Does anyone here have Addison's?

Discussion in 'Fibromyalgia Main Forum' started by Rafiki, Jan 8, 2009.

  1. Rafiki

    Rafiki New Member

    Thanks for any replies.


    [This Message was Edited on 01/08/2009]
  2. Heyygirl

    Heyygirl New Member

    full blown Addison's, but adrenal "fatigue". I am on 20-30mgs replacement hydrocortisone but do not need the florinef.

    [This Message was Edited on 01/08/2009]
  3. PainPainGoAway

    PainPainGoAway New Member

    Hi Rafiki,
    U hali gani?
    I don't have it, but did have extreme problems with blood sugar in the early 90's that led doctors to treat me for it for a short while. I improved and had no lasting damage so the diagnosis was just hypoglycemia at the time (and just about everything else I have got diagnosed later).

    My next door neighbor (66 year old male) has a pretty extreme case.
    The search function seems to be working even less now, but I believe Wolverine and possibly Waynesrythem (not sure about him) have it so there may be info on their posts.

    My neighbor has problems with his heart, kidneys, panic attacks, low blood sugar, extreme agitation at times and has darkened skin-- all because of the Addison's. His main complaint lately is heart palpitations and trouble dealing with the cold weather. He's on cortisol meds, xanax and heart/bp meds. He says his mind works like molasses...of which we can all relate!
    Take Care,
    [This Message was Edited on 01/08/2009]
  4. Waynesrhythm

    Waynesrhythm Member

    Hi Rafiki,

    Seems like a long time since were visited... Hope you've been as well as you can be...

    I started on low-dose hydrocortisone about ten years ago for what appeared to be severe adrenal insufficiency, bordering on Addison's Disease. I can't really say for sure what I had at the time either way, because I never had any testing done. We proceeded on clinical observations of symptoms and effects of cortisol supplementation. Much of the testing that conventional doctors do is open to varying interpretations, so even if I had done some testing, it may not have necessarily been conclusive.

    At present, I suspect I did have Addison's at the time, because even the smallest amounts of Cortef (prescription cortisol) could have a big impact on my system. A dose of 2-3 mg was hard to integrate at first. Putting it in context, the body normally makes approx. 40 mg/day of cortisol. So the fact that less than 10% of normal body production of cortisol could have such an impact would indicate my adrenal glands were hardly producing any coritsol at all.

    After low-dose supplemention for many years, I feel my adrenal glands rejuvenated themselves to the point where I now feel I have adrenal insufficiency (probably about 50% of normal function), whereas Addison's is usually referred to as having lost 90%+.

    I assume that a lot of doctors still do not subscribe to the notion of adrenal insufficiency, which would explain why conventional testing is inconclusive and open to varying interpretations. It never made sense to me that you either have Addison's or perfectly functioning adrenal glands. What of those people who have lost 89% of adrenal function?

    A Dr. Gerald Poesnecker (now deceased) spent his entire medical career specializing in treating adrenal weakness, insufficiency, fatigue... (lots of names for this). He wrote a book entitled "Adrenal Syndrome - The Disease No Doctor Wants To Treat". In his later years, he came to believe that CFIDS was essentially "adrenal syndrome", based on the similarity of symptoms. I personally don't believe this myself, but do believe that either condition can contribute to the other.

    I consider myself to have adrenal insufficiency as well as CFIDS. Based on some recent Lyme testing, it appears I also have Lyme infections along with the CFIDS and adrenal insufficiency; and who knows what all else. I'm really quite the mess! :)

    Dr. Poesnecker made some interesting observations during his many years in practice. He observed that about 1/4 of the population will have certain genetic weaknesses that will predispose them for adrenal insufficiency. For these people, normal stresses of living will often lead them into suboptimal adrenal function.

    About 1/2 the population have what he considered normal genetics regarding adrenal function. These people could encounter the normal stresses of life quite readily, but if confronted with exceptional trauma or stresses, could become vulnerable to weakening adrenal and stress response function.

    Then there's the other 1/4 of the population who are born with exceptional genes which allow these people to experience high degrees of traumas and extended stresses without having their overall adrenal gland health the least bit affected.

    I think this information ties in somewhat with the thread about the article about whether childhood traumas are correlated with CFIDS. But it's too late to try to explore this in my tired little mind this evening.

