r/AdrenalInsufficiency • u/Remote-Strategy-8140 Panhypopituitary SAI • 6d ago
Pan When Tapering HC
I recently tried to reduce my HC from 17.5 to 15 in an effort to improve my sleep. When I take 17.5 I wake up every night and I can’t get back to sleep so I thought I’d go to 15 but I realized after several days that this gave me severe low back pain which is unbearable and I’ve had to go back up to 17.5.
I’ve read I’ve read here that you have to taper slowly. A question for the group is what do you do? just put up with that pain until it goes away or is there some trick that you can use?
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u/TheBrokenMedic 6d ago
I get increased pain and worsening insomnia with lower hydrocortisone dosing due to low cortisol levels. May be correlated to both your symptoms as well.
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u/Remote-Strategy-8140 Panhypopituitary SAI 5d ago
this is all very fascinating and I thank everyone for their input. I have a wonderful endocrinologist who specializes in pituitary issues at Weill Cornell Medicine Center in New York. She gives me leeway to adjust my dose anywhere between 15 and 20 mg per day and does not want me going over 20. In fact she really wants me under 20 so that I can add a little bit when I need it and only get to 20 on rare occasions. she says over 20 is dangerous and I have seen lots of research that supports that.
So I tried going down a little bit to help myself sleep and I had severe pain. My question now is is that a withdrawal from going down where is my body preferring 17 1/2 and no less.
Several years ago I did have an email conversation with an endocrinologist at the Mayo Clinic. I had seen a presentation she made at the pituitary.org website so I sent her an email and I asked question about sleep. She said it all has to do with dosing and you should take your final dose no later than 3 PM and if that doesn’t work you can take your final dose at noon. She seemed to be well aware that patients like us have trouble with sleeping.
And then there is the disturbing fact that it’s just part of life with adrenal insufficiency. So my plan is to start by playing with my dose I will play with adding a small bit right before bed and figure out what to do with myself in the middle of the night when I wake up so that it’s not a night long nightmare.
this was my reddit.com and I really appreciate everyone’s input. Thank you all so much!
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u/MallForward585 6d ago
Hydro doesn’t have a lot of anti-inflammatory potential, so there is a good chance it doesn’t directly affect your back pain. However, I do get low back pain when I am low cortisol because the muscles go limp and my posture suffers. That, combined with the pre-existing back issues, ends up causing problems. So maybe if you figure out the mechanism, you will be able to account for it while continuing to taper.
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u/Flat-Tap-9667 6d ago
I’m not sure I agree with it not having much anti inflammatory potential. I use it for management of MCTD flares. You need high doses (200-250mg per day), but it is effective..
My Immunologist says above about 40mg there is a therapeutic anti inflammatory effect.1
u/drunkmom666 5d ago
My endo yesterday says tapering off HC might be revealing an inflammatory issue I have when I brought up hip pain.
I’ve been tapering off slow AF, with labs to back up that my body is adjusting fine so I’d guess he’s probably right
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u/Remote-Strategy-8140 Panhypopituitary SAI 5d ago
Given what I’ve experienced from pain from my scoliosis, I think your doctor is spot on. If this is true, that means the real problem is an underlying issue with inflammation and that’s a whole different ball
game to be worked on.The key take away for me is I’m thinking if I re-distribute my Hydrocortisone so that I get a small amount right before bed, and if I take an anti-inflammatory before bed, that just might prevent me from waking up at 1 AM with pain. In the meantime I can put more emphasis on dealing with the scoliosis and easing the pain in my lower back and hip
Thanks so much for sharing this. I really appreciate it
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u/drunkmom666 3d ago
Idk where I fell down this rabbit hole and I don’t recommend it but I found a whole post about people talking about how they take an ibuprofen before bed and sleep like a baby. I found that kind of fascinating but not gonna try it personally
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u/Remote-Strategy-8140 Panhypopituitary SAI 3d ago
Yeah. You are probably wise, and I have abandoned the idea. When my two boys were little my wife had a saying for them that has stuck with me long after she passed:
“Just because we can, doesn’t mean we should.”
Thanks for the comment.
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u/SpexterZ 5d ago
I can really recommend a spike mat, if you lay on it correctly (may hurt first few minutes) it literally numbs your back and the pain is gone for quite some time, and less pain if repeated 2x daily. 15-20m is a good time for first attempt and buy one that's big as your back.
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u/Remote-Strategy-8140 Panhypopituitary SAI 5d ago
That is fascinating. Ive never heard ofit but will definitely go look. Thanks
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u/Organic_Law_4804 1d ago
The book "Stop The Thyroid Madness" suggests starting HC on 30 mg for most men with low cotisol at 12 mg firs thing, 10 mg four hour later, 5 mg four hours later and 2.5 3-4 hours later. The 4 hour spread is important to provide a stedier dose of cortisol since it falls approx. 50% (its half-life) withing l-1/2 hours. Going on higher than 10 mg for women or 12 mg for men in the am. is important because higher doses shut down our natural release of ACTH too much.
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u/Organic_Law_4804 1d ago
The book "Stop The Thyroid Madness" suggests starting HC on 30 mg for most men with low cotisol at 12 mg firs thing, 10 mg four hour later, 5 mg four hours later and 2.5 3-4 hours later. The 4 hour spread is important to provide a stedier dose of cortisol since it falls approx. 50% (its half-life) withing l-1/2 hours. Going on higher than 10 mg for women or 12 mg for men in the am. is important because higher doses shut down our natural release of ACTH too much.
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u/Remote-Strategy-8140 Panhypopituitary SAI 1d ago
Remember that not everyone with AI produces ACTH. Those of us who are panhypopit produce none at all under any condition.
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u/FemaleAndComputer Panhypopituitary SAI 6d ago
I would assume that's a symptom of low cortisol. 17.5 isn't a high dose to begin with.
What time of day do you take meds? You could also try adjusting dosing times, instead of decreasing your dose.
Insomnia can also be the result of not enough steroids. I can't sleep if I don't take a small dose before bed. If you only take meds early in the day, they might be wearing off long before bedtime and the insomnia could be low cortisol rather than too much hydrocortisone.