Madwolf and Pink Re: Cortef

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Aug 3, 2003.

  1. klutzo

    klutzo New Member

    How much would you say the Cortef is helping you as compared to other things?
    In what ways has it helped?
    Have you tried precursers like Pregnenolone and DHEA?
    If so, what were the results?
    (Maybe if I have some testimony to show my doc, it will help).
    "Extra credit" question for Madwolf - would you prescribe Cortef to a patient who has steadily increased energy on Armour with no crashing, with insomnia the only side-effect when raising the dose, whose fasting 8 am serum cortisol is 18, and whose saliva tests are all in the normal range for cortisol at 8 am, noon, 4 pm and midnight?
  2. pinkquartz

    pinkquartz New Member

    the cortisol is helping me tons.
    other then the Armour which is also totally important for me, it stands alone.
    because i think that i have had the adrenal burnout right from the begining of me being ill.
    all these years and all the things i have tried, i have felt some improvements, but nothing ever remained.
    Nothing has ever made me feel like i do now, since 1991.

    I have a long long way to go , however i feel now i can feel an actual change that is also visible to people who know me . If i had to stay on this for the rest of my life i would.
    i know it would have been better if i had had the cortisol before the Armour but its really hard to get this over here. It took me 7 years of asking different docs to get it.
    It has given me some physical strength.
    i feel more like myself.
    i used to get so tired that i would feel i could just die.....i dont get that now unless i push myself to overdo it.
    i am more inclined to actually throw away stuff i have hoarded....because i have the energy to see it.
    i feel more prepared to be assertive,
    i am not quite as jumpy
    i can very slightly tolerate noises a bit more, my insides don't freak out all the time.
    i have had a lot of stresses and i have definately coped better.
    my blood pressure has dropped !!!!!!
    at least once [and am hoping it will be down next time

    i added in some DHEA just a few weeks ago.
    i am up to 15mgs now and want to try 25mgs. i think it is helping but its subtle, maybe need to be on it longer and larger dose to see.

    must go ,its late here.........and am tired, i am starting to not want to stay up late so much. i think this cortisol is brilliant for me, i have put on weight but it might not be the cortisol.

    i hope you can try a higher dose of Armour , or try cortisol and see for your self how you feel on it.
    in case you didn't see the other thread my cortisol before taking cortef was 2.8.

    hugs, pinkquartz
    [This Message was Edited on 08/03/2003]
  3. klutzo

    klutzo New Member

    With an am cortisol of 2.8, I can see why you would need Cortef and feel better on it!
    My am Cortisol was 18, so I am not sure it's needed.

    I was sick from Fibro for almost 10 yrs. before menopause without having any these problems which are being attributed to my adrenals. My husband says he thinks my problems are all due to the hormonal changes of menopause, and that is certainly when the problems started. It's all so confusing.

    I am glad it is helping you.
  4. tansy

    tansy New Member

    a lot of my current problems too. Just think the sudden and erractic changes in them prior to the perimenopause were the last straw. All my disease containment measures ie supps, pacing etc, went down the pan - they no longer worked. No stress at the time, in fact considering my level of disability/symptoms I was doing pretty well.

    So I'm learning from you are you go on a similar journey of discovery. I too get so confused as things seem to make sense and then don't.

    I knew my cortisol levels would not be as low as Pinkquartz's but that if not right it would help to get it to an optimum level. Many years back I used to go to two doctors who aimed for optimum levels of everything needed, and lessening the toxic/pathogen/allergen load, to give our bodies a fighting chance. Madwolf appears to do that too.

    There was a message on this board a while back by someone who had been put on pregnenalone and 7 keto dhea and found they really helped. Maybe the only option for me if GP won't prescribe cortisol. After that I have to look into the sex hormones so that I can get both the levels and balance right for me.

    In the meantime addressing hypercoagulation and infections but that's going to be a long and gradual process.

    Another of those times when a magic bullett to cure all of us would be just so great. One day perhaps.

    In the meantime hope you get some of the answers you're looking for. Good luck with your next Dr's appointment.


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  5. klutzo

    klutzo New Member

    Let's help each other figure all this out, shall we?
    You'll be glad to know that pregnenolone will probably take care of any sex hormones you need as well. It raised my estrogen level from 19 to 110 after 6 weeks at 30 mgs. daily. In fact, that is why I lowered the doseage to 10 mgs. twice weekly awhile back. While 110 is a great estrogen level for most women, I can't have it all the way up in the normal range like that, or I start having migraines again. The only good thing about menopause was getting rid of those #$@#%*& migraines.
    Since Pregnenolone is at the top of the adrenal cascade, it can theoretically make all the other ones you need, including DHEA. Some people have glitches in this, however. And, those who do not need their sex hormone levels altered (like pre-menopausal women and young men), may prefer 7 keto DHEA, which I believe does not get made into sex hormones.
  6. tansy

    tansy New Member

    two fogged brains will work better than one. Second heatwave just hitting UK now so brain will really slow down whilst rest of body goes beserk. Research will be all the more challenging. Roll on early autumn.

