Aa
Help! Does this sound like AI?
I'm sorry this is going to be a long post...unfortunately it is a long story!'ve been feeling lousy since at least December '09. At the beginning of December I had a sinus infection that turned in to a scary peri-orbital cellulitis landed me in the hospital. Since then I've been exhausted, run down and sick off and on and running low grade fevers. It took about a month after the hospital for my white counts to get to normal again. Since then I've had another sinus infection that was confirmed.Still feeling lousy and went to see several specialists. My white counts and platelets have been consistently high. I've been treated for suspected sinus infection once and had several ct scans of the sinuses. I've been on and off of antibiotics and it seems my counts go to normal after antibiotics only to rise again within a week or 2.
In April my low grade fever turned into a 102 temp, which sent me back to my internist. We ruled out sinus as the cause of high white counts and are now looking at other things. My counts have been all over the place. Monday at the internist's my white count was elevated, but by Tuesday when I went to see an infectious disease specialist they had returned to normal range. Monday's blood showed a very low TSH of .06 which was a thing new for me. I had'nt had my TSH tested in at least a year. She ordered the test and did an EKG because I had a very high heart rate, was "very agitated", have been complaining of stomach issues for a while and was not "myself" to her. My internist didn't think this is the reason for the high white counts and the fevers but referred me to an endocrinologist and I had an appointment a few days later. She also ordered additional thyroid tests that seemed to rule out Grave's disease.
Went to the endo.. He ran a bunch more bloodwork. TSH was fine as well as the antibody tests. No Grave's. I had asked him to run a cortisol test which he did. I had once been told that I had Low Cortisol, so i was curious how this would turn out. At that point it was actually in the high range. He told me at the time (this was back in May) that he thought it was Silent Thyroidosis that we would follow up on in 4-6 weeks. Fast forward to now-I've still have the low grade temp and absolutely NO energy. I can't get enough sleep...very unlike me. No appetite. Night sweats, which are new. Irritated eyes all the time. I've been through the ringer with testing...countless blood tests, 3 different CT of sinuses, CT of pelvis/abdomen, chest X-ray, upper GI, echocardiogram, bone marrow biopsy, pelvic ultrasounds, Gallium Scan, etc. All are normal. I've been called a "medical mystery" by my internist as well as the many specialists that I've seen. Infectious Disease doctor just referred me back to Endo as his follow up on TSH showed it to be "Hyper" again and he is attributing my symptoms to this. Endo rechecks it and it is totally normal, however my Cortisol is now LOW again. I am going back on Monday or Tuesday for some kind of Cortisol Stimulation test...I think they take blood, then inject me with something, then take blood again in an hour.
So--here are a few questions--1) Does this all sound like it could be Adrenal Insufficiency? 2) While I am there, should I ask the doctor to run any other blood work? 3) Any questions I should be asking him about? 4) Any good places to research this? I think I am going to seriously lose my mind if they can't figure this out. I really need some answers.
To anyone who made it this far, THANK YOU so much for reading and for any input you can give me!
In April my low grade fever turned into a 102 temp, which sent me back to my internist. We ruled out sinus as the cause of high white counts and are now looking at other things. My counts have been all over the place. Monday at the internist's my white count was elevated, but by Tuesday when I went to see an infectious disease specialist they had returned to normal range. Monday's blood showed a very low TSH of .06 which was a thing new for me. I had'nt had my TSH tested in at least a year. She ordered the test and did an EKG because I had a very high heart rate, was "very agitated", have been complaining of stomach issues for a while and was not "myself" to her. My internist didn't think this is the reason for the high white counts and the fevers but referred me to an endocrinologist and I had an appointment a few days later. She also ordered additional thyroid tests that seemed to rule out Grave's disease.
Went to the endo.. He ran a bunch more bloodwork. TSH was fine as well as the antibody tests. No Grave's. I had asked him to run a cortisol test which he did. I had once been told that I had Low Cortisol, so i was curious how this would turn out. At that point it was actually in the high range. He told me at the time (this was back in May) that he thought it was Silent Thyroidosis that we would follow up on in 4-6 weeks. Fast forward to now-I've still have the low grade temp and absolutely NO energy. I can't get enough sleep...very unlike me. No appetite. Night sweats, which are new. Irritated eyes all the time. I've been through the ringer with testing...countless blood tests, 3 different CT of sinuses, CT of pelvis/abdomen, chest X-ray, upper GI, echocardiogram, bone marrow biopsy, pelvic ultrasounds, Gallium Scan, etc. All are normal. I've been called a "medical mystery" by my internist as well as the many specialists that I've seen. Infectious Disease doctor just referred me back to Endo as his follow up on TSH showed it to be "Hyper" again and he is attributing my symptoms to this. Endo rechecks it and it is totally normal, however my Cortisol is now LOW again. I am going back on Monday or Tuesday for some kind of Cortisol Stimulation test...I think they take blood, then inject me with something, then take blood again in an hour.
