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Weaning Hydrocortisone (aka Cortef)

Discussion in 'General ME/CFS Discussion' started by KimmyB, Jul 1, 2015.

  1. KimmyB

    KimmyB

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    Hey folks...

    Just wondering if anyone out there has any particular knowledge about Hydrocortisone and the weaning process?

    I've been working to get off of HC since March (I have been on 25mg/daily since September, so 8~ months based on a flat-line saliva cortisol test result) and have hit a bit of a speed bump lately. I've been dropping 2.5mg every 2-3 weeks, and I'm at 10mg now. But I'm having significant hair loss and intermittent body "itching" (it's like it's under my skin, almost).

    I've been six for 6.5 years with nobody able to really ID the underlying cause; the suspicion is now Lyme Disease or something else infectious/parasitic/viral, which I'm being tested for currently. Results should be back to me in the next 2-3 weeks for a whole raft of possible infections, etc.

    As much as I want to be off this stupid medication and wish I'd never agreed to go on it in the first place, it helped me tremendously while on it... and I'm wondering if perhaps I should go back up to about 17.5mg (the last dose before things started to go haywire) to stop the hair loss, itching and other symptoms.

    OR, am I better off to continue trying to get off this stuff? I worry about long-term use of this drug and its potential permanent damage. I also know it's h*ll to get off of any steroid, especially if the adrenals aren't strong... and I don't think mine are, given the underlying stress this illness is undoubtedly causing.

    Does anyone have thoughts or advice?
     
  2. KimmyB

    KimmyB

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    @Ema Not sure if you're still around, but I see from other threads that you may be someone to talk to about this!
     
  3. Ema

    Ema Senior Member

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    At 10 mg, you should be making some of your own cortisol now. Can you get an 8am serum cortisol and ACTH test to see what you are producing? I would do this before taking any HC for that day. Your ACTH should be at the top of the range or even over if your brain is correctly signaling your adrenals. Your cortisol should be mid range. If your cortisol is low and ACTH is low, that might be a sign to abandon the taper until Lyme and other infections are treated.

    I also think you may be tapering too slowly and making yourself miserable in the no man's land where your own adrenals aren't up to full speed yet. I dropped 2.5 mg every 5-7 days provided no major symptoms. Some fatigue and muscle pain is to be expected.

    If it was me, I'd carry on with the taper (provided no crisis type symptoms) and see how things work out over the next few months. You can always go back on if you find things are worse.

    I would also think about using licorice as a bridge during your wean if your BP is not high. I like the Metagenics licorice plus. Grapefruit juice is also an option but interacts with many meds which may be a concern for you.

    Have you tried an antihistamine for the itching?

    Hair loss is often tied to stress and a taper is stressful. Biotin (drops) is the only thing I know of that may help. It's good for Lyme too.

    Good luck! And don't feel bad if the taper doesn't work. It just might not be the right time yet but that doesn't mean it won't be the right time in the future.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    I just wanted to add that I use Nutricology Licorice Solid extract. If you like the taste of licorice it's a treat.
     
  5. KimmyB

    KimmyB

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    @Ema Can I give you a hug? Because, seriously, you are the first person I've come across who seems to have any clue at all about this! HC seems to be an utter mystery to everyone... and there's virtually no information on the web about it either.

    I don't know if I can get the serum cortisol and ACTH test... I will try. I'm in Canada, so we don't have the option to purchase our own testing. You have to get a doctor to agree and give you a requisition or you're hooped. I have to juggle a couple of GPs to get all of the testing I need on an ongoing basis so I'm never asking one for too many things. It's ludicrous, truly.

    OKAY! Okay. This is what I've been trying to figure out and there's NO information to explain it anywhere. At what point do the adrenals start producing a bit of cortisol on their own? I have wondered many times if maybe this is the case... but the only thing I ever seem to come up with in researching online is that I'm probably too low in cortisol.

    No... it's so hard to explain but it's not really "itching". It's actually more like nerve endings firing off, like tiny zaps that last like itches. They bounce around my body... it'll be at my scalp, then my arm, then my chin, then my leg, then my arm again, and so on. It's very different than actual itching. My Naturopath said it sounds neurological, which it could very well be. Given that the HC screws with the HPA-Axis, could it be the fault of the HC wean?

