Results in: I have Adrenal Insufficiency - Updated & Replies

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Oct 7, 2008.

  1. Wolverine

    Wolverine Member

    Hey all. As some of you may have been reading about my recent last 6 weeks of hell, i finally got an answer the other day at my follow up Endo appointment at the hospital.

    Firstly in short.. they have found I have a form of Adrenal insufficiency, which SHOWS on a standard medical test!

    I first saw them about 2 months ago, telling them that things have been much more difficult lately, and i crash too easily etc. At this time i was not dreadful.. but still had a much reduced capacity for activity, and crashing more often.

    For a detailed explaination for what i've been through in the last 6 weeks - see my post here:

    <a href="" target="a new window">ER 3 Times in one week BP Drops, losing control.. help</a>

    Basically title says it all. Ive been losing control of my body, any little tiny stress has made me feel like i could die, and been in bed almost 24 hours a day, even crashing with NO effort or activity.


    I had a test called an ITT (Insulin Tolerance Test) about four weeks ago, where I had to go into the hospitals Endocrine department one morning, and get injected with insulin before eating anything for the day. So the theory of the test is, you get injected with insulin to induce a hypo (i had a huge hypo/crash from it), then once u have the hypo, they inject u with straight glucose to bring the sugar back up.

    Well they did that, the crash was awful, all of a sudden i couldnt even speak, my brain went almost dead and body was hot flushing, sweating etc. They gave me the sugar injection to bring it up, and i was s'posed to be ok then, but unexpectedly I crashed a second time, so she had to give me more glucose injection. Also gave me toast with jam for more sugar. I finally came out of it after a bit.

    Then i had to lay there getting blood tests every 1/2 hour or so for the next 2 or more hours. So they did a baseline blood test - checking the cortisol level, then more over the 3 hours.

    That big hypo crash is supposed to signal the pituitary to stimulate the adrenals to produce cortisol. Apparently as its quite a stressful event on the body, the adrenals should keep producing higher and higher cortisol levels as the time goes on.

    I had my follow up appointment Monday 6th oct, and they told me that my initial cortisol level was in the normal range, but even after the big stress, the level hardly budges, and I don't get the increase i should. Therefore i have a fair degree of adrenal insufficiency! No wonder im crashing even laying in bed.. i can't tolerate ANY stress.

    My old integrative MD back up the coast in my home town, came to the same conclusion I did, as we talked on the phone last night. He thinks (which ive explained is also my thoughts to others) that my body was already going in this direction last year, but because i got onto the licorice root, which I ended up taking huge doses of, I have 'held off' on the inevitable, which is what's happened now (for those that dont know licorice root blocks the breakdown of cortisol in the blood, so whatever u do make even if little, it holds it in circulation longer). I was recently up to 10-12 teaspoons of licorice root powder a day, just to keep me out of hospital, which didn't even always work.

    So basically any time my body has required a bit of an extra 'stress boost' as happens with normal bodies (increasing cortisol), i don't get it - instead my body crashes not being able to respond to the stress. And it has been HELL (see above post).

    The Endo's were actually suprised at the result, as they expected all tests to be 'normal', going off baseline blood tests. Multiple times they said 'We don't think the problem is of endocrine origin, but we'll do this test just to check'. Well I'll tell you now I sure suspected it was of endocrine origin!

    The Endo's have prescribed cortisone acetate. Im not sure if this is any more or less druggy than hydrocortisone. They prescribed 25mg - 12.5 twice a day. Being super drug sensitive, and knowing how Cort has effected me in the past, theres no way i was starting at that high dose.

    As much as i've been trying to build the body up with all the adrenal nutrients, it looks like it just isnt enough. I've been feeling like i need to go to hosp almost every day.

    So, I got my Isocort out, on monday after the appointment and took about 1/8th of a pellet or so.

    As usual with cort, being super sensitive, i had some initial weird side effects, which i still get each time i first take a dose. However, after about 9 hours, at around 11pm, it suddenly kicked in. I felt like someone had lifted a bar fridge off my chest! Suddenly it wasn't a huge struggle to breathe, and my whole body felt generally better / less stressed, less pain, etc.

