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!

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Doc says: go pee!

Well, no gruesome lumpy news from my docter this morning! My liver and gallbladder look fine and blood results indicate they work just fine.
My kidneys are being weird however. One has an “angiomypolygoom” (phonetic doctorspeak) which is a cluster of blood vessels and is called a “storks bite” when it presents on the outer skins of babies. Nothing serious.

Nothing serious, just a Stork giggle

pic by Turkkan35

What ís serious though, is that my kidney swells up whenever my bladder does. This is not good. Not good at all.

I have not found the medical term yet but doc says I NEED TO PEE MORE OFTEN. Really.

Great.

How do I go about that? erm….

  1. whenever I think of drinking, make a cup of tea
  2. whenever I pass the toilet, go pee
  3. throw something colourful in the middle of the room, whenever I see it, go pee.

I am going to try to pee every hour I think.

pic by Alan Witikoski

My doctor explains things weird. “Cholesterol is a bunch of buses running through your veins.” LDL-busses break down all the time, spilling their passengers and clogging the roads with their bus-carcasses. Good cholesterol busses don’t break down. And leave no passengers stranded.

I have high cholesterol, both LDL and HDL. Which makes the ratio ok. I could take pills, he said. Or I could nót take up smoking. And don’t get Diabetes. I had to promise. “Promise me you won’t put sugar in the tank of your buses!”

HAHAHA! Cackle! Cackle! Cackle!

pic by Andreas Krappweis

My higher intake of Zinc and vit D over the last 6 months has now put me into the right zone. Result! I can lower the Zinc somewhat. I had already noticed I no longer have Copper toxicity symptoms. Much. It was a tiresome Summer, getting the Zinc up but now I can go down to maintenance doses. Yay!

Then there was the cortisol blood level. Measured at 8 in the morning, before I took pills or food.

Value came back as 0,3

yeah…. I did notice I trembled a bit…

normal value is 25 to 60

yeah…

pic by Luka Rister

I am going to thing about that one for a bit.  Cause. Consequences. Strategy.

We finished the consultation with a small lecture about the lining of the belly. This is a most interesting organ. It reacts to whatever upsets one of the organs. It moves in, it migrates towards the upset place. For example, it might encapsulate an inflamed appendix, trying to fix it. And it does fix it (if the inflammation doesn’t kill you first).

I have a bit of fluid in “the cellar” of the abdominal lining. Indicating one of the organs in my belly was upset. But not enough to get a major reaction from the lining. Something as “small” as an egg bursting free (ovulation) might cause that small puddle. Not to worry.

Then we talked about linear medicine and medicine that addresses levels of functioning health. Linear is when you fall, you break something, you get a cast, you heal. The other has to do with levels of health. When you function at a subnormal level, as I do, the body still is in harmony. It has found some sort of balancing act to keep everything going, albeit on a lower then desirable level. This balancing act does have a price.  This will probably cause you to stay at this level for a long time or taper off to a lower level. You never jump upwards to a higher level.

Health professionals who address this kind of medicine contemplate nudging your body out of its balancing act to initiate it to take up balancing at a higher level. To enable this higher level, the body needs some help or supplementing of what it is missing. And a solid nudge to break its habit of functioning at the lower level.

He thought an osteopath might do me some good, help my intestines to get to a higher level of functioning. I’ll think about that too. For now I think that I can also get some enabling impulses from taking my rests dutifully and reconsider some foodstuffs.

pic by Cécile Graat

Now I’m home and I just send a thank you note to the professionals at the hospital who took my blood samples last Wednesday morning. When I presented at the counter I confessed to being a “spesiul snowflake” with low cortisol and that’s why I’m shaking and crying. They didn’t laugh or rolled their eyes, they just took care of me. Put me into the separate, soothing room with animals and animations on the walls. I was as stressfree as possible and very grateful not to be thought a nuisance.

With cortisol at 0,3 instead of 25-60 I was a trembling spesiul snowflake indeed…

pic by Carlo Winkelmann

Now I want to go and ink. I made some pencil drawings over tea this morning. But I am a good little snowflake and will take my rest instead. Passing toilet, going pee.

being a Copperhead….

Taking Zinc releases excess Copper into the bloodstream. Or: already free floating Copper cannot bind to receptors because Zinc is wrestling it for them. This causes Copper toxidity symptoms: madness, fatigue, liver pain. Caused by skewed brain chemistry, an overtaxed body, detoxifying efforts. Copper is toxic in high doses. As are all things.

