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Post by garcia on Feb 21, 2009 18:09:28 GMT -5
Hi, my first post here. I've been suffering from pretty severe adrenal fatigue for many years. I have CFS and my adrenal fatigue is preventing me from undertaking any kind of recovery, as pretty much all therapies (e.g. detox, antibiotics etc.) cause too much stress on the adrenals.
So basically all I do is go from one adrenal crash to the next, which is really no way to live a life. I'm pretty much unable to function.
I've tried hormones before (h/c, prednisolone), but I don't do well on them. Although sometimes they make me feel better, a lot of the time they make me feel worse. I get side effects even at very low doses, and basically they just don't feel right.
So I guess my number one question is, are there people who have severe adrenal fatigue, but who don't do well on steroids? What are such people supposed to do? I'm sure you guys all know the complete and utter living nightmare that adrenal fatigue is.
Any help much appreciated! garcia.
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Post by sallycinnamon on Feb 22, 2009 0:29:03 GMT -5
Hi Garcia, Can you provide some more specific info about how long, what dosing of the meds you were doing? Sometimes, people are actually on a dose that is too low and causes worsening of symptoms.
I can relate to how you feel - my brother had CFS twenty years ago, both my mum and I have adrenal fatigue and I've had about 4 serious crashes in the last few years and am struggling to get my life back together.
cheerio
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Post by garcia on Feb 22, 2009 6:24:26 GMT -5
I've used any and all dosages from say 2.5mg h/c to 20mg h/c (or 5 mg prednisolone). It wasn't that I was underdosing since most of my symptoms / side-effects were of excess cortisol. How long? I've tried steroids on and off for 3 years. The longest I was on was probably around 2 months.
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Post by Lethal Lee on Feb 22, 2009 11:36:26 GMT -5
Hi Garcia,
Are you a male? I ask because 20mg HC or equiv is a very low dose & unlikely to be adequate even for a woman. We find at least 25 mg HC is needed & often more. Initially Men tend to need at least 30mg HC.
How severe is your Adrenal Fatigue? Have you had 8am Cortisol & Serum ACTH tested? What about an ACTH Stim test and 4 x Saliva Test?
If above showed need for Cortisol HRT but the steroids made you feel worse in addition to probably too low dosing & not finding the right schedule (multi dosing 4-5 times a day, tapering over the day) there are other possibilities.
One is low Aldosterone causing low Sodium & Sodium/Potassium imbalances. Did you test Aldosterone, Renin, Sodium & Potassium? Did you do regular unrefined Sea salt supping? Was Sodium & Potassium optimised? HC does have some Aldo like properties too which may be a problem for some. Prednisolone has very little & Medrol virtually none.
Another possibility is other deficiencies. Like Iron/Ferritin, Vit D, Vit B12, RBC Folate, Magnesium, VIt C, other B- Vits. Were these optimised?
Yet another possibilty is the interaction between Thyroid & Adrenals. If low Cortisol is replaced by Cortisol HRT it may cause dumping of Free T3 hormones if they have pooled in the blood due to lack of Cortisol . Yet another possibility is that once on Cortisol HRT that you become MORE Hypothyroid due to using the Thyroid Hormones you do have up hence lower levels of FT4 & FT3. Possibly you needed to do Thyroid meds as well? Have you had Thyroid Frees & Antibodies tested? Are you on Thyroid Meds?
What about Sex Hormones? Were these tested including Estradiol, Free Testosterone, SHBG, DHEAS, LH & FSH? Taking Adrenal meds will cause a lowering of DHEA & hence DHEAS & Testosterone. If these were low to begin with then further lowering may have big impact on you. Possibly may need DHEA and/or Testosterone HRT as well.
So you see there are many possibilities & without more detailed history, Labs, symptom details, med & supp details is impossible to further advise you!!!
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Post by garcia on Feb 22, 2009 13:36:52 GMT -5
Hi Lee, yes I'm male (but I'm only around 135lbs).