    The effect didnt last too long, as i took such a tiny bit, but i still felt ok the rest of the night / next morning. I'll have to get used to it i spose, as i always feel strange at first. Yesterdays (day after's) dose didnt have quite as much of an effect, and i actually woke up at 2am last night kind of sweating and had an episode of hard, very fast palpitations.. which i wasnt sure of why.

    I dont want to depend on it for life.. i hope i dont have to, but if it takes that, at least i'll have some level of life back hopefully. Have to see how it goes in the coming weeks.

    I'm posting a separate post for all current and previous cortisol users, for some direction with it.

    Happy to have an answer to a peice of the puzzle, even though it's still scary trying to work it out.


    *Update: Not so happy right now, see further down my "Catch 22" post.[This Message was Edited on 10/08/2008]
    [This Message was Edited on 10/15/2008]
  2. Juloo

    Juloo Member

    I'm so, so glad that you have some real information from a test that makes the medical profession sit up and take notice. And an answer to your awful episodes -- I really hope you NEVER have to go back to the ER after what you've been through.

    Thank you for posting what the test was. That is really interesting stuff, and something I can pass along as well.

    Hope you're feeling a LOT better as you find your level of treatment.
    [This Message was Edited on 10/08/2008]
  3. justlooking

    justlooking New Member

    I am so glad you found out the source of your problems and can hopefully begin getting better.

    As I mentioned in your other post, my symptoms are very similar to yours, but haven't hit the same severity yet as you have. My similar symptoms hit hardest after any type of exertion. I am supposed to get tested for Addisons disease, which is an Adrenal disease, and is tested by injecting something and then having a series of blood tests afterwards. Much like the tests you had. I have been putting it off as I felt the Endocrinologist was doing it more to shut me up than because he believed I have "real symptoms", despite my chronically high calcium and low glucose tests done by my Primary Dr.

    I think Drs look at a person differently when they already have a diagnosis of FM or CFS/ME. I think you saw that in the ER with the Dr who taunted you while you waited to be seen.

    Anyway, I am relieved for you that you have some answers now and can begin to understand what is happening to you and treat it.

    Best of luck and keep us informed, you are helping others (like me) move closer to getting an answer too.
  4. gapsych

    gapsych New Member

    Isn't there a test that is suppose to not make you so sick? I thought I remember someone else mentioning this test several months ago.

    That can't be a pleasant experience but at least it does help diagnose the problem.

  5. spacee

    spacee Member

    You have been through such an ordeal!! I'm glad you have found some answers.

    I know I have adrenal fatigue. My doc and I "discovered" it when I asked for Serotonin and Dopamine levels to be done. When they came back low, the lab automatically threw in a norephinephine test...high.

    My doc seems to think that since the two are on a little below normal limits and the other is only a little above normal limits that I can just cruise a long like this.

    I don't think that is correct, myself. I need to find some better answers.

    Thanks for posting about you trials and discovery.

    Wishing you better health..

  6. mbofov

    mbofov Active Member

    I'm glad you finally got some answers, but sorry you've had to go through such hell before getting them! I think adrenals should be the first thing doctors check in people with CFIDS.

    Keep us posted how you do with the Isocort.

    Did you ever try an adrenal glandular product? I've used a couple and they helped me a great deal when my adrenals were stressed.

    Take care-

  7. Wolverine

    Wolverine Member

    Hey all. Thanks yeah I hope I can get onto something that really helps too. I am so far having trouble starting treatment.. see my 'Catch 22' below.

    Ah i see. I would go get the test done anyway - the one they are talking about im sure is the ACTH stim test (Synacthin stimulation test). The injection of ACTH will do similarly what the ITT (insulin tolerance test) did for me, but without you having to feel sick etc. You can only feel better from it, or no change if there's no rise in cortisol, so i consider it a safe test. I had it when i first got sick, but back then i had no fatigue and the results were normal (8 years ago).

    Yes Dr's can suck. It was actually a male nurse who insulted me, but ive had my fair share of drs giving me the 'psychosomatic' speel in the past too.

    Thanks ju, gap & spacee. It has been an ordeal indeed, but it's not over yet unfortunately.

    Mbofov: Thanks, yes indeed adrenals should be checked properly. I think everyone with CFS should have the ACTH stim test. It's not hard to get - just get ur dr to refer u to an endo if u dont have one, and ask them for the ACTH stim. They thought my test would show nothing because i had a normal initial blood level of cortisol - its only on my insistance that they tested further. I asked for an ACTH stim, but they said the ITT is one step higher, signaling your own acth rise from the pituitary.

