Aa
Not sure what to think
I don't know what to think and I'm about to give up...
I am a 37 year old female and have spent most of my life with very, very odd variety of symptoms. During my year in high school my mother began researching to find why I was experiencing these things and her research led her back to hypothyroid. She took me to the doctor at least twice a year tyring to get someone to help me but no one would. Finally, at the age of 34 I went to a new doctor who looked at the last ultrasound of my thyroid and said "your tsh levels may be in the normal range but not normal for you, why else would you have this walnut size tumor in the middle of your thryoid, that's probably been there sometime". Ahhh....finally a doc that thought and could logic something. I began taking thryoxine and although it made a difference in the tsh levels and the growth rate of the tumor it made little to no change in the symptoms. So my mom has continued to search and question. Last week she came to me with something called Cushings disease and said she wanted to me to take it to my doctor. I did and he is going to do a first thing blood test for my cortisol levels and decide whether I need to have further tests. At this point I am so tired and exhausted that I just don't want to go on anymore. I don't know what questions to ask, what tests he should run, if the blood cortisol level is normal do I drop it? Can someone here please give me direction? I am listing the symptoms I have had below some are old and some are showing up as each day passes. Thanks for listening and any advice you can give.
Weight gain (odd for what I eat)
strange hump between my shoulders, starts at base of neck
high blood pressure (this was out of no where my pressure was always low)
loss of strength (I lived in a two story house and would sometime have to pull myself up the stairs.
Hair growth - mostly a much thicker than normal peach fuzz on my face, but sometime I will wake up with strange random 1/2 inch hairs on my neck that was not there the night before.
Sleep attacks with sleep paralysis.
Round face (the picture I put on here show these difference)
Blurred vision (I have gone to eye doctor twice and they have found minor astygmatism, but really not even enough for glasses although I demanded glasses both times - I don't wear them because they don't help)
Random extreme dizziness
Cannot pay attention
Extreme memory loss (this just started in the last few months)
Most of my weight gain is in my abdomen and it is starting to hang down now.
I am a 37 year old female and have spent most of my life with very, very odd variety of symptoms. During my year in high school my mother began researching to find why I was experiencing these things and her research led her back to hypothyroid. She took me to the doctor at least twice a year tyring to get someone to help me but no one would. Finally, at the age of 34 I went to a new doctor who looked at the last ultrasound of my thyroid and said "your tsh levels may be in the normal range but not normal for you, why else would you have this walnut size tumor in the middle of your thryoid, that's probably been there sometime". Ahhh....finally a doc that thought and could logic something. I began taking thryoxine and although it made a difference in the tsh levels and the growth rate of the tumor it made little to no change in the symptoms. So my mom has continued to search and question. Last week she came to me with something called Cushings disease and said she wanted to me to take it to my doctor. I did and he is going to do a first thing blood test for my cortisol levels and decide whether I need to have further tests. At this point I am so tired and exhausted that I just don't want to go on anymore. I don't know what questions to ask, what tests he should run, if the blood cortisol level is normal do I drop it? Can someone here please give me direction? I am listing the symptoms I have had below some are old and some are showing up as each day passes. Thanks for listening and any advice you can give.
Weight gain (odd for what I eat)
strange hump between my shoulders, starts at base of neck
high blood pressure (this was out of no where my pressure was always low)
loss of strength (I lived in a two story house and would sometime have to pull myself up the stairs.
Hair growth - mostly a much thicker than normal peach fuzz on my face, but sometime I will wake up with strange random 1/2 inch hairs on my neck that was not there the night before.
Sleep attacks with sleep paralysis.
Round face (the picture I put on here show these difference)
Blurred vision (I have gone to eye doctor twice and they have found minor astygmatism, but really not even enough for glasses although I demanded glasses both times - I don't wear them because they don't help)
Random extreme dizziness
Cannot pay attention
Extreme memory loss (this just started in the last few months)
Most of my weight gain is in my abdomen and it is starting to hang down now.
Best Answer
oh and research ur endos VERY CAREFULLY. since u are fighting hard to convince ur doctor that ur in need of one, u wanna make sure uffind a decent one. pretty much all of them suck, but some are worse than others. find ones who specialise in pituitary, and thyroid...NOT DIABETIES AND METABOLISM
well what id suggest is finding a new GP. i went to the same GP all my life. i am 21 in october. this was fine until i actually got sick, and he wasnt all that helpful. he's the opposite of ur doctor. he sent me to an endo, a few neurologists etc. 9i dont need refferals, but he said he couldnt help and sent me to them whe nall my blood work was normal)..i guess i cant blame him..as he couldnt help anymore. anyway my point is, eventually i went to the neuros and the endo and they didnt help me. i got my first mri from the neuro, and he said just do a followup one in a year or so..at that point i gave up and said i dont want a followup i want this removed, and a year and half later i went to an other neuro to see what she thought about removal..or at the very least to get my followup..the neuro refused to order my mri. i then went to my primary and he refused also. AT THIS POINT I DECIDED to switch primary's. my current primary was shocked at how rudely i was being treated, and said although its not her job to order brain scans, and its a hassle for her arguing with insurance, she would do it. she even ordered me a 3t scan, and requested it be done at the facility of my choice.