So--here are a few questions--1) Does this all sound like it could be Adrenal Insufficiency? 2) While I am there, should I ask the doctor to run any other blood work? 3) Any questions I should be asking him about? 4) Any good places to research this? I think I am going to seriously lose my mind if they can't figure this out. I really need some answers.
To anyone who made it this far, THANK YOU so much for reading and for any input you can give me!
Just make sure you get copies of everything - it helps to know what was done and to compare what was done.
I have copies of most (still working on getting all) of my tests...which numbers are you interested in?
Sounds like you've had a tough time...I'm sorry about that!
Sounds like you've had a tough time...I'm sorry about that!
LOL... panhypopit - aka panhypopituitary means most if not all pituitary hormones are low or non-functional. I have to replace pretty much all my hormones - all but one.
Seds show you do have inflammation somewhere - but it sounds like you are tested piecemeal...
Do you have a copy of the testing?
Seds show you do have inflammation somewhere - but it sounds like you are tested piecemeal...
Do you have a copy of the testing?
Thanks Rumpled. I know I was tested for Grave's a couple months ago with the antibodies and didn't have it. Not sure about Hashimoto's. At the time the doctor said "silent thyroiditis".
Unfortunately I didn't see the doctor today, just had the test done. Will talk later in the week when the results come in. I've had a bunch of Sed's and CRP's. Sed has been coming back high, but CRP has been ok. I had an ultrasound of the thyroid, which was pretty normal. He thought he might have seen a tiny cyst, but said he had to squint to even see it and wasn't concerned.
What on earth is panyhypopit?
Unfortunately I didn't see the doctor today, just had the test done. Will talk later in the week when the results come in. I've had a bunch of Sed's and CRP's. Sed has been coming back high, but CRP has been ok. I had an ultrasound of the thyroid, which was pretty normal. He thought he might have seen a tiny cyst, but said he had to squint to even see it and wasn't concerned.
What on earth is panyhypopit?
TSH is a pituitary test. There are many reasons it can vary - it can be a pituitary reason, or it can be thyroid - after all, it is in the thyroid loop and it is a pituitary hormone. However, for some very very odd reason, doctors seem to forget all they learn in school and test perhaps one thing or two instead of looking for the source of anything. Sorry for the rant.
As for blood tests - find out what your thyroid is doing - antibody test for both Hashimoto's and Grave's diseases, Free T3, Free T4 and TSH.
For the pituitary - ACTH (the other end of cortisol - when you do cortisol, ACTH should be done too), cortisol, LH, FSH, prolactin... if you are having female issues - estradial, testosterone, dhea sulfate, SGBH, etc.
Finish out adrenals with renin and aldosterone. You may need stuff like SEDs and CRPs and other tests for the immune system. The rheumy may have run those.
A fully body CT usually does not go high enough to hit the pit, nor will it have the resolution needed to pick up a teeny tumor like a pit tumor. Pit MRIs have to be done a certain way to get them or even they miss a lot of tumors.
I am panyhypopit. It may be that you need the thyroid meds- and an ultrasound to look at the puppy to see if it is ok - and you may start to feel a tiny bit better.
As for blood tests - find out what your thyroid is doing - antibody test for both Hashimoto's and Grave's diseases, Free T3, Free T4 and TSH.
For the pituitary - ACTH (the other end of cortisol - when you do cortisol, ACTH should be done too), cortisol, LH, FSH, prolactin... if you are having female issues - estradial, testosterone, dhea sulfate, SGBH, etc.
Finish out adrenals with renin and aldosterone. You may need stuff like SEDs and CRPs and other tests for the immune system. The rheumy may have run those.
A fully body CT usually does not go high enough to hit the pit, nor will it have the resolution needed to pick up a teeny tumor like a pit tumor. Pit MRIs have to be done a certain way to get them or even they miss a lot of tumors.
