Adequate Hydrocortison Supplementation

The past ten days have been a wonderful, wonderful ride. I’m alive again!

I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg.  It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!

I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)

Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)

I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.

Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.

Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.

I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.

Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
Untitled
I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)

  • I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
  • I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.

I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!

It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.

The tags themselves are good too. No sharp edges and quality engraved.

I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:

  1. feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
  2. call the emergency services and say this: “adrenal crisis!”
  3. say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.

 

The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:

It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.

Insomnia!
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.

The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.

It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.
Untitled

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!

a dream I refuse to participate in

In my dream last night people were suspiciously holding me up on my way out of the supermarket. It was as if my head wasn’t done yet thinking up the street and the storyline and it was stalling me.

I refused to enable this dream.

So I turned towards the produce aisle
and crawled among the apples.

pic by sheridanck
There. Make a storyline out of that, dream master!

in other sleep related news:
1. the doctor’s office forgot to send a fax to the sleep clinic two months ago and my request wasn’t processed. I discovered this last week and fixed it but have been waiting for naught for months now.
All the while having bad sleep.
Tomorrow I’ll ring the clinic, check that they did get the paperwork. Then it’s a three month waiting period and then I can go and have a sleep study.

2. while I do lie awake now again every night I am waking up better rested. After my hour and a half insomnia I take a morsel of Hydrocortisone and this makes my body relax and allows for two hours good sleep. Instead of the broken snooze I used to have.

I have two possible explanations for this: one is that the cortisol dampens an allergic reaction or CNS alarm that otherwise keeps me from sleeping. This could be something lung related or throat related or gut related as these three areas give me pain/trouble at night.
Or this cortisol covers some of the usual awake response in cortisol levels, making me not dip too low.
Either way: I wake up feeling not too bad and I do not have to wait 45 minutes to come from a very very bad place.

I have better stamina during the day, presumably because of this. I also cover my cortisol and progesterone needs during the day better. (I now take 100 mcg of Progesterone every night. It doesn’t help me sleep -no allopregnanolone for me- but it does seem to cover my base line need for the hormone better)

Because of better stamina I try to be more physical active during the day. Having just spend 2 weeks in the city I’ve been walking and walking and showering and cooking. Doing multiple things on single days.
Physical activity is the best way to get hormone levels in flux and in balance so I’m really pleased.

I’ve had the opportunity and stamina to meet various knitter friends during these weeks and we had lovely cups of tea and chats and wool and spindle fondling. This makes me wildly happy.
Wild happiness is the best companion for a chronic illness.

PS
taking 50 mcg of vit D3 also helps. It really does. Never ever ever do I want to go too low on vit D again.

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.