- Messages
- 18
Hello new friends. I was hoping I could post some information and you could share some of your wisdom.
Firstly, I'm having trouble getting diagnosis and proper testing and I'm not sure what or where to go next. My CBC, blood counts, organs, and everything is pretty much normal, glucose, blood pressure. Thyroid tests have always come out normal. I ordered a diurnal cortisol test and the results are low in the morning. My vitamin D is also low and I can't get it to come up, even with supplements and sun.
Test Name Result Units Range
**Cortisol (saliva) 2.0 L ng/mL 3.7-9.5 (morning)**
Cortisol (saliva) 2.0 ng/mL 1.2-3.0 (noon)
Cortisol (saliva) 1.4 ng/mL 0.6-1.9 (evening)
Cortisol (saliva) 0.8 ng/mL 0.4-1.0 (night)
What does it mean to have low cortisol in the morning but normal in the day?
I have many of the same symptoms as fellow CFSers. I can barely move all day and have trouble getting anything done. Symptoms flare with eating, I have trouble with a variety of foods. I seem to have no stress response. I basically get weak or pass out if I get upset. Weakness standing. I have severe atrophy in the legs, not sure due to tumor (see below) or fatigue. However, I seem to not be able to stand when I feel weak or tired. It ceases when I am feeling better. I might have one good day a week where I'm fairly active, otherwise I loose weeks at a time to fatigue.
Sun helps. Exercise does, but I'm so tired I can hardly get up in the first place. If I do and can stay on my feet for say 10 mins, it'll help the weakness for a couple hours. Again, it's nearly impossible to get moving in the first place and the atrophy doesn't help.
I have a rare inter spinal tumor, it can't be cut out due to nerve inclusion. There is a cyst in the spinal cord too. When the surgeon went in and popped the cyst or relieved the spine pressure, the CFS symptoms nearly stopped. However, to keep the tumor from growing any more I underwent radiation, that's when the symptoms started back.
Radiation was suggested to stop tumor growth, but the side effect has been severe fatigue (cyst pressure came back with radiation and caused a second cyst). I do NOT have the issues on corticosteroids. My energy is up and I move around okay. Weight drops, skin is clear and hair thick. I was fine while I was going through the radiation, but after the med drop I've have CFS symptoms since. I think there is a probability that the cyst pressure could compress the adrenal nerve and be causing issues.
I'm not sure where to turn. My surgeon looks at my MRI only. If there's no tumor growth, he is disinterested in anything else. My GP and neurologist aren't equipped to deal with it. Does anyone have any suggestions as to some research or places to get started getting resolutions or answers? Best wishes!
PS I'm in the Phoenix AZ area, if anyone knows a good doc there.
Firstly, I'm having trouble getting diagnosis and proper testing and I'm not sure what or where to go next. My CBC, blood counts, organs, and everything is pretty much normal, glucose, blood pressure. Thyroid tests have always come out normal. I ordered a diurnal cortisol test and the results are low in the morning. My vitamin D is also low and I can't get it to come up, even with supplements and sun.
Test Name Result Units Range
**Cortisol (saliva) 2.0 L ng/mL 3.7-9.5 (morning)**
Cortisol (saliva) 2.0 ng/mL 1.2-3.0 (noon)
Cortisol (saliva) 1.4 ng/mL 0.6-1.9 (evening)
Cortisol (saliva) 0.8 ng/mL 0.4-1.0 (night)
What does it mean to have low cortisol in the morning but normal in the day?
I have many of the same symptoms as fellow CFSers. I can barely move all day and have trouble getting anything done. Symptoms flare with eating, I have trouble with a variety of foods. I seem to have no stress response. I basically get weak or pass out if I get upset. Weakness standing. I have severe atrophy in the legs, not sure due to tumor (see below) or fatigue. However, I seem to not be able to stand when I feel weak or tired. It ceases when I am feeling better. I might have one good day a week where I'm fairly active, otherwise I loose weeks at a time to fatigue.
Sun helps. Exercise does, but I'm so tired I can hardly get up in the first place. If I do and can stay on my feet for say 10 mins, it'll help the weakness for a couple hours. Again, it's nearly impossible to get moving in the first place and the atrophy doesn't help.
I have a rare inter spinal tumor, it can't be cut out due to nerve inclusion. There is a cyst in the spinal cord too. When the surgeon went in and popped the cyst or relieved the spine pressure, the CFS symptoms nearly stopped. However, to keep the tumor from growing any more I underwent radiation, that's when the symptoms started back.
Radiation was suggested to stop tumor growth, but the side effect has been severe fatigue (cyst pressure came back with radiation and caused a second cyst). I do NOT have the issues on corticosteroids. My energy is up and I move around okay. Weight drops, skin is clear and hair thick. I was fine while I was going through the radiation, but after the med drop I've have CFS symptoms since. I think there is a probability that the cyst pressure could compress the adrenal nerve and be causing issues.
I'm not sure where to turn. My surgeon looks at my MRI only. If there's no tumor growth, he is disinterested in anything else. My GP and neurologist aren't equipped to deal with it. Does anyone have any suggestions as to some research or places to get started getting resolutions or answers? Best wishes!
PS I'm in the Phoenix AZ area, if anyone knows a good doc there.
Last edited: