minutes. Thank God we live close to the station. Thank God we were home. She was rushed to the trauma unit, unresponsive, but stabilized medically. We were told she had suffered cardiac arrest and later informed of multiple strokes. She was moved to the critical care unit and placed on hypothermic cooling to save brain function.  Monday, Tuesday and Wednesday she remained on full life support. She is fighting. Yesterday she responded to me warming her feet and nodded her head when I asked if she wanted a warmed blanket. She was on so many means of support that her room had to be specially cooled due to the heat of the machines.

…… 36 days on:   “[we both felt] bullied by this pompous, arrogant man who has no right to be a Dr. So much for taking a life threatening disease seriously. And so this continued from one [hospital] Endo to the next. Not one ever treated this disease with the knowledge or respect or seriousness that it deserves. Katie was so under and over medicated that she was hospitalized more than 45 times the first 4 years after diagnosis.

For the past year she had it more under control without using an Endo, her GP was managing her better than anyone before.

So as I sat in our friend’s home yesterday, the three of us crying as [my daughter] lies in a subacute care home, we wondered; would she be our beautiful vivacious Katie right now had she not been undereducated and intimidated by her Dr’s?
For now I will have to speak up for [my daughter] and all of the Addison’s patients because she can’t speak and likely never will. Her time spent in a PVS condition has been painful, muscles contracting, infections, and unable to communicate or even swallow. We are in a cloudy state of day to day confusion with no real prediction of her future. We are for now, just day to day.”

 

For those that don’t know, a PVC condition is a Persistent Vegetative State. A coma like state that she is not likely to come out of. She suffered a heart attack and multiple strokes.

I was going to post this originally on Rare Disease Awareness Day which was 29 February. But that day we were notified of a 13 yr old boy who had Addison’s, who had also got a virus. He went into crisis before his parents realised what was happening. He too suffered irreparable brain and heart damage. He passed away 5 later.

Addison’s Disease Kills! And you never know when you may get a virus that will kill you, or how fast it will hit.

Quite often even though an Addisonian is admitted to hospital in Crisis, if they pass away, Crisis is not put down as the cause of death. It will be the heart attack, stroke, pneumonia, flu, or some other thing. Even if the Crisis caused the CVA/MI, or the pneumonia could have been survived if not for the AI. Hence many don’t realise that Addison’s Kills.

Am I angry/frustrated that this can happen in todays medical world? YES

Do I over react about the way Derek and others are treated by some in the medical profession regarding Adrenal Insufficiency? YES

Do I believe Wellington Hospital (CCDHB) should take more responsibility for their lack of communication that gave Derek this Life Threatening medical condition? ASBOLUTELY.

Do I believe that more medical staff need to be aware of this condition, and what to do? YES, especially ED staff.

Do Derek and I live in fear that he will again end up in hospital with multi-organ failure due to an Adrenal Crisis? OF COURSE. But we will not let that rule out lives and dictate what we do.

Having said that, we will take precautions against things like stomach bugs, the flu etc. So don’t be offended if you turn up on our door step with “only a common cold” or “just a little tummy upset” and expect to be welcomed with open arms. This little tummy upset that you are exposing my husband to could potentially kill him. That is not to say we will turn you away, but we will keep our distance.

Derek has gone into crisis in front of medical staff even after telling them we thought he would. When asked by his Endo later why he went into crisis, we thought about it. It was because we listened to his Endo about something we thought was an early sign of extremely low cortisol and impending crisis which the Endo was sure wasn’t. In fact, the Endo was adamant that it was not a sign of low cortisol. So Derek didn’t take extra cortisol until it was too late. He went from “just not feeling right, with this one symptom to crisis within an hour. Most of that time was spent in ED trying to get help.  We know better now.

The medical staff at the hospital ED department didn’t recognise the crisis when it happened. Why? Because a Crisis is never Text Book. Each Addisonian will react differently in crisis.  You will not get ALL the symptoms, only some of them. One of the key symptoms the medical staff look for is a decrease in BP to <90/50. The fact is, many AI sufferers have an Increase in BP to start because they have swallowed down so many steroids trying to avoid it. They will check your temperature but they won’t consider it high unless it is over 37.8 (Addison’s causes low body temp, many sitting around 36.0). They don’t tell you that in the medical books though. What medical staff look for is the signs and symptoms as written in the medical books. Unfortunately when you are that sick, you are being shipped off to ICU because you are in shock and your body is shutting down. Personally, I don’t want to see Derek like that again, and will therefore always insist he is treated before he gets to that point.

Two things help keep Derek and others stay out of hospital. One is self-education, and the other is a good support network.

