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Cortisol 1.1 and we are very confused
My husband went to doctors in January with numbness on his upper lip and numbness in his right nostril. He had a fever. They thought it was a sinus infection or possibly beginning of shingles. Numbness went to entire right side of face (like a dental deadness). To make a long story short, it turned out to be an AVM in the pons area of the brain stem. Very rare according to 2 neurologist. The thing that was bothering everyone was the fever. It persisted for over 2 months. Finally went to GP and he ran a series of test. It came back low potassium, low Vit D, Low thyroid and low cortisol (3.5mg - range 5-23). He was concerned with the many symptoms and sent him to a endo doctor.
Let me say, I don't like this know it all very much. The first thing he said was that he did not see why we were sent there. He was not finding much wrong and hardly anything but the thyroid was low. I got upset and told him that he has had a fever now for 4 months and it won't go away. The fever ranged from 99.1-100.9. Up and down during the day. He started running different test including cortisol which he said was 8.3, 8.5 then did a cortisol stimulation test which he said was normal also. He put him on Synthroid 50mcg and said to come back in 2 months. At that time he also ran the testosterone and said his free testoerone was low. Regular testosterone was 475 which was good. We were also seeing the neuro at the same diagnostic clinic which ran another brain MRI so he also focused in on the pituitary to check for tumors. Nothing there. We came back and he said that he was going to put him on testosterone gel but we needed to see if our insurance would pay for it or he would do the injections. I asked what he thought he had. He smugly said old age. Low testosterone and a low thyroid. Completely unrelated and nothing to worry about. We had also brought a 24 hr urine sample for the cortisol test. That is not back yet.
Anyway, we got home and called back about the insurance for the gel and the nurse said that he probably was not going to treat the testosterone now that his cortisol was critically low (he was just doing the test to please me by this time). They take it x2. It was 1.1 and 1.2. They wanted to do a cortisol stimulation test as soon as possible. What aggrivated me even more is they have the slowest lab in the world. We have to drive 3 hours to this place and take off work to do so. They could have called us before we got all the way home, so we are trying to have it run in our town.
My question is that he really has no symptoms. I have read about cortisol but it seems to always address high but not much about low. He does have racoon eyes, dark around the eye sockets. He is losing weight. 43 pounds since January at the initial appointment for the numbness. He is also not sleeping but about 3 hours and taking a lot of 15 minute naps but no restful sleep. He was suppose to have some dental work Monday but dentist said not now. I really don't understand what is happening. I believe that he has Hashi's thyroiditis. The fever and the big thing is he became anaphylectic with wheat out of nowhere about 3 years ago. He IS on a strict gluten free diet because of this. He never was one to go to the doctor unless he had something so standard blood test have almost never been done on him. He could have had this for a very long time. I read where an adrenal tumor could be causing the suppression. I read where they could cause it to rise. Confusing. He also has blood in his urine and has been there for a while. It appeared on his semi annual DOT exams the past 4 years. Now I am worried that it may also be cancer somewhere. I am also confused as to why in April he had a low cortisol, normal for months then Monday was 1.1. He looks like walking death now, all shriveled up like someone sucked all the water out of him. It is more than weight loss.
Any feedback would be appreciated.
Let me say, I don't like this know it all very much. The first thing he said was that he did not see why we were sent there. He was not finding much wrong and hardly anything but the thyroid was low. I got upset and told him that he has had a fever now for 4 months and it won't go away. The fever ranged from 99.1-100.9. Up and down during the day. He started running different test including cortisol which he said was 8.3, 8.5 then did a cortisol stimulation test which he said was normal also. He put him on Synthroid 50mcg and said to come back in 2 months. At that time he also ran the testosterone and said his free testoerone was low. Regular testosterone was 475 which was good. We were also seeing the neuro at the same diagnostic clinic which ran another brain MRI so he also focused in on the pituitary to check for tumors. Nothing there. We came back and he said that he was going to put him on testosterone gel but we needed to see if our insurance would pay for it or he would do the injections. I asked what he thought he had. He smugly said old age. Low testosterone and a low thyroid. Completely unrelated and nothing to worry about. We had also brought a 24 hr urine sample for the cortisol test. That is not back yet.
Anyway, we got home and called back about the insurance for the gel and the nurse said that he probably was not going to treat the testosterone now that his cortisol was critically low (he was just doing the test to please me by this time). They take it x2. It was 1.1 and 1.2. They wanted to do a cortisol stimulation test as soon as possible. What aggrivated me even more is they have the slowest lab in the world. We have to drive 3 hours to this place and take off work to do so. They could have called us before we got all the way home, so we are trying to have it run in our town.
My question is that he really has no symptoms. I have read about cortisol but it seems to always address high but not much about low. He does have racoon eyes, dark around the eye sockets. He is losing weight. 43 pounds since January at the initial appointment for the numbness. He is also not sleeping but about 3 hours and taking a lot of 15 minute naps but no restful sleep. He was suppose to have some dental work Monday but dentist said not now. I really don't understand what is happening. I believe that he has Hashi's thyroiditis. The fever and the big thing is he became anaphylectic with wheat out of nowhere about 3 years ago. He IS on a strict gluten free diet because of this. He never was one to go to the doctor unless he had something so standard blood test have almost never been done on him. He could have had this for a very long time. I read where an adrenal tumor could be causing the suppression. I read where they could cause it to rise. Confusing. He also has blood in his urine and has been there for a while. It appeared on his semi annual DOT exams the past 4 years. Now I am worried that it may also be cancer somewhere. I am also confused as to why in April he had a low cortisol, normal for months then Monday was 1.1. He looks like walking death now, all shriveled up like someone sucked all the water out of him. It is more than weight loss.
Any feedback would be appreciated.
I would go to a neuro-endo at a pituitary center. It sounds like your endo is not up to the job and your husband is having a complex issue.
The health pages have lists of doctors in some of the pages - I would start there. It sounds like he needs some endocrine support ASAP. Be sure you get copies of his current testing - and move on. Then get copies of everything as you go on anyway.
Do let us know how it goes. It could be a sudden low adrenal issue as well as other issues but the doc needs to find the reason.
The health pages have lists of doctors in some of the pages - I would start there. It sounds like he needs some endocrine support ASAP. Be sure you get copies of his current testing - and move on. Then get copies of everything as you go on anyway.
Do let us know how it goes. It could be a sudden low adrenal issue as well as other issues but the doc needs to find the reason.
I would go to a neuro-endo at a pituitary center. It sounds like your endo is not up to the job and your husband is having a complex issue.
The health pages have lists of doctors in some of the pages - I would start there. It sounds like he needs some endocrine support ASAP. Be sure you get copies of his current testing - and move on. Then get copies of everything as you go on anyway.
Do let us know how it goes. It could be a sudden low adrenal issue as well as other issues but the doc needs to find the reason.
The health pages have lists of doctors in some of the pages - I would start there. It sounds like he needs some endocrine support ASAP. Be sure you get copies of his current testing - and move on. Then get copies of everything as you go on anyway.
Do let us know how it goes. It could be a sudden low adrenal issue as well as other issues but the doc needs to find the reason.
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