Adrenal Update.. haven't been around

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Nov 28, 2008.

  1. Wolverine

    Wolverine Member

    Hi all, I haven't been on here much lately as i've been trying to deal with the Adrenal stuff - it's really changed the way my body functions and im having a bad time dealing with it still - life just isn't the same for the moment. Brain fog is increased x 100! Literally can barely read, watch TV or anything most of the day, only at night. Small increments of reading and typing in the day for about 10 mins here and there.

    Still having a hard time with the cortisone replacement. Whenever it wears off (and it wears off quick) i get horrible symptoms all coming back again. I was crashing in ER about once a week before getting on it, now 2 months on it, and im still exhausted, but more stable and not going to ER, it's definitely keeping me out of hospital at least.

    Unfortunately i'm still at 40mg, so i've probably been at this dose around 4-5 weeks now. This week's been bad and i've been up to almost 50mg some days.

    Wayne: I definitely don't plan on staying at this dose, but at the moment i absolutley can't go any lower. My body processes the cortisone SO fast it's crazy. Maybe it's all the underlying issues going on in my body being the reason it uses it up so fast, and also the reason my adrenals crashed in the first place - couldnt deal with the underlying issues (severely imparied detox hence constant toxins, probable low grade systemic infections, etc).

    I've consulted with a new Nutritionist who specialises in CFS, who got over it himself, and seems very good. Also have appointments with a new integrative GP next month who is highly regarded for CFS and other things. Also will have a consult with a very knowledgeable compounding pharmacist who has alot of clues in this area - cfs/adrenal probs.

    And yes Karen i'm finally having another gut microbial ecology test done! Im having a different one. This nutritionist I consulted with says that this test by company Metametrix is more sensitive, accurate and in depth than the CDSA from Geneva. Take a look:

    Getting to these deep roots of the probs is the only way i'll be able to recover some adrenal function or at least be able to lower the dose etc. I hate that im regularly on 40mg even 45 etc, it's frustrating that it doesn't last. I've no idea how you do 15mg per day Wayne! I have to have that before 10am! Then its another 10mg by midday at least. Even if i have 15 in the morning, within 3 hours, im getting weak, shaky and heavy in the body/legs.

    I just got some SR cortisol compounded, and am starting on it, hoping to possibly lower the dose using this if possible. I want to get off it some day if my body gets well enough, I don't know if that will happen now after going so high, but one can hope.

    Also been having terrible orthostatic tachycardia / NMH lately even on these doses (standing pulse sometimes goes up to 160 and most often to 130-145), so my endo is sending me a script for Florinef. This may also help lower the HC dose, given that i can tolerate it. I got headaches when using it years ago,

    So yeah it's still been really hard going, am still in bed most of every day, with just small windows of being able to get up and do a bit, not much though. I long for my own adrenal function back! Oh well we do what we have to hey.

    [This Message was Edited on 12/08/2008]
  2. Catseye

    Catseye Member

    The test sounds good, I hope the person interpreting it is really good at what they do. That's the whole key to this - getting someone who can interpret tests correctly. It's not like Farr is going after CFS or fibro or lyme or any particular thing, really, it's mostly like he's going after a broken body and what that body needs to get fixed. The gut dysbiosis thing is prevalent and doctors don't understand the importance of it at all.

    About the heart issues, have you done anything about low blood volume? That's easy enough, just take plenty of minerals - didn't you get the Krebs Cycle Chelates? And the coq10? Those will help but I also needed plenty of electrolyte solution, too. And I took extra magnesium in the form of magensium malate (with malic acid) because malic acid is very important to the energy cycle and other things. The Electrolyte Stamina is a good one, or get any one from the health food store that doesn't have too much sugar or nutrasweet. For instance, you don't want to use Gatorade - sugar stresses the adrenals. I was drinking about 3 electrolyte packets in water throughout the day, and I had that and salt water next to the bed at night. The florinef should help, too - it's one of the adrenal hormones that regulates fluid balance. You'd be surprised what a few glasses of electrolytes can do for you during the day

    I feel so bad for you, I had days like that numbering in the hundreds. At least you have advice coming your way, I was suffering through it alone and had to figure it all out - I couldn't read, either. It made me sicker.

