Adrenal Issues and treatment problems

[caledonia]

About three weeks off the pregnenolone. Instead of the constant anxiety every minute of the first two weeks, this week the pattern has improved. Now there are two bouts of anxiety, one around noon and one either later in the day or in the middle of the night. Each bout lasting a couple hours. In between I feel calmer but weird. Hard to describe. I think ungrounded would be a good word. I've found that massaging my feet or having someone just hold my feet is helpful.

Sometimes I get some hours of relief late in the evening where I feel ok. In general, it's hard to watch tv. Noise is especially overstimulating and irritating. I've found some really soft soothing chords on the guitar that I play every day, which helps put my head back together. Again, hard to describe.

My energy is still much lower than usual. The usual things I was able to do now cause PEM, so I have to be more careful with that.

In general, this whole thing has been a huge mental and emotional rollercoaster. It's like every single problem in my life has come back to haunt me and all at once. I've been praying a whole bunch and find it very helpful to calm me down.

The Seriphos was making me too groggy, so I tried Holy Basil for awhile. It was helpful, but too many pills. Now I'm back to Seriphos, but only taking 1/4. That helps but doesn't make me groggy. Still doing the modulating ACE at noon. I've been on that I think 5-6 weeks. It's supposed to take 6-8 weeks to get the high cortisol down to normal and I can feel that I'm getting closer to that.

I forgot to mention, this whole thing has kicked up my nighttime acid reflux to a whole new level and is really interrupting my sleep. Previously I was able to control it by sleeping on a 7.5" wedge pillow. Now I have my pillow jacked up to 12-13" with a big stair-step stack of books duct taped together underneath ( a temporary arrangement until my new tall wedge pillow comes). I also need to go back on a supplement I used previously to heal the acid reflux (GI Benefits).

 

[heapsreal]

Previously i used a pregnenolone transdermal cream which was 50mg/ml. The last 5 days i have been using just a small dab of cream on my skin, so maybe 5 mg of pregnenolone at the most. Once the cream 'kicks' in im finding i have more energy and mental clarity, but i am being cautious as i had problems with higher doses and probably a build up of preg occured in my system so may take a day off here and there, as i had issues wiith preg before with feeling too uptight, angry with headaches etc from it. I think there is something to pregnenolone but its fine tuning the dose, i also think it helps with inflammation as my joints dont feel as 'clicky' especially my neck which did get tight and stretching it would cause a big click. time will tell i guess.

cheers!!!

 

[caledonia]

Four weeks off pregnenolone. Still have one to two bouts of anxiety every day, but they are getting milder. This week I've also been crying a fair amount during bouts. My appetite seems to have returned. However, I'm having problems keeping my blood sugar up, which the doc did mention to watch out for.

I'm trying out my new 12" wedge pillow (it outgassed pretty fast), but even that needs some books underneath to make it higher. But in general it seems to be an improvement over the wiggly tower of books I had before, so I'm glad I went ahead and got it.

I'm also doing extra salt water in between my usual 3 times a day sea salt/vitamin C/magnesium water. The doc also mention to keep my salt intake up. This seems helpful.

Strength/energy seems to be at least somewhat returning. I did quick trip to the grocery store today for food (had someone else drive me), my second little outing in a month. My legs were getting shaky halfway through, so I'm expecting some PEM tomorrow.

 

[heapsreal]

caledonia, no thoughts on try a much lower dose, maybe more intermittenty??? Im finding some help using this stuff.

cheers!!!

 

[caledonia]

My main thoughts right now are surviving each hour of the day, and getting back to some kind of baseline.

But the doc did mention another type of pregnenolone which is drops under the tongue. The idea is that if it doesn't go through the stomach it will go through the right pathways. Also it should be easier to titrate it into smaller doses. I'm doing well with the liquid drop version of ACE, so maybe that is the way to go.

Anyway, I'll have to cross that bridge when I come to it. It looks like it's going to be awhile yet.

 

[heapsreal]

My main thoughts right now are surviving each hour of the day, and getting back to some kind of baseline.

But the doc did mention another type of pregnenolone which is drops under the tongue. The idea is that if it doesn't go through the stomach it will go through the right pathways. Also it should be easier to titrate it into smaller doses. I'm doing well with the liquid drop version of ACE, so maybe that is the way to go.

Anyway, I'll have to cross that bridge when I come to it. It looks like it's going to be awhile yet.

Did u use tablets ? i used a transdermal cream, which is suppose to be slowly absorbed and not a big hit to the system like a tablet.

cheers!!!

 

[caledonia]

Yes, pills (powder in gel capsule).

 

[caledonia]

Five weeks off pregnenolone. The anxiety seems to be morphing into restlessness/agitation. I feel compelled to pace around nervously, sometimes waving my arms. I'm not sure what to do with myself. I've done stuff like take a short walk, wash dishes, wash windows - simple stuff that doesn't take much concentration.

My period started a week to 10 days early, I'm guessing due to the hormones affected. My appetite seems to be back. My energy is a bit better.

