My failed hydrocortisone taper

Wanting to start the new year off on a good foot, I took my kids ice-skating yesterday after lunch and skated with them for an hour and a half which did make them deliriously happy. The actual skating went very well considering I had not been in 6 to 9 months. I did not have any dizziness or unusual weakness and I felt pretty good physically. But when we got home, I crashed very hard and remained that way until bedtime. Physically and mentally I was just a puddle.

In my crashed state I realized that my hydrocortisone taper which I started in September had failed. I sensed that the difficulty I had with chelation in December was a consequence of tapering hydrocortisone too far too fast. It’s ironic because I was just bragging to someone that my switch in late November from Isocort to HC had gone without a hitch. Not!

One of the reasons I wanted to get off of Isocort is that the amount of hydrocortisone it contained was never certain. Some people claimed it was 1.5 mg and others said 2.5. I had been taking nine tablets so the range of possibilities would’ve been 13.5 mg to 22.5 mg. In September I began slowly reducing the number of tablets until in November I was down to five tablets. When I switched over to hydrocortisone I went with 12.5 mg.

Yesterday during my crash I added 5 mg of HC to bring me up to a total of 17.5 mg and I think I will stick with that for a while to see what happens. I’m extremely disappointed and worried that I may never get off hydrocortisone and may never fully recover my ability to exercise. How the adrenal glands respond to chelation and methylation protocols seems to be a cloudy area.

Rich Van K writes:

I have proposed the hypothesis that a chronic partial methylation cycle block is the fundamental biochemical abnormality in CFS, and that glutathione depletion is tied to it in a vicious circle mechanism. I’ve suggested that the HPA axis dysfunction results from improper synthesis of ACTH by the pituitary, owing to glutathione depletion in it.

We also know from reading Andy Cutler that mercury preferentially targets the endocrine glands and the hypothalamus and pituitary that govern them. So, I’m sure I still have reason to hope…

 

 

 

 

 

 

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  • avatar

    whisperingsage April 7, 2016, 9:16 pm

    Have you tried real raw adrenal ? Wonder labs carries a raw adrenal product I preferred over the isocort or other RX stuff. I no longer need as the methylation I get from the 4 g a day of TMG has bounced the adrenal back. Didn’t think that could happen.

    • avatar

      Eric April 15, 2016, 4:05 pm

      that’s inspiring! I’ve increased my TMG to see what might happen:-) thanks..

  • avatar

    Ron L February 17, 2015, 3:31 pm

    Hey Eric,
    are you still on 30mg HC? has taking HC noticeably affected your other hormones? has it decreased libido or induced salt cravings due to lowering aldosterone?
    Thanks!

    • avatar

      Eric February 21, 2015, 4:17 pm

      I am still taking 30 mg hydrocortisone and I couldn’t really say whether it has decreased my libido or not – it was probably low from illness before I went back on the hydrocortisone. I don’t have salt cravings.

  • avatar

    Nicola January 15, 2014, 10:05 pm

    I am another who has bounced between Cutler and Freddd for a fair few years. I have been sick for 10 years, stumbled on the mercury issue pretty quickly, removed amalgams and chelated pretty solidly for two or three years, but only ever with DMSA, as I just couldnt tolerate ALA, even in small doses. I then tried Freddd for the first time and made a good improvement, but  bombed out on the potassium issue, which I didnt know about.  Went back to DMSA chelation, and then back to Freddd, again felt great, but the hypokalemia, which I still didnt know about, scared me. Stopped everything for a while, then about a year ago tried Freddd again and found out about the potassium thing, so have been able to tolerate the active Bs much better.  My energy has really increased, and brain fog and depression reduced, but the burning mouth continues. So I am back to chelation with DMSA and ALA this time. I think I am tolerating it better because the folate and methyl B12 get the sulphur metabolism working better. Could that be it? So I will be doing both Freddd and Cutler and hopefully wont get bombed out by either this time.   Put me down for a T-shirt too.
     

    • avatar

      Eric January 15, 2014, 10:26 pm

      Awesome Nicola! Glad to be on the same path with you. I still have trouble with potassium – still am tight and cramping and am already taking 5.3 g per day (about two thirds potassium gluconate and one third potassium chloride).

