Back from 5 day hospital stay.. (adrenals, cortisone etc)

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Nov 1, 2008.

  1. Wolverine

    Wolverine Member

    Well, I was just admitted finally to hosp for 5 days. They initially only planned to keep me overnight or 2 days after going through their tests, but ended up longer due to various factors.

    They were trying to find out why my insulin tolerance test showed adrenal insufficiency, why i get no stress response. Because im very thin and have severe digestive problems, they thought it might be nutritional (like I might just not be eating enough) that caused the problem. I knew this wasn't the right area to be looking. In fact nearly everything they did I was sure wasn't going to show much.

    As thought, almost every test came back normal. They tested all the major nutrients like B12, folate, calcium, magnesium, other various vitamins etc. Of course as i have a decent diet and take alot of good supps, all these levels were great, surpisingly to them. The only thing is that my vitamin D was at the very bottom end of the normal scale, almost defficient. Suprised because i take calcium with D in it, and also 1000iu of D daily. They said to increase the D to 2000. I know D is important, but it cannot be causing the dread I have been going through.

    I ended up being in longer because at the mo i have a severe toe infection, which has been there for about 2 months. I can barely walk on it and its been bleeding the whole time. Very swollen etc. I really havent cared about this no matter how painful and bleeding, because my body has just been SO wrecked from this whole adrenal thing. in the end they seemed more interested in the toe than my major problem i came in for. They put me on a few doses of IV antibiotics (Cephazoline) which began to work on the toe, then, on my last day (yesterday) when i was due to be discharged, they put me on one of the strongest oral anti-biotics available - Moxyfloxacin. I thought that'd be fine.. but after about an hour of taking it, i had DREADFUL bowel pain, began to get really nauseous, much weaker and shakier, it completely screwed me. At this point i was kicked out of my room for the next patient who seemed young, strong and healthy, joking away with his family.

    I was put in a crappy side room on an uncomfortable physio bed because i couldnt be picked up for another 6 hours. I was so weak I could barely get on my feet, and the act of sitting up made me feel like vomiting every time, and was SO dizzy. I felt the horrible feeling of when cortisone is wearing off, and i had to have SO many doses just to get me through that afternoon. By last night when i finally went through the ordeal of getting taken home, I ended up at 75mg of hydrocortisone for the day. Even though i had so much, each time i felt my heart start going weak and very fast, and had to have more to settle it down. That one dose of antibiotic sent my body into chaos. It's sposed to be "amazing" they say, kills any bug in the body - one of the broadest spectrum. Well I personally think it's strong enough to kill PEOPLE its such a good antibiotic. o_O There's no way im taking another dose, i'll go back to keflex.

    I was happy to make it home, but cried after I finally got here as I had to literally crawl up our ten steps with shaking arms and legs to get into our appartment, and crawl to the bed.

    I was / am so dissapointed that they can't offer me any more help. I literally feel like my body is falling apart, my legs and arms are so weak all the time. They just said "well as the tests are all normal, it's just your chronic fatigue and you'll have to manage it, get into a routine" -_- PLEASE. I HAD a routine before all this adrenal stuff started, I would drive, shop, rest, cook, rest, clean, rest, shower, etc. As far as CFS goes, i was managing before this horrible last 2 months.

    I have no idea why i've gone down so hard (well im assuming its the adrenal insufficiency), but then again I thought these higher doses of cortisone would help me function much better than they have. Im on approx 40mg a day, and days like yesterday, nearly up to 80mg. I feel so weird if i have that much. Some 'good' days i've managed to keep it down to 30mg, but that is the VERY lowest. As i've said before, I don't know how anyone can be on only 10 or 15mg a day. I've tried to space out lower doses, but it just gets to a point where my heart starts beating in this really horribly uncomfortable way, very weak and rapid.. and I just know its from not enough cortisol. So i take 5 or 10mg more, and within about 45minutes, the weak, rapid palps slow right down. therefore, how am i meant to lower the dose? I've been on it one month now. Im still bed bound almost all day every day. The cortisone is just helping me not to have a massive crash, not much else. I know i don't metabolize drugs well, and whatever small window of energy i get from the cort, its only at night time, after i've had doses all day.

    I've been wondering if i took a longer acting cortisone like prednisone, at lower doses, if my body only had to process that, then the effect lasted longer.. I could possibly lower the dose of the total for the day. I know its synthetic and HC is sposed to be matched to the bodies natural cortisol, but a sh*t load of good it's doing me right now hey?

    My body feels completely wrecked today after that antibiotic yesterday. I was sad that they made me go home feeling so terrible. Today I have a massive flare of fibro, every single muscle and joint is killing me, I feel just SO sick all over, like my body is completely toxic. It's possible that not having any of my supps for 5 days contributed, but i thought i'd only be in overnight.