I am panyhypopit. It may be that you need the thyroid meds- and an ultrasound to look at the puppy to see if it is ok - and you may start to feel a tiny bit better.
Thanks for your response.
My weight is down...I am very thin and have NO appetite. I have to force myself to eat. I'm 44 years old, about 5" 3' and 105. I'm actually surprised that I don't weigh less based on what I eat. BUT, I do get uncontrollable late night (really middle of the night) sugar cravings that I absolutely indulge!
I haven't had an MRI of the pituitary yet. Do you know if a Gallium Scan (which is a whole body scan) would pick up something with the pituitary?
In May my TSH was .06 one day and then .23 a few days later. It got up into normal range at some point and then in June was back to .35. According to the endo, who I saw last week it was back in normal range again. My infectious disease doctor was pushing for him to treat me for the Thyroid since he hasn't been able to come up with anything else. I am actually glad he is not going to do that...it seems like if he does I will end up on Syntharoid for life if he ends up suppressing it too much or at all!
When I originally saw the Endo in May my cortisol was slightly high at 19. And then this week it was (I think if I remember correctly) 3.
The thing about the cortisol is that I was told a year ago that it was very low. I saw a doctor that specialized in hormones (I think he was a GYN) a few times and ended up ditching him because I felt like he was pushing too many of "his" products on me.
Are there any other reasons that cortisol and/or TSH would vary so much? I am suppose to go for the stim test either tomorrow or Tuesday. Is there a certain time of the day that gives a better picture of what is going on? Do you think there are any other blood tests I should request while I am already there? Thanks for our input...sounds like you have been through a lot and know what you are taking about.
My weight is down...I am very thin and have NO appetite. I have to force myself to eat. I'm 44 years old, about 5" 3' and 105. I'm actually surprised that I don't weigh less based on what I eat. BUT, I do get uncontrollable late night (really middle of the night) sugar cravings that I absolutely indulge!
I haven't had an MRI of the pituitary yet. Do you know if a Gallium Scan (which is a whole body scan) would pick up something with the pituitary?
In May my TSH was .06 one day and then .23 a few days later. It got up into normal range at some point and then in June was back to .35. According to the endo, who I saw last week it was back in normal range again. My infectious disease doctor was pushing for him to treat me for the Thyroid since he hasn't been able to come up with anything else. I am actually glad he is not going to do that...it seems like if he does I will end up on Syntharoid for life if he ends up suppressing it too much or at all!
When I originally saw the Endo in May my cortisol was slightly high at 19. And then this week it was (I think if I remember correctly) 3.
The thing about the cortisol is that I was told a year ago that it was very low. I saw a doctor that specialized in hormones (I think he was a GYN) a few times and ended up ditching him because I felt like he was pushing too many of "his" products on me.
Are there any other reasons that cortisol and/or TSH would vary so much? I am suppose to go for the stim test either tomorrow or Tuesday. Is there a certain time of the day that gives a better picture of what is going on? Do you think there are any other blood tests I should request while I am already there? Thanks for our input...sounds like you have been through a lot and know what you are taking about.
Cortisol going up and down points to a cyclical or episodic form of Cushing's syndrome.
Is your weight up, or down?
Symptoms of high and low cortisol can overlap as far as poor immune system, fatigue and other things. No one has all the symptoms of either end perfectly (I have met skinny people with Cushing's and not skinny people with Addison's). The stim test may or may not tell you what is up - I *failed* all of them but I had cyclical Cushing's so no test is perfect.
Your TSH shows central hypothyroidism - and usually high cortisol suppresses TSH - so you may have a thyroid issue, or a cortisol issue suppressing the TSH. If the cortisol cycles, so will the TSH - my TSH used to bounce like crazy. I had every color synthroid.
Any MRIs of the pituitary?
Is your weight up, or down?
Symptoms of high and low cortisol can overlap as far as poor immune system, fatigue and other things. No one has all the symptoms of either end perfectly (I have met skinny people with Cushing's and not skinny people with Addison's). The stim test may or may not tell you what is up - I *failed* all of them but I had cyclical Cushing's so no test is perfect.
Your TSH shows central hypothyroidism - and usually high cortisol suppresses TSH - so you may have a thyroid issue, or a cortisol issue suppressing the TSH. If the cortisol cycles, so will the TSH - my TSH used to bounce like crazy. I had every color synthroid.
Any MRIs of the pituitary?
Have an Answer?
You are reading content posted in the Adrenal Insufficiency Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