      • avatar

        Nicola January 16, 2014, 12:01 pm

        Hi Eric.  It doesn’t surprise me you still have trouble with potassium.  After a full year of dosing methyl folate and B12 I have ongoing problems with potassium, which remains below range despite taking at least 4g a day, more when I get cramping and palpitations.  I take florinef as part of adrenal support, and while this is known to waste potassium, I have taken it for years before the active B protocol without a problem.  My belief is that B12 antagonises potassium every time you take it, rather than sparking a healing wave of new cell creation for a certain amount of time.  Granted, if you have had a methylation block for tens of years or even from birth that backlog of new cells may take a while to clear, but a year?  I run into potassium problems each and every day I take mB12 and AdenoB12, which makes me wonder.   I am easing off the active B12 dosing a little, maybe once or twice a week for a while, to let potassium stores build up a little.  I have restarted ALA chelation, as I have read that ALA is good for neuropathy, which is essentially what burning mouth is.  The B12 has helped this, but not eradicated it, and I am desperate to be rid of it, if that is possible after 8 years.   We shall see….  I shall read your progress with interest.  Your case is very similar to mine … 

        • avatar

          Eric January 16, 2014, 8:11 pm

          Nicola, you may have noticed Viking’s comments in this very same thread – he recovered 100% percent from neuropathy in 18 months of ALA chelation and methylation treatment. You’ll find his comments peppered through my blog. I do remember that he never had a problem with potassium though.

          I’m also pretty tired of the cramping and have been thinking of doing something a little crazy:

          After reading the book “The doctor who cures cancer” and seeing Revici’s potassium patent, I’m thinking of making the lipid potassium he describes in the patent. I’ve actually purchased the glass tubing and a glass coffee pot necessary to make this on my stove. Planning to try using sesame oil and potassium gluconate powder. What do you think – would you swallow sesame oil with potassium gluconate baked in it?

          Also an interesting mention of encapsulated potassium here:

          “In all cases, autoimmune diseases are preceded by breakdown in cellular anabolic performance, and consequently, cellular potassium deficiency is guaranteed in autoimmune disorders. The critical oversight in research literature is that cellular potassium is a by-product of anabolic metabolism.

          Dietary potassium sources weakly influence cellular potassium levels because the cellular potassium channels are one way out, not in.

          Modest exceptions occur when dietary potassium is encapsulated, chelated into aspartate, orotate forms, or lipid structures that integrate with the cell membrane.

      • avatar

        Samantha McRorie January 17, 2014, 1:33 am

        Hi, came upon your site in a reply on an adrenal support Facebook group. I am intrigued. I too am on a journey of healing. I have been sick for a very very long time but the worst of it has been the last 3 years. Adrenal and thyroid issues mainly. Just sent me DNA sample to 23&Me and will soon know if methylation is an issue – I am pretty darn sure it is.
        Right now I am going through a miserable hyperthyroid stint due to a very bizarre reaction to a minimal dose of synthroid that I took for 4 weeks. Long story so I won’t bore you with details but you have peaked my curiosity on the potassium issue. Can you point me in a direction to learn more about it? I have had chronic neck and shoulder pain for 3 years that has moved to many muscles on the right side of my body and now the left side is getting in on the action.

        Muscle spasms and tightness…..the injury was the result of being at peak stress in my life and going to a chiropractor and things got nasty from there. I have tried almost everything to heal my muscles but I am now 100% certain I won’t be out of pain until I can solve the mystery of my endocrine issues. I have low cortisol across the board but not low enough to make my doctor want to do anything about it…..

        Am about to do another salivary 4 pt cortisol test since it has been a year since my last. Then will perhaps try Cortex since I cannot get a script for HC – sigh. My naturopath tried filling me full of adaptogens last February – until June and it was absolutely disastrous. Anyway I will stop with the details of my health. Looking forward to more details on the whole potassium thing.

