To All Those on Cortisol/Cortef/Hydrocortisone

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Oct 10, 2008.

  1. Wolverine

    Wolverine Member

    Hey all. As you may have read I've been having a hard time and just been diagnosed earlier this week with Adrenal Insufficiency. (no rise in cortisol on insulin tolerance test).

    Got some questions for all of you who are or have been on it in the past.

    1. What type of cort do you take?

    2. What time/s do you take it & how long does each dose

    3. Did you feel strange at all when you first started?

    4. Did it give you any depression or irritability?

    5. Did it upset your stomach or liver etc? (pain/acid/

    6. If you had either of the above 2 probs, did they go away

    7. Do you carry Solu-Cortef (injection) and have you ever
    had to use it? If so, when?

    8. What situations do you have to take extra for, and how

    9. Do we need adrenalin as well as cortisol in a big stress
    event? (epipen). Im unsure if the adrenals still make
    adrenalin anymore once we are cort dependant.

    10.Last of all.. have any of you been able to get off it? If
    so, how did you do it? With the way my body gets as SOON
    as it starts wearing off, i can't see how i'd ever be
    able to.

    Thanks all, really appreciate it as i'm having an awful time here starting off on this.

    Im so far on Hydrocortisone approx 16mg a day (havent worked out my dose yet, may have to go to 20 at least). Im having awful side effects of liver pain, irritability, depression etc.. i just completely don't feel like myself, and it's horrible, I want me back.
  2. Juloo

    Juloo Member

    My prescription is low-dose as well:


    I take one when I get up, and one late morning. If I am sick or otherwise stressed, I can add another one to the dose.

    I have not had any problems with my stomach or with irritability. Nor did I with licorice which I was taking before this.

    I do not have Solu-Cortef or an epipen.

    Generally I only take extra if I am physically sick. I am fortunate that I do not have a lot of other types of stress right now, although, if I did, I would not hesitate to supplement the dose.

    I have gone off it in the past -- I have been treating many areas for CFS and FM, and suspect (hope!) I will be able to get off it in the future, but I have been on it for a few years now. Granted, I do not have the acute problems that you have, so I do not have to take very much. Also, though, I am on thyroid med (T3), and it is my understanding that if there are adrenal issues, it is imperative that those be treated as well, or treating thyroid-only is just setting the patient up for a really big problem.
  3. romalaw

    romalaw Member

    I have been on 5 mg of prednisilone for about 5 years. It has enabled me to function at an almost normal level. Usually, I am very sensitive to drugs but I have never had any problems with it, seems like my body loved it from the beginning. I have also been on 60 mg of armour for 8 years.

    The only side effect I have had is puffiness around my collar bone and a slight fullness in my face, thought I am pretty thin.

    I doubt I will ever be able to come off it entirely, any time I have tried to go a day without it, I am totally exhausted by the end of the day. I have resigned myself that I will probably be on it the rest of my life. Yet what choice do I have.

    If I have a day when I will require more energy because of exertion or possible stress, I will take an extra half a pill, or rarely an extra whole pill. But I try do this very rarely.

    [This Message was Edited on 10/11/2008]
  4. kat0465

    kat0465 New Member

    i take 20 mg isocort tabs at aroung 8 in the morning, then at noon i take 2 more.each tab is 5 mg, also i take a slow release compounded DHEA a day in the mornings.i ihavent had saliva testing since i was put on the meds, so dont know if they are working or not, hard to tell any more if anything makes a difference at this point.
  5. equanimous

    equanimous New Member

    Hi Wolverine,

    Sorry you're feeling so horrible on the hydrocortisone. Are you supplementing with pregnenolone and/or dhea as well? If you have adrenal insufficiency, it's likely that these hormone levels are low too. From my own experience, if I supplement with hydrocortisone without taking any pregnenolone, I feel a lot more depressed.

    1. I take compounded hydrocortisone (to eliminate the chemical fillers used in regular prescription hydrocortisone and possibly avoid sensitivity to the medication)

    2. Right now I take 5 mg with breakfast and 5 mg at lunch. I'm not sure how long each dose lasts, but I'm not on extended release or anything.

    3. For the first couple of days I took the medication, I felt sort of drunk/hungover, but that went away.

    4. When I raised the dose to 15 mg and even 20 mg, I felt really depressed.

    5. I'm not really sure if it upset my stomach since my stomach is so volatile to begin with.

    6. N/A

    7. No

    8. If I have a long day at work, or I have to get up particularly early for work, I'll take an extra 2.5 mg. Not sure if this actually does anything beneficial though.

    9. I know for myself that my epinephrine/norepinephrine levels are actually too high. In fact, one of the things that has helped me the most is taking CalmPRT, a product that helps balance the adrenals and lower norepinephrine levels I believe.

    10. I'm still on it after a year, but I do know that if you want to get off, you have to taper very very slowly.

    Again, I would really recommend looking into trying some pregnenolone if you haven't since when you start supplementing only hydrocortisone, your cortisol/dhea ratios get thrown off and you're much more likely to become depressed.

  6. Wolverine

    Wolverine Member

    Thanks heaps for the responses! Much appreciated.