    I thought of you the other day when I was talking to my sister (who has a less severe case of CFIDS than me), but does experience fairly signficant brain fog. She mentioned that taking Benedril always clears up her mind when the brain fog gets too thick for her. I've yet to try it myself, but I do plan to. I thought I'd pass this information along to my friend (you), who has commented at times that it hurts to think.

    Hope you're having a good day today. :)

    All the Best, Wayne[This Message was Edited on 01/17/2009]
  5. Rafiki

    Rafiki New Member

    I can't remember how to reply. Sana, sana -- 'cept it's not. Do you speak Swahili? I don't. I used to know a smattering of useful phrases in a number of languages: Swahili, Bengali, Hindi, Urdu from my traveling time but I get them all mixed up now.

    Anyway, Addison's. Thanks for the info. Apparently, secondary adrenal insufficiency does not necessary include the darkening skin. And, it was very common after Tuberculosis. Could there be another infectious agent triggering Addison's now?

    I know everyone else has probably already been all over this but it's news to me.

    thanks again,

    [This Message was Edited on 01/09/2009]
  6. Rafiki

    Rafiki New Member

    It is good to bump into you again!

    Thank you so much for all this information! I can't get over the similarities between Addison's and ME. I won't go into everything (some of it would be TMI, anyway :eek:) but it rang some huge bells for me. I must look further, I think.

    I can't thank you enough for your great post. So much really interesting and helpful information. You are a gem, Wayne, you really are! I will be reading and rereading your post!

    Your sister's experience with Benedryl is interesting. I have found non-sedating antihistamines helpful (I think, it's a bit unclear as it's not a dramatic effect) in the past. I also take Benedryl at night to sleep and it works very well for me. Except, and this is a fairly significant except, it gives me full body "restless leg" after a week or so and I have to take a break. It also knocks me out :eek:)

    Well, Wayne, I really hope you continue to journey out of this confusion and onto regained health! It happens, could happen to you! Keeping my eyes crossed!

    Thanks again,
  7. Rafiki

    Rafiki New Member

    I understand the Addison's is tricky to manage and it certainly seems so from your post. Thanks so much for posting!

    So, Grammy, since the symptoms of Addison's and ME are so alike, do you have ME and Addison's or do you have FM and Addison's?

    Do you think it's possible that ME is a post infection Addison's? The most common cause of Addison's until its near, and temporary, eradication was Tuberculosis.

    Thank you so much for going to the trouble to respond. You have given me more to ponder and explore.

    Thanks Grammy27,
  8. deb_46

    deb_46 New Member

    By the time I realized how severe my adrenal insufficiency was I was already on cortisone and can't get accurate testing while on it so I don't know for sure. I've been hospitalized three times within the last year for going into adrenal crisis which was very scary.

  9. Rafiki

    Rafiki New Member

    I can't believe this all passed me by so often and I paid so little attention. My thyroid has always been fine, I assume, but I have a very cavalier doc. who always assumes everything is fine without actually reading the test results. Yes, I know.

    Anyway, I have become "shocky" during bouts of gastric stuff and lost consciousness on more than one occasion. I don't panic very easily and I'm always ready to think if it's over, it's over so I haven't ever told anyone. But, during each of these experiences I have been quite clear that I was dying. Funny I haven't told my doc but each time I'd think: Well, don't know what that was but I lived.

    The only time I sought medical care was in Brazil where they took the whole thing VERY seriously - had me hooked up to IVs and, ultimately, onto a plane for San Paulo. But, everyone was speaking Portugese where I started out and by the time I got off the plane in San Paulo three days later, I felt better and just hung out in the hotel for a few days.

    I'm wondering if these are episodes of adrenal something or other. They are incredibly unpleasant and frightening experiences and I don't scare easy. For sure, I'm going to follow it up.

    So, thanks all very much, indeed. Very sorry to find so many here struggling with this. Very grateful that you took the time to share.


    [This Message was Edited on 01/11/2009]
  10. Rafiki

    Rafiki New Member

    Thanks so much for all the info!!!

    Yes, I will check this out and no, I don't get my results although my doc might be ok with giving me copies.