In addition to the 12" wedge pillow I have 2 more books under the feet of the bed. This is as high as i can make it and be somewhat comfortable. I started GI Benefits about a week ago. That is starting to help the nighttime reflux and thus my sleep. It's not perfect, but a bit better.

Today I'm testing out taking the Seriphos on a schedule, like every three hours, instead of waiting until I feel nervous to take it. Hopefully this will keep things more under control.

 

[alice1]

caledonia i agree with trying a schedule on the seriphos..don't wait until you're anxious it becomes such a vicious cycle.good luck!
i've lowered all my hormones and will take the dhea several times a week only.
i've added natural adrenal support with the cortef and my energy is still the best it's been in quite awhile.
speaking with the doc tomorrow as the allergies are still bad especially today...rain.maybe it needs more time or an adjustment with the cortef..saw my onc today and thought he was going to give me a hard time about it but he agreed i needed it.a nice surprise for a change..not defending what i have to do.
hope you're all feeling a bit better..

 

[Cindi]

Hi all

Do you know if muscle weakness is symptom of low or high cortisol? Thanks.

 

[heapsreal]

Hi all

Do you know if muscle weakness is symptom of low or high cortisol? Thanks.

Muscle weakness could be a sign of both high and low cortisol, its about getting the right balance of cortisol with other hormones, plus muscleweakness is a vague symptom meaning , many causes.

I have been back on pregeneolone cream about 10mg for 5 weeks(dont keep a good diary) and its been helping with energy, sometimes i get a day where i feel overstimulated so i cut back for a day and then resume my normal dosing. I have also found its helping concentration, stamina, mood and just lifted my energy up to a level where life is enjoyable and im not dragging myself around.
I have also added a low dose progesterone cream of between 5-10mg at night which has improved my sleep quality alot, i still need meds to get to sleep but sleeping right throught the night with a solid 8 hours plus of sleep. http://vimeo.com/3818805 Progesterone can also help with adrenal fatigue in that it can back fill into cortisol and into sex hormones like testosterone and help reduce estrogen in estrogen dominance. It improves GABA recptors snsitivity which helps improve sleep and anxiety issues.

The last 2 days i have started using a combo cream of prenenolone/dhea 10mg each, it seems to have good energy effects and a more of a balancing effect but will see how it go's over the next week or so, hopefully it controls the agitation episodes i get maybe once a week and wont need to taper down for a day here and there.
At the moment there is no testing for pregnenolone but have heard they have one now,many used progesterone say if its low then pregnenolone probably low too and pregnenolone steal going on. Progesterone ranges <3 my results <1. dhea (2.2-25.5)im coming in at 2.1, without supps my cortisol morn blood is 280(220-660), E2 is well controlled with arimidex at 111(40-250). I do have other results but when i was on pregnenolone previously at higher doses and dhea etc

My doses are quite low and safe and i will be juggling this around mainly by how i feel and when i think have have it right i will retest again and see where im at. i think people with cfs/me need to start low and slow and there seems to be a few people who have had agitation problems with it, when this happens, take a few days break and restart at much lower dose, maybe every second day etc, some wont seem to have any problems with it. I have read the worse your adrenal fatigue the worse your reactions to hormone treatments.

cheers!!

 

[rydra_wong]

i hear ya spitfire, this is where im at, my adrenal hormones are buggered but cant seem to tolerate hormonal supplements, im just trying small doses like 5-10mg once every few days of pregnenolone and added siberian ginseng and will add a high dose b5 soon when i order it. AFter reading dr lam's website on adrenal fatigue it seems the worse your adrenals the harder it is to tolerate treatment with hormones, its a rock and a hard place and im like u and financially need to keep working. I think my adrenals are my biggest problem in reguards to my crappy sleep, if i could sleep well every night i reckon i could get back to 100% almost. good luck and keep us posted on anything new with adrenals, its up my alley at the moment.

This may sound trite (surely you tried it?) but have you tried melatonin for sleep? It would be made if your methyl cycle was functioning correctly. If not, just take some.

 

[rydra_wong]

Caledonia
if pregnenolone bothers you, have you tried DHEA? Because your body may be deciding to make cortisol from the pregnenolone instead of DHEA. Well, anyway, DHEA does it for me. I do take pregnenolone (to make progesterone) but the DHEAregnenolone ratio that works for me is 3:1.
NEVERMIND - I can't keep up with all these entries. If I scroll back I see you already tried this

 

[rydra_wong]

My adrenals crashed recently. I have been treating my thyroid with natural hormone for 6 months but knew I needed HC as saliva test showed low cortisol and that was 3 years ago. But I do not want to take it as I have Lyme Disease and it is bad to have the immune system suppressed when you have a bacterial infection like Lyme.

Brenda have you tried olive leaf extract for lyme? I would try it for any pathogen. It kills all kinds of stuff. I take a gram if it a day and I can feel the difference (feels like less inflammation in my blood vessels). I take it because I don't make enough stomach acid to kill pathogens. If I don't get around to it and come down with something it works great to kill it also.