    Out of interest, what glandular products did you use? Also for how long each time, and did you have withdrawal from them? As for isocort, I thought that was supposed to be a glandular - but as most sites say, it has about 2.5mg of cortisol per pellet, and gives me some bad effects (see catch 22 post below), making me suspect maybe they add cortisol to the pellet and dont list it? i dont understand how it's so powerful if not.[This Message was Edited on 10/08/2008]
  8. Wolverine

    Wolverine Member

    Theres a horrifying Catch 22 to this scenario..

    All my health problems started with severe upper abdominal pain, from the liver/pancreatic area. It was so bad, that i eventually could NOT eat from the pain.. I would be in agony on the bed, all my food would get 'stuck' in the area where the liver/panc/gallbladder are (duodenum), and I would vomit all the time. I lost weight and nearly died, had to be on nasogastric tube feeding for 6 weeks which saved my life.

    I took some natural therapies, herbals etc, enabled me to eat a very small amount, but this pain kept on happening. Over the next couple years, i had various episodes of mild/moderate pancreatitis (which i've been told by spec's is the worst possible pain one can go through - worse than childbirth, and i can attest to it. I've been in ER literally screaming in pain with sweat pouring off me).

    I had a few proceedures over the years which helped that horrible pain (panc/biliary colic), and eventually, about 2004 onwards, i slowly began finally being able to eat more with less pain. From late 2005 till present, i have finally been able to eat decently, even fatty foods, meats etc, without that horrid pain. Before i couldnt eat one egg without being curled up on the floor/bed in upper abdo pain.

    Now to how this relates to the current situation!

    Over the years of CFS (starting just after my first massive stress/weight loss/6wk hospital stay beggining '01), I have tried cortisone a few times, but never more than a few days in a row. I now remember why..

    I probably would have kept on it years ago cause of the energy, but i have been reminded since starting again now, that cortisone brings back that pancreatic pain. The higher dose, and the more days in a row i take it, the worse the pain gets.

    I have been almost in tears yesterday and today, because FINALLY i have not been so shaky, weak, cold, nauseous, diarrhea, BP crash etc. I've felt more stable, hardly any shakes (until it starts wearing off), not cold to the core, and finally have an appetite back which is nice. It really has helped my major current symptoms even at the low dose.

    However, that abdo pain happens every time i take a dose, and it lasts at least 4 hours if not longer, makes the pain alot worse when i eat, and i get stabs and pangs in the pancreatic area, and feels irritated most of the time. The pain also is the same as when a pancreatitis attack is coming on, and that pain scares the hell out of me. I have had this reaction from several drugs tried, and if it gives me that reaction i generally just throw the tabs in the bin, because thats how scary it is.

    So as you can see, I'm in an extremely frustrating situation.. Im 'just' making my own cortisol using TONS of licorice, but im not getting an adrenal response when necessary from the glands. The tiny dose has almost taken away my weak crashing symptoms, but is bringing on my original problem..

    What do I do!? :(

    I am really upset, frustrated, confused, very depressed, anxious and unsure of whats going to happen now. Do i try to come off it? (That will be hell even after only four days and i could end up in ER). Or do I keep taking it?

    If i keep taking, i know this dose won't be high enough for long, and i'll have to increase, therefore my pancreatic symptoms will also increase. Then what, a life of chronic pancreatitis along with adrenal insufficiency? Imagine trying to balance that..

    These are the joys of being me.
  9. Atlanta8

    Atlanta8 New Member

    I'm so sorry to hear of these complications, JUST as you've found an answer!! It must be awful. The only thing I can think to suggest is to contact your Endos asap. They'd know the most about it and *hopefully* would be able to suggest something.

  10. spacee

    spacee Member

    I can only in a very small way share your pain. I have hardly any serotonin or dopamine, yet if I take any...I feel great for one day. Then I am in a fetal position in bed in pain from the burning skin pain of my neuropathy. But at least I can eat. And, I am not screaming...

    Back to you. Am wondering and surely there are more knowledgeable people here, if Armour Thyroid med would address your adrenal problem in any way. I was just looking last nite at the Stop the site about thyroid and it did mention that low thyroid would cause problems with adrenal stress. I do realize that your adrenals are beyond stress but could it be a possible help? Maybe give them a chance to recover on their on?