        Thanks,
        Samantha McRorie

        • avatar

          Eric January 17, 2014, 2:46 am

          Hi Samantha, here’s a good place to start with potassium. Sorry hear about your difficulties, I know what it’s like! I didn’t know 23andme was still operating, or operating again… Glad you got your sample in!

        • avatar

          David Hammond January 17, 2014, 5:05 am

          Hi Samantha,
          have you had your RT3 level checked? If you have high levels of RT3, small amounts of T4 can make you hyper. If your cortisol is low, thyroid hormones won’t be able to enter the cells, causing hyper symptoms.
          Mercury depletes iodothyronine deiodinase which is necessary for the conversion of T4 to T3.
          I buy hydrocortisone without a script from http://www.inhousepharmacy-europe.com/p-211-hydrocortisone-20mg.aspx and I have also bought it from vhttp://www.internationalpharmacy.com/en/products/details/259671, but they don’t deliver to the US.
           
          Dave.
           

  • avatar

    John Macgregor January 15, 2014, 6:12 am

    Hi again Eric,
    Interestingly I did the HC taper over roughly the same period & in the same amounts – with the same results. It just didn’t bloody work.
    I’m now on 15 to 20mg daily again, which has lifted my energy & cognition back to where it was.
    I’ve also upped my thyroid meds. I was on 1/2 grain of dessicated thyroid daily, but lifted that to 1 grain.
    At least until I got a reverse T3 build-up, necessitating a switch to T3 only for a while. This fixed the “uncomfortable in my own skin” feeling from the excess RT3.
    I’m somewhat comforted by the fact that my friend Bangkok Dave lifted his HC quite high (25-30mg at times I think) when chelating a lot, but has now dropped it to half that.
    My theory was that weaning would force my adrenals to kick-start their own production. His theory was the opposite: that his adrenals needed a good break so they could kick in with more cortisol later, when under less stress. His theory was right.
    BTW your methylation rundown looks extremely good. That was so necessary, as the info is terribly bitty.
    All the best Eric,
    John
    PS: Dave has just written (& I edited) a book on mercury toxicity & chelation:
    http://www.amazon.com/Mercury-Poisoning-Undiagnosed-David-Hammond-ebook/dp/B00HN1RXMW/ref=sr_1_1?s=books&ie=UTF8&qid=1389766246&sr=1-1&keywords=mercury+poisoning
    It covers all the bases (plus breaks some new ground), but is hopefully more accessible than Cutler’s books to lay readers.

    • avatar

      Eric January 15, 2014, 6:09 pm

      Thanks for sharing that John – I do think you had much more cause to try to taper your hydrocortisone, sorry it didn’t work but, there’s always next time. I’m also very encouraged by Dave’s experience! Do you have any side effects from HC?

      Looking forward to reading your book. I asked David if he wanted to do a recovery interview to help promote the book and the offer is open to you also if you want to do another one focused on mercury and chelation…

      • avatar

        John Macgregor January 15, 2014, 11:43 pm

        No sfx from HC, Eric. Tho my fingers do feel slightly bigger occasionally. (Didn’t even realise it was an HC effect till you mentioned it.) It’s so slight it doesn’t worry me. I might have had some palpitations in the first week, I think.
        Good idea to get Dave to write about his experience & his book. (I was just the editor.)
        My mercury situation is more interesting than many you read about because it’s more banal. I had mild mercury poisoning & thus had mild mercury symptoms. 2.5 years’ chelation has removed some of them partially. For example my limbs rarely twitch now, & my tinnitus & longsightedness are much reduced. Musical appreciation has increased a lot; as has sense of smell.
        But my cognition, memory & energy (the biggies) aren’t any different. Their deficits are presumably caused by something else, with damaged endocrine organs being at least part of the cause I think.
        So chelation was well worth doing, but not the radical change it has been for some.