But Copper is invigorating also. There’s something like ‘a copperhead’, a type of person that shows behaviour coherent to high levels of Copper. As I am shedding the last of this unexpected Copper overload my Copper induced fatigue has now gone and I am riding the Copperhead wave: my mind races, I’m thinking a 100 grand things at once, I’m witty, full of plans. No time for sleep, I’m a genius! (I also exhibit behaviour my friends more readily recognize as autistic.)

you see, Copper is like cafeïne. It pokes around in the neuro transmitters. Altering who you think you are. Just like estrogen does. And MSG. And LSD. And Nicotine. And sugar. (how about their antagonists? The stuffs that sooths the mind such as Zinc, Magnesium, Progesterone, kittens. Do they too alter who I think I am? a question for another day, when I’m not running around in my own head!)

Since the treats of ‘a copperhead’ pretty much describe how people know me I may have had high Copper levels all my life… I do know I’ve had low Zinc for years.

And as the symptoms this excess Copper gave me this week look ridiculously like my symptoms as they occured from 2009 untill 2011 I wonder if Adrenal Fatigue is rooted in high levels of Copper.

hmmm, I wonder…

PS: here’s what happened to me for the past 7 days:

Took the Zinc pills (Biotics, 23 mg) for 3 days in a row. This released surplus Copper I had stored in all nooks and crannies inside. Copper floated through my blood, poisoning my tissues and my brain. Basically I was thrown back three years healthwise and was severely brain fogged, mentally impaired (PMS to the extreme, not able to make decisions or even simple choices) and extremely fatigued. Laid on the couch, had only two spoons left for a day.

‘Luckily’ it also brought back my cortisol peak in the middle of the night. After 5 hours of sleep I awake with a racing mind (and a body craving more sleep). The peak enabled me to surf extensive on what was happening. I found out about the Zink releasing the Copper. I found a lot of Adrenal Fatigue patients who have experienced this same reaction. They all listed the same symtoms. People warned that this reaction will cause people to stop with the Zinc pills. It’s what I did, a few years ago.

But really, we shouldn’t. We should shed that excess Copper because even stored in nooks and crannies it is not good to have. I suspect I may never recover to an acceptable level of health if it’s still there. There needs to be a healthy balance between the Zinc and the Copper. So I set my mind to detoxing in the near future. But not in the way it was going on now. I never want to go back to how I was two or three years ago!

I was fairly scared I had already undone the good work because I felt utterly rotten. But I decided to give it some time. I  stopped all Zinc, went back to absolute healthy basics in foods and activity and wanted to help my body to get rid of the Copper floating around now as much as possible. I laid on the couch. Took my cortisone and progesterone. Cheered on my liver. Took a bit of fibery meat to add some gristle to the digestion track. Took 1000mg of vit.C. And I drank lots of nettle tea. I have one brand (Jacob Hooy) that agrees with me very well. Better than other brands. (You just have to find out what works for your body. Without letting your mind run interference or telling you what should be working. I’m not arguing with my body anymore.)

After three days of despair and fatigue I slowly started to feel a bit better. The fatigue was still there but during the day I now felt more like myself, more cheerful. But in the evening the doom and gloom would start coming in again. On the fifth day I could take a shower. On the sixth day I smelled awful (must be waste leaving my body). I still wake every night and this is exhausting during the day. I’m now where I was a year ago, I think.

I am VERY PLEASED to notice that my body recuperates. And so fast too! It only took 7 days. It was a scary episode. The despair was so black…. The disappointment with being sick and canceling nice meetings was heart breaking. The grieve over my brother was scary. But that all has passed now. I’m back to being fairly optimistic. Still brittle though. The wind outside tires me, I’m wearing earplugs all the time, I can only knit simple knit stitches. And I have not taken a second shower. But I’m here again. Found myself a new puzzle to solve for distracting my racing mind, as you’ve seen in my previous post. (I’m not thinking about writing, jobs or bacteria at the moment. It would make me cry. Ambition has creeped in there you see.)

I now feel I can take Zinc in a controlled way and shed the excess Copper. As a matter of fact, I took 5 mg of Zinc today. Even though I’m still hyper from the previous pills. I still wake up every night.

There’s an anomaly in that pattern, btw.