    It brings tears to my eyes to read what you have been through. I have been through nothing like you with the NG tube feedings but I have had to eat nothing but baked potato and fish three times a day AND lying down to eat. Constant nausea.

    Bless your heart...

  11. Catseye

    Catseye Member

    Dang, what a mess! Sorry, this is not as coherent as I'd like it to be, but it's early and my brain isn't "on" yet. And I know you're in a hurry for an answer.

    Leave it to a doctor to give you a test that will stress your body in obscene new ways even when you're suffering from too much stress already. Why didn't they just do a saliva sample over 24 hours? That's what I did and it showed my cortisol levels at 4 times throughout the day. It was an hpa axis test, so I also found out levels of other important hormones like norepinephrine, GABA, serotonin, dopamine and DHEA.

    Spacee's right, check out if you could use some armour thyroid. Check out stopthethyroidmadness for how it works with cortisol and the adrenals. I got on hydrocortisone and armour at the same time. I had to adjust my own dosages, because the doctor's was goofy, as usual. Look at your own test results yourself and see if you're low on t3, t4 and tsh. The armour contains t3 and t4. Just because the doc says you're in the "normal range" doesn't mean anything. Look at the results yourself.

    Remember that we're deficient in nutrients. So are the adrenals. To fix mine, I gave them the nutrients they needed at the precise times they needed them. That's the reason for early morning pills around 4 am. I included vit C, salt water, glandulars, vit E, B vitamins and the minerals. I think Dr. T's powder (just a 1/4 scoop or so) would be good then if you think you can tolerate it. Is it still bothering you or did you just quit it for now? Here's a pretty thorough article about the adrenals:

    I haven't really tracked down the nutrients that the pancreas uses, but you may want to see if you can find them and take them all. I think we're getting pain in organs sometimes because they don't have what they need to make the substances they make and they get superstressed trying anyway.

    After a brief search, here are some nutrients used by the pancreas in this article. Does this describe what is happening, you think? Or have doctors told you it's "digesting itself"?

    And here is someone's take on it from curezone:

    As a person who suffered from passing a gallstone (I didn't know I had them, they were not on x-rays, or ultrasounds), I can say I wish I knew about a gallstone flush long ago. But, since I didn't, there is nothing I can do about that...

    I can tell you that your information about pancreatitis is limited.

    Acute Pancreatitis is an inflamtion of the pancreas, caused by the pancreas juices being caught in the pancreas, and self-digesting itself. Know for certain that scrarring from pancreatitits does exist, and each time an acute flare-up happens, the chances of having a permenant, chronic pancreatitis increases.

    The main best solution for pancreatitis is to give it COMPLETE and TOTAL rest.... that means seeking medical professional for intervenous nutrients, and hydration. You canNOT take anything orally, as that will stimulate the pancreas to secrete its enzymes.

    As far as your recommendations for increased nutrients, I don't know... except that when pancreatitis becomes chronic, sufferers must find all sorts of ways in supplement the diet, especially with digestive enzymes. Because of enzyme deficiency, poor nutrition is inevitable... not all nutrients can be absorbed properly because the nutrients have not been broken down to a usable form.

    The use of all sorts of supplements does NOT complete resolve the problem of mal-absorption. Supplements do help to shorten the length of attacks, and to minimize the intensity of attacks.

    Pancreatitis poses interesting problems, because no matter what, you must eat to receive nutrients. The pancreas secretes enzymes to digest protein, fats, and carbohydrates. Further it secretes other enzymes that help to break down the smaller particles from the first stage of its digestion. And it secretes hormones, like insulin to allow the body's cell use glucose properly for energy. The pancreas has many functions, some are "simple" and some are intricately balanced.

    You cannot live without a pancreas... unless you take enzyme supplements and take insulin.... then remember that the pancreas also secretes glucogon which also helps to change fat back into energy (the loosing weight hormone).

    Pancreatitis is EXTREMELY painful. (Liken it to acid being dropped on the most sensitive part of you skin.) Many cases are from drinking alcohol, some are physical deformities, some are from blocked ducts from foreign objects (gallstones), and the cause of some are unknown completely.