ll that said and done she cant fix me, but she cares which is important. search for a new doc.
ll that said and done she cant fix me, but she cares which is important. search for a new doc.
Sorry for the confusion, I have only been seeing my gp at this point. I just feel crazy sometimes because they are treating me for 20 things at the age of 37 and I'm trying to tell them they are connected. Then they end up telling me to stop trying to do their jobs. I just really want to see an endo and someone to connect all of this. Thanks for your comments.
i a diagnosed with things rumpled. cut the attitude out. i am offering good helpful advice. her endocronologist sounds fine and she is on a proper path. it old her i didnt know much about cushingws and a cortisol AM AND PM was a good start. and ive listened to everything u said..so dont even start there...i didnt realize getting a followup 3t dynamic mri,and going to a columbia neuroendo wasnt listening loll! anf getting eye exams like field of vision.
other people are allowed to post without fear of persecution from you aqnd i plan on posting whenever i deem necessary..u are a CL not god.
u say ur blood is low normal...but then say ur being teeated for iot...then tell the op her doc is crazt for treating her when her tsh in the normal ranges. her endo is doing very well..
also u say that no tumor should be ever ignored yet ur ignoring my diagnosis of my tumor and my symptoms and trearting me like im crazy. i respect ur knowledge sometimes as a poster but as a person u can be rude to others and i dont respect thart. u can report this post, but it breaks 0 community guidelines. telling the poster not to trust me or i am a fool or w/e u wanna say DOES break guidelines for bbashing
oh and when someone messages ua very polite message that took 2 hours to write with emotion u mark it as spam and say idc if u get treatment as well really classy ''jessica''
other people are allowed to post without fear of persecution from you aqnd i plan on posting whenever i deem necessary..u are a CL not god.
u say ur blood is low normal...but then say ur being teeated for iot...then tell the op her doc is crazt for treating her when her tsh in the normal ranges. her endo is doing very well..
also u say that no tumor should be ever ignored yet ur ignoring my diagnosis of my tumor and my symptoms and trearting me like im crazy. i respect ur knowledge sometimes as a poster but as a person u can be rude to others and i dont respect thart. u can report this post, but it breaks 0 community guidelines. telling the poster not to trust me or i am a fool or w/e u wanna say DOES break guidelines for bbashing
oh and when someone messages ua very polite message that took 2 hours to write with emotion u mark it as spam and say idc if u get treatment as well really classy ''jessica''
Well I am not working with an endo right now just my gp. This has just come up in the last week and I just mentioned it to him. I was given the run around so much with the thyroid that I am leary of all doctors. I am now beginning to wonder if I had cushings and that is what caused my thryoid issues.
I would like to go straight to an endo but I hear you have to a referral for that. I guess I will tell my gp that no matter of the results I want a referral to an endo for the standard series of cushings tests.
I am on this forum because it mentioned pituitary tumors which is frequently the cause of cushings and there is no cushing forum.
I would like to go straight to an endo but I hear you have to a referral for that. I guess I will tell my gp that no matter of the results I want a referral to an endo for the standard series of cushings tests.
I am on this forum because it mentioned pituitary tumors which is frequently the cause of cushings and there is no cushing forum.
There is no one test that rules Cushing's in or out! Never ever ever ever! If you look up Cushing's, they don't give one test, they give a list. They finally came up with a testing protocol a few years ago, and even that one says test 3 times with three different types of tests and if there is clinical suspicion, test more. There are a lot of things too that can interfere with testing. So your doc is doing an 8am cortisol - if you happen to be abnormal at the very point in time - ok - but alas, cortisol is even known to fluctuate even in normal people so one test is just not enough. It also does not tell the source as he is not running ACTH or any other hormone tests with it.
It saddens me that you are listening to someone who does not have Cushing's and is not diagnosed with anything - and not listening to me, who had it, and knows hundreds of people with the disease.
It is not as rare as doctors think either.
It saddens me that you are listening to someone who does not have Cushing's and is not diagnosed with anything - and not listening to me, who had it, and knows hundreds of people with the disease.
