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Weaning Hydrocortisone (aka Cortef)

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@Wayne

1. I was treated for a non-existent disease.
2. I was given cortef.
3. I developed allergies I never had before which the doctor said was from the cortef messing up my immune system.
4. I got a virus which caused me to hallucinate.
5. I never recovered.

There is zero doubt in my mind that my ME is directly related to the Cortef .

And just a side note which I've posted before, this same doc was arrested for snorting coke and banging his office manager in his car in the parking structure outside his office.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
There is zero doubt in my mind that my ME is directly related to the Cortef .

I'm not trying to disagree with any of your points. All I was doing was sharing my own understanding that 7 mg of Cortef is unlikely to shut down anybody's cortisol production. No more--no less. I was only trying to be helpful, but it appears you don't appreciate my input, so I won't offer any more.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Wayne

There is zero doubt in my mind that my ME is directly related to the Cortef .

And just a side note which I've posted before, this same doc was arrested for snorting coke and banging his office manager in his car in the parking structure outside his office.
It's clear that this doctor was a total wack job.

And it's also possible that you didn't need Cortef. Many people with HPA axis dysregulation seem to get along better without it.

But it seems much more likely to me that the immune system breakdown was related to the allergies and viral attack (or something else entirely unknown) rather than the extremely low dose of Cortef.

The two things are related in time but the likelihood of them being causal seems very slight to me indeed. You probably ate a French fry or chewed some gum during that time too, but they aren't responsible for the ME either. ME is just way too complex to draw that straight a line and be boiled down that simplistically in my opinion.

I would hate for someone who really needed cortisol to read that post and be afraid that a trial would cause a lifetime of misery because I truly don't believe that would happen.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
The drop to 10mg has been pretty unpleasant, my energy only improved once I added 150mg of ACE per day.

That makes sense because in effect you increased your total cortisol dose with the ACE.

Did it happen very gradually, or did you start to have clumps of hair coming out? And is it re-growing for you now?

It happened over a 6 month period and it thinned all over so it wasn't as noticeable as it might have been. Still upsetting to see huge clumps in the tub after the bath though.

It is regrowing but my hair has always grown at a snail's pace so I doubt it will be where I want it to be anytime soon. Thank goodness for clips and ponytails.

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?

I think that you have to go with your gut.

I started my HC wean right before I started cidofovir infusions for chronic viral infections. In fact, my first day totally sans HC was also the day of my first infusion in the hospital in a city 6 hours away. Total stress and completely the wrong time to wean if you'd asked anyone. But I knew it was the right time for me...and it was.

I also know of very few people with weak adrenals that are successful with (especially aggressive) pathogen killing regimes without support. In some cases, it's the difference between a successful treatment and not being able to tolerate the herxing at all.

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?

I think maybe this answers your own question.

'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?

Yes, but if you do need the steroid because of the infections dysregulating your HPA axis, you need the steroid. Hopefully treating the infections will resolve that dysfunction, but only time will tell. Either way it's a long road and there's no need not to take the HC if you feel it helps you function better.

If a lot of your pathogen testing comes back positive, I would also consider getting your total immunoglobulin levels tested (IgG, total and subclasses 1-4). Many people have low levels of IgG and this can contribute to recurrent, chronic infections that most people are able to shake off but we are not. Replacing antibodies can form an important part of the process if they are low.
 
Messages
38
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.

I think though, that if you're on too low a dose, you also cause your adrenals to down-regulate. It's the body's feedback loop, it senses the supplemented cortisol and stops producing as much.

Total stress and completely the wrong time to wean if you'd asked anyone. But I knew it was the right time for me...and it was.

@Ema had you tried to wean before that? Was this the first time? And how did you know it was be right time for you?

So... I have increased my HC to 15mg for the past two days, and my stool has changed. It's firmer suddenly. Does that suggest to you, Ema, that the 10mg was, indeed, too little for my body to handle? OR does that happen in that no-man's land you talked about?

The weird thing is, the bowels are better and my energy is pretty good... but I've had intermittent dizziness all day today, and way more heart pounding. Am I still too low?
 

drob31

Senior Member
Messages
1,487
I think though, that if you're on too low a dose, you also cause your adrenals to down-regulate. It's the body's feedback loop, it senses the supplemented cortisol and stops producing as much.



@Ema had you tried to wean before that? Was this the first time? And how did you know it was be right time for you?

So... I have increased my HC to 15mg for the past two days, and my stool has changed. It's firmer suddenly. Does that suggest to you, Ema, that the 10mg was, indeed, too little for my body to handle? OR does that happen in that no-man's land you talked about?