    I can't remember if you've read up on pancreatitis or not, but you could google for "pancreatitis natural remedies" and lots of tips will come up.

    Pancreatitis is one of those chronic things doctor won't help you with until it is so bad, that it is completely damaged and then they can prescribe insulin and enzymes for you. It's just like the liver, they only help when it's so bad, you need live saving drugs or a new one. They just refuse to treat people with what the body really needs because it's just not profitable - you're basically on your own with it.

    My adrenals seem to be fine now, after about a year of babying them and taking those pills at 4am and 4pm - when the adrenals need them the most. And I didn't use the hydrocortisone all that much, and certainly not in the high doses it was prescribed.

    It looks like one of the side effects of corticosteroids in inflammation of the pancreas, which is kind of strange since hydrocortisone is supposed to have some anti-inflammatory properties. The pancreas makes enzymes, which consist of amino acids, and you were having trouble with the whey. It sounds like you are in a catch 22, all right, because you need these nutrients for the pancreas, but you can't get them in your body because you need the pancreas to digest them for you and it's not working because it's starved for these same nutrients. Did you get those Country Life aminos yet? They should help tremendously. If you don't get a result from one or two, I'd take more. You may just need a huge dose of some much needed aminos, among other things. I think the coenzyme A will help some of your problems but I'm thinking especially about the pantethine.

    I think if you try the nutrients for the adrenals and some glandulars, they can come around. But you still have to change your diet, you have too many things wrong.

    I also remember reading somewhere that an imbalance of gut flora, guy dysbiosis, can cause an autoimmune attack on the pancrease. Can you get a comprehensive stool analysis done where you are? Why don't you Y! me and I can send you mine. See if you can get the same thing done and maybe we can learn from it. Mine was a life saver. It sounds like it will answer most of your questions. If you get lottery lucky and have the same results as mine, then you can just do what I did! I think you've really got to figure out what you can and can't eat. I was like you with the eating carbs all day long and at night, so if I could overcome the hypoglycemia, then probably so can you. It just took the right supps with it. I got over the hypoglycemia in a couple of weeks by slowly weaning off the carbs, and within a month it was completely gone. At the least it sounds like you have mega dysbiosis and mega inflammation. I can't remember, did you ever have an ultrasound to look for gallstones?

    As for stopping the isocort, if you are just taking a 1/8 of a 2.5 mg cortisol pill, I don't see how stopping will be enough to wreck you as long as you don't do anything and just lie around. But when I first tried the armour without hydrocortisone, I got some really weird effects. I noticed that the hydrocortisone did help me to a certain extent, but it was still the gut dysbiosis and diet that was holding everything back. I was even taking all the adrenals nutrients and glandulars.

    Now you've proved to the doctors you have an actual problem they can finally see with their tests, but you are still going to have to figure out the pancreas pain on your own. My guess is you can alleviate it with the right combo of diet and supps but it may take a long time. Just keep reading. You should approach it from the view that your body is still lacking in certain nutrients and metabolites and you need to figure out what they are. And see about the CDSA test.

    I'll ask my doctor about the pancreas pain next time I talk to him. He may know something useful. If I forget to post it, ask me on Oct 16.

    best wishes

    [This Message was Edited on 10/09/2008]
  12. jaba520

    jaba520 New Member

    I didnt read all of barrowinnovations post so if i repeat what she said im sorry. My ? is does this response from the pancreas only happen when you orally take meds? is it possible this is something that can be given to you at the hospital in a larger dose by iv weekly or monthly?

    or is there a patch that could work for this condidtion. I am new here and dont know alot of the things everyone is going through or have gone through and tried. But it is something I would ask a doctor.

    I watch too much tv and a lot of it is medical stuff that is what made me think to ask this.

    Good luck Amy
  13. mbofov

    mbofov Active Member

    Wolverine - first, I am so sorry it is so rough for you right now. I don't know what else to say - I'll say a prayer for you.

    Re the glandulars - The best products I have used are Drenatrophin PMG by Standard Process and Cytozyme Ad by Biotics Research. They do not contain any cortisol.

    My chiropractor who did muscle testing was the one who diagnosed my weak adrenals and he gave me Drenatrophin PMG by Standard Process. Within a few days my energy was picking up, with no bad side effects. He told me that the glandulars help support the adrenals, and give them a rest, whereas taking cortisol will actually push the adrenals to work harder when they need to rest. But I'm sure there are times when taking cortisol is indicated.