How severe is your Adrenal Fatigue? Subjectively on a scale of 1-10, I'd say it was a 9.5 It is severe enough to affect every aspect of my life.
Have you had 8am Cortisol & Serum ACTH tested? What about an ACTH Stim test and 4 x Saliva Test?
I live in the UK, so testing is somewhat difficult. I haven't had any serum tests. I haven't had an ACTH Stim test either. I did have a 4xSaliva test done 4 years ago (when my adrenal fatigue was milder) and I passed (which made me lose confidence in tests).
I can get another 4xSaliva test done this week if you think it will help.
> Did you do regular unrefined Sea salt supping?
Yes I regularly take unrefinded sea salt. It helps mildly.
> Another possibility is other deficiencies. Like Iron/Ferritin, Vit D, Vit B12, RBC Folate, Magnesium, VIt C, other B- Vits. Were these optimised?
My D levels have been low, but over the last year or two I've supped with a high dose. B12 & Folate I know has been off due to methylation cycle defects. I've started supping those too. I have to go easy with both D and B12/Folate though because they cause bacterial kill, which leads to inflammation, which leads to adrenal crash if I'm not careful. My ferretin was 122ng/ml (20-300). My nutrition is generally really good. I take lots of supps, high dose B vits, Vit C, Magnesium etc.
> Possibly you needed to do Thyroid meds as well? Have you had Thyroid Frees & Antibodies tested? Are you on Thyroid Meds?
Yes I'm certainly hypothyroid. I'm unable to take any meds though (e.g. t3 / iodine) because they make my adrenals crash. Haven't had any testing (but its obvious from symptoms e.g. low body temp). My main problem are adrenals though - if I could sort adrenals out, thyroid would be easy to deal with.
> What about Sex Hormones?
I've had testosterone measured. It was low at 90 pg/mL (70-250) The range was for "adults" so presumably not age-specific.
Here are some of my symptom details: I have dramatic loss of hair on outer part of ankles, but no where else (supposed to be unique marker for adrenal fatigue). My body clock is askew. I wake up at 11am and sleep at 12:30am. I eat bfast at 12pm, lunch at 4pm and dinner at 9pm (if I try and eat dinner earlier, I get marked hypoglycemia in the evening). I'm physically extremely weak. I'm about 1 stone underweight, and I can't put any weight on whatsoever. I have a super-exaggerated startle response, to the extent that I lock my room door to stop people "bursting in" on me. I can't stand loud noises. Sometimes when I tak e h/c the way I walk physically changes. I'm unable to exercise - either aerobic or weights (recently when I took h/c I was able to lift weights for the first time in years. I tried it again but didn't work). Whenever I get any kind of inflammation from bacterial kill I lose all energy whatsoever and need to sleep in the afternoon. Just generally have no energy, can not even start tasks let alone complete them. Mentally dull. Tired, tired, tired. Respond very poorly to any kind of stress - be in psychological stress, or even temperature change. Loss of confidence. Loss of self identity.
Sorry I could go on, but feeling exhausted! Please bear with me and let me know if you need additional info.
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Post by garcia on Feb 22, 2009 14:18:36 GMT -5
Poor digestion (this has improved in the past with h/c). Poor immunity. Candida/dysbiosis. Sluggish bowels. High cortisol at night. Very prone to (and intolerant of) inflammation. I also have mild hyperpigmentation on my upper arms - not 100% sure if this is adrenal, but it fits.
Also have sympathetic dominance (parasympathetic system is underactive).
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Post by garcia on Feb 23, 2009 6:03:59 GMT -5
Any ideas?
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Post by lynnhopes on Feb 25, 2009 17:05:55 GMT -5
I still think 20mg is too low a dose, especially for a man. I am a 170lb female and I felt much worse on 20mg. At 30mg I feel great. Have you been tested for any adrenal or pituitary tumours?
Getting another salivia test done would also be good I think.
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