The weird thing is, the bowels are better and my energy is pretty good... but I've had intermittent dizziness all day today, and way more heart pounding. Am I still too low?


I'd be curious how your aldosterone levels are looking as well as other adrenal hormones. Your cortisol may not be the only culprit.
 
Messages
38
I'd be curious how your aldosterone levels are looking as well as other adrenal hormones. Your cortisol may not be the only culprit.

Aldo & Renin are normal. I'm not really worried about the other hormones; I believe my practitioners are finally keying in on the underlying cause for me, and I think everything will become clear when that happens.

Right now, all I'm trying to figure out is weaning HC and whether I should continue, stop, or raise the dose.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Ema had you tried to wean before that? Was this the first time? And how did you know it was be right time for you?

No. That was my first wean. It's a long story but I'd gotten a prepacked hormone panel through a lab testing company online and it came with a cortisol test. I figured it would come back negligible because of the HC but it actually came back pretty high. So it was clear my adrenals were doing something...even on 25-30 mg of HC. So that gave me a lot of confidence. And then I just started feeling better and better as the wean went along which reinforced my suspicion that it was the right time.

The weird thing is, the bowels are better and my energy is pretty good... but I've had intermittent dizziness all day today, and way more heart pounding. Am I still too low?

There's just no way for me to answer that. :)

It could be cortisol...it could be electrolytes. Probably the first thing I would try is a glass of sea salted water and see if that settles down the dizziness and heart pounding. If not, I would try a small dose of HC and see if that makes you feel better. If it does, it was probably low cortisol!
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
the website 'stop the thyroid madness' and their facebook forums have lots of info re taking HC and weaning it. And yes, taking 7 mg would actually downregulate the feedback system as KimmyB said and cause low cortisol.
 
Messages
38
And then I just started feeling better and better as the wean went along which reinforced my suspicion that it was the right time.

Three questions about that:
1) Did you have any fatigue at all during the wean?
2) How long had you been on HC by that point?
3) Did you fix any underlying or connected issues (eg, thyroid) before the wean?

There's just no way for me to answer that. :)

Yes, sorry, that was a stupid question... I realized after the fact. Apologies. heh.

It could be cortisol...it could be electrolytes. Probably the first thing I would try is a glass of sea salted water and see if that settles down the dizziness and heart pounding. If not, I would try a small dose of HC and see if that makes you feel better. If it does, it was probably low cortisol!

I already do salted water every day so I know that's not it. I did feel better when I added potassium back into the mix last week.

Here's what I realized: I think it was the Adrenal Cortex Extract (ACE) causing the nausea and dizziness. I had a friend who had taken it and her limbs became incredibly weak after just a few days on it, and that twigged in my memory. So I didn't take any ACE yesterday and, lo-and-behold, the dizziness and nausea are gone.
Going back up to 15mg made my BMs firm up... so I think my body wasn't ready for the drop to 10mg, based on that symptom alone.

BUT... all of a sudden today, my hair is falling out in clumps and my scalp hurts. The only change I made was dropping the ACE yesterday. OH MY GOSH... just as I typed that it hit me, that could be the culprit for the sudden increased hair loss today. My body was expecting a certain level of cortisol and it dropped dramatically. SH*T... I bet that's what did this. But now what can I do to right the ship? Anything? Go right back up to 25mg of HC? I'd wipe out the 3 months of weaning I just did but I'll do anything to stop the hair loss right now. Like, ANYTHING.

Thoughts, anyone?
 
Messages
38
Oh, @Ema, I did want to ask you again about the no-man's land you talked about... I forgot in my earlier message. When you weaned down, did you experience crossing over into the no-man's land, so to speak? OR, if your adrenals are strong enough, does a person go into the lower amounts of HC (like under 10mg) and not experience anything bad because their own adrenals are picking up the slack?
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Oh, @Ema, I did want to ask you again about the no-man's land you talked about... I forgot in my earlier message. When you weaned down, did you experience crossing over into the no-man's land, so to speak? OR, if your adrenals are strong enough, does a person go into the lower amounts of HC (like under 10mg) and not experience anything bad because their own adrenals are picking up the slack?
I had the hardest time with my wean when I dropped down to 17.5 mg. And that lasted until I dropped under 10 mg. At that point, my adrenals were kicking in pretty well and the fatigue and muscle pain were greatly lessened. But I would not want to stay in that 10-20 mg stage any longer than absolutely necessary because it really was a no-man's land for me.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Three questions about that:
1) Did you have any fatigue at all during the wean?
2) How long had you been on HC by that point?
3) Did you fix any underlying or connected issues (eg, thyroid) before the wean?
I did have some fatigue during the wean but it was not unbearable. I take a nap almost every afternoon though.