    I've taken adrenal glandular products off and on for over ten years. Under times of great stress I generally need some, and then just taper off. There are no withdrawal symptoms.

    When I was very weak, I had to take about 3 times the recommended dose. Muscle testing determined the dose. I'm sensitive to meds, but never had a bad reaction to adrenal glandulars.

    Also, I did have the same test barrowinnovations talks about - the adrenal stress index test which is a simple saliva test which measures cortisol levels throughout the day. Nothing stressful about it. However, I don't know if it would have shown your problem as your cortisol levels appeared normal when your test first started, and only when pushed did the abnormalities show up.

    Anyways, if you can't tolerate the Isocort, you might seriously consider one of the adrenal glandulars.

    Take care --

  14. Juloo

    Juloo Member

    Wolverine, I'm so sorry that you are having such difficulty with treatment just on the verge of finding out what could help.

    There are so many responses here, and I was just dashing out to get my son. I don't know the answer to this question, but perhaps someone here does...

    I've used hormone creams (both progesterone and testosterone, and I think there is a DHEA out there as well), both commercial and compounded. Does anyone know if the cortisol could be put into a cream and therefore by-pass the gastointestinal tract?
  15. SnooZQ

    SnooZQ New Member

    1) I wasn't totally clear whether you are now using hc acetate or the Isocort. Several yrs. ago I tried Isocort & suffered mild biliary colic. According to my Naturopath, the ingredient Lomatium in Isocort pellets is irritating & can cause this colic.

    2) Most of the natural & synthetic cortisones increase stomach acid. Sometimes taking them with an acid blocker is helpful for the colicky pain. Perhaps something to discuss with your doc.

    3) Have you tried taking your meds WITH a little food?

    4) Cortisol sort of suppresses some aspects of the immune system. It's possible for simmering infection to gain the upper hand, when one is on cortisol. Licorice, in addition to its mineralcorticoid effects, also has antiviral and mild antibacterial effects. There are dots that can be connected ...

    5) In celiac disease, liver problems are not uncommon. It can be very helpful to do the GF diet 110%, 24/7 -- eliminating even potential sources of cross-contamination, such as would be found in a kitchen shared with gluten-eating folk, or food prepared in a restaurant.

    6) Some supps -- notably iodine & taurine -- increase stomach acid & can cause gut pain in sensitive people. I bring this up because, even though you feel your problem is pancreatitis or biliary in nature, pain can be referred around the gut area. In ANS probs/dysautonomia, dysregulated stomach acid production is fairly common.

    Best wishes to you.
    [This Message was Edited on 10/09/2008]
  16. hermitlady

    hermitlady Member


    I've been following your posts with interest, they've been very informative. I feel for you, I'm not nearly as sick as you tho. I believe I have Adrenal problems and have the paperwork to go get cortisol/DHEA blood tests done. I have to do a fasting one at 8am and then another at 4pm. I hope that will be enough to show something that the dr can treat. I just have to get up the energy to drag myself out to the lab!

    I have FM/CFS/Depr. for the past 10+ yrs, but the CFS has gotten so much worse in the last year. The last 2 months since I had shoulder surgery I have been almost lifeless and so weak. I think the stress of surgery and some other stressors at home have just torn up my entire system. I hope to find out something about my adrenal function, it seems the most logical thing to check right now.

    Best of luck to you w your health. It sure makes life a roller coaster, Huh? The problem is, I'm NOT having much fun!

    xxxooo Hermit
  17. richvank

    richvank New Member

    Hi, wolverine.

    I, too, am very sorry to hear about what you have been going through. I'm wondering whether it would be possible for you to have your level of ACTH measured. I don't mean to get the ACTH (or cortrosyn) stimulation test, I just mean to have your own level of ACTH measured.

    The reason I suggest this is that I think it would help to determine whether the issue is with your adrenal glands per se, or whether it is higher up in the HPA axis, such as at the pituitary gland.

    In CFS, it seems that some people do in fact have adrenal fatigue, involving the adrenal glands themselves, sort of pre-Addison's disease. However, I think that the published evidence suggests that most have a problem higher up in the HPA axis, at the pituitary or the hypothalamus.