    Oh also, i mentioned to them I've had a weird dizziness, like something swimming around in my head for the past 3 months, with a gradually increasingly loud ringing in my left ear (slightly on the right), but they pretty much just looked blankly didn't check anything in that area.

    I'm not giving up, but i can't see the light at the end of this awful tunnel im going through, it's like one long nightmare. So many days I feel like death is just around the corner.
  2. hermitlady

    hermitlady Member

    Man, you've been thru he!! lately...I feel so bad for you. I've been wiped out too, but nothing compared to you. I know how horrible and hopeless it feels when nothing helps make you feel better.

    I'm still in the midst of getting adrenal testing...waiting for approvals and paperwork right now. Did you ever have an MRI or CT scan of your adrenals? That's one of the next things I have to do.

    I just wanted to say hello and wish you better days ahead...I could use some better days too, that's for sure. I just can't understand why the "great" world of medicine cannot figure out a way to diagnose and treat our conditions. Maybe someday, hopefully SOON.

    Take care of yourself....xxxooo Hermit
  3. Wolverine

    Wolverine Member

    Thanks. Yes sure have been through hell. Yeah it can feel really hopeless at times. What gets me through is when I have those small windows of feeling pretty good, even if they are very small, it shows I *can* at least feel good. Now to just work out how to make that last longer!

    I have an appointment in a couple of weeks for a pituitary MRI, not adrenals. I will ask if they can do adrenals at the same time, but i strongly doubt it. They seem so resistant to do tests. They look at the simple, basic bloodwork and say its all normal, feeling no need to do much further.

    Thanks for the well wishes.. hope you improve soon too. ~C. x
  4. jole

    jole Member

    No one should have to go through all that testing for nothing. It's just not right that docs don't fight to find the cause of the problem anymore...but they'd run the tests and made their money! (Sorry, I don't mean to sound bitter...I know there are still a "few" good docs out there.)

    Was this all done through a specialist or just your PCP? I hope you had ins to cover the cost.

    I did just have a thought though (and that's rare these days!). You stated that this started getting worse about 2 months ago, right? And you also had the infected toe for about the same amount of time? Perhaps the two are in fact connected, which means they were right in giving you the Moxyfloxacin...except that you had a really bad reaction to it.

    I can't take antibiotics anymore without reactions, and they didn't bother me before the FM.

    BUT why did they send you home soooo sick? That is definitely inhumane, and even dogs get treated better than that!! I am so sorry that they had to be so totally insensitive to your health issues. It would seem if they knew of the reaction there could be a case against them....wonder if it was even charted, since you were dismissed? Oh, the misconduct of so many these days...where has honesty and compassion gone?

    I wish you the very best, and hope you can find a doc that will really work for you! Love***Jole***
  5. deb_46

    deb_46 New Member

    I would inquire into whether or not you would do better with Medrol as it is longer lasting and may help to keep you more stable. Are you on Florinef?? Many with AI need it as well as cortisone.

    I feel for you, I have AI as well and it is very difficult to deal with. I'm better than I was but still unable to work and it's been nearly five years now. I've been hospitalized with adrenal crisis twice in the past year.

    Good luck, I hope you get on the right path soon.

  6. Wolverine

    Wolverine Member

    Jole: Yeah I didn't mind going through the testing, they wanted it for their own peace of mind and as most of it was just blood tests it wasnt too hard. I really wish they'd do more specific tests though, blood tests are so useless often in these situations.

    I didn't have to pay for it all, in Australia if you are on disability as I am, you get everything covered by the govt. I wouldn't have paid for the tests they did as I knew it wouldn't show alot.

    As for the infection.. yeah it sort of started when my huge crashes started, but i don't think the're related. The past few months before that i had already lost a fair amount of my usual stamina etc and was gradually going down since the end of last year. Thats when i first started feeling the real adrenal insufficient symptoms, and got onto licorice root. That really helped for a few months, then it wasnt enough till i finally crashed all out in August and needed hydrocortisone. However, that single dose of moxyflox is why i was so sick and required huge doses of cort to get through it (mind you they still only gave me the reccommended 30mg daily dose that day, i had to go to my private stash i hid from them to get through). Im now back on Cephalexin as the first few days they had me on IV cephazoline (similar) which started clearing it up. I've no idea why they didnt just give me keflex in the first place on being sent home. It makes me a little sick, but NOTHING compared to the moxy. I have to take them till this infection is cleared.. they were considering taking off my toenail and cutting away tissue in hospital it looked that bad. I was insistant to just try antibiotics for a while first before such drastic measures. It's feeling alot better now and going down, I think it will be fine, i just have to continue the keflex till its all gone, then do a liver detox and probiotics afterward.