    She's a good woman and treats me with respect but she does not check things that she does not think will be abnormal. One day she was listening to my heart and said it didn't sound right. Then she said she wasn't worried because my cholesterol was fine (yeah, I know) and then she rather absent mindedly rifled through my file and found my last cholesterol and said: Oh, your cholesterol isn't fine. So, too much about cholesterol but it was this experience that woke me to the reality she does not check.

    When I first got sick one of my most unpleasant symptoms was a pain/ache/totally awful feeling in my back at the waist. It was described by neuro.s as girdling pain because that fit with the possible MS diagnosis they were entertaining at the time and it has never been looked at in any other light.

    When I have these episodes I usually get gut pain and then, you know, gut something else and then I cannot walk or stand or even remain sitting where I'm sitting if you know what I mean. I'm not exhausted, I'm weak, sweaty, clammy, totally helpless on the floor unable to do anything at all about anything at all. I can sometimes lurch from the loo to the couch but it's a race against unconsciousness. It's an awful, awful feeling.

    Given the connects with the gut I've always just assumed that I get shocky faster than most and it's about fluid loss or... don't know. When I live through it, I just assume it's over and if I should have called someone I would have died. The fact that I'm still alive is all the proof I need that I made the right call in not making any call at all.

    I'm laughing at me! I'm so strange. But, you know, I feel too awful to be able to call or to explain or to move or to tolerate anyone doing anything at all to me. I'm busy staying alive. Whatever this is, I know it is dangerous.

    But, Grammy27, I intend to learn from you and everyone else and actually check into this. Over the many, many years of illness I have learned to just ride out whatever is going on as many of us here do. I no longer think of the medical profession as having anything to offer me even when I feel as though I'm on the brink of death. I wonder how many of us do die in similar situations and what the official cause of death is.

    You have all given me a wake-up call. I have never really examined my behaviour in regard to this and I should have. It's kinda shocking when you look at it from the other side of my experience. What am I thinking?!

    Thank you all very, very much for all the time you took to reply.

    Peace and increased common sense,

  11. getwellgirl

    getwellgirl New Member

    Hi everyone

    I have adrenal insufficiency and autoimmune thyroid disease, I crashed with ME/CFS in 2000 but didn't get my endocrine system treated till 2002 when I did improve. However I have never been able to get optimum on my thyroid so now I am trying some T3 added to my Armour. I take 5mg Predinisolone on waking and usually a dose of 2.5mg hydrocortisone in the afternoon.

    Recently I had to take 3/4 tablet of fludrocortisone because my salt balance went after a period of using high dose garlic which caused me to go hyper. After stopping it I had a major adrenal crash and couldn't recover without the Fludro. I have now stopped it but am aware I will probably need it again in the summer.

    I really don't know if there is something else going on or if its just the damage to my body because of untreated adrenal problems for so long. I first got sick in 1979 after 2 weeks of flu but I had a baby in 1975 where I lost 4 pints of blood after childbirth and this can cause Sheehans Syndrome which basically caused Secondary Addisons, plus low thyroid and sex hormones.

    I look forward to when they have a test for CFS/ME cos maybe then I will know if I fit into their catergories.

    Many times when people post their symptoms on these boards they sound so adrenally/thyroid related that I do wonder if they all have an underactive HPA axis being their main problems. Obviously if the endocrine system is functioning properly then one is going to have all sorts of problems with viruses, yeasts, bacteria, heavy metals etc.

    I have an open mind about it all but do know its an absolute nightmare trying to get all the meds for my endocrine system balanced!

  12. gapsych

    gapsych New Member

    I am in the process of seeing if I can get a referral for an endocrinologist as I have found this topic to ring a bell.

    I also have a history both for my family and myself with hormone imbalances. My grandmother, mother and two Aunts ended up with Graves disease.

    What I am trying to sort out is the test. I had read that you should not do the ones where you send away your saliva as it can be damaged during transport making it possibly not as accurate.

    I would also not want to try the supplements and fool around with the dosages. I am really puzzled how these products can be bought OTC. Am I correct in this assumption.

    I have wondered for years if I have the cortisol levels that are flip flopped making me awake during the night and sleepy during the day.

    Didn't someone on the board say they had a horrific reaction to the stim test. Is this common?

    A long time ago, even before this DD, I remember saying to someone that I wondered if I had not exhausted my body of all it's energy by the time I was 25 as I was always overdoing it, some Type A behavior, etc. I have always needed a lot of sleep. This was before the serious exhaustion and FM set in after breaking my arm.

    Keep us posted what you decide to do. I have never had the attacks you mentioned. How awful.

    I think this is a path definitely worth considering.

    Take care.

  13. Rafiki

    Rafiki New Member

    What a response!

    The more I read about adrenal insufficiency, the difficulty in testing for Addison's, the way Addison's was a consequence of infection with Tuberculosis, the symptoms, the way an adrenal crisis often begins with gut issues, the many people here who have adrenal problems... the more curious I become.

    What I've always thought was that I had some sudden shift of fluid in the cells and went into shock. I assumed I became shocky so easily because my blood pressure is low.

    I also assumed that since low blood pressure is not considered a problem by any doctor I've ever seen, that any illness or fainting which results from it must be fine. I'm not real smart about these things but I'm guessing you were already suspecting that.

    Re stress: I don't stress easy now but the first 20 years of my life were very, very stressful. I had panic disorder or seizures (don't know who to believe) from 18 to 33 which was stressful. After that time I made it a goal to get chill. However, I had a very exciting and sometimes dangerous and therefore stressful career. BUT, now I'm a meditating chillster :eek:)

    I am so cool headed now it is a problem. In fact, I had a really lousy day today spent either here, typing flat on my back as I do most days, then quickly pushing the computer off my lap because things were going dark and the whooshing sound was getting intense. I'm still in a shaky in between sort of place where I can sit up with pillows but I'm not sure I won't need to suddenly flatten myself.

    So, with the sage advice I had been given, I contemplated doing something about this today. When I thought it might trip into a real unconscious on the floor episode I contemplated telling someone. When I felt a little better I contemplated how sorry I would have been if I called someone and had to deal with them and didn't die after all. :eek:) jk

    My alarms don't work any more. This is not good.

    I will have to read all these posts again. But, I really think I want to ask for the stim test. This means I have to get my body to the doctor and then to a lab to do two blood tests hours apart. I can't go anywhere and sit to wait out the hours so I'll end up lying on the floor somewhere.

    Anyway, I'm processing and tremendously grateful to all for sharing your own difficulties and trials with me. I wish us all some solid answers and real help and alarms that go off when needed.

    Thanks and I'll be watching for news on all of you.

    Peace out,

    PS I apologize for the fractured nature of this post but the brain seems to have logged out for the day.
  14. Waynesrhythm

    Waynesrhythm Member

    Hi again Rafiki,

    Thought I'd pass along a little information about my family history that might be pertinent to this discussion. Growing up, I used to hear things like, "Mom went over to Grandma's again, she just had another spell ...".

    Eventually, as my mother got older, she also began to experience spells, where she would pass out and often somehow get quite dehydrated in the process. It usually occurred after dealing with some kind of stressful event.

    I've experienced a lot of light-headedness for many years, but have now started to exerience my own version of "Grandma's spells". I don't pass out, but I do get pretty woozy, and have to lay down as soon as possible once they start. I'll sometimes break out in a sweat as well.

    I think these are probably along the same lines of spells my mother and grandmother experienced, but I likely can tolerate them better because of the low-dose hydrocortisone I'm taking. I guess the point I'm making here is that a lot of this, at least in my case, goes back to genetic predispositions.

    A couple other things you might find interesting: 1) A guy I talked to on the phone once (who also had adrenal insufficiency) said that a tell-tale sign as to whether you have it or not, is whether a person has lost the hair on the calves of their legs. It surprised me, because I had noticed this for myself for several years. I always thought it was because my calves rubbed up again my pants. But I guess if that was the case, I wouldn't have had any hair at all on my legs. Some times I just don't think things through completely. :)

    Also, I've heard some symptoms of thyroid insufficiency (which often accompanies adrenal insufficiency) are thinning hair (on the head) and thinning eyebrows. One other symptom can be high cholesterol levels (which I think you mentioned you have). My own cholesterol levels decreased fairly dramatically after I started treating my thyroid with Armour. Today I take Standard Process thyroid supplement.