It is not as rare as doctors think either.
a morning and night cortisol is def a good place to start. what blood work have u had? have u had free t3 and free t4? prolactin? have u ever had a brain tumor(just curious y ur posting here instead of thyroids forum) either way ur symptoms are a lot of people with tumors so ur welcome here. i am not saying u have a tumor just saying thyroid and tumor symptoms are similar.
whats ur endos name,i wanna check him out...i enjoy looking up docs ha.
but from what udescribed he sounds like one of the better endos around. most are arrogant and clueless. i myself am traveling to columbia university to see a neuro endo so we will see how that is..i always get nervous my first time meeting with aa new doc...liek theyll write me off. but lately ive been having more success with docs. found a brand new primary, who ordered my 3t mri when the neurologist refused,and found a great radiologyu center that knew what they were doing and were helpful also
whats ur endos name,i wanna check him out...i enjoy looking up docs ha.
but from what udescribed he sounds like one of the better endos around. most are arrogant and clueless. i myself am traveling to columbia university to see a neuro endo so we will see how that is..i always get nervous my first time meeting with aa new doc...liek theyll write me off. but lately ive been having more success with docs. found a brand new primary, who ordered my 3t mri when the neurologist refused,and found a great radiologyu center that knew what they were doing and were helpful also
Well my mom told me from her research to be careful because she read that cushings is a very rare disorder and your general practitioner doesn't know much about it. So, I guess I will ask for another opinion. However he was very open to testing and said he felt it is a very real possibility given my thyroid issues.
The test he said he is running is just to get a normal or abnormal reading on my morning cortisol levels. He didn't say I have to take a pill then have the test. He just told me to get their as quick as I could in the morning, come straight there and be there as soon as they open at 7:30 because it needs to be first thing in the morning. He said this test just rules it out but if it comes back abnormal there will be more tests.
What test should I specifically ask for?
The test he said he is running is just to get a normal or abnormal reading on my morning cortisol levels. He didn't say I have to take a pill then have the test. He just told me to get their as quick as I could in the morning, come straight there and be there as soon as they open at 7:30 because it needs to be first thing in the morning. He said this test just rules it out but if it comes back abnormal there will be more tests.
What test should I specifically ask for?
Ah, you have an endummy!
First, you need to find another doctor. Did you by any chance get a copy of your tests?
What test was *supposedly done* for the Cushing's? Let me guess, you are going to take a pill at night, and get one blood test in the morning? This is the most unreliable test, and that is the only test you are going to get. Had your doc said she was going to run a urine test, I may not be so brutal - but it is obvious that she is clueless. How do I know - I had Cushing's disease.
After you find a doctor who knows how to test (and you may have to see several doctors), you will have to test a lot. One test or even one round of testing is not enough to tell you if you have it as there is NO ONE TEST that will tell you if you have it or not. It takes a lot of tests. Plus the other test in the loop with cortisol, ACTH, is often botched by the lab. So you need to do a lot of research.
Cortisol will mess with your thyroid - but leaving a lesion in there with no ultrasound on a regular basis AND a biopsy to know what the heck it is, is horrible. You need a doc to properly check your thyroid - and report the other doctor for neglect. Your TSH should be normal for normal - not you. That made no sense - not at all!
Cortisol also messes with other hormones - so you need comprehensive testing. Get copies, get out, and find a good doctor. Once you get a good MRI under your belt and find the source of the cortisol, then you can move to a neuro-endocrinoligist and really move on to treatment.
First, you need to find another doctor. Did you by any chance get a copy of your tests?
What test was *supposedly done* for the Cushing's? Let me guess, you are going to take a pill at night, and get one blood test in the morning? This is the most unreliable test, and that is the only test you are going to get. Had your doc said she was going to run a urine test, I may not be so brutal - but it is obvious that she is clueless. How do I know - I had Cushing's disease.
After you find a doctor who knows how to test (and you may have to see several doctors), you will have to test a lot. One test or even one round of testing is not enough to tell you if you have it as there is NO ONE TEST that will tell you if you have it or not. It takes a lot of tests. Plus the other test in the loop with cortisol, ACTH, is often botched by the lab. So you need to do a lot of research.
Cortisol will mess with your thyroid - but leaving a lesion in there with no ultrasound on a regular basis AND a biopsy to know what the heck it is, is horrible. You need a doc to properly check your thyroid - and report the other doctor for neglect. Your TSH should be normal for normal - not you. That made no sense - not at all!
Cortisol also messes with other hormones - so you need comprehensive testing. Get copies, get out, and find a good doctor. Once you get a good MRI under your belt and find the source of the cortisol, then you can move to a neuro-endocrinoligist and really move on to treatment.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
i wont comment on the cushings as im not sure on that.