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Suffering from Low Cortisol, please help

I've been suffering from exhaustion, sleep apnea, fatigue, for months now.  I've had low cortisol with these labs:
2.4mg 1pm, 4.0mg AM level
I feel much better and can rest and breathe better on 25-50mg/day of Hydrocortisone and I've been trying pregnenelone at 100-150mg/day.  Should I only be taking 25mg HC/day?  thanks very much
47 Responses
Avatar universal
COMMUNITY LEADER
Are you under the supervision of a doctor? High amounts can cause you to temporarily feel more energized but the energy is false - it is steroid induced Cushing's and the steroids will be damaging your body while you have a lot of energy.

When replacing steroids, it is important to replace just enough and not too much. The amount can vary if you have other disorders.
Avatar universal
thanks for the replies.  I went to 2 endos but they still wanted more testing in 3 weeks and I was having exhaustion and breathing problems...the HC doesn't give me more energy- it only helps me to breathe better and relax
isn't 50mg of HC equivalent to 10mg of prednisone?  I've taken 2 courses of prednisone in the past a few months ago
Avatar universal
I read that 50mg HC is equivalent to 10mg prednisone which I think is what I was on before when I took prednisone for 2 weeks
theoretically isn't the HC supposed to let your adrenals rest and heal when they are fatigued?
Avatar universal
COMMUNITY LEADER
50mg is HC = 12.5 mg prednisone. Pred is long acting, HC is short acting.

No, HC does not let your adrenals heal and rest. Replacement causes them to atrophy.
http://library.med.utah.edu/WebPath/ENDOHTML/ENDO003.html
The adrenals at the top atrophied when they were replaced.

Adrenals do not fatigue. Why should one gland out of your entire body fatigue when it is built to last a lifetime? Unless it is diseased, it will last out your lifetime just like the rest of your body.
Avatar universal
so at what time period after taking HC do they atrophy, is it 3 weeks?  
well it's one theory that from too much stress the adrenals can get fatigued- I have low cortisol but not from steroids, what could cause that?  thanks!
Avatar universal
I was perfectly healthy until last year and so months after the methylprinosolone I noticed I was having breathing problems/exhaustion despite being on symbicort/proventil/singulair asthma meds.  I took 25mg of HC and I could breathe better and my feet started to feel warm, I felt normal for the first time in months
Avatar universal
but still the HC doesn't help my sleep apnea and it's hard to use CPAP
Avatar universal
You mention sleeping problems. Do you take the HC close to bedtime? If so I suggest taking it several hours before bedtime. Take some HC in the morning and some in the early afternoon
Avatar universal
I usually take it in the morning- so do I have some kind of inflammation?  I have asthma too.  Is my sleep apnea from low cortisol or stress?  I have complex sleep apnea which includes central apnea
Avatar universal
COMMUNITY LEADER
Inflammation is usually diagnosed by other tests like SED, ANA, CRP and other tests.

Sleep issues can also be caused by high cortisol at night - that is what caused my sleep issues. I had low cortisol in the morning (like you) but my cortisol was high at night and so it prevented me from sleeping well.

Asthma medications (and you were on several steroid forms) can go either way - I have met those where the meds caused atrophy or others where the meds triggered Cushing's.

There is no one, simple answer and you must see a doctor. This cannot be answered on the internet.
Avatar universal
thanks very much for the replies!  well even on the inhalers I was having this trouble breathing, inability to relax and then after starting the HC I was suddenly better, could rest and relax
Avatar universal
When you seek a referral for an endo, ask for one who focuses on or at least has a strong interest in ADRENAL function. Most endos focus on diabetes as that is where the money is by virtue of it being far more common than adrenal failure in patients.

If possible, see if a major hospital located near you is highly rated for its internal medicine team. And if so, that is where I would go.

