Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Jul 13, 2016, 11:52 PM
rar rar is offline
Member
 
Join Date: Mar 2014
Location: colorado
Posts: 215
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
Reply With Quote
  #2  
Old Thu Jul 14, 2016, 10:31 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
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.
__________________
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 11:38 AM. Reason: Grammar fix
Reply With Quote
  #3  
Old Fri Jul 15, 2016, 11:17 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
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.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Low Reticulocyte Count without Anemia alevoy18 Bone Marrow Failure 12 Sun May 29, 2016 11:40 PM
Low reticulocyte and lymphocyte - need help stilltired Bone Marrow Failure 4 Thu Sep 16, 2010 11:55 AM
Low Lymphocytes, low retic & lymph nodes swollen alevoy18 Tell Your Story 3 Thu Aug 26, 2010 08:50 AM
MDS Patient - How Long Can I take Care of My Home, Yard, etc. Catherine63 Questions and Answers 2 Thu Nov 6, 2008 11:42 PM


All times are GMT -4. The time now is 10:32 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org