    Will start on pregnenalone but will not use dhea due to raised testosterone, the 7 keto version does not affect sex hormones so this seems the best combo for me. If just one or these two work that would be great because my GP is not going to just hand out a precription for cortisol without a lot of persuasion, I'm hoping the fact Dr Sarah Myhill uses it will help.

    No doubt you too are very apprehensive when taking anything new. First we have to find out whether our bodies will tolerate it, next we learn whether it's effect is going to be detrimental or helpful.

    Your info on POTS was helpful, made sense of blood sugar swings and why it took so long (days once temp cooled a bit)for things to adjust back again. It still takes until after 4.00pm to get hydrated and sugar levels feeling right, hoping pregnenalone etc will help with that.

    Trying not to think about financial implications of all of this, already struggling and my supps cost just seems to go up and up. Just hope I can sustain what I need long enough but realise some of this will be for life.

    When you think about the brain fog and fatigue it's quite amazing how much we all learn from one another on this board. Makes one even madder at the doctors suffering from ostrich syndrome.


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  7. pinkquartz

    pinkquartz New Member

    i am now starting the menopause and can see my female hormones going even more awry than they have been, therefore i will be keeping an eye on the two of you as some of it may be relevant to me also. also i maght be able to glean something useful from my nutritionist.

  8. nickname

    nickname New Member

    .....sorry if this is raking over old ground, but can u tell me, what test did your gp do to test the adrenals and cortisol levels, before prescribing - is it hydrocortisone,what strength etc. Am just starting on this route. Did the doc say that this is a long term treatment, or short - are there any negatives. Oh, and did u get your female hormones tested too? What way etc? Sorry for all the questions, and if you are not up to it, don't worry - please let it be winter soon - this heat is not good.

    With best wishes
    [This Message was Edited on 08/04/2003]
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  9. pinkquartz

    pinkquartz New Member

    later today or tomorrow.
    have to cope with stuff here, friend had another fit and i have stuff to do

    cheers, pinkquartz
  10. pinkquartz

    pinkquartz New Member

    i had the saliva test first, which i paid for and i did it with my nutritionist. then i saw my GP and she did a blood test. i can't remember what its called but its the usual one.
    the doc was then happy to see that my cortisol response was low enough for her to prescribe the cortef/cortisol which is hydrocortisone.
    she put me on 15mgs per day. split dose.
    i have dropped down to 12 and a half mgs as this feels more comfortable.
    i am on a 6 month trial.
    first it was a month trial but as it was clear i had a good response the doc was happy for me to continue. i am hoping i can stay on it for longer.
    the only drawback is it might be why i have put on some weight.

    i want to have the female hormones tested but as i have to pay , and its not cheap we keep waiting for my cortisol and dhea intake to be stable, so i don't waste my money.
    i hope to do the test soon.

    i am interested in how you are getting on . are you going to start soon ?
    one thing, drink more water the first few days.
    do post up as soon as you start, what dosage and how you feel.

    best wishes,pinkquartz
  11. tansy

    tansy New Member

    sorting out the hormone problems.

    I've been using natural hrt it has helped but not enough. So now I'm looking into natural progesterone cream/drops then possibly a supplement nickname mentioned which helps good oestrogens.

    My downward spiral was made worse by changing hormone levels and having read up on this a bit I think we may need them just a bit higher in order for our bodies to do well.

    Have taken note of Klutzo's recent posts on neurotransmitters because they seem pretty relevant too. Oh boy is my head spinning. So much learning, too much cost.

    It would be great of you could get some feedback from your nutritional doctor, though as I am learning they all seem to have different ideas on this - perhaps she will clairify it for us all.

    Take care now.



    ps I have sent a quick e-mail which appears to have gone through.
  12. pinkquartz

    pinkquartz New Member

    particularly to tansy and klutzo

    i have bumped my dhea up to 20 mgs.
    i feel a little bit better. this is so weird, for me to feel a bit better ! ;-}
    i feel awful when i wake up but as i take my cortisol and armour and breakfast and dhea i begin to feel more solid.

    i was able to do something amazing on monday, my friend who had the brain bleed and fit. i was out with and he went into another full on seizure. i saw what was going to happen and got out of my wheelchair grabbed him and used my wheelchair for something to hold onto so we didn't fall and i shouted for help. i was able to stop him falling.
    if i hadn't he would have gone down onto concrete.
    it was all scary and upsetting....someone called an ambulance and the paramedics insisted he had to go to hospital as he was still out of it . however he is back with me again.

    today my left foot has swollen and is very very painful. this was the strain from monday. but i feel so pleased that i actually did what i did.
    however rubbish i still feel i am definately getting stronger. which is scary to come out and say.

    i never have had an improvement like this ever.

    just wanted to say this really.