I had been on HC for a little more than 2 years.

I tried and tried with thyroid but never had any luck. I had "perfect" labs according to STTM and the like. My frees were great but I still had hypo symptoms. When I tried to raise my dose though, I got anxiety that would not quit. My body did not want to use that thyroid no matter whether it was coming from me or from exogenous sources.

I too have hopes that fixing the underlying issues will also correct hypothyroid symptoms but it has been a long road and so far not much success. I think about trying thyroid meds again all the time though.

I'm so sorry about the hair...I know how sickening that feels.

When do you get the results from your pathogen testing?
 
Messages
38
I had the hardest time with my wean when I dropped down to 17.5 mg. And that lasted until I dropped under 10 mg. At that point, my adrenals were kicking in pretty well and the fatigue and muscle pain were greatly lessened. But I would not want to stay in that 10-20 mg stage any longer than absolutely necessary because it really was a no-man's land for me.

That's interesting that you say that about 17.5 -- that's exactly when it started to go off the rails for me too. My hair started to fall out a bit around 15mg and has ebbed and flowed with yesterday being the absolute worst of it.

This has been the conundrum though: I felt pretty sh*tty on 10mg for the three weeks I was on it, plus the hair shedding... but now I wonder, what if I had powered through and dropped to 7.5 and continued my schedule, allowing my adrenals to pick up more as I went along? Would the hair have gotten worse, or perhaps better as my own adrenals picked up the slack?

It's moot now, though, as I boosted back up to 17.5mg yesterday to just try and stop the hair shed... and it seems to have helped somewhat, I haven't lost clumps of hair today quite the same as yesterday (although I'm loathe to even touch my head right now, so... maybe it's falling and I'm just staying still and pretending it's not happening).

I'm speaking to both practitioners tomorrow and hopefully I'll get some guidance on what to do at this point. I've already increased to 17.5 so I'll be re-doing half of this wean regardless. Kind of sucks but I'd rather re-do the wean than lose my hair.

You called it a sickening feeling... YES... oh my God, yes. And nobody understands, my husband really can't identify with why I'm such a wreck over this. It's nice to hear from someone who gets it.

I tried and tried with thyroid but never had any luck. I had "perfect" labs according to STTM and the like. My frees were great but I still had hypo symptoms. When I tried to raise my dose though, I got anxiety that would not quit. My body did not want to use that thyroid no matter whether it was coming from me or from exogenous sources.

OMG! ME TOO!!!! I had small improvements on T3-only, but my body was NOT happy... and eventually it completely freaked out and I quit it cold turkey (with no ill effects, if you can believe that). I had SO many bizarre symptoms while on T3. My practitioners agree that my underlying problem (whatever it may be) is preventing the thyroid hormones from getting into the cells... my gland is running low but it's running.

I will get the results back next week from the look of things. Lyme Tuesday (approx), other viral/infectious stuff Thursday, and methylation panel by the end of next week as well. I am praying SOMETHING turns up. If not, there's still more pathogenic type testing I can do (saliva and stool) that could show us something lurking in my body. But then there's more waiting and feeling awful in the meantime.

Have you investigated virus/infection/pathogen type stuff as possibly your underlying cause?
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Have you investigated virus/infection/pathogen type stuff as possibly your underlying cause?
Oh, yes.

After I spent a year figuring out that supporting/treating my adrenals and thyroid wasn't actually solving any problems (though it did help with some symptoms), I started looking at pathogens. I tested positive for Lyme, EBV, CMV, HHV6, you name it, I've got it. LOL.

I saw Dr Lerner in MI. He treated me with Valtrex, Valcyte and cidofovir infusions for about a year. I got somewhat better but then relapsed spectacularly last year thanks to a trial of Valium. I was stressed out due to personal circumstances and thought Valium might spare my adrenals. It did not. It's been a long slow slog back out of bed since then.

I've been on every antibiotic and antiviral ever made, I think. And now I'm rethinking whether it is actually pathogens at the root of all this or if it is chronic inflammation and an out of control antibody response. After all, we're measuring antibodies and not viruses directly. Most AVs work as immune modulators anyway along with their antiviral effects so it's possible the improvements aren't from lowering the viral load so much as previously thought.

So now my plan is to reduce inflammation with meds and supps in every way possible and detox detox detox. I'm still on abx and AVs because I am afraid to stop, but I am planning to come off this fall after the possibility of being bitten by another tick outside has mostly passed.

