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MDS Myelodysplastic syndromes

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Old Wed Jul 13, 2016, 10:52 PM
rar rar is offline
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Low Cortisol - Adrenal Fatigue

I have been experiencing fatigue lately. 3 months ago I could walk 4 miles comfortably. Noe I start getting fatigued at about 1/2 half mile, keep going and then nap for 2 hours. I had the following test, chest xray normal, O2 sat 99-100% most of the time, echo cardiogram normal, pulmonary function test - average reading 150% of normal, cortisol was 1.5 with a range of 4.3 to 22.4. Adrenal fatigue is a common side effect of transplant.

MDS transplant 2+ years ago. Severe GVHD of gut 5 months after transplant, moderate GVHD 1 year ago, eyes, skin, mouth. On prednisone 120 mg. tapered to 3.75 mg presently. Fatigue may have started with prednisone from 5 mg. to 4.75 mg.

Current Symptoms: fatigue, short of breath, dizzy, eyes photosensitive burning left, vision blanks out right with low blood pressure, dry mouth, low blood pressure, postural hypo tension (0 to 60 mm going from sitting to standing), scaly back, skin cancer, dental cavities, shaking, purple spots - bruising. Sounds worse than it really is. Doctor says I am in very good shape considering what I have been through.

I am looking for advice from any one with fatigue and / or cortisol problems and how was it treated.

Ray
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Old Thu Jul 14, 2016, 09:31 AM
Marlene Marlene is offline
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John had very bad fatigue too and some of the other problems you are experiencing. I would suggest getting your hormones checked, especially testosterone. John's testosterone was very low so his doctor started him on a bio-identical cream at a low dose and increased it once or twice. He didn't give him a dosage that would bring him up to the level of 25 yr old but more to a level to match his age. They should check your thyroid also.

He also started supplements to support his adrenal glands and mitochondrial. Adrenal glands need vitamin C and vitamin B5. There are nutrients that helped his mitochondrial....the body's power generators. Also consider upping your salt intake with a good sea salt and drinking fluids with electrolytes for the hypotension.

Prednisone will cause your adrenals to slow or shut down. That is why they don't stop it cold turkey. Your body needs time to restart it again. He had a doctor suggest replacing his cortisol with a natural cortisol much like those who have addison disease but John did not want to go that route.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.

Last edited by Marlene : Thu Jul 14, 2016 at 10:38 AM. Reason: Grammar fix
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Old Fri Jul 15, 2016, 10:17 AM
DanL DanL is offline
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Ray
i was diagnosed with adrenal insufficiency and had to begin taking testosterone and lower dose hydrocortisone. u your body produces about 10mg of cortisol per day. since you have been on higher dose prednisone your body is probably experiencing the insufficiency as it has not had to produce in a while. you can usually taper off eventually but it may take longer than you would like. my doctor moved me to hydrocortisone as it is a little less harmful than prednisone. you might look into that as an option and supplement your prednisone withdrawal to keep your energy level higher.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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