Being told “just take these pills and you will live a normal life. Oh, and learn how to inject, but only after you have vomited 3 times” is not education. In fact, after you have vomited 2 times, you are probably verging on unconscious and incapable (unable to behave rationally or manage one’s affairs). You very seldom have the ability to give yourself an injection and very often don’t believe you need it because by then you brain is not telling you the truth. You are not going to be able to call an ambulance. You must be proactive and seek help before you get to that point. And those around you must make themselves aware of the symptoms so they can also help you.

We are lucky, we have the emergency injection, and have never needed it, although we almost had to use it in the emergency department, but they finally gave Derek the life saving injection he needed and were then shocked to see how quickly it worked.

But for the want of a US$10 injection Katie may not be in the PVC she is now in. Her family may not be sitting by her bed daily watching her in pain.  There is no knowing if giving this beautiful spirit her injection when she was “just feeling unwell” could have saved her from this. But it sure as hell would have given her a fighting chance!

Drs need to understand that what they say, can and does, have a big impact on their patients lives. Yet they never accept when they are wrong (or hardly ever).

 

aiunited

Enter a caption

For more on Katie and her battle, please read
http://aiunited.org/katies-story-adrenalcrisis/

 

I have a cure for Addison’s

tui ad(Those of you that are from New Zealand will understand this ad, for others, it’s about the “Yeah Right”.  Basically, it means what is on the left, is a complete fabrication.)

I belong to several on line support groups for Adrenal Insufficiency (Addison’s Disease) to both help others with Adrenal Insufficiency (AI) and to get assistance with questions Derek and I have about AI.

One thing that annoys many who have struggled to get a true diagnosis, and the correct treatment for AI once diagnosed, is the people that post that they had AI, diagnosed by this herbalist, or that naturiopath, or some Dietitian with a Dr in front of their name and even once by a chiropractor. None of these people have access to the correct blood tests for a definitive diagnosis of either SAI or PAI. They then tell everyone how they have had this miraculous cure by neck manipulation, taking this herbal mixture, or that vitamin concoction, or eating this menu of food. They then try to convince those who have the condition, to stop their steroids, take these natural cures, and they will be cured. “Here, read this, it will fix you.”

If you truly believe you have this condition, go to the UK Addison’s Disease Self Help Group for a fantastic resource on how to get diagnosed, and treated.  Some people have difficulty finding a Dr that understands blood tests enough to correctly interpret the results, or that put their symptoms down to anorexia, depression, psychosis etc.

Here I am talking about, those who come in asking about everyone elses symptoms, so they can copy them, to make it sound like they have the condition.

I have also had people come to me personally and tell me that they heard about a natural cure for AI.

Some of the sites they refer you to look like genuine medical sites. They even claim to be by Dr’s.

And that is not to say that the “Dr’s” don’t have a Doctorate. One particular one has a Doctorate, but in fact it is in nutrition. But he has developed a great, natural cure for AI. He is not a medical practitioner, can not do blood tests (and does not recommend blood tests). He is a multimillionaire by selling “snake oil” aimed at those with “Adrenal Fatigue”.  Unfortunately people thing that Addison’s is simply Adrenal Fatigue and can be cured naturally.

Another such site was posted on one of the support groups recently. Not to encourage us to use the cure, but in share frustration that the member posting it, had yet again been told that they can stop taking steroids, and just eat natural herbs, vitamins, and other cures.

I have also heard someone was told that they could go through a IVIG (immunoglobulin exchange) and they could stop their steroids because fixing the immune system would fix the already damaged Adrenal Glands. Fixing the immune system is great, and can stop an inflammatory attack from doing further damage (it even be used during CAPS), but it will not repair the damage already done.

AI does not only last while you are suffering an attack by your immune system, it is the resultant damage. Even once the attack is over, the damage is permanent.

Sadly some people believe these sites, and can end up in Hospital, fighting for their lives.

The cure this week: Vitamins, Liquorice and Green Tea. (Warning Signs Of Adrenal Insufficiency And Natural Methods Of Treatment)

The issue I have with this one isn’t taking vitamins, it isn’t eating liquorice, or drinking green tea. All of things, in moderation, can be good for you.

The issue is people miss quote research, meaning their solutions can be dangerously wrong.

Grapefruit juice and licorice increase cortisol availability in patients with Addison’s disease: Paal Methlie1,2, Eystein E S Husebye1,3, Steinar Hustad1, Ernst A Lien1,2 and Kristian Løvås1,3

This study looked at the effect of Grapefruit Juice and Licorice on Cortisol.

Conclusion Licorice and in particular GFJ increased cortisol available to tissues in the hours following oral CA administration. Both patients and physicians should be aware of these interactions.