 

[heapsreal]

This may sound trite (surely you tried it?) but have you tried melatonin for sleep? It would be made if your methyl cycle was functioning correctly. If not, just take some.

Yes i have tried melatonin which worked when i first had cfs 10 years ago but now it doesnt do much at all but use it mainly because its a good antioxidant and it has helped me get out of some whacky sleep cycles but still need meds. I actually find tryptophan better then melatonin???

Your right with me and pregnenolone, it doesnt do much to my dhea levels but did increase total and free testosterone levels as well as cortisol and did help with energy but i ended up to agitated from it and have since started again but with a much lower dose. I have used dhea on its own and got alot of conversion to E2(being male this isnt good) and then used a combo dhea/preg cream but ti made me way agitated and angry etc and couldnt sleep at all even with meds. Even when supplementing with pregenolone i still tested very low for progesterone, so to me this indicates pregnenolone steal going on.

I will now update from my post yesterday, im now on progesterone at night still between 5-10mg and in the morning for the last 3 mornings using a combo dhea/preg cream 10mg each. This is giving good calm energy but last night sleep was abit off. i had trouble turning the off button, that was after 2 zopiclone and an 1hr1/2 later took a valium and finally went to sleep, this is abit more then i would normally take for sleep. I didnt feel overstimulated or agitated, just that the off button wouldnt go off for sleep. When i did go to sleep i didi sleep ok. So i will have to keep an eye on that. When i see my doc next im going to get a script for just dhea cream on its own and maybe adjust pregnenolone lower and try and bring dhea higher, may even drop pregnenolone if over agitated. I have a med called arimidex which stops dhea and/or testosterone aromatising to estrogen, so as i push my dhea levels higher, hopefully E2(estrogen) wont be a problem.

My aim is to get my low dhea levels up to to top 1/3 of the range and hopefully this improves my free testosterone which is low normal. DHEA is suppose to have anti-inflammatory effects against certain inflammatory cytokines, so lowering this inflammation im hoping to improve sleep as well as all the other good things high dhea levels do. If/when sleep improves then i will look into stopping progesterone. Progesterone can do alot that pregnenolone so may not need both but when i get tests done in early december i will see what all this is doing. I keep mentioning that all this is a work in progress as i have been slowly working on viral side which is now under control, now im sorting the sleep and fine tuning my energy and recovery.

cheers!!!

 

[heapsreal]

Hi, Its 9pm here now and i had a productive day with a light weights session and mowed the lawn and had good energy all day. But i think even the low dose dhea/pregnenolone combo is too energizing for me, its hard to explain, i dont feel agitated but right now i feel like i will never go to sleep for hours yet and if this keeps up for too many days i just end up sleep deprived and back to square one. So my plan tomorrow is a day free from dhea/preg and then after that just stick with low dose pregnenolone in the mornings. I have to wait until i see my dr next but will definately get a script for dhea on its own and try it without pregnenolone. I think there might be too much overlap between the two for me. Its a pity in australia that all these types of hormones(dhea, pregnenolone, melatonin) require a prescription or else i could just go and buy some at the health food shop, that would be nice instead we have to pay for overpriced supplements/hormones. While on this combo im not really noticing the sleep benefits of progesterone, but maybe its the progesterone thats stopping me from feeling agitated maybe???

cheers!!!

 

[heapsreal]

I had my one day free of dhea/preg and everything settled, i have now been back on the combo of dhea/preg but just 5mg of each, so far i feel good on this, not over stimulated and able to sleep like i normally do for me, which isnt great but better then when on higher doses of dhea/preg. I feel like i have good stamina throughout the day and not drop dead tired at the end of the day. Still having sleep onset issues but meds help with that and progesterone still helping with sleep quality as once im asleep theres few awakenings and can easily go back to sleep.

cheers!!!

 

[Sallysblooms]

That is great, glad you are doing better on a little less.

 

[Cindi]

Hi
Morning serum cortisol does not give correct results.Serum cortisol test gives free plus bonded cortisol amount. It was observed that cortisol binding globulins are higher for CFS patients (Sorry too exhausted to find out any references for that) which means you may have cortisol level within current normal limits but your free cortisol may be low.One needs to have Adrenal stress index test to find out more correct cortisol levels.Best wishes

 

[heapsreal]

Im not sure about free cortisol, and bonded cortisol. But if getting a morning blood test its best to have it in the middle of the normal range, lower end of the normal range is still too low for what healthy people have. The 4 times a day saliva test gives a better indication of cortisol levels as its suppose to be high in the morning and tapers off at night, high night time cortisol can be the cause of insomnia etc. DHEA opposes some of the negative effects of cortisol, so if dhea tests low, then cortisol is causing some damage. dhea can be blood or saliva test but i think the adrenal stress index is a combined test where dhea is tested first thing in morning with cortisol and then a further 3 cortisol tests throughout the day.

Thats interesting to know about free and bonded cortisol, thanksi will look into that abit more.

cheers!!!