        • avatar

          Eric January 15, 2014, 11:53 pm

          I’m sure you are extremely grateful for those improvements John. Tinnitus especially must be a real bitch. But, I have to say that’s a scary thought that my energy and cognition might not improve with chelation… Ah well, all we can do is make a plan and execute it. See what happens, make another plan, keep going:)

          • avatar

            John Macgregor January 16, 2014, 2:28 am

            Yes, the improvements are gratifying Eric. I’ve actually improved quite a bit more than that, according to my symptoms spreadsheet – but the rest is more likely due to hydrocortisone & thyroid meds.
            I wouldn’t be too worried about the cognition & energy. Mine are both okay now (more due to the endocrine meds I think) – so there has been quite a nett improvement.
            Plus your symptoms must be caused by something in the modern world (our paleolithic ancestors were high energy & high cognition), so in time you’ll work out what it is.
            Most likely more than one something, actually: ‘multi-factorial’ is a much underused word. We tend to search for a single culprit, but health fundamentalism is usually counter-productive. Working on both mercury & methylation, as you are doing, is a pretty good start.

            • avatar

              Eric January 16, 2014, 3:52 am

              Thanks John, I think you’ll eventually solve the puzzle in its entirety also… just a matter of time!

        • avatar

          Eric January 15, 2014, 11:57 pm

          By the way, the fat fingers thing bothers me a lot in the warm months and almost not at all in winter. Aside from making me feel old and decrepit, the big thing is that it aggravates tendinitis…

          • avatar

            John Macgregor January 16, 2014, 2:29 am

            (Of course it sometimes is just mercury, too.)

            • avatar

              Eric January 16, 2014, 3:54 am

              In my case, possibly just a good dose of lead and mercury, nickel, cadmium, silver and maybe a couple others… the kitchen sink.

        • avatar

          Expat Viking January 16, 2014, 12:31 pm

          @John,
          Interesting that you write that your sense of smell has increased. I just discussed this with Eric in the post above this! Here is what I wrote:
          ” I used to have a very weak sense of smell and then during the past 2 years there have been some ups and downs, i.e. sometimes it has felt as if it was getting better. Also, I had some periods of “phantom smells”, i.e. feeling smells that did not exist. I wrote about this in my notes, but it never felt like a big issue.
          Anyway, in the past month, my sense of smell seem to be fully restored! As a matter of fact, it is now better than most others. This is quite a strange experience, almost like getting a new sense. In some ways, it is actually a bit irritating, since I am constantly asking “what is that smell?” and many smells now feel very strong.”
          Did something similar happen to you?

          • avatar

            John Macgregor January 17, 2014, 9:43 am

            Hi EV,
            My smell improvements weren’t as dramatic as yours, I think. I just notice I can smell things more acutely, and also pick up faint odors that others miss.
            This seems to be part of a general sensory sharpening. I notice colours a bit better & appreciate beauty better. And music: I’m listening to loud music again for hours a day, as I work, as I haven’t done since the 80s.
            I also move more fluidly than before – less stiff & jerky; can dance better too.
            Chelation didn’t change everything for me – 2.5 years ago I was wondering if it would, and what kind of personality would be revealed when the tide went out, as it were. But these gentle gradations are nonetheless pleasant & welcome.

  • avatar

    David Hammond January 15, 2014, 1:28 am

    Hi Eric,
    I have been chelating for 3.5 years and taking hydrocortisone for 2.5 years (it took me a year to find a supplier who would provide HC without a script). I started on 30 mg HC and I am now down to 10 mg. Each time I have cut my dose it has been due to a rise in my body temperature – I was just feeling hot all the time and my body temp was frequently up to 37.2. I don’t know if it works like that for other people.

    • avatar

      Eric January 15, 2014, 2:28 am

      Thanks David, that is so good to know and very motivational!! I also delayed switching to HC because I didn’t know how to get it without a script… it was so easy in the end as I’m sure you discovered too, that I wish I had done it sooner.

      Since making this post, I increased my HC up to 20mg and have experienced bloating in my fingers which is very uncomfortable. So, don’t think I will be going up to 30 anytime soon.

      I’m looking forward to reading your book

    • avatar

      Ron L January 15, 2014, 2:11 pm

      Hi David,
      while you were on HC, did you have any side effects or were you able to tolerate it pretty well overall?
      Thanks!
      Ron

      • avatar

        David Hammond January 15, 2014, 3:15 pm

        No, I never had any side effects apart from a high body temperature.