    My own hypothesis for this subset is that the pituitary has difficulty in making enough ACTH and in routing it to the regulated secretory pathway because of glutathione depletion in the pituitary. If this is true, it should be possible to correct the low cortisol situation by lifting the partial methylation cycle block, which will allow glutathione to come up to normal. The simplified treatment approach that I discussed in my July 18, 2007 post to the board is designed to lift this partial block. I have heard from one person who had a 24-hour salivary cortisol test that showed abnormalities, who then did the simplified treatment approach for a few months, and who then had the cortisol test repeated, showing improvement. So this is just something to consider. I don't know if it applies to your case, but if you could get your ACTH level measured, it might help to determine that.

  18. munch1958

    munch1958 Member

    I too have adrenal insufficiency. Cortef makes me very shaky - like drinking too many cups of coffee at once.

    I tried a compounded version of hydrocortisone which costs $25 per month. I am on 10 mg 2X per day so I get 60 capsules. There is no shakiness taking this med.

    For extra stress, I have 5 mg Cortef tablets which I can cut in half or not. If I'm on vacation, have to go to a party, a wedding or a funeral, or anything that's stressful, I take an extra 5 mg tablet.

    If I'm sick I double the dose. If I've got a fever above 100 degrees I'm to triple the dose. Plus I have injectable Solu-Cortef to carry in my purse in case of emergancy.

    I've stuck with hydrocortisone for 2.5 years. In the past, I've dropped it after about a year. I'm not sure if I'm going to stay on this for the rest of my life.

    But now that I'm on HGH and still have a menstrual cycle (mine had stopped at age 39) I may go without the cortisone just to see if my blood levels can be maintained.

    The trickies thing that I've found is it takes my body 4 months to adjust to changes in dose. In other words, if I drop cortisol then I may crash in 4 months and then it will take 4 months to get myself back online.

    Did they check your IGF-1 level to see if your making growth hormone too?
  19. Wolverine

    Wolverine Member

    Thanks all for your responses. My brain is really struggling right now so i can't reply individually to everyone, but very much appreciate it, and will try to do so when i pick up.

    Ok, so the last few days have been horrible.

    I was very encouraged the first night when i took some isocort earlier that day, i just felt light and stronger etc, from such a small dose (about 1/8th or so of a tab).

    However, next few mornings i took half an isocort, and half midday or so. To my discouragement, i felt rather irritable and depressed from it towards the evening. I quickly felt like i wasnt getting enough either.

    Yesterday (friday). I woke up about 8am, took an isocort and a protein bar, and went back to sleep. I guess my body gave up making it's own pretty quick, because i woke back up at 12 midday feeling DREADFUL! It was the same as every other time i've been to ER with cold, shaky, weak crashing palpitations, but this time it was much worse, i thought i was going to actually die. My body was shuddering violently and I could NOT stand up if i wanted to. I had no water left and was so thirsty but couldn't get up for a drink, and no one was here. Felt like i needed sugar too (stupid low carb protein bar).

    I instinctively knew it was something to do with cortisol, and I attempted to grab the bottle of Hydrocortisone (not isocort), and my muscles were all SO weak and shaky, that i knocked things over beside my bed trying to get it. After the struggle i got a tablet out and bit off half a 4mg HC pill and chewed it, placed under my tounge (I assume that would let it into the blood stream faster), within another minute, i felt worse and just took another whole 4mg HC pill. So with the iso, i had taken a total of 8mg of cortisone.

    I rang the ambulance with a shaky hand, and they were taking AGES. I had to ring back 3 times telling them i think my heart is failing (it was going about 160bpm, and was up and down).

    I was on the other phone to my girlfriend who I live with (she was at work), and i was crying telling her I loved her and I thought I was going to die, I was saying goodbye to her :( I so badly don't want to leave this life, i adore her with all my heart and soul, and we are so young (im 30 shes 27).