    I don't know. I guess they just figured i was "CFS sick" as usual so I'd be like that any time.. so off i went home. And it was a terrible trip home even tho its not far. just travelling at the moment is extremely overwhelming. There isn't much compassion these days. They go through med school and it is just a high class profession to most, they put this cushiony barrier around them ignoring the suffering they see (or dont). There is a few great ones among them though.

    Deb: Oh you have AI too? five years!? Wow. did you have CFS and so on first or did your probs all start with AI? Sad to hear you've had 2 crisis :( Do you carry solu-cortef etc, and did you use them during the crisis? What brought the crisis' on? That is the main thing I am terrified of with this problem, is having a crisis. Because it's so early for me (one month now on cortisone), I sometimes can't tell what symptoms are from not enough cortisol or from something else. Usually a little extra dose helps, if I feel like im 'slipping' to a crash etc. Also, the way the ER here makes people just wait around half dying in the hallways because the're so busy, i'd be scared the staff there wouldnt react in time for an adrenal crisis. I want to get some solu cortef injections asap just in case.

    Do you use Medrol then? How long does one dose last? They say hydrocortisone lasts about 4-6 hours. For me it *sometimes* works for 4 hours, mostly only about 2 or 3 though.. im dosing very frequently through the day and its a huge rollercoaster. I have windows of shaking and anxiety / weakness, and then small windows of finally being able to relax and feel a bit better, on the rare occasions that it kicks in. It seems different times of the day etc it works differently.

    This is a reason im considering trying a longer acting one. I know some people use prednisone instead of HC, or even dexamethasone which lasts ages and is super potent. I know the synthetics dont have much mineralocorticoid properties though, making it more likely that one would need florinef. I wonder if i need it, but apparently at the moment they say my aldosterone blood levels are OK. I must still be producing. However, I can never stand very long, and am STILL getting OI / postural drops / tachy on standing most of the day. Im drinking salt water and taking a little licorice still which seems to help. Im guessing its a case of working out the right type of cort and dose for ones self, which may take ages.

    It's really difficult to deal with, as I honestly thoguht that once i started any form of cortisone, i would just have my life back to a degree, as any time in the past ive tried it, it's given me a super energy and ability to 'go all day'. This was some years ago though, on single random doses, when i didnt have AI. I guess im alot worse now (couldnt get much worse), and hopefully it will just take time.

    Thanks again.

  7. Wolverine

    Wolverine Member

    I'm not actually the one that's wanting to lower my dose, it's the ENDO's. I've told them I am only just getting by on 40mg a day, and often 45+, and they seem SO concerned about that and are trying to force me to take a maximum of 30mg a day. In hosp the whole time after the first day in there, they 'charted' my dose to 15mg am, 10mg 2pm, and 5mg 8pm. Well of course I had my own stash and had to dose between those doses they gave me, I literally felt all the horrible low cortisol symptoms if i didn't.

    Yes, when i went to hospital for not taking it 'as prescribed', it was because i had a big crash. I think that is because my adrenals shut down REAL quick once starting HC. However, unlike some others, I had a decent baseline blood level of cortisol to begin with (likely because of the licorice), so I thought adding a small dose to what i was doing could only be helpful. It wasn't like I had no adrenal function at all to begin with, and most people with a semi normal baseline level wouldn't likely get that fast of a shut down as I did. I just must be so sensitive that within 4-5 days of beggning cort at low doses my glands totally shut down and expected the full dose externally. So many other people begin at 5-10mg a day or less that do have some adrenal function, that I didn't think it would matter, and for most it doesn't, but is rather very helpful instead.

    Diabetic neuropathy?? lol i certainly hope not! I have no diabetes thus far. They did twice daily BSL levels in hosp, and it was always in the normal range or slightly hypo. The toe infection however was of course a weird one. However as mentioned, i had all the symptoms of adrenal insufficiency quite a while before the infection started. It does make sense though that the slow healing of it has something to do with the adrenal function etc.

    I do take the cort regularly to a point. I just cant take it as they prescribe, because 6 hours between each dose and i would be on the floor in weak shaking mess. It must process out of my body long before that. I generally keep to around 40mg a day. Very stressful days like the ABX reaction, needs almost double that as mentioned. But it's not like im taking 20mg one day, 50 the next, 80 the next, etc. Its about 40-45 most days, and only if I have a major stress is it anywhere near those high levels. There's only been a very few days out of the month that ive been able to take only 30mg. But the only reason I have even tried to do that, is because they seem SO worried and insistant that I only take 30. I think they think i'll get cushings and all the other lovely long term high dose effects. Of course it's early days for me and everyone with AI has to work out the dose and regime and even type of steroid that works best. I hope to be able to keep on just HC, but its such a rollercoaster at the moment.

    I am really looking forward to trying Duocort, the dual release hydrocortisone that is coming out. That way we can keep the natural HC, but with a single daily dose. Should be interesting to see the results when it finally comes out (no idea when).