The most important thing about this study (which is what people use to say stop the cortisol and start eating licorice) is that it helps prolong the life of the cortisol in your body.

This sounds great, but it has been shown that over eating of such things as licorice WILL cause other medical conditions especially in Addisonians. The reason. Addisonians (especially primary) suffer from high potassium which must always be kept under control and licorice can decrease your potassium levels.  But there is a warning out there “Despite its apparent use in a few clinical scenarios, the daily consumption of licorice is never justified because its benefits are minor compared to the adverse outcomes of chronic consumption.” (Licorice abuse: time to send a warning message. Hesham R. Omar,)

The catch?   To help extend the life of cortisol in the body, you must first HAVE cortisol in the body. Addison’s Disease/Adrenal Insufficiency means you no longer naturally produce cortisol. What you have in your body is what you take via replacement therapy. With secondary AI you may actually produce a little, but not enough to live. It doesn’t mat­­ter if you don’t have a math degree, you should still know that 0 x anything will still be 0.

Are you getting the point yet?

You can’t increase the effect of something you don’t have. For this particular website to say you should stop taking steroids and start taking their “cure” is actually dangerous.

Education doesn’t always work

As said earlier, I have very recently been the victim of this myself. I spent some time explaining to someone, the problems with Adrenal Insufficiency, what it was, what Derek had to take to stay alive.

I have now been told twice by this person that natural treatments will fix Derek. I should get him off all his medication, and give him “Adrenal Support”, which I discovered when I looked up the product I was told about, was in fact animal adrenal glands with other herbs and vitamins.

Wow, if only. Unfortunately this was the “cure” from 1890’s to 1950’s when they found Hydrocortisone allowing Addison’s sufferers to actually be able to get out of bed (although some still can’t), a lucky some to work, and if lucky (and the medical profession don’t kill you first) to live a longer life.

I am sure I have said before, hydrocortisone is not a Cure for Addison’s disease. There is no cure. Hydrocortisone and fludrocortisone are what is currently used to keep the Addisonian Patient alive. The average Life expectancy is now found to be reduced on average but a lot longer than in 1942 when it was still less than 2 years and where if you had to have surgery, got an infection or even a tooth extraction, it would probably kill you.

Why, oh why, would anyone go backwards to “natural cures” that would if you were really lucky, keep you alive (but in bed and in pain) for no more than 2 years over the synthetic hydrocortisone that is available today.

If you are reading this please DO NOT tell your friend who has Adrenal Insufficiency, either primary or secondary, that you have read about a cure. You will only achieve 2 things.

  1. The loss of a good friend (if they were one to start with)
  2. Manage to make yourself look stupid.

Now you know it, forget it!

That is the Mantra of the Lecturers to Medical Student’s after being told about rare diseases.

I was talking to a Medical Student (just completed her 5th year) while I was with someone at the Emergency Department of a hospital recently.

We began talking about Chronic Illnesses and the fact that the families of those with Chronic Illness know more than many Dr’s about their particular condition.

She asked me about Derek’s illnesses…. “do you mind me asking what he has?”

No, I did not mind her asking. I am all for education.

I told her Antiphospholipid Syndrome. “Oh” she says, “I have heard of that”.

To say I was very surprised would be accurate.

I then asked her how she had heard about it.

Apparently, they were told about it in a Gynecology Lecture, had to learn about it in relation to pregnancy, and had a question on it in their 5th yr Exam.

They were then promptly told to forget about it, as they would never meet anyone with it.

She was not aware that Men could get it, or that it was something that can and does occur outside pregnancy!

Given that I know at least 4 women with it, and Derek has it, it isn’t that rare.

She knew nothing about the Catastrophic variant  or even that such a beast existed.

This is not the first time I have heard this about rare conditions.

Every time we query a Junior Dr or fully trained Nurse they say the same thing about Addison’s Disease/Adrenal Insufficiency. “We are told it exists, what the symptoms are, then told “but don’t worry, it is so rare you will never meet anyone with it”.  They are then shocked to hear about Derek.

If he is in hospital, the Medical Students are told to go see him, they will never meet anyone like him again!

No, they won’t. Because if they have a patient with either of Derek’s conditions, the patient will probably die before they are diagnosed.

Then there are those patients who suspect they may have a rare chronic illness is who are frequently (almost always) told “No, you can’t have that, it is too rare!”

Another useful thing all Medical Students are taught is: “if you hear hooves, look for horses, not Zebras.”

Just because a condition is rare does not mean it doesn’t exist.  It also does not mean that a patient is imagining things.