    The itching subsided (mostly) when I added a bit of Adrenal Cortex Extract a few days ago. The hair loss slowed, but then for no reason, today, I lost a ton more hair than I did yesterday. Inexplicable. I also had more heart pounding than usual.

    So that's another question for you: what is your thought on taking ACE while weaning HC? My ND suggested it and I was willing to try anything possible to stop the hair loss. She suggested only 150mg per day, with an increase up to 300mg per day only on the days I drop the HC dose. Like I said, the ACE appears to be helping somewhat... maybe. It's so hard to tell anymore, even when I only do one thing at a time.

    I should mention, too, that I put on probably 5 pounds of water weight after the drop from 17.5mg to 15mg of HC.

    I had also started zinc and selenium at that time, both of which are known to lower cortisol, and that seems to have been the perfect storm that started the hair loss. I stopped z & s and the loss slowed... then I added a multi-vitamin (on advice of my ND) containing s & z, and the loss & itching started again. Stopped it, and it slowed. This is what's making me worry that my cortisol is too low to keep weaning.

    I fear putting on more water, and I fear the hair loss kicking up even more. But based on what you're saying, I'm probably on too small a dose of HC and need to keep reducing so my body can do its own thing?

    @minkeygirl How much licorice do you take and when do you take it?
     
  6. Wayne

    Wayne Senior Member

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    Hi @KimmyB,

    The average person produces about 40 mg. of cortisol per day. So if you never went above 25 mg/day, it's unlikely your adrenals ever shut down completely. This is the reason that Dr. Jeffries, who made a career out of researching low-dose hydrocortisone supplementation, generally had his patients on doses of cortisol of 20-30 mg/day.

    I've taken about 20 mg of Cortef / day for over 15 years now, and don't feel I've experienced any negative side effects. As a test, I tried at one time to reduce my amount, but even after several weeks could not function as well on 15 mg/day as I was on 20 mg--so I stopped my taper. My understanding is that if you don't need supplementation, then you won't notice negative effects from withdrawing from it.

    I personally think my adrenals wore down from the stress of long-term infections in my body, and that as long as that stress continues--which I believe it does from Lyme--I will likely continue to need it. My suggestion would be to consider whether this is the right time for you to taper, or if you should perhaps wait until you get some results back on any infections your body may be dealing with.

    Also, adrenal function is connected with thyroid function, and I wonder if your hair loss has more to do with thyroid function than your withdrawing from Cortef per se. -- Just a few thoughts. Best to you as you work on figuring this all out.
     
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    @KimmyB my NP had me start at 1/8 tsp in the morning then I went to 1/4 tsp. Am

    I had stopped it when I ran out and restated the other day. Like a dumb ass I just went for the 1/4 tsp and my BP mad HR shot up.

    Look around for pricing. I found it for $21 on eBay awhile back.

    There is another brand Wise Woman but it's a lot more expensive.
     
  8. minkeygirl

    minkeygirl But I Look So Good.

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    @Wayne in 95 I was diagnosed with a non-existent adrenal disease by a hot shot endocrinologist. I was put on 7 mgs cortef.

    While on it I got a virus that I never recovered from. Hello ME/CFS.

    Had my adrenals been supported during stress vs shut down I may not be here posting.
     
  9. Ema

    Ema Senior Member

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    Cortisol is very much a Goldilocks hormone. Both too much or too little are detrimental to immune function.

    It is highly unlikely that a physiological dose of cortisol would result in immune suppression. Not having enough cortisol will make you completely unable to fight an infection though as will pharmacological, high doses such as used for autoimmune diseases.
     
  10. Ema

    Ema Senior Member

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    It's not absolutely necessary. It just made me feel better to know that my adrenals were kicking back in when I saw it on the lab report.

    Conversely, if I'd seen that they weren't kicking in, I wouldn't have carried on with the wean.

    I disagree a little that there will be no symptoms of a wean if one is "ready". I think there will always be symptoms but they shouldn't be intolerable or include a lot of nausea, dizziness or diarrhea, all of which can signal adrenal crisis.

    It's probably different for everyone. Under 15mg there's no question that you're producing some cortisol also.

    Yes, that does sound neurological. Are you taking anything to influence GABA?

    Anything is possible but it could also just be coincidence.

    How is your blood sugar? Is it stable?

    This does all sound hypothyroid. But I wouldn't push thyroid during a cortisol wean.