    It's interesting to see how you all do on it, and that some don't need much at all!

    I must be in a pretty severe state to have needed as much as I do, just like grammy had to at the start. It's been 3 weeks tommorrow on it and most of the time ive been above 40mg a day in divided doses. I even wake in the night feeling weird like i need it to even stay asleep.. strange. I've been up to 60mg sometimes and on the worst day I had I was up to about 85mg! I know that's huge, but i felt like my heart was going to collapse if i didnt (this was after a night of almost no sleep.. about 2 hours).

    Anyone else need alot more if they dont sleep? Im guessing that's kind of normal as cortisol is what 'keeps one going' once you dont sleep and have to stay up the next day etc.

    I have DHEA here.. and have tried pregnenolone in the past. However, both of them seem to increase brain fog and cause irritability.. it feels like it just can't process well in my body. I'll try some in cream form when i can, as it may just need to bypass the liver etc.

    That's interesting that you have high epinephrine levels.. i thought once someone had adrenal insufficiency and took cortisol, that the adrenals didn't produce much adrenalin anymore.. am I wrong? I haven't actually found alot of info on this specific subject.. so if anyone knows please share. I would think adrenalin pretty important! For instance people who have complete addison's where the adrenals are completely destructed, or even people with adrenal carcinoma who've had their glands removed, they certainly wouldnt produce any adrenalin. I find it weird that adrenalin and epi pens are not mentioned more often when reading / hearing about adrenal insufficiency etc.

    Thanks again all.
  7. JoFMS

    JoFMS New Member

    Hi Wolverine,

    1. Cortef

    2. I take 2.5mg at 8am, 7.5mg at 11.30am, 7.5mg at 3pm and 2.5mg at 6pm. I was advised these approx amounts by someone who analysed my results dependent on when my cortisol levels were high / low. I also take tramodol painkillers at 8.30am and 11.30am which usually last me until 3pm so I added an extra 2.5mg recently to my 3pm dose as I get very tired when the painkillers wear off.

    3. I didn't feel strange when first taking it - I did a gradual increase in dose - starting at 2.5mg in the morning for the first day and keeping this at 3 days, then added another 2.5mg at 11.30am for 3 days, then another 2.5mg at 3pm for 3 days, then the same for 6pm. Eventually working up to the full dose of now 20mg per day. I have had no side effects doing it this way as advised.

    4. I don't believe it has given me any depression - in fact it has helped me stay a lot calmer in stressful situations. My body used to go into panic mood under any type of stress and on occasions I even hyperventilated and felt very sick before I started the cortisol.

    5. No stomach or liver pain etc

    7. I don't carry the injection but...

    8. I do carry an extra cortisol tablet on me just in case I get a stressful shock that is unexpected like a death in the family or something that will upset me. I have only needed to take an extra 2.5mg once under severe stress. I just felt like i neede it to calm me down and it worked.

    9. I dont know the answer to this but I am under the impression this is what the cortisol does.

    10. I only strted it 2 months ago - I have mercury posinoning so am hoping after I finish my chelation that I will be able to get off it as many others have. The mercury poisoning is a big cause of my adrenal fatigue and chelation also stresses the adrenals so I am making sure I support them all the way.

    Other supplements are also very important to take in addition to the cortisol to help heal the adrenals, I take these for adrenal support:

    Vitamin C 2000mg per day
    Vitamin E 1000iu per day
    Pregnenolone 30mg twice a day
    Vitamin B5 500mg twice a day
    Zinc 30mg 1 a day
    B complex
    Biotin 2000mcg twice a day
    Adrenal Boost - containing sutherlandia, rooibos extract, piper nigrum, vit C, Amla extract, astragalus
    Vitamin B6 50mg twice a day

    B5 and B complex are one of the most important ones but I would try to take all of them if you're not already. How much of the pregnenolone did you take at once as I believe this is meant to be increased gradually also. I take Solal a sublingual one.

    A high protein diet is also very important and to eat often - I make sure I have snacks on me at all times. I have rice cakes with cashew nut butter or brazil nuts or goji berries or cheese at least every 3 hours - helps keep me stable and also my blood sugar levels.

    Diet in general is also v important - I am now on a completely gluten free, alkalising diet. I wrote a post about sprouts too that you may want to read.

    I also now use exercise Chi Gong - which is amazing for stress and helps me focus and feel much more relaxed afterwards. I've jsut ordered some of Lee Holdens DVDs.

    Good luck and let us know how you get on. I've said it before on other posts but taking your temp is so important to see whats going on with the cortisol too. See Dr Rinds temp graph and learn all you can.

    I dont know if you increased your does gradually but it is something I was recommeneded to decrease side effects.

    I also recently went on a detox week in Spain which really helped me cope with stress, remain relaxed and not worry - it was a huge help emotionally and physically at being able to cope and I fell like a changed person. I am no longer worrying daily but find it a lot easier to live by the day rather than worrying about what may happen. I also know I will recover from this and this is my goal - to see myself as happy and helathy again - I'm already much happier so hang in there.

    Hugs xx