    Thanks.. hope you're doing well too.
    [This Message was Edited on 11/04/2008]
  8. Rosiebud

    Rosiebud New Member

    I was really hoping when I saw your post that you had at last been admitted to hospital and treated DECENTLY but I see you have not. Am I surprised, No I'm not but I'm very sorry for you.

    I do know that they have carried out surveys and found that 'nurses' have the lowest understanding, if any, of people with our illness. They believe its in our heads and I've experienced their ignorance myself on a few occassions.

    However, I've never been as sick as you are.

    Can you not contact your politician - MP over here - or some group that could maybe get you the help you so desperately need.

    The dizziness could be an inner ear infection - my son had it and it took months to clear up - I'm sorry I cant remember the name.

    Please take care of yourself Wolf.

  9. Wolverine

    Wolverine Member

    Heya. No! I wish! :) Copies of Jefferies book are like rare gold bars. I think most places online sell it for about $130 plus as far as i've seen. I know amazon etc does. I did find the original publishers' site which has it for about $45 which i don't get, but will attempt to order it from there. I'm hanging to read that book 5 times cover to cover.

    I know.. its stupid. As you have and others have done, using more in the beggining seems sometimes neccessary to i guess stabilize ones self. This is why I have been 'self dosing' to a degree. If I only did 'what they say' strictly, I'd be half collapsing all the time, possibly going to ER again! I know that when I take an extra dose it settles things. The main reason i'd want to go to a longer acting drug is to make it possible to stay at the lower dose, which would last longer, therefore not requiring so many doses.

    Wow so even on full doses of cortisone you notice a difference from Metagenics Adrenogen? I thought people with very mild adrenal problems usually felt the benefit of glandulars, and once go onto HC etc, feel a big difference. I guess perhaps the glandulars help build gland tissue. From what i've read theres so many different ones people use and or reccommend. I don't know what the difference would be between the brands. Some say this one works great, but that other brand doesnt do anything. Im not sure why this is.

    That sux that you had pneumonia etc! You would have really had to be on a higher dose of cort for that right? How much did you have to go up by? Sorry bout the pain etc too. Not sure what would be causing all that. I tried florinef years ago but it gave me strong headaches and liver pangs, so i quit after a few days. They so far haven't said i need florinef.. so im not sure if i do or not. Did you go onto florinef soon as u started cort aswell? Or was it a bit later that they added it?

    Hopefully cutting back on the florinef will help ur swelling. Swelling of course is often a sign of too much corticosteroid. I have *never* had swelling in my life. Im so thin and underweight / do not retain water well etc, so i've always been the opposite. I guess I may experience it some time on cort replacement, who knows.

    I just phoned a well known compounding pharmacist in my area, and he thinks DHEA optimization is important in adrenal probs. Do you take it at all? I have been taking small amounts but dont tolerate high doses. He also said they can make up longer acting hydrocortisone capsule (controlled release he says), so i may try those for a while. I think ill use 5mg HC and a 10mg sustained release cap in the morning and see how long that lasts. Perhaps i'll be able to lower my dose that way. That kind of mimics how duocort will work anyway. Duocort has a drug designation with Orphan, but is still not available. Not sure how long it will take but have a feeling its going to be good, so hopefully soon.

    Take care. ~C.

    Rosie: Yeah none of them really understand it very well. It's just not common enough and is so complex, isn't taught in med school etc. If they don't understand it they often cant be bothered either unfortunately. I wasnt mistreated in hospital they were OK, just not looking in the right places. Oh yeh the day i went home sick wasn't good thats all.

    I really dont have the energy to contact politicians etc about it, it's too difficult, and i really can't 'fight' right now. I'm just going to concentrate on trying to get some energy back and work out this adrenal dosing etc.

    Yeah the ear thing is bad.. im taking strong antibiotics though and it's never gone away yet, so im not sure that its just an ear infection. Maybe the MRI im having soon will show something (though i hope not!). Thanks.
  10. SnooZQ

    SnooZQ New Member

    Hi Wolverine,

    I was able to obtain the Jeffries book through Inter-Library Loan. My local public library did not own a copy, however they used a national library database to find a copy elsewhere in the country for me. I only got to keep the book for a few weeks, and there was a small charge ( about $2) involved for postage. However the book is not extremely technical, so I was able to get through it in the time alloted.

    I live in the USA & am not entirely sure that your libraries down under offer this service, however I've seen Brisbane & Adelaide libraries listen on WorldCat, an online library interloan service -- suggesting that interlib loan does exist in Oz.

    So, that's one more avenue you can pursue if you like.

    Best wishes.
  11. Wolverine

    Wolverine Member

    Yeah i see. Im not sure if it would be available here in Aus. I'll look into it and make some enquiries.

    Thanks! Sounds good if it is an option.


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