So what does this mean?  It simply means you look for Zebra’s if the Horses aren’t in the room.

How can you rely on the Medical Fraternity, when they so often get it wrong.

That is not to say they should know everything. What they should be doing is listening to their patients. Don’t rule out things just because they are Rare, or not “normally” found in that sex.

Listen carefully to your patients. If what you think is wrong comes back negative, give your patient the benefit of the doubt. Do the basic test to see if it IS  a “Zebra in the Room”. If you want to be arrogant, do the test to prove your patient wrong.

What is the worst that can happen?  The Patient is right, and you have to apologize.

Heaven forbid a Dr should find out they are not GOD!

DHEA – To Take It or Not

What is DHEA?

Dehydroepiandrosterone (DHEA) is a drug that those in the Addison’s world talk about.   Some talk is positive, some is negative.
Some have tried it and think it is the best thing since sliced bread, others have tried, and stop quickly because of their perceived side effects.

Technically Dehydroepiandrosterone (DHEA) and DHEA sulfate (DHEAS) are the major circulating adrenal steroids and substrates for peripheral sex hormone biosynthesis.

DHEA is a Hormone precursor that is produced by the adrenal glands. The problem is, as a rule it is not replaced when your adrenal glands fail, especially in men. For 2 years, we didn’t know anything about it. It wasn’t an option talked about by Derek’s Public Hospital Endocrinologist. It was something I started hearing about in the Forums.

After discussing DHEA with a number of men in the forums I talked about it with Derek. He started investigating. He is not one to listen just to those taking it. He wanted to know the scientific information behind it.   He read multiple studies.

After 6 months of investigation we went to our Dr and asked if Derek could trial it. She had heard of it, but never scripted it so sent him to a private Endocrinologist who worked with “those with complex endocrine issues”. We spent an hour with this Dr.

At the end of that time, we walked out with a 3 month trial of DHEA. The catches:

        It is a prescription only medication.
        It is not available through your normal pharmacy.
        It is not subsidised, so you have to pay full price.
      You have to go to a compounding pharmacy.

DHEA and Testosterone

DHEA increases your Testosterone, in both women and men.  There is he risk of too high a rise in Testosterone because Derek has had, but is currently clear of, Prostate Cancer. We are aware that pushing his testosterone up too high may be an issue.

We decided the trial was worth a trial it.

We knew all this going in. We also hoped (but anyone who knows ACC wouldn’t hold their breath) that as this was a hormone produced by the Adrenal Glands, ACC would pay for it.

Step 1 – Get blood tests of important levels as a base point.

Step 2 – Send script to the Compounding Pharmacy. The Endo gave us the name and contact details. We then contacted them to find out what had to happen.

Step 3 – Wait. Because the drug had to be made for us especially, we knew it would take a few weeks. It finally arrived.

Step 4 – Trial Begins. There needed to be some provable results so we got blood testing. We started with levels of cholesterol, testosterone and DHEA.

Derek began the Trial. – 25mg/day

After a week he felt he wasn’t quite as tired as he normally was by the end of the week.  I actually observed one night about 5 days into the trial, that he was still up working on his tablet and watching TV at 9.15pm.

His normal bedtime for the last 3 years has been 7.30-8.00 pm.

Was this wishful thinking, or genuine result? Time would tell.

After a month I had noticed a difference. He seemed happier, more relaxed, less fatigued (we were able to do more things), but the biggest difference was he became more “loving”. He was not back to pre injury, but he would grab me as I walked past and give me a hug. Something he hadn’t done in a long time. Not that he hadn’t wanted to, he just hadn’t had the energy to do it.

After 3 months we had his levels checked again.

Testosterone Range – 9-25 nmol/L
Pre DHEA – 15.3 nmol/L
Post DHEA – 19.7 nmol/L

DHEA Serum Levels Range: 1.4-8.0 umol/L
Pre DHEA – <0.6 umol/L (undetectable)
Post DHEA 2.6 umol/L

LDL/HDL ratio: <4.0
Pre DHEA – 6.1
Post DHEA – 6.0

The Trial Ends

After 3 months it was decided Derek would take a 2 week break while we got another script, and to see if there was any obvious change.

Within 4 days, he was back to going to bed around 8.00pm at the latest. He was struggling to work properly, he was finding it hard to focus on things for too long.

Monday of week two he struggled home from work and collapsed into his chair. He could barely function. Tuesday got worse. Wednesday he was barely working. He took extra cortisol.

Thursday he again took extra cortisol, had a bad headache, and his blood pressure had begun jumping for no obvious reason. His mood was that of a person fatigued to the point of no patience.