    You obviously have strong as hell adrenals and once you get on the right diet and supps after the tests, I think you'll find they'll come back pretty quickly. At least, I hope so! Mine did!

    take care

  3. slowdreamer

    slowdreamer New Member

    Dear Wolverine,
    Sorry to hear of your ongoing battle..I have been thinking of you and I am pleased you are visiting a Comp Medicine Doc..Is it Richard Schloeffel by any chance..I thought he was very good in 1995..

    I know your body is very sensitive and western medicine although sometimes necessary can be so harsh.
    Best wishes to you
  4. Wolverine

    Wolverine Member

    Yes indeed I did notice miss Catseye ;)

    Yeah the nutritionist i spoke with seems pretty knowledgeable, you can check out his website and CFS info here:

    Blake Graham:

    He mentions many possible causes and treamtents including dysbiosis etc. The GI profile test im having is very specific too - its really well laid out, i had a look at the sample report he sent me and even I can easily decipher it. It shows levels of all / any pathogens present, and they even test every one of them against drug AND natural remedies for resistance or succeptibility, making it easy to tell which treatment will work etc. He is also able to ask the staff practitioners from the labs themselves for any other reccommendations from the tests.

    Yeah, well I try to address the low blood volume thing often, i use celtic sea salt in water daily, about 1/2 tsp in 500ml water twice a day. I want some potassium powder to add to it aswell. I dont have any electrolyte formulas, as i havent found a good one in health shops as u say yet. Only ones from the chemist which contain either artificial sweetner or sugar. I used to drink gatorade all the time whenever i went out (before the current big crash). I think they're likely harder to find here in Aus, you guys seem to have quite a few good ones available.

    Some days are better than others with the orthostatic intolerance. Today for instance im a little better and my heart rate isnt shooting up at all when i stand and walk. Its weirdly random. It often depends on how well the HC has kicked in or not / dosing / timing etc. However i'll be interested to see how the florinef goes, given it doesnt cause huge headaches etc. I wonder if i start using that though if it will further suppress the HPA making it even harder to eventually come off the cortisones.. all more of a concern. However living like I do now isn't good enough in the least.

    I take coQ10 daily, also the krebs cycle chelates.. but i really can't tell a difference from them. Not sure why, maybe its cause i just feel so bad at the moment I can't tell what helps or not. Im sure they do though. I definitely have less ectopic beats than before, but those stopped alot with cortisol treatment too.

    Strong adrenals? I duno about that! Don't think i'd be on cortisol if that were the case :p Although it's more hypo-pituitary related in my case, so im sure the adrenals themselves are OK physically. Let's hope so.. nothing so far has been 'quick' for me.

    Slow: Thanks, appreciate it. It's not Dr Schloeffel i'm going to see, though i've heard of him. I just looked up some info, would be good to see him actually but i just read an article saying his books are closed as he has 2500 patients now. He focuses on trying to get info out to train other GP's now so it seems.

    Im going to see Dr Fred Spittel, who is apparently very experienced too, on reccommendation from someone else here in Aus:

    I'm also seeing Blake Graham as mentioned above, and will be consulting with a pharmacist who is very knowledgeable in this area. Don't ask me where i'm getting the money for all this, I wish i knew! lol.

  5. Wolverine

    Wolverine Member

  6. hermitlady

    hermitlady Member


    Glad to hear you're still plugging away and feeling a bit better. I just posted about my latest diag, and it's not just my adrenals, ugh! Metabolic/Mitochondrial Disorder...very complicated and confusing. I have a lot to learn.

    Keep us posted w how you're doing, I think about you often and hope you're feeling better.

    xxxooo Hermit
  7. Waynesrhythm

    Waynesrhythm Member

    Hi Chris,

    Just a quick note tonight to say hi. I'll try to read your post a little more carefully sometime soon and get back to you shortly. I'm coming up a little short on the thinking thing at the moment. :)

  8. Wolverine

    Wolverine Member

    Oh no good to hear Hermit! I'll go and read your latest post soon.

    No worries Wayne.. i know all too well about that! My brain fog is INCREADIBLE latley! I cannot think almost all day long, only for short windows at night. It seems to correlate with the cortisone. My brain function is sooo fuzzy since starting HC. I dont know if this is because my body doesnt metabolize it well, or if it's flaring up systemic yeast.. either way its really hard.

    Talk soon, ~C.
  9. Wolverine

    Wolverine Member