    Are you keeping up on your electrolytes? Especially sea salt?

    I think it's just getting more cortisol from another source.

    Licorice and grapefruit keep your cortisol from breaking down as fast. They don't add to it.

    Maybe if you have high cortisol it can help lower it. But there's no evidence that it lowers cortisol if it is already low.

    Same with DHEA...which can also be helpful during a cortisol wean if you test low.
     
  11. minkeygirl

    minkeygirl But I Look So Good.

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    I've been looking into glandulars and I just read about something Called Drenamine by standard process.

    It's an adrenal support. Don't know much else about it at this point but the company is good.
     
  12. KimmyB

    KimmyB

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    My thyroid is producing hormone (on the very low end of "normal", whatever that means really) but it doesn't seem to be getting into my cells as I still have a ton of hypo symptoms. I was supplementing thyroid hormone from October until March, and my body responded quite badly.

    I've wondered that too... but my hair wasn't falling out in the fall (nor was I having these other weird symptoms), and my thyroid numbers were identical to what they are now. Identical. SO... could it be that the thyroid is hindered in some way during this wean? Is that kind of what you're suggesting @Wayne?

    Hi @Ema! (P.S. Love the lab in your avatar, I have a charcoal lab!)

    I haven't had any nausea or dizziness. Diarrhea, yes... but I can't necessarily blame that on the wean. Here's why: my iron has been very low and doesn't want to raise, so I'm on quite a bit of iron every day which makes my already bad constipation problem worse (that's one of the hypo symptoms I have). To counter the iron, I have to take 2000mg of Vitamin C and 600mg of Magnesium Citrate just to make sure my bowels go. This induces diarrhea. But if I reduce the Mag Cit or Vitamin C by even a fraction, I'm completely constipated. There is no happy medium whatsoever. So yes, I do have diarrhea but... I tend to think it's the mag and Vit C as opposed to the wean. (Now, I will say, the diarrhea has been worse in the past month... so maybe it IS the wean. But how can I get a real sense of that? Should I stop the mag and VItamin C and iron and see what happens to my bowels? Then again, last week I reduced the mag one day to 300mg from 600mg... boom, total constipation the next day.)

    Would I be right to assume that if I was having an adrenal crisis, I couldn't induce constipation like this?

    Right. BUT because I'm currently supplementing 10mg of HC, am I potentially caught in that no-man's land you mentioned... where my adrenals sense the supplemented HC and aren't doing their own full output (to whatever level they may be capable right now) because of that? Could that by why I've felt so crappy lately?

    I guess the bottom line is that I want to get off of HC... I don't think I needed it in the first place, honestly... but I'm scared about what might happen if I do go below 10mg. The hair loss is terrifying (I work in a very public job, I do on-camera work, and losing my hair would affect my ability to make a living... so it's not just a vanity thing for me, it's pretty seriously related to my income) and I don't want to exacerbate the hair loss. BUT... if the no-man's land scenario is potentially why I am having these symptoms right now, could further weaning possibly help make those symptoms go away?

    No, I'm not. What would influence GABA, other than taking straight GABA?

    Yes ma'am, sure is.

    Oh no, definitely no thyroid meds for me at the moment. My gland works fine but the hormones it's producing don't seem to be converting and/or getting into the cells where they're supposed to be going. (Because of the previously mentioned underlying whatever-it-is... Lyme or something else, which I'm waiting for test results on currently.) When I was on thyroid meds between October and March, my body essentially threw a hissy fit. I had a ton of strange symptoms come up out of nowhere, most notably, I had such intense heart pounding that I couldn't walk from my couch to the bathroom without feeling out of breath and like I had just run 10 flights of stairs. It went away as soon as I got off of the thyroid meds... my body said a loud and clear, "NO" to supplementing thyroid at this time.

    Absolutely up on my electrolytes, especially sea salt! I supplement it daily. I also just increased my potassium.

    The ACE I mentioned earlier is a glandular. As I understand it, if you're going to supplement adrenal glandulars, you're best to take ones that contain ONLY the Adrenal Cortex and nothing else so that you're not taking in additional adrenaline and other things that could be counter-productive.
     
  13. drob31

    drob31 Senior Member

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    I would say that adding pregenelone slowly along with licorice root (during your lows), you could use that as you slowly wean.