    One last item: I did try doing a saliva test at one point to test my adrenal function. It didn't work out, as putting the cotton balls in my mouth would give me an instant headache. I deduced from this experience that they were likely not using organic cotton. I've also heard that cotton is a very heavily sprayed crop.

    Anyway, after getting these headaches, and realizing it was shocking my system, I deduced that the test results would not necessarily be accurate because of these reactions. My doctor at the time agreed, and we proceeded to do a trial run of Cortef. It turned out to be a major turning point for me and increased my overall functionality from about 4% up to around 10%.

    I currently function at about 25%. Some of the major things that helped me go from 10% to 25% were my atlas profilax experience, extracting a nonsymtomatic root-canaled tooth, doing the methylation cycle block treatment, and a few other things. From my own experience, I've come to believe that most of us can help ourselves at least incrementally by doing a lot of investigative work and following through the best we can.

    For me, dealing with my health issues has become more an exercise in controlling problems than necessarily expecting to solve them. But I never give up hope. And I always try to keep in mind that our journeys along the way are more imporant than the outcome.

    Thanks Grammy and all others who contributed to this thread. A lot of good insights to be had from this insightful discussion.

  15. gapsych

    gapsych New Member

    Your last post is so unlike you or I should say from your usual post. Something about your tone.

    You are one of the first to come alone with your calming advice and comfort. Many people look forward to hearing your perspective on things.

    You said that you are glad you did not call someone because you did not want to deal with them if it turned out you didn't die. Think of someone you know in the same situation. You would help out. But I do not think that is exactly what you are saying and I can not quite put my finger on it. Perhaps the fact that you do not want to deal with anyone.

    You say your alarms do not work anymore. Do you think it is possible that your body and mind are doing this to kind of pull back from your situation. Disassociation? People with PTSD often do this during stressful mental or physical experiences. I am not saying this is what you have, I am not a doctor. But I sometimes wonder if we deal with a type of PTSD from the relentless pain and fatigue of this DD, and it makes a weird kind of sense that this happens.

    Someone else mentioned something similar tonigh. In my worse pain, I climb into bed and am between being awake and asleep. I don't think it is depression but dissociation. During this, I just am. Existing but not feeling.

    You are a very accepting person of life and of other people with great insight and this may just be your way of dealing with things by accepting them.

    But something is nagging at me about what you are saying.

    Maybe it is the shock of finding out just how much you have had to contend with. Maybe it is because my brain like Elvis has left the building,it is very late and it's been a mentally and physically challenging day.

    Maybe I am identifying with you as when I go into this state, I think anything could happen and it would not bother me and projecting that on to you. I don't think it is quite the same for you but projection is projection.

    I hope this does not offend you. That is not my intention.

    As you said there are no solid answers. We are in limbo. Limbo stinks.

    The following would be in very small letters. (Next time call someone?) the small letters because while this is what I would like to see you do, the bottom line is what you choose to do is important. This is about you.

    I hope this makes sense. If it doesn't it doesn't. I am just a ramblin rose tonight and a rose by any other name would be just as rambling.

    I just want you to know that I care.

    [This Message was Edited on 01/13/2009]
  16. getwellgirl

    getwellgirl New Member

    I just wanted to pass on what I have learned about attacks of sweating with coldness after, severe weakness and low bp. These are all symptoms of LOW ALDOSTERONE. The adrenals also deal with sodium balance as well as maintaining glucose levels.

    If you are having problems with maintaining your blood sugar despite a good low carb diet with plenty of protein and good fats then its highly likely you have too low cortisol.

    However if you have low bp, weakness, difficulty with keeping upright, sweating then you have too low aldosterone which means you have insufficient sodium in your cells. You might well also have insufficient potassium.

    The answer to the latter problem is firstly to try taking 1/2 teaspoon sea salt in lots of water several times a day. You can feel the benefits quite quickly especially in the winter. However depending on how severe the situation is this might be all you need but it is highly likely you would benefit from fludrocortisone in a dose between 0.5mcg-2 mcg daily. You can feel better within an hour if this is what your body needs.

    Recently I needed fludro to get me over an adrenal crash. I had got dehydrated over many months but hadn't really needed it so I took Fludro for about 5 weeks but I don't need it anymore but maybe in the summer I will.