Then I will try to rebuild my gut and see if I can turn off the inflammatory out of control cytokine response without relapsing. Here's hoping...

Have you tried any of the cleansing conditioners instead of shampoo? I find less hair in the tub when I use those products. It's not a solution but it might be something to try. Also biotin drops.

I also don't think my wean would have gone so smoothly without licorice and DHEA...
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
I'd be curious how your aldosterone levels are looking as well as other adrenal hormones. Your cortisol may not be the only culprit.
I was just going to post exactly this. I have suffered very badly with the recent heat, so much ridiculous sweating and it has flattened me. The pain and weakness meant I could hardly walk but when I get that bad I work stuff out and realised that because of the sweating my electrolytes were messed up again and I needed a very low dose of Fludrocortisone.

Its like a miracle after only a couple of days of 1/2 tab the strength came back into my body and my brain felt better too but one week later I am still needing 1/2 tab daily. On the days I have tried going without I have felt very bad and the sweating was back very badly so it would seem I just have to accept for a while I need half a tab daily.

I have been on 5.5mg Prednisolone for over 12 years now and didn't originally take Fludro but looking back I can see that I desperately needed it, things like sweating, episodes of blackness, raging tinnitus and of course complete weakness.

I find it very difficult to distinguish between POTS symptoms and my need for Fludro. In the Autumn, Winter and Spring my body seems to cope fine without Fludro except for the odd episode.

I really don't know if I would be classified as primary adrenal insufficiency or secondary because I still make very small amounts of cortisol or at least I did about 5 years ago when I last did a 24 hour saliva test but last year I was also diagnosed with late stage lyme so its all very compicated. In addition 40 years ago I lost 4 pints of blood immediately after childbirth and that could well have contributed to my problem and caused hypopituitary issues.

Pam
 
Messages
38
I tested positive for Lyme, EBV, CMV, HHV6, you name it, I've got it. LOL.

I'm gobsmacked. Are you even able to get out of bed?? My gosh, woman. How does a person get all of those conditions????

How long have you been ill, and what have your symptoms been? I can't even comprehend.

Have you tried any of the cleansing conditioners instead of shampoo? I find less hair in the tub when I use those products. It's not a solution but it might be something to try. Also biotin drops.

No, I haven't tried a cleansing conditioner. I wash my hair only once a week, and the hair is coming out every day, wash day or not. The problem is definitely from deeper within the body, no question. I don't think anything scalp related is actually affecting things.

A few people have mentioned biotin to me actually but I'm really nervous to add anything at all right now, my body has simply decided it's not interested in allowing anything new to my protocol. I can't even tolerate my B-Complex anymore. Something has just gone completely haywire and my body is protesting loudly to any change at all. Zinc and selenium threw me for such a loop, I nearly couldn't get out of bed... and those are basic nutrients.

I also don't think my wean would have gone so smoothly without licorice and DHEA...

DHEA is so controversial, I've heard so many bad things about supplementing it. Did you have any negative effects from it at all?
 

drob31

Senior Member
Messages
1,487
I think the reason DHEA helps the wean is because it helps build up the DHEA-S levels in the body. With more DHEA-S, the body can divert adrenal hormone production down the Progesterone pathway, and this leads to more cortisol. The licorice root will keep the cortisol active longer.

Of course adding pregnenelone would also give you a bigger pool of resources to use, although I'm not saying I can predict how it will convert. It would make sense, that if you had adequate DHEA, that more would be converted to progesterone.
 
Messages
15,786
I'm gobsmacked. Are you even able to get out of bed?? My gosh, woman. How does a person get all of those conditions????
Lyme at least is capable of screwing with the immune system quite a bit, and a recent paper has shown that the effects extend to the response to virus vaccines. So I wouldn't be surprised if Herpes viruses which are known to remain latent in the body are able to come out and have a party.
 
Messages
38
I find it very difficult to distinguish between POTS symptoms and my need for Fludro.

What is POTS?

So I wouldn't be surprised if Herpes viruses which are known to remain latent in the body are able to come out and have a party.

Oh, that is quite interesting. I will have my IgenX Lyme results back in about a week along with the other infectious/viral tests, and I'm utterly dying to know if anything turns up. I was tested for EVB and was negative but that was right at the start of this journey 6.5 years ago, and maybe that has changed. We'll know next week.

If I had to put money on this... I think that I do not have Lyme at all, but that I DO have a gut pathogen. That's my guess. You lovely people are my witnesses.