    They took 45 minutes to get here, I couldn't believe it (we're in a metro area). I had rang the ambulance 3 times before they got here telling them to please hurry. Just before they arrived the HC started working - my heart slowed, BP came up, and the shakiness decreased. I was still very weak on my legs and had to knock on the appartment accross from ours to get the neighbour to open the bottom door for the ambo guys (we're up about 8 steps to our place). They checked me out and everything had stabilized. If only they got here in 10-30 minutes they would've caught the episode (only i'm not sure i could've even got up to open our door at that stage)

    They took me to hosp anyway, where it was of course overcrowded. I felt not to bad waiting as the HC was still working. I hadnt eaten tho and felt strange from that. They took me to a room and examined, did bloods etc, and notified the Endo's ive been seeing up there who prescribed me the cort. Took the endo's a few hours but they came down to see me later on.

    One was nice, the other (female) was a bit uppity and not too nice. She was getting up me about not taking the full dose of Cortisone Acetate 25mg from day one. I told her I needed to go slow as i'm hypersensitive and have had so many bad drug reactions before. I honestly also didnt know that my body would do this to me. I thought i could possibly get away with 5mg a day of proper hydrocort from past experiences with it. (never more than 2 days in a row or so, but drastic effects). I guess not.. I guess my adrenals really were near their end. As grammy has said above, ive tried so many supps especially licorice in huge doses for a long time, nothings working now.

    So.. It's come down to it that i need replacement, and a low dose just wont do, gut pains or not. This morn after yesterdays ordeal, i woke up and took one 4mg tab of hydrocort (i dont know why ours in aus are 4mg and yours are 5 in the US). I felt ok it worked fairly quickly and i was able to get up and have breakfast etc. Didnt really have that much to eat.

    However, i was very suprised that i wore off really quick! I took the 4mg at 8:30am, and I expected to be able to wait to take another dose at midday.. but i woke up at 10:30 feeling awful again! Not as bad as yesterday, but i was very nauseous, shaky, feaful, and for some reason both my arms shoulders down were really cold. I quickly took another 4mg tablet, and within an hour, i felt i needed another one! so that was 12mg by midday already. By 3:30pm i got shaky again, and had another 2mg, then that wore off at 5:30!

    What the hell is going on? I thought HC lasted at least 4 hours in the body! This is frustrating.

    And yes as feared, i've been getting really bad gut irritation from the higher dose. Earlier after that 8mg dose, i ate only a few rice crackers with dip, and my liver where my gallbladder used to be was flared up with awful pain, and i was SO nauseous! I've barely been able to eat all day because of it. The nausea has only just lifted a bit now that i've not eaten for almost 7 hours (and tiny bit of food at that). I will lose weight fast and am already underweight at this rate.

    The HC has stopped the shaking, weakness, coldness etc - all those Adrenal insuff. symptoms ive been having for the last 6 weeks, but to be honest, i still dont have much energy. I get tiny bursts of feeling a little better, but man, i thought if i started HC ever, i would be able to walk around the block within a few days! Also, when i first take it, it makes me very tired after about 20mins, my brain shuts off and i cant think, read, anything. I have to wait about an hour for that to wear off, then i feel a little better but that only lasts about 1/2hr or so.

    Sometimes, say, after the first hour, it makes me feel calm and relaxed in the brain. But after that, i start getting this horrible, irritable depression and brain fog. Specially when i took the 8mg at once, the irritability was awful! I felt like crying for nothing, which is a feeling that comes and goes since starting it.

    This is like a nightmare. I now have to have this stuff to live, and I feel i've lost my normal rhythm of life and feelings. Im usually extremely positive, even the last 6 weeks of being in bed, ive been thinking clearly inbetween feeling bad, taking all the new supps i have, and planning all the things to do when i get well. Now its like that's all a haze.. I can't think properly at all, i forget to take most of my supps, im just trying to 'manage' in between these ups, downs, fog, depression, liver pain, nausea, ETC. I wish to God above that i had found another solution for these problems before now, I am a total mess. I thought if I ever went on HC, my life would be so much easier.

    Sorry this is long guys, Just really down at the moment and I appreciate you all so much. Any ideas on why i'm having such a hard time would be great.

    Oh also see my new post 'To All Those on Cortisol/Cortef/Hydrocortisone' especially if you are or have been on it before.

  20. Juloo

    Juloo Member

    I'm so sorry that you are still having such awful problems. I know that someone else mentioned it, but after your last post I feel even stronger that you should talk with your doctor about looking into sustained-release. I looked on my cortisol, and it is S.R. (It is compounded and is an oral medication.)
    [This Message was Edited on 10/11/2008]