Another thing we noticed is that at some in the first day or two of stopping the DHEA he had knocked his head, and had got a small “mark” which bled. Every morning for 2 weeks he would wash his face, and the small mark would bleed. On the Saturday before he started the DHEA again he was walking into the bathroom and walked into the door frame. He cut his forehead just below the previous mark, and right through his eyebrow. It wasn’t a serious cut, but enough that it took a while to stop bleeding.

The telling issue came at midnight Thursday night/Friday morning of week to off DHEA.

I woke to find Derek tossing and turning. I heard the tell tale signs of burping. I lay there, not letting him know I was awake, as he hates disturbing me.

He had developed a headache before going to bed, and by midnight it was a lot worse. He eventually took panadol and got up for a cup of tea. I went to the kitchen to see him, get him back to bed and, after resting for 5 minutes, I took his BP. After being in bed for 6 hours, it had risen to 157/99.

At this point I insisted he took more HC. We had two more days before we were going to have him take the DHEA again.

Should we give up and start it again?  Was this rapid downhill run truly due to the lack of DHEA?

He suffered on Friday, taking double dose HC. He was not ill, but showing signs still, of too low a cortisol level.  Saturday morning, laying late in bed, Derek asked me if he should take the DHEA or wait till the Sunday.  He was getting worse by the day so I told him to take it again.

Back on DHEA

Derek started taking DHEA again on Saturday, Sunday he felt the same (we didn’t expect anything else).  We have settled on 25mg/day.

Monday he worked from home. He felt tired, but not as bad as the previous week.

Tuesday night our youngest (18 yr old) came into the lounge and asked if we were going to bed, what was Dad still doing up.

We suddenly realised it was 9.45, and he was tired, but not struggling to the point of being desperate for bed.

Other things we noticed.

We have noticed some other things significant to Derek.

The most telling was the small mark on his forehead that had continued to bleed each morning on washing his face for the whole 2 weeks he didn’t take DHEA.

By Monday morning, not only did that mark finally stop bleeding when Derek washed his face, but so did the cut he received 2 days previously.

Since his CAPS event, he has suffered from sharp sudden migraine type symptoms when put in a fight or flight situation. Nobody has been able to get to the bottom of this. The only thing we know for certain is that, if it is a visual issue, the pain begins on the right side of his head, if it is auditory, it begins on the left.

What Derek didn’t realise until he stopped taking the DHEA is that he still suffers these incidents, but the sharpness of the migraine has been reduced when on DHEA. It wasn’t until he suffered a fright in the car on the second Saturday and he got the old “sharp” pain in his head did he realise that in the last 3 months, the pain had been more dull than sharp. He also suffered 3 events in one day.

Clearly this is a Plus for Derek.

The second thing he has noticed is his sleep. We have Fitbits. We use them, not only to track walking, but to track his sleep.

When not on DHEA Derek tends to “crash” for long periods of not moving.  When on DHEA his sleep is more of the normal 3 levels of sleep that “normal” people get.

During the 3 months trial period Derek got a cold.  It is not the first cold he has had but this time, it didn’t come to anything. He took an extra couple of days at home, but he didn’t need to take time in bed. He was able to function. This was a big change from previously when he would end up in bed, taking double or tripple dose HC for 2-3 days just to function.

He is going to continue taking this for at least a year to see if there is further improvement. The fatigue is still there, that is a side effect of the exective dysfunction, the effort to eat with his dysphagia, and the adrenal insufficiency, but it has definitely lessened. With some of the other improvements, for Derek at least, DHEA is something that should be replaced.

As a foot note. The Accident Compensation Corporation has agreed to fund the DHEA, our local Chemist is able to source if for us (from the compounding pharmacy so we simply take the Script to them when Derek takes other scripts in, and now the Dr knows what level to prescribe, she will do the pescriptions.

Today, all is good with the world (at least the world of DHEA).

If you are a male with Adrenal Insufficiency, and you haven’t thought about this hormone, it is worth giving it a go. There isn’t a lot of research where men are concerned, but that doesn’t mean it isn’t right for men. Speak to your Dr or Endocrinologist. If they say NO, ask them why, make them justify not giving it, rather than them making you justify why you should have it.

WARNING:  there are two types of DHEA.  Be careful which one you get.

Wild yam and diosgenin promoted as a “natural DHEA.”   In the laboratory DHEA is made from diosgenin, but this chemical reaction is not believed to occur in the human body. So taking wild yam extract will not increase DHEA levels in people. Individuals who are interested in taking DHEA should avoid wild yam products labelled as “natural DHEA.”   Copied from <http://www.nlm.nih.gov/medlineplus/druginfo/natural/970.html>

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