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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PMS from hell gone.

The past few months I got really bad PMS. PMS from hell.
PMDD. Weeks that I could not live alone because it was not safe. Because I was desperate and suicidal.

I knew it was all brain chemistry and not a chronic depression. As soon as my period started the cloud lifted and I was my happy normal self. But only for three days, the last two months. Three days after my period the cloud would descend again.

But knowing something has a chemical cause and dealing with the feelings/thoughts it generates are two different things. In the end it got too hard to manage the feelings and thoughts.

The weird thing was that my usual PMS can be managed by taking micronized Progesteron and/or Progesteron cream. I’m versed in that. I know how to work it.
I’ve had one bout of suicidal depression that was caused by a vit D shortage.
But neither one of those supplements helped this time. I was stumped.

Of course I did research and found the term PMDD, meaning PMS-from-hell. Including the suicidal tendencies. This rang true.
I looked up other people who have this and what works for them. One thing is that anti-depressants work instantly. Instead of the few weeks it takes to affect a chronic depression. With PMDD anti-depressants work instantly and you only need to take them a few days in the month.

The other suggestions I got were supplementing GABA, Lithium, St John’s worth, black bear spray, bh4 and 5htp.

I went to the doctor to get anti-depressants. This is tricky because I have a homozygous mutation for MAO A which means I already have an inborn MAO A inhibitor. Anything extra that blocks my noradrenaline receptors will have me bouncing off the walls for hours. Because I already have that tendency.

The doctor was very good!
He suggested that what I’ve been lacking these past few months is Dopamine:
neurotransmitter werkings

You all read Dutch right? The title is Function depending on Neurotransmitter.

Dopamine = attention; motivation; enjoyment; rewards.

Noradrenaline = alertness & energy

Serotonine = obessions & compulsion.

The three words in the middle read: interest; mood and fear.

The doctor must be right. There must be some sort of system where prolonged stress interacts with sex hormones (in their neuro transmitter role!) and depletes Dopamine in my head. An interesting thing to go look at.

Normally I have a healthy mix of the three. Although my Noradrenaline sticks around for too long because it’s destroyer MAO A isn’t very good. But otherwise I have a natural high Dopamine level.

He then talked me through the various anti-depressants that exist and on what neurotransmitter they have effect:
antidepressants overview

We chose an anti-depressant that affects Dopamine level, the best there is: Bupropion (this also is the only one that won’t affect libido)
It also inhibits noradrenaline but we agreed I should try it, in a low dose, to see how bouncy it makes me.

Dr. also suggested I use my sensitivity to assert if a pill was going to help me. Or even just carry it on my person instead of ingesting it.
Can you believe such a suggestion coming from a certified GP? That’s tailormade medicine right there. Fabulous!
I’d never thought of it but it is indeed something that works for me. I can sense whether something (a food) is good for me. Why not a pill?

He also mentioned the three things that improve mood:

  1. Zinc
  2. Krill oil
  3. Taurine

So that’s what I started taking. Taurine also soothes the liver which is a strained organ in my body. But it also contains sulphur which my body cannot handle very well (MTHFR/MTRR mutation)
The Zinc did it.

Whenever the dark cloud reared its head I just took Zinc and it went away again. It was amazing.
I hate when this happens, when a singular thing influences my mind so much and when it repeatedly proves it does and when I could have avoided suffering just by taking it earlier. And I hate the tiredness afterwards, when my body sighs in relief and needs time to recuperate. I hate when I wasn’t smart enough, resourceful enough, to stop this earlier.
I know I should be proud that I solved it and that I don’t feel so awful anymore. But the frustration is bigger at the moment.

So: no mental PMS/PMDD symptoms this month. I did not need to take any anti-depressant (but boy, am I glad I have them in my pantry. A good back-up whose presence eases the mind).

I’ve now had my period and we’re in day 4 of my new cycle.
Unhappiness is here again. But it’s very mild. I don’t think it’s related to the things above at all. The Zinc doesn’t attack it unfortunately.
It IS chemical though. I’m lacking something. Or have eaten something that poisons my brain. Could be the shrimp kroepoek? Or is the the stress of prolonged staying the city? The lack of chicken soup?

Either way I’m back on eating a clean diet again. No exceptions. With a brain chemistry as sensitive as mine, that’s the best thing to do.
I’m drinking a lot of (salted) water and taking enough hydrocortisone to keep my body out of stress.

And I’m re-affirming my body all the time that there is no reason to stress. We are safe. We are good. Relax. We are fluid and we are walking in the sunshine. Life is good. No worries.