        • avatar

          Ron L January 16, 2014, 1:35 pm

          Hi Dave, were you on any thyroid hormones at same time? 

          • avatar

            David Hammond January 17, 2014, 1:30 am

            I took 2 grains of dessicated thyroid for a year. I stopped as my heart rate was getting a bit high.

  • avatar

    Tara January 6, 2014, 4:49 pm

    Nothing to add other than that you guys crack me up    🙂    Love this thread. 

  • avatar

    Expat Viking January 3, 2014, 7:31 pm

    Eric,
    Did you ever try phosphatidylserine (PS)?  Cutler seem to like it for all cortisol issues but others argue that it is not good if you are low on cortisol.  I like it a lot, but in my case the problem was more regulation (i.e . paradoxal reaction) rather than the level of production.
      I think that we may have discusssed this before and I see that you crossed it out on your supp list.
     

    • avatar

      Eric January 3, 2014, 8:49 pm

      I did buy phosphatidylserine but I think I never opened the bottle after researching in more depth. Now that I’m eating two eggs every day, I would guess that I’m getting plenty of choline but you never know… I’ll have another look at it. Thanks:)

  • avatar

    Ron L January 3, 2014, 3:21 pm

    Hi Eric,
    I read a person used Nutri-Med adrenal cortex (kind of like Isocort) to wean though it took 6 months – see posts by Tim jones and others here (http://www.amazon.com/review/R3IFHZDH01ILDC/ref=cm_cr_pr_cmt?ie=UTF8&ASIN=0398075018&linkCode=&nodeID=&tag=#wasThisHelpful . The STTM website and adrenal facebook group are great resources for that. On that group there are people who were on 25- 32.5 mg of HC for a year or more and they weaned successfully. Most are on thyroid hormones though. 

    • avatar

      Eric January 3, 2014, 4:21 pm

      Thanks Ron, I’m actually using Nutricology’s adrenal although only three caps. Next time I will probably add more of those. Stepping back and seeing the big picture though, I don’t really have any reason to taper until I’m nearing the end of my chelation. It’s so draining that it is not wise or me to attempt it yet… I just had this huge explosion of wishful thinking, lol.

  • avatar

    Mary January 3, 2014, 8:58 am

    Hi Eric, from what I understand, the only warnings about licorice root are for people who already tend to get high blood pressure, it can raise blood pressure, and that it is a natural phytoestrogen.  (this second one isn’t even mentioned in mainstream medicine, but I wanted to mention any drawbacks with licorice that I had heard of).
    On the blood pressure issue, it apparently only causes the problem in people who already have high blood pressure tendencies.  And people with adrenal fatigue tend to have overly low blood pressure, not high.  Just wanted to mention what I’d read/heard, fwiw. 

    • avatar

      Eric January 3, 2014, 4:23 pm

      Thanks Mary, my blood pressure is superlow now – actually thinking of going to the doctor just to make sure my gadget is accurate. Anyhow, I will try licorice the next time I taper, but it probably won’t be for a year. Chelation is so demanding, I’m sure my timing was just really poor.

  • avatar

    lloyd fisher January 2, 2014, 9:41 pm

    Do not dispare over the cortisone taper. I could never taper directly off of cortisone. HOWEVER, I was able to switch over to licorice powder. Three teaspoons seemed to mimic the effect of over 22.5  gm of Cortef. And then  I tapered from there. It took me twenty one months . I was in no rush, since licorice has a multitde of actions, not just on the adrenals. I will gladly go back on smal(or moderate0 doses if I need to , if  pollen allergies remain impervious to methylation therapy. Licorice powder  is real cheap and you don’t have to deal with the Doctor-patient bullshit! Good luck! …You go me on the methylation bandwagon. I’d like to pay it forword to you.

    • avatar

      Eric January 2, 2014, 10:21 pm

      Thank you Lloyd! So glad to hear the licorice powder worked for you. I’ve always been nervous about trying to licorice because of the warnings about not using it for more than three weeks. Next time when I’m really ready to taper I will try the licorice 🙂

      Glad to hear you are giving the methylation a go.