    i will do some reading on the hormones, and the neurotransmitters which are fascinating.
    my nutritionist goes on her hols for a few weeks on sunday ... i will definately be able to ask her questions when she gets back. she is really passionate about what she is doing.

    love pinkquartz
  13. klutzo

    klutzo New Member

    He is so lucky to have a friend like you. You both are very courageous to get out and about with all your problems. My mother was in a wheelchair and other than going to work, she refused to go anywhere. She was hurt and humiliated when people stared at her, so she missed seeing me staring in school plays, etc. and my dad had to take me to everything growing up, which was embarrassing for a little girl. I am glad you are doing as much as you can do with your problems, and that you are feeling better. I hope yor friend is better too.
    You made my day,
  14. tansy

    tansy New Member

    things were getting better and this message certainly proves it. I'm delighted to hear that the dhea, hyrocortisone, and armour thyroid, are making a noticable difference.

    You did good catching your friend like that. Must have felt amazing to realise you had more strength than before. Hope the foot heals soon.

    I see my GP tomorow and will see if she'll prescribe cortef, if not I'll go for the pregnenalone and then 7 keto dhea (if I think I need it as well) and see how they help. Just feel I need to up and stabilise the whole cascade.

    Just read a topic on maca root, it seems it can help with the perimenopause etc, might be worth checking out to see if it can stabilise the changing sex hormone levels. Do you think the progesterone drops are having any effect?



  15. tansy

    tansy New Member

    She took the saliva test results seriously. Was very hesitant about hydrocortone so spent lots of time checking it through. I showed her Madwolf's comments and told her about Dr Sarah Myhill's protocol and the two reseach programmes.

    So she's agreed to a 4 week trial of 10mg a day, split into 2 5mg doses.

    My estradiol levels are low on both saliva and the blood test she had done. Progesterone also lower than she'd like but not so marked. Neither of us is keen on HRT and there are risks for me so we've agreed on Estraderm patches giving 25 mcg over 24 hours and progesterone as 1mg Norethisterone 12 days in 28 day cycles.

    She feels this combo is the best choice for me that she can precribe through the NHS. There is a higher dose patch which contains the progesterone as well but we're both concerned at the risks of higher doses of oestrogen.

    She suggests we try this out for a while and if it suits I will not then have to pay for more specialised test and hormones that cannot be prescibed on NHS.

    When I rang the Health Centre weeks ago about results I was told I was perimenopausal and did not need to see the doctor, just goes to show we need to see our doctors not take a receptionist's own interpretation of it.

    If I want armour thryoid I think I'm going to have to pay for a free T3 test but I want to see how the hydrocortisone goes first anyway, that alone may settle things down.

    How are you today, no pay back from Monday I hope.


    [This Message was Edited on 08/07/2003]
  16. nickname

    nickname New Member

    ...thank u for replying. I am just absolutely garbage. Because of the heat, I had to go downstairs yesterday to lay on sofa - thought I was going to die what with heat rising and all (am confined to upstairs and bed). Today, I cannot move and head feels like it's in a sewer.

    Have to get my head around all of this when the weather changes.

    Thinking of u and your friend.
    best wishes
  17. pinkquartz

    pinkquartz New Member

    i just found this post.

    sounds like a really good choice of patch. you will be getting the right type of estrodiol, thats good.
    i thought i was anti HRT until i starting reading about the natural estrogens and how its quite different as long as its not the mares urine stuff.
    now i will take it if i am deficient.

    i have no idea about the progesterone, maybe it will sort it self out ? i am reading as much as i can , but very hard to actually understand what i am reading !

    its best to start with the cortisol ahead of the might not need it after a course of the cortisol.

    i do feel affected by monday, its the after effects mixed with the implications.

    i have sore eyes today and not a clue why, friend says my eyewhites are looking grey. i will put up a post if it doesn't go soon. guess it could be all the extra thousands of cars going past and their exhaust fumes in this heat. i even feel dirty like i used to in London, ugh.

    thanks to Klutzo,Slowgirl Tansy and Nickname for your replies.

    Slowgirl can you answer questions for me about the epilepsy ?

    Klutzo......sorry your mum was so ill and was afraid to go out in her wheelchair.
    i was too ill to go to a lot of my daughters school things and i will always feel sad about this. i know me being ill has been very hard for her.

    love, pinkquartz
  18. pinkquartz

    pinkquartz New Member

    i m sorry if i upset you asking about the fits and your dad. i hope i didn't.

    i can't go with him to see the docs. but i might try and see the GP.
    it was so scary to see and we are both quite tense since. i think i am afraid of more fits, especially when i am on a bad day. somedays i can't do more than cope with a severe headache or all the over pain.
    he is so disappointed...he really hoped it would be a one-off. as you say it might be a phase, hope so.

    about the eye could be right, trouble is my doc is still off sick and i want to tread carefully with this. if it doesn't go away i could try cutting the dose/doses.

    you are correct the tv is rubbish, which is always the true proof its summer !