Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!

Advertisements

ME/CFS: How I got rid of my structural brainfog.

I wrote this blog entry for the ME forum RisingPhoenix.me
I’d thought I post it here too because it might help someone who hasn’t found that forum yet.

I noticed my daily brainfog has now lifted, it has been better for a year and a half now. I think I can name some things that helped this:

1. HEALTY GUT
I have a strict diet called Homo Optimum. In this you get your energy from fats, not carbohydrates. Because of this I eat very little, thusly sparing digestive energy. I also stopped eating anything that upset my tummy or my brain. This includes ‘healthy things’ like all vegetables, milk, nutmeg, garlic, plant based oils. I’m not arguing with my body, if it upsets it I skip it. Symptoms are abdominal pain or excited brain

2. DIET
I now mainly eat egg yokes, cream, chocolate ganache and chicken soup (from scratch). With salt and vinegar.

3. LEVEL INSULIN
No blood sugar peaks anymore. Eating a fat based diet helps this.

4 MINERAL SUPPLEMENTS
full spectrum supplements. All minerals aboard! Yes this makes for expensive pee. But my cells are missing nutrients and I need to offer them. Gradually I found some supplements don’t feel good (B6, Calcium) and some I nééd (Magnesium, Lithium, VitD3). Adjust accordingly.

5 CORTISOL SUPPLEMENT
structural supplementing with hydrocortisone. My adrenals were not well, confirmed by tests. I’ve gradually aided them with hydrocortisone (5mg per day). Once I started supplementing structurally about a year and a half ago the brain fog lifted permanently (10 mg per day). It also put my adrenals out of commission six months ago, they stopped working altogether. This was a risk I took, I’m not whining. (In the future I’ll see if they want to start again, for now I’m supplementing 20-30 mg HC daily and feel good on it)

6 NO STRESS
serious downgrading of daily expectations. You know the Spoon Theory, I presume. I have about 5 spoons of energy for one day. Getting Up in the Morning, Getting Dressed, Getting to Bed at Night, Shower or Cook a Meal. That leaves one spoon for something else: Write a Letter, Call a Friend, Clean the House, Make a Drawing, Post a Letter. I choose one and only one of these each day. And am content when I achieve it.

7 TAKE HORIZONTAL REST
serious resting. I need to go lay down 45 minutes after I had a meal. This is crucial for digestion. The 45 minutes between eating and resting are a Golden Hour, a little time I can be active. But after that: need to lie down. For about an hour. Or two. Under a woolen blanket because I’ll get cold.

8 PROGESTERONE SUPPLEMENT
calming the system by supplementing enough body-identical Progesterone. This is not a sex-hormone. It is the precursor for all adrenal (medulla) hormones and a soothing neurotransmitter for the brain, in men and woman alike.

I’ve done most of these things from the moment I fell ill, in 2008 (6 years ago). I didn’t get them balanced until a few years ago, that’s when things really got better.
The first few years I had structural, debilitating brain fog. All day, every day. Couldn’t keep my balance, couldn’t remember my name.

LUCKY BREAK: USING MY DNA MUTATION
I had the fortune though, of having two hours of alertness during the night. This is not illness-related. It’s because of my natural tendency to have too much excitatory neurotransmitters ((nor)adrenaline, dopamine and serotonine) in my head. The very opposite of brain fog! It’s because of a DNA mutation most people see as a burden (mao a)

This causes me to lie awake after 5 hours of sleep every night, I’ve had this from birth. (In fact, I’m using it to write you this)
Even when brainfogged during the day I would still have this alert insomnia episode at night, able to read medical journals and leave notes for the brainfogged-me to follow during the day.

I’d wake up and find a note with “magnesium!” on it. And have absolutely no idea what to do with that…
Nighttime-me quickly learned to write better notes: “order magnesium-citrate from xxx.com and take half a pill in the morning and at night.”

ON MY WAY TO HEALTH EVEN WHEN I WAS BRAIN FOGGED
Because of this nightly trait I was able to do the following reasoning when I got ill:

  1. this is a system wide failing. There’s no way to pinpoint cause and effect, all major systems are down.
  2. this also means it doesn’t matter where I start to tweak the system. Anywhere will do. I choose nutrients. Cells and body need nutrients to work.
  3. what are the nutrients scientists give cells in their petri dishes? That’s what I’ll start feeding my cells.
  4. I notice my poo is light and floating. On this poo-site it says it lacks bile. Biology101 says bile is produced in reaction to stomach acidity. I need to acidify my stomach acid. Order betaine HCL (This might aid digestion too.)
  5. I notice my blood pressure is low (90/60). Hey, low blood pressure is a good thing, right? Oh merde, it actually means blood and nutrients aren’t pushed into tissues and cells. I need to aid this, I need to raise my blood pressure. Or lower other demands on its system (like standing up). And/or “pulling” blood into the tissues by activating the back office system: the lymphatic system.