So normally it goes like this:

  1. go to bed, fall asleep as soon as you smell the pillow (ew! it’s just figure of speeeeech)
  2. wake up after five hours
  3. lie awake for an hour and a half, surf.
  4. get drowsy again and sleep for another 2 hours
  5. wake up groggy, take hydrocortisone
  6. wait for hydrocortisone to kick in (45 minutes) before getting up

only that’s not happening!

it now goes like this:

  1. go to bed, fall asleep as soon as you smell the pillow (ew! it’s just figure of speeeeech)
  2. wake up after five hours
  3. lie awake for an hour and a half, surf.
  4. get drowsy again, put the dimmed light out, close eyes……
  5. after 30 minutes decide you’d rather read some more than wait for sleep to come
  6. after another hour of reading decide the night is lost and take hydrocortisone to start the day
  7. wait  for hydrocortisone to kick in…
  8. in 30 minutes fall fast asleep!
  9. wake two hours later, remarkably refreshed.

???

I’ve got two guesses working theories:

1. my body is overstressed by something (like free floating Copper) and is producing cortisol. This wakes me up and as the stress continues so does the cortisol. As I have a shortage of natural cortisol this induces stress and the demand for more cortisol which my body does not have. The moment I insert hydrocortisone into my system there is enough cortisol to meet the demand and the system relaxes. I fall asleep. (HPA-axis)

2. it’s like an insuline reaction. It does feel like one (meaning I cannot fight it. Well, I could if I wanted too but I really don’t want to. I want to go to sleeeeep. It feels like an addict reaction. I even get a happy smile on my face as I give in.) The hydrocortison directs all kinds of stuffs (sugar?) from the bloodstream into my cells, much like insuline does, and I fall asleep because of a lack of energy/stimulant. Untill the reaction has subsided and some energy is hustled back into the bloodstream and my brain. I awake and because I still have a bit of cortisol help from the pills I don’t feel too shabby.

1. is good. 2. is very bad. I am worried. But I cannot think my way out of this at the moment because I’m busy being a genius! Also, I forget to go to the bathroom all the time.

…two long posts in two days…is my hyper showing? To be clear: only my mind is hyper, my body is pretty fatigued.

Oh, and I’m not saying I’m autistic. I know it’s all fashionable to be autistic and we do lack a quirky female tv-detective with autistic treats but no, I am not autistic. (House, Sherlock, Elementary, Hannibal…wouldn’t it be interesting to see how a real autist would solve a murder case? I bet parents of an autistic could paint a good picture of how that would pan out. Not a viewing hit amongst the masses, I’m guessing)

photo credits for the copper heads: Michael Grunow, Sam Rusling, Penny Mathews and Nathan Bauer

Zinc, sunk, sunken.

pills to rectify my Zinc deficiency are releasing Copper into my bloodstream. This is poiseneous and my body reacts to that. I’ve had a couple of bad nights and now i’m back at 30% functionality.
I’ve managed to cook foods, vacuum the living room and do one laundry. I had to cancel all apointments this week including a test drive for a small car for me to combat the isolation I live in in this cabin. I’ve not been able to take a shower for quite some days now. And it is 4 AM at night and again I am awake, burning the cortisol I need to awake in the mroning.

It is a logical reaction to the Zinc. A healthy one too, as Copper excess is not good. So are “they” saying.
I’ll continue to take Zinc but at a much lower dosage.

For now I have to consent to this set back. I’ve had a big cry over it.
Brainfog is here again too, I’m carrying around my books but have not opened them.

Two, no three good things:
1. I’ve found two sites whit forums where people have the same reactions. Curezone.com and risingphoenix or phoenixrising. There has been new information since I last searched for fellow ill people and I am happy to see there are now people listing the same weird symtpoms as I have and interesting discussion about them. One about why showering can be debilitating (low functioning thyroid can’t cope with change of heat) and a few other people who have my sleep pattern (awake with cortisol peak after 5 hours of sleep)
2. I have ordered a genome typing kit. Knowing about some genes might tell me about some enzyme pathways that are not fuctioning properly. I already found zomeone who’s done this and has earily similar symptoms and a falthy gene code to account for it. Look for Gestalt’s info at risingpheonix. It is a COMM (cont?) sequence. In a couple of weeks time I can use my nightly energy peak for some enzyme puzzle research.
3. Having to cancel appointments released me of the need to take a shower for social benefits,..
(There was another third reason but I forgot it)

Ps. O yes this was it: I did some gardeing. Plans are still on their way. I have not lost the battle against ground elder in one particular spot of geranium this year.

my tips for energizing when slugish

sleepy, floppy sea lion

how to energize when a kick in the behind is out of the question. Just a list of tips that work for me. Continue reading