(this is a solid approach to ease my Autonomic Nervous System which is at the core of my illness. More about that later.)

PS I stopped Valerian and also Progesteron pills the last week of the last cycle. Both might be energizing my system too much.

I took a Prog pill the other evening and laid awake again. Without it I sleep through the night. I do need the Prog cream for the current unhappiness though. This has always worked neurological for me so we’re back again at neurotransmitters and brain chemistry.

Neurotransmitters: progesteron on the brain

Just for funsies I was wondering about the relation between noradrenaline (NA) and progesteron in the brain. Any neurotransmitter interference there?

Boy! Did I hit the jackpot!
It’s only from one source and I haven’t had time to check out the source itself or other sources or research but if this is true it connects a whole lot of dots.

the source: sexualhealthmedicine.com

PROGESTERON AND SEROTONINE
Progesteron and oestrogens claim serotonine receptors in the brain. Oestrogens promote the growth of these receptors, progesteron decreases it. This can account for some of the depressive feelings during PMS (post menstrual syndrome, occurring at least one week before the period, when oestrogens drop and leaves behind a field of serotonine receptors who’ve got nothing to feed upon).

PROGESTERONE AND MAO
Progesterone increases MAO activity, Estrogens decrease its functionality (!!)
Meaning Progesterone promotes excitatory neurotransmitters getting catabolized, broken down, whisked away.

People with progesterone deficiency have their brain bombarded longer by excitatory neurotransmitters? (it fits the symptoms of Estrogen excess)
How about people with progesterone deficiency AND a faulty MAO A enzyme? oooh boy….

Estrogens numbs the MAO enzyme, allowing the excitatory neurotransmitters to keep bouncing around in your head. People with natural high levels of these neurotransmitters are active, excited and happy (depending on their individual signature of the mix).
People who are low on these neurotransmitters (ADD people perhaps) get depressed when their Estrogen levels drop and Progesterone keeps egging on the break down of the few neurotransmitters they have. They would have very depressive PMS.

But it might be more complex than this. Balancing hormones teaches us that hormones are not like scales: add a little here and it will decrease over there. No, it is more complex.
Having higher levels of a transmitter makes its receptors more numb for it and makes the receptor for its antagonist more hungry. For example, taking more Progesterone enhances the level of Estrogen receptors. Making for more tender breasts during PMS, even though you are supplementing with higher levels of Progesterone than you ever had naturally.

SHORT QUESTION ABOUT HAPPINESS, ENDORPHINES
Might a happy feeling come from Endorphines and not from the mix of high dopamine and progesterone supplementation?
Progesterone correlates to feeling at ease, calm (hello PNS). Not happiness per sé.

PROGESTERONE IN THE BRAIN: SLEEP
Another article from the same source kept me awake last night:

  • Estrogenen increase the serotonergic, noradrenergic and opioidergic activity in the brain. (grrrrr!)
  • Progesterone increases MAO slightly. Progesterone’s most profound neuronal effect, however, results from its direct effect on the neuronal membrane. Progesterone has an inhibitory effect on neuronal excitation, depressing neuronal firing.
  • one of Progesterone’s metabolites is called Allopregnanolone. This is een neuroactive steroid. Allopregnanolone hyperpolarizes neurons by potentiating GABA-mediated synaptic inhibition. It acts at a neurosteroid-specific site on the GABAA receptor to facilitate chloride channel opening and prolong the inhibitory action of GABA on neurons. Allopregnanolone is one of the strongest ligands of GABAA receptors in the CNS, with a potency similar to that of the most potent benzodiazepines (Valium etc) and approximately a thousand times higher than pentobarbitals. (sleeping pills)
  • brain activity of progesterone and allopregnanolone is not dependent solely on ovarian and adrenal production. It is made in the brain itself.

TRANSLATION:

  1. Progesterone depresses neuronal firing.
  2. Its metabolite Allopregnanolone eggs on GABA activity (GABA is needed for REMsleep!)
  3. Allopregnanolone does the same as benzo’s do, the drug so many insomniacs turn to
  4. Allopregnanolone does what sleeping pills do a thousand times better
  5. Progesterone is made in the brain (what if my deficiency is expressed there too? Is it synthesized in the brain from cholesterol? How does this work?)

I
AM
GOING
TO
SCREAM
NOW

Just for a little bit.
It’s all those excited neurotransmitters you see. And not enough progesterone to depress neuronal firing.

I want more (to know about) Allopregnanolone.