One more thing. To make sure your visit to the endo is valuable I suggest you (a) on a sheet of paper, summarise ALL your symptoms (type and duration), regardless of whether you feel they are interrelated and (b) have many questions ready.
Avatar universal
yeah my first endo I went to seemed ok but then he wanted me to wait weeks to retest after I had 2 low cortisol tests and he gave me no diet guidelines and after a few weeks gave me some Vit D and suggested Coq10.  can you get adrenal insufficiency from taking 3 pills/day of adrenal glandular, solaray adrenal tissue?  can it really affect test results?
my other doctor told me that the HC 50mg is ok for 5 days for a total of 2 weeks every 3 months
Avatar universal
I mean only 50mg for 5 days and then 25mg for the rest of the 2 weeks
Avatar universal
The endo who wanted to retest you after a few weeks is correct. Cortisol is not something you want to test very soon. Often it will be 2- 3 months between tests.

Vit D - what is your reading?
CoQ10 did nothing for me when I was on it. Frankly it was a waste of money.

Diet - I was never given diet guidelines so don't see the fact that you didn't either as odd.

Dosage - you say you were recommended 50mg HC for 5 days and then 25. Please understand that withdrawal symptoms (ie from lowering the dose) are VERY common. Even slight symptoms are evident when dosage is tapered off slowly. I assume/hope your doctor said you should move from say 50 mg on the 5th day to 40 mg on the 6th day. AND not go from 50 to 25 in one go. In my experience tapering off from say:

50 to 40 to 35 to 30 to 25 mg will minimise or eliminate any withdrawal symptoms. Note HC is not addictive per se but your body does crave it.

Note you can't just stop after 2 weeks at 25. You must wean yrself to zero HC over say another 2 weeks.
Avatar universal
COMMUNITY LEADER
The problem with the adrenal tissue supplements is lack of information as to what dose they are - there is no calculator that I can find that says they are equal to xmg of HC - so you could be under dosing or over dosing.

Tapering or weaning of doses takes time! For 50mg, that would take me up to 6 months to go down off of in some cases to do safely - and the emphasis is SAFELY. You do not want to do this quickly and risk an adrenal crisis as you can die. HC is not addictive however doses that have suppressed the adrenals - like 50mg - need to be handled carefully so that the adrenals wake up and function before you taper down. If you feel sick - you have to get help.

25mg in 2 weeks! I beg to differ - that is when the adrenals are suppressed and you have to wake them up. That is a very potentially dangerous time. Taper carefully. I suggest doctor supervision - as she said, an adrenal doctor.
Avatar universal
thanks very much for the replies!  I had no idea you could get atrophy so easily from HC.
yeah the Coq10 doesn't do anything for me- maybe vitD is ok though.  I've been trying pregnenelone but I'm not sure if it helps but a lot of people seem to say it works and can be a replacement for HC.
ok so I will try to taper down after week 2/25mg to lower doses for 2 weeks
thanks again!
Avatar universal
my endo told me that my cortisol problems were from high insulin from too much refined sugar intake (white sugars, soda, white bread) and that I needed to change to dark breads and long term sugars so that I wouldn't get these insulin spikes
Avatar universal
what helped me a lot was the raw thyroid glandulars from natural sources which has thyroid and adrenal tissue from cows but my issues may be completely different from yours- they helped me to finally breathe better and relax
Avatar universal
but the insulin theory doesn't seem to make sense to me- then wouldn't everyone who drinks a lot of soda be sick with cortisol problems but I don't think that's the case
Avatar universal
Two points:


1. Regarding tapering off HC I defer to rumpled on this. Follow HER advice please.
2. Regarding your doctor saying to ease off sugar. I have some insight.  For a totally UNRELATED reason I started a diet (was on it for one month) with minimum sugar. Not to say I eliminated it altogether but I greatly reduced my consumption of it and guess what? I felt brilliant. I have no idea of the connection between sugar and low cortisol but lowering sugar intake worked for me. You can start on this road by axing any cereal you have for b/fast and replace it with say toast. NOT fruit as that usually contains high levels of sugar.
Avatar universal
COMMUNITY LEADER
High cortisol can also cause high insulin.
Every body breaks down sugar differently - for instance I had high cortisol and never had high glucose. However GH raised my glucose.
It is always good to cut down on sugars and eat well. Eat more protein too.
Avatar universal
but all my tests show low cortisol.  why can't I take higher doses of HC for low cortisol?  I could have a cortisol level 30 times my level and I would still be in range.
Avatar universal
don't people take steroids long term for arthritis?  
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