So that’s what I started doing. Amend nutrients intake, uptake and delivery into the body cells. And removal of their waste.

On step 2, when I chose where to start helping my body: I had to choose one thing. I couldn’t follow multiple subjects, I just didn’t have the brain cells for that. But like I said, I deduced that it didn’t matter which road I chose. The body would respond to any which one.

Other choice options I felt I had were: trying to restore Sleep; Hormones; Stress Level; Nervous System or Immune System. I touched upon all of these in the following years. I cycle through them it seems. Only DNA has been new to this list. And Immune System has never been much of a topic with me, it seems. Probably because of low cortisol = high immune activity. And initial tests didn’t show Lyme etc.

BE KIND WHEN BRAIN FOGGED
In the first years, when so severely brainfogged, I had lots of notes on the fridge including which supplements to take and reminders to put on a woolen hat and the central heating and to make tea for myself often. Because I’d get cold and then felt extra miserable. But I would forget to put on the heating. Or felt I was not worthy to spend the money on heating. Yes, brain fog comes with silly notions.

That’s why I had my mum or my husband or even strangers write notes: “put on heating! enjoy a warm foot bath. You are allowed to.” To battle these weird thoughts.
There would be love notes there too, just to remind me someone loved me. That I love me. Picture of a pet.

TODAY ONLY OCCASIONAL BRAIN FOG
Nowadays I am free of brainfog on a daily basis. I do get fogged now and then but it’s always tracing back to something I ate or when I did too much. It lifts when I go rest or sleep. When it’s because of food it may take a few days to subside. Or two weeks if I really messed up (aged cheeses, delicious gluten bread, having a piece of cake on a birthday, experiencing life stress). I avoid this now, it really is not worth my time.

I realize this is only what worked for me. Strongly based on my personal signature of this disease. For example, in time I learned I am Progesterone deficient and have excess of those excitatory neurotransmitters and have a belly that doesn’t like gluten and an immune system that’s going strong. This will be different for everyone on these Forums. (I’d say I have CFS, not ME)

GETTING THROUGH THE HAZY DAY
What is the same for everyone though is that we need the substrates for our cells (take salts and minerals) and that we need the bloodpressure to get them to our cells (lie vertical, take salt or HC). We need to eliminate waste from our cells (stretch and yawn while you lie in bed, drink warm water, get bile flowing) and we need help when brainfogged (have a supportive list on the fridge, then try and remember to look at it)

And most of all, I remember the difficulty of getting through the day when severely brain fogged. In the end I did so by only trying to get through the next half hour. That was all I needed to do. Survive the next half hour. That’s doable. You can do that. And remember: you’re worthy of a warm body, wear your hat.

getting a gift

last Saturday I was at a wool gathering and there was a woman with felted fleece rugs. I kneeled down and ran my hands through the locks. We got to talking, celebrating felt and wool and women felting.

I briefly ran away to get my felted Sheep bag to show her and she was delighted: (pardon the cat)

we talked some more, she zoomed in on my illness and we talked how good wool is for the ill. It soothes, it protects, it warms, it connects you with nature. It was a lovely talk.

Soon afterwards I went to find my friends to go home. The lady came after me and gave me…. on of her rugs. The most beautiful there was! her favourite Ouessant!

I was stunned! She made this by hand and it took hours and hours and it had quite the price tag on it and she gave it to me. We didn’t even know each others name!

As you know by now, it doesn’t take much for my blood presssure to plummet and a nice gift will do that in a heartbeat. So I said: “Excuse me” and flopped down on the floor. I was embarrased of course and I nervously explained a bit about adrenals and blood pressure.

She did the most amazing thing: she put the fleece under my head AND SAT DOWN BESIDE ME. To chat a bit. As if it was totally normal that a person drops to the floor when something nice happens. As if I am not a freak who cannot handle normal life.

It was so heart warming, I could cry. Which didn’t do my blood pressure any good so I had to lay down for a bit longer. We had a lovely chat.