    Preg would provide the raw ingredients. You could back fill your pathways with DHEA a little bit, so that it doesn't convert to DHEA, and converts mainly to progesterone > cortisol, and licorice root will allow it to stay active longer in the body. That would be my taper strategy if I had to taper off.


    25 mg preg in the morning, along with 10 mg dhea (you could go lower or higher as needed).
    200-400 mg licorice root extract whenever you took your cort before.
     
  14. Ema

    Ema Senior Member

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    Yes, but that only measures what is in the serum. The numbers could be identical and what is working in the cell could be very different. We simply don't have a way to measure that at this point which is why thyroid labs only have limited usefulness.

    Being undermedicated for thyroid can also cause heart pounding. It's all very complicated.

    This also goes along with hypothyroidisim.

    What kind of iron are you taking? How much?

    It's possible to have too much iron even with low labs if it is biounavailable.

    I think this might be a good idea.

    You could always try getting your iron from dessicated liver capsules instead which should not have the same constipating effect.

    For me, it's pretty clear when Vit C is involved with diarrhea because it involves a trip to the restroom within about an hour of ingesting it. An adrenal crisis wouldn't have that sort of temporal relationship to the C. And you would usually be feeling anxious, sweaty, nauseous, dilated eyes...etc. All signs of adrenaline production due to low cortisol.

    It's hard to say because there are many reasons for constiptation.

    But in my experience, if you are having an adrenal crisis, you will know it.

    I think it's normal to feel somewhat crappy during a wean. There will be times of low cortisol and that can make you feel fatigued, sore and other symptoms. But it shouldn't be intolerable.

    Losing hair is always terribly upsetting. I lost about a third of my hair last year to a medication and it's been awful. So I get it.

    But unfortunately hair loss is one of the hardest things to try to pinpoint a cause. It can be so many things...iron, low B vits, low sex hormones, hypothyroidism. All can cause hair loss and so will stress. Usually the cause is actually weeks or months behind the actual loss.

    Maybe looking into some high quality wig options would help you relax a little about the impact to your career? I find as soon as I make plans one way, the offending symptom often stops because I've stopped worrying about it as much.

    Yes, if the symptoms are caused from being in no man's land, finishing your wean will let you know what your own adrenals are capable of producing. It can take months though for adrenals to come fully back online and you should be prepared to stress dose even after weaning in times of extra stress.

    If your Lyme results come back positive and you start that treatment though, you may find that you still need the adrenal support. I often needed extra steroid during herxes.

    I'm a little curious as to your initial saliva cortisol results and why you were put on HC if you think you don't need it?

    Basically anything anti-anxiety...be it benzos or supplements for relaxation or sleep.
     
  15. minkeygirl

    minkeygirl But I Look So Good.

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    If you're going to try Pregnenolone start very low and build up.

    25 mgs turned me into a screaming, raging lunatic snd is too high imo to start on. even a low dose of 10 mgs caused a severe crash a few hours later. It was intolerable.

    I am currently on 2.5 mgs DHEA. 5 mgs kept me up. Hormones as you know ain't no joke.

    I'll let my NP unravel them for me.
     
  16. KimmyB

    KimmyB

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    Interestingly, I've been subclinical hypo for... well, probably 6 years now. But the heart pounding only started after I went on thyroid medication in October (which my body couldn't tolerate for unknown reasons so I went off and the heart pounding stopped immediately. The hair loss only started once I began to wean HC -- but not until I had weaned from 25mg to 10mg, which I weaned down over the course of 3.5 months, and I've been at 10mg for 3 weeks now. Complicated indeed.

    I believe quite strongly that once we identify and treat the underlying infection/parasite/virus that is currently suspected, my thyroid won't be an issue anymore. Something is preventing my thyroid hormones from getting into the cells and do what it's supposed to.

    I take 1 capsule Laktoferrin, 1 tablet Proferrin, and 27mg of Blue Bonnet Iron Byglicinate every day.

    I have one bowel movement per day -- first thing in the morning -- about 12 hours after I take the Vitamin C. So, okay, that probably isn't it.

    I'm not anxious or sweaty, my eyes are fine... however, I have been nauseous all day today, which is a brand new thing. I've had very mild heart pounding.

    Then I would say... I don't think I am.

    The drop to 10mg has been pretty unpleasant, my energy only improved once I added 150mg of ACE per day.