 

PS a strong symptom of Progesterone overdose is sleepiness. Allopregnanolone would account for this, as it’s as potent as the strongest sleeping aids.

taking a Progesterone pill (100mg) is the one thing that gets me through the nigh and only during PMS time. Earlier in the cycle and I feel very very groggy the next morning.

PS2 on RisingPhoenix someone says that it’s oral Progesterone that gets converted to this Alloprgnanolone. Not so much the transdermal cream.

Having a day off from putting out the garbage.

I took the day off yesterday: I didn’t take my pills.

Did take the hydrocortison ofcourse. And vit. D. And lots of bio-identical progesteron. (I’ll be having my period any day now and my breasts were killing me. Also quite a bit of PMS symptoms so progesteron I took a lot of.  NPC creme on the breasts and Utrogestan pills orally. It helps.)

But I did not take Methyl B12 and no Folinic Acid nor Zinc.

Amazingly I felt better and better during the day and by the end of the day I caught myself singing while doing some house work. Yes, insert googly eyes here too!

At night I was so well that I made the conscious decision not to be bothered by some heavy trucks that were parked nearby, rumbling stationary throughout the night. I just turned 180 degrees in my bed so my feet were facing the noise, let out a sigh and thought of nice things:

I slept through the night!  As customary I did wake up after five hours of deep sleep but contrary to other nights I just turned on my other side and went back to sleep. No two hours of waking.

My conclusions from this day:

  1. I took one day off from detoxifying.
  2. I am detoxing on a physiological pace: one day at a time. Just like the hormones I take: no more than what the body can process in one day.
  3. underneath the detoxing I am quite healthy! I’m so glad to note how well I felt during the day. That is my baseline, my point of reference. The detox-symptoms have clouded it for months now but I feel really assured to have it resurface so soon.
  4. this MTR/MTRR detoxification uses a lot of progesteron. In the whole Methylation cycle progesteron is needed. Other people with these mutations should know this, especially women.

 

in other news: I have elaborated my theories on human cell biology.

I think each cell has the habit of storing garbage in the outer tips of its cell. In this fantastic little video of a white bloodcell chasing a bacterium amongst red blood cells you see how it drags along a black kind of tail behind itself. I believe this to be the cellular rubbish bin, stored in a place where it interferes the least.

white-cell-garbage-bag

link to video of white blood cell chasing and engulfing a bacteria. Yay body defense system!

When the cell divides the two daughter cells each get one tip of rubbish. This garbage gets handed down to the next generation with each cell division. It progresses down the line and builds up a little with each cell life. Eventually it’s the outer cells that inherit the most rubbish from previous generations. The cells between them inherit less rubbish from their parents.

cell-divide-garbage

tidbits: it takes cells 20 minutes to divide. Unless it’s a special cell, then it can take hours. Red blood cells live up to 140 days. (I am quoting from memory…)

In ‘normal humans’ each cell clears out a lot of its garbage via the Methylation Cycle.

In ‘freaky interesting humans’ with mutations in the Methylation Cycle this day-to-day rubbish isn’t getting cleared away and remains in the cells. Stored in the tips. Eventually it gets passed down to next generations as shown by my ‘interesting’ sketch above.

In the end the cell cannot divide anymore, it dies and spills all its contents in the extracellular space where other cells try and clean it up. Store it in rubbish bags of their own.

In my 30+ years me and my cells have gathered a lot of garbage. All the broccoli I ate that I couldn’t process. Any alcohol (including the ones in beauty products), any exhaust fumes, anestetic. Garlic. Cell debris from x-rays.

My cells stored so much garbage, I believe, that their overall functionality eventually got hindered. Putting my body under stress, causing system wide symptoms of illness. In my case: hormonal imbalance, stress illnesses, adrenal misfunction, malnutrition, sugar addiction etc. And lets not forget behaviour and sensitivities that remind my doctor of people with an Autistic Spectrum Disorder.

It could as easy have been a late onset auto-immune disease or diabetes, I feel. Or a ‘vague’ illness we mainly associate with women. (such as ME, CFS, Irritated Bowel Syndrome, etc).

Well. Today leisure is over, it’s back to cleaning up garbage for me.

I wonder how long it takes, how long it will be before the rubbish is cleared and I can get my mind back… Yesterday I even thought about art and design and working! But as long as there’s rubbish I cannot. I do have to amend that legal/technical document this week however, to prevent the shit-fermenting-plant they are planning to build in the field next over. That will be quite enough to keep my rubbish mind busy.
And there’s my period, today or tomorrow. I am prepared: there is food in the house, warm blankets and lots of earplugs. No visitors. I will have a blissfull two days to myself. Just drinking tea, holding my tummy and writing that paper.