    Unfortunately general doctors know sweet f.... a... about the adrenals. They only know about the extremes, ie Cushings which is too much or Addisons the final stage where only 10% of function remains. However many of us are affected because our HPA axis doesn't work so their ACTH test won't work if this is where the problem is. Your adrenals can respond magnificiently to the ACTH however they don't work on a day to day basis cos the messages don't get through from the Hypothalmas to the Pituitary.

    The best thing is to get informed and read as much as you can about adrenal insufficiency and adrenal fatigue. There is loads of info on the Net. If you can find an alternative type doctor you are more likely to get some treatment.

    I am very fortunate in that Dr Myhill is my CFS doctor and she was happy to give me Prednisolone when she heard my history and saw my 24 hour saliva tests and by the way these are best test to see what is happening at cellular level with regard to the adrenals.

    Please don't rely on why traditional doctors tell you with regard to the adrenals and their treatment, they are completely ignorant about them.

  17. Rafiki

    Rafiki New Member

    I continue to be amazed by the generosity shown. I know what effort costs each of you. I am also very impressed with the amount of information one can get by posing a simple question to the members of this board. It's remarkable.

    I was a wee bit under the weather the last couple of days but I have managed it well and will be back up and swinging tomorrow or the next day.

    I am looking forward to replying to each of you.

    peace out,
  18. pam_d

    pam_d New Member

    I admit I don't know one whit about Addison's disease, or adrenal issues, but I saw your name and just wanted to say Hello to a good, old friend! From what I'm reading, you may be on to something with all your research into Addison's, adrenal disease; at least it gives you a lot to bring to the table next time you see a doctor. I hope you get some answers and some relief!

    Me, I'm hanging in there---this past Monday, I celebrated 6 months since my bone marrow transplant, and doing great. I've been cleared to return to working, a good few months ahead of schedule. I honestly feel so good, I look back and it doesn't even seem like it happened. Of course there's no guarantee it will last, but I'll continue to be hopeful!

    Hope you find out that all this info on Addison's, etc. is helpful to you! I don't get to this board often anymore, but I check in from time to time and it's always good to see your name.

    Take care, Friend---

  19. gapsych

    gapsych New Member

    Glad to see you have bounced back a bit.

    You do not have to address each of us individually as for me and I suspect others I think hearing that you are better is all we need.

    Pam- So glad you posted. Great to hear good news from you!!

    This thread has been so interesting.


  20. Rafiki

    Rafiki New Member

    Uhm... yeah, I guess so. Doesn't everyone?!

    This will be a quickie because I have been given really good advice from some brilliant people and I'm actually doing what I need to do to prevent things going from not good, to bad, to worse.

    To tell the truth, I can't quite figure out how to explain to my doc that this has been happening and I have not told her. I'm laughing but I feel like a bit of an idiot! I think few people can understand how much one simply learns to accept as part of the drill with chronic illness. I mean, seriously, I wouldn't believe that someone could experience these "spells" and not be dialing 911 as soon as they got their face off the floor.

    Re not wanting to call people because I would have to deal with them. I mean in a purely physical sense. You know, you feel way to sick to have anyone touch you or move you or speak or expect you to speak. It's all one can do to just get from one moment to the next in a very, very basic way.

    Ok, yes, I'm beginning to see that this is not normal! LOL! One of my problems is that my doctor sees me as a smart, capable woman - I am, about most things, REALLY - and usually asks my advice about this or that when I see her which I have not done in nearly two years because it's too much work.

    Oh dear, I just sound crazier and crazier! I do not know how to do this. I do not know how to be a patient, at all!

    But, I have learned a lot over the past few days from all of you and I see myself a little more clearly now. I'm astonished at what I see but I am also laughing at it. I really do make me laugh but I am taking this a little more seriously than I had. You see, what you don't know is that I'm Irish and, therefore, invincible. That's the way it works, isn't it?!

    You're a really fantastic bunch of people and you have actually gotten through to me which, as friends and family can attest, is not always easy.

    I'm fine. I'm actually on top of this, finally. I have you to thank. Who knows just how much I am thanking you for -- we will not find out because I'm mending my sorry ways.

    I'm very moved.