      • avatar

        lloyd fisher January 3, 2014, 4:57 pm

        I want to thank you so much for this blog. I had made good gains with a balls to the wall Paleo Diet, amalgam removal/Cutler chelation, Jack Kruse cold thermogenesis/ grounding, but my progress halted after a year and a half.  I thought it might be a lack of detox ability and I googled Cutler-sulfur and got you! in late July. You send me back to “FREDDD”, who I had tossed aside years ago as a raving lunatic, and /or Richard van k’s  “simplified program”which seemed to my then brain-fogged mind as “not so simple”. With a clearer mind this time around I found “FREDDDDD” to be a fucking genius! Aspergered out perhaps, but a genius! I may make , and wear a Freddddd t-shirt….. Methylation rehab is worth everything I tried before put together (OVER THIRTY YEARS of sickness). and I only been doing it since September. So thanks again. Thanks again. Thanks again.

        • avatar

          Eric January 3, 2014, 5:17 pm

          Hey Lloyd, I can really identify with your comments, it does take a leap of faith to look past the raving lunatic angle… got a good laugh from imagining you wearing FREDDDD tshirt.

          Reading your message actually brought tears to my eyes. I’m also working on repairing 30 years of sickness. In my case the first 18 years were subtle so it’s really the last 12 that became ugly. I’m increasing my folate again today, have been doing roughly 4 increases a month and it takes a lot of faith because of the startup reactions. I’m convinced I’m on the right path, but honestly my progress is very slow, so reading messages like yours is really motivational. I wonder if you’d be open to doing an interview like these: http://howirecovered.wpengine.com/category/success-stories/ ?

          • avatar

            lloyd fisher January 3, 2014, 5:59 pm

            I’ll be glad to share what I’ve found to work and not work. I have about thirteen different (pre-b12/folate)modalities that work for me.Of course many  could prove superfluous in the future if methylation continues to add another”brick in wall” on a weekly if not daily basis.

            • avatar

              Eric January 3, 2014, 9:17 pm

              thanks Lloyd, I sent you an email…

              • avatar

                Sparrowhawk January 25, 2014, 12:58 am

                Would love to learn about those protocols/modalities as well, Lloyd and Eric, if you find them fruitful perhaps they can be shared here? Thanks.

        • avatar

          Expat Viking January 3, 2014, 7:44 pm

          @Lloyd.
          Great idea with a Freddd T-shirt! Please post a picture if you ever get one done!

          • avatar

            lloyd fisher January 3, 2014, 10:27 pm

            First we need to find out what Fredddddd looks like. I envison a sixty four year old Sheldon Cooper from the BIG Bang Theory. but boy do I owe that man a lot. Long live Fredddddd!

            • avatar

              Eric January 3, 2014, 10:34 pm

              LOL, he’s pretty secretive – only responds to the forum posts that he wants so I don’t think we’ll ever get a picture. But I promise, I’ll make a shirt at CustomInk.com if I recover the ability to exercise this year!!

    • avatar

      Ron L January 15, 2014, 2:48 pm

      Hi Lloyd,
      do you buy the organic licorice powder or non-organic? 
      do you eat the powder? in water, tea or off the spoon?
      Thanks!
      Ron

"...nothing ever goes away
until it has taught us
what we need to know.
"
-Pema Chodron

"God, whose law it is that all who learn must suffer. And even in our sleep pain that cannot forget, falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God."
-Aeschylus

About


My name is Eric - I‘m 48 and saw a doctor for fatigue at 17. I lived fairly normally if a little subdued by lack of endurance at times. But then, 12 years ago I fell into a nosedive after moving to South Florida. Now, I know heavy metal toxicity is a significant source of my troubles along with genetic methylation cycle dysfunction and Lyme disease. I spent 18 months chelating the metals out and starting up methylation but stopped when I felt myself circling the drain. Currently going after Lyme and co-infections. More about me here.

* supplements
* hair test
* genetics
* lessons learned

"Battles are won in their darkest hours. Wars are won by learning something from each battle."
-Eric

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