    I am SO sorry to hear that Ema. I had no idea how traumatic it could be to lose hair until it started to happen to me. Did it happen very gradually, or did you start to have clumps of hair coming out? And is it re-growing for you now? I'm so sorry, truly.

    So... Ema... would you say that perhaps it would be wise to stop the wean at this point, given that I'm likely about to be starting some sort of treatment for something viral/infectious/parasitic soon?

    My gut is telling me that I might want to go back up to 15mg of HC, which is where I was at before the hair started to fall out... and worry about the wean later. If I'm about to go through a hefty healing cycle, killing off whatever might be living in my body uninvited... does it seem like maybe this isn't the time to be getting off the meds?

    After six years of being ill, the one thing that hadn't been supported in any meaningful way was my adrenals. I'd been on glandulars, I'd been on herbs, nothing really helped. And just through the process of elimination, it seemed like my adrenals might be the root cause of the whole issue here. So, HC was suggested as a treatment of last resort, so to speak. But once I got on it and began thyroid treatment, which didn't work... it started to become clear there was still some other underlying cause that hadn't been addressed. So it wasn't my adrenals or thyroid, they're just another symptom of what's really wrong.

    The HC has improved my quality of life since September quite a bit, so in a way, I'm glad I have been on it. BUT... now that I understand that I obviously have some other kind of underlying issue, and that resolving that issue will likely allow my body to start using thyroid hormone properly and as such, taken the burden off my adrenals... I've realized that I probably could have avoided going on this steroid altogether. (But all of that is said with the benefit of hindsight... and at the time, I was desperate for some relief.) Does that make sense?

    Nope, nothing at all.
     
  17. drob31

    drob31 Senior Member

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    I still think the root cause of HPA-axis dysfunction is stress. This stress triggers something, such as autoimmune, virus, bacteria, or parasite. Maybe the pathogen or autoimmune condition was latent. Maybe the stress and hpa-axis dysfunction weakened your immune system and allowed the pathogen to flourish which prevented the hpa-axis from recovering. Maybe it strengthed your immune system and caused the autoimmune condition to worsen. Maybe it caused a bad gene to express.

    This could be why hormones seem to partially work. They address the deficiencies, but they don't address the root cause, and there could always be more deficiencies.
     
  18. minkeygirl

    minkeygirl But I Look So Good.

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    @drob31 My HPA axis has completely gone haywire the last few weeks and I'm really feeling it. This came on the heels of a few very stressful weeks dealing with Home Health who was supposed to help, not make things worse.

    How are you managing yours? I'm using electrolytes, bought but have not received Hypothalamus glandular, started very low on Dhea because even 5 mgs keeps me awake and will then hold til I see my NP on the 22nd.
     
  19. KimmyB

    KimmyB

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    Oh, I'm definitely not going to try Pregnenolone unless my IP or ND come up with that as a necessity based on my labs.

    I don't disagree at all. What you said is likely correct to some degree. My current suspicion is this: I think I picked up a pathogen of some sort at some point between 2006 and 2008, and I believe it may have been hiding in my system. Then in 2008 I went through an extreme "stress event" that lasted 4-5 months... during that time my GP (who I no longer see) put me on anti-anxiety meds and also gave me acid reducing mediction and antiboitics. Typical western medicine solutions to what was happening. I think the stress and the medications were the perfect storm... I know it completely threw my gut off, likely threw my immune system for a loop, I was in fight or flight mode for a prolonged period... and boom, as soon as the stress ended (and I dropped the meds), I got sick.

    And yes, I agree that hormones often don't address the root cause. But in my case with this, we have systematically ruled out things test by test, by trial and error with supplements and so on. I needed to be on HC to see that my adrenal burnout wasn't the root cause, it was a symptom of something deeper. And it only now pointed toward something infectious/pathogenic/viral. So, as much as this hasn't cured me, it's leading us closer to the root cause. Sucks that I had to get to this point via such a winding road but... that's the journey I've been saddled with. Can't change it now.
     
  20. Wayne

    Wayne Senior Member

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    Hi @minkeygirl

    From what I've read, the adrenals don't shut down cortisol production unless supplementation is greater than a replacement dose, which is about 40mg/day. If true, it would mean your supplementing 7 mg./day [which is only about 1/6 of a replacement dose] would not even come close to shutting down your adrenals. Not trying to convince you of anything--just sharing my own understanding.

    Best, Wayne
     

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