Later I went home with this hug in the form of a handfelted fleece. It lays on my couch now, where I spend lots of time. I feel so encouraged by this tactile gesture by a complete stranger that this week I started my search for a specialist who can handle my case of adrenal failure combined with ‘women issues’ aka progesteron shortage. So that I do not have to do this alone any more, wondering every day if I am doing enough or if I’m doing too much and am destroying my body.

It’s amazing to know that I am the sort of person that you can talk to and who is so likeable that you give her something you made with your own two hands and were asking good money for. It is such a boost for me to know I am such a person, even when I am as ill as I am and am white as a sheet, forget my words, stand there trembling, mumbling and confusing myself and others. A shadow of a human most hours of the day but when talking about wool, something shines trough. Something connects.

This lady, she gives felting workshops to do exactly that: celebrate the human connection. thank you Maria, for this gift :)

“This doesn’t mean you’re old!”

Blundering through life in the city this week…

Nothing has come of my plans to work, I need all my time and wits to manage daily life. This may have included a spectaculair crash in the doctors waiting room when they had my appointment time wrong and I timed my energy peak accordingly. My crashes come with incoherent sobbing and a need to succumb to gravity NOW. Although all physically caused it looks quite hysterical. So íf I were to confess I crashed you can imagine it was a spectacle and I was mortified with shame afterwards.
But I’m not telling.

Neither will I confess to getting on a wrong, slow train to nowhere where I needed to be. Nor whether or not I forgot the most important pills for this week at the cabin, together with my all knitting charts.

I will tell you about something I did right this week: I got reading glasses. The optician suggested them and I put them on and my eyes liked them instantly. Much more rest. So I was sold! Give me two!

 

 

That’s when the optician spend 15 minutes convincing me there was no shame in getting reading glasses at my age (41), it doesn’t mean I’m old. At all! Please don’t think that. Even although most people don’t get reading glasses until they are 50 years old, you are by no means old by getting them now.

???

I have never associated tools with age. Anything that makes your life easier makes you look smart, is what I think. Glasses, hearing aids, pills, prosthetics, cane, roller blades, ear mufflers etc.

The optician must get some weird customers… I suspect there is a generation sometime before mine that doesn’t want glasses or hearing aids because ‘they make you feel old’. So now I feel young because that’s not me. I’m one of the newer guys who favour technology. We are Borg, baby!

… oh… now I feel old again because clearly I do not look that age. The optician thought I looked the age of the older must-not-look-needy generation…

I better go shopping for some beige coat then….to dress the age I look…

luckily I can’t! because my energy is needed elsewhere  (making and eating lunch and resting and than trying to wrestle the doctors office administration habits again to get a new prescription for the pills. Round 3.)

 

These are my reading/knitting glasses:

Tuesday: a day off work or a day of work?

It’s about 2 o’clock midday now. I have not recuperated sufficiently from what happened this morning to do some work.

But I have ingested too much cortisol and it’s unavoidable entourage (food and chocolate) to lay back and rest!

Earlier I sat down at my work place and tried some work but it didn’t go well.  I’m too restless to work. Too wired to rest.

I think I’ll do some physical activity to get some of this stuff (drugs, sugars) out of my system. That is probably winding skeins of yarns and baking muffins (pumpkin+bacon+ginger)

well, at least I’ll have something to knit and something to eat when I crash and need to rest, later (this week)

I still aim to do some bacteria writing stuff today though.

UPDATE:

no. I did not refind my balance. No skeining, no baking. Just chilling on the couch. I did get a chunk of knitting done though. Handmade, formfitting sweaters are important too. I watched two episodes of Stranded on YouTube, by Les Strous. I liked that very much. Especially how important the mental part is in surviving. Keep kalm. Think.

The other thing I noticed is that he got brainfogged in the winter when he did not have enough carbohydrates in his blood. I recognized the brainfog, when you cannot protect yourself from your own stupidity. I do not have a lack of carbohydrates in my bloodstream. But they do not get through to my brain. I think because of low blood pressure, there’s just not enough pressure to seep them through the blood brain barrier. Next time I’m at a loss, I’ll try and lay down on the ground, to level the pressure. (I do this when I’m overexcited and get whoosy. Now I will do it when that eery feeling sets in, where you know you are not coping but cannot identify risks or threats)

knitting and survival tips, not too bad eh?

 

PS. I’m really looking forward to put in some writing tomorrow. Bacteria ahead!