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Could I have Cushing's Syndrome?
I posted in undiagnosed and someone suggested for me to post here. I am so frustrated. Feel free to read some of my previous posts. Here is what I posted. The endo is now checking me for Cushing's Syndrome. I had never heard of it but after he suggested it I have done some reasearch and I have alot of the symptoms. I am 30 year old female and am on meds for OCD, Irritable Bowel, Acne, High Blood Pressure, High Triglycerides, Migraines, Allergies, Vitamin D, and Heart Burn. These are all prescription meds. I weigh around 240 pounds and am a size 18W and am having trouble losing weight. Is this just my weight or something more? My gyno said my neck appeared to have a goiter, the docs checked and I do have one but they have no idea why. My TSH this past week was 0.385 with mid level FREE t4. The low TSH is in normal range but leaning more towards hyperthyroid than hypo. The endo said my goiter is full of small nodules that are of no worry. But the fact that my peroid has shortened from a 7 day lentht to a 3 days length in the past 3 months is of a concern along with my eye twitches and heart palps. But I do not have a buffalo hump that I have ever noticed. I did notice a lump in my stomach near my belly button making one side of my stomach look larger than the other. I have been large since first grade before then I was slender so basically been fat all my life. My face is very round and red but my body is big all over not just in my belly. I do have a harder time losing belly fat though now that I am really trying to lose weight. I have gotten many stretch marks over the years but no new ones. I feel terrible alot and have frequent headaches. Is all this from me being overweight? I realize being overweight leads to problems but I just feel like mine are too many and are wreaking havoc on me stopping me from trying to get healthy. I have been exercising and eating better which helped some on my blood pressure but doesn't do anything for my triglycerides. I have had my gall bladder removed a few years ago which they though was the problem for my IBS which unfortunately I still have to take meds for to stop constant diahrea. Maybe that's why I have such bad heartburn. The prescription meds arent helping. They tested it and it only worked 1%. My monthly has been regualr and heavy and lengthy up until a few months ago. I am so frustrated. What do you think?
Despite the preservative, keep it cold. I know! If you do not, it will degrade. The test may be invalid anyway as usually the test is done preservative-free, and the acid may interfere with the results.
You can be cyclical - have the red come and go. Many of us have that. The test take a week or more.
The images you see are not exaggerated, but very florid cases of Cushing's. In other words, a 6 year old could figure that out. But having met so many people with Cushing's over the years, I can pick people out even if they are not so heavy, or if they are heavy - it is not just size, but the red, the hump, the swollen look, the fatigue... I have met people that are size 2!
I did not gain weight until I was 6-7 years into the disease and my female hormones got zapped. But If I go back and look at older pics, I still had the hump, stretchmarks (who thinks that is a symptoms!) and all - I just did not pick up on the more subtle things.
It is not your fault you have the disease and you have no idea how long you have had it - I know babies born with it, so you could have had it going way back and just not known. Doc simply do not check for it. When someone is overweight, it is always, sadly, seen as the person's fault and everything else is overlooked. I was called a liar many times but I kept fighting back - but it took over 12 years for me to get diagnosed! And I know others that took longer.
You can be cyclical - have the red come and go. Many of us have that. The test take a week or more.
The images you see are not exaggerated, but very florid cases of Cushing's. In other words, a 6 year old could figure that out. But having met so many people with Cushing's over the years, I can pick people out even if they are not so heavy, or if they are heavy - it is not just size, but the red, the hump, the swollen look, the fatigue... I have met people that are size 2!
I did not gain weight until I was 6-7 years into the disease and my female hormones got zapped. But If I go back and look at older pics, I still had the hump, stretchmarks (who thinks that is a symptoms!) and all - I just did not pick up on the more subtle things.
It is not your fault you have the disease and you have no idea how long you have had it - I know babies born with it, so you could have had it going way back and just not known. Doc simply do not check for it. When someone is overweight, it is always, sadly, seen as the person's fault and everything else is overlooked. I was called a liar many times but I kept fighting back - but it took over 12 years for me to get diagnosed! And I know others that took longer.
Also, when I do searches on the net for images of patients with Cushing's all the images tend to bel very exagerated , very large, round individuals. Very round face and stomach. Is that always the case? Although I do work at my size alot, I am proportionate enough so as not to draw direct attention. I don't think anyone may direclty look at me and think I have Cushing's just be my shape, although I am overweight.
so sorry I haven't posted which ones yet. I went to the gym yesterday and didn't have time after that. I will though. They put acid in the jug and told me that I didn't have to keep it cool which I thought was good. Apparently they use to do that, as that was what was on my instruction sheet, but the nurse told me to cross that line out and ignore as she put some sort of acid int he jug. I had a lot of stretchmarks especially as a teenager, on my stomach, underarms, inside thighs that were wide but pinkish red mostly. They are most all white now, no new ones in years. I remember the ACTH test being on the list and I believe the FSH/LH. Haven't heard anything from the tests yet but I suppose no news is good news.
The 24 hour cortisol test is specific for Cushing's. ACTH is as well. Perhaps they did FSH/LH which are the female hormones (although males have them too...) from the pituitary. Make sure you keep the jug cold at all times, and do the test properly.
They are looking for stretchmarks that are wide and that have color. I had lovely purple ones. But I have friends that did not have them and had Cushing's. Sounds like they are going by the book.
If you look at my pics, you will see my red face pics, but I could not get the typical moon-face as I am a pin-head.
I also take a lot of D. D3 is best - it absorbs more.
They are looking for stretchmarks that are wide and that have color. I had lovely purple ones. But I have friends that did not have them and had Cushing's. Sounds like they are going by the book.
If you look at my pics, you will see my red face pics, but I could not get the typical moon-face as I am a pin-head.
I also take a lot of D. D3 is best - it absorbs more.
Maybe you can find out which it was by asking for a copy of the lab result report? Did they test then to see if you had a toxic goiter?
I believe it was my TSH was off. I don't know if it was over or under though. The doc sent me for the thyroid uptake first then the gall bladder scan after the thyroid uptake showed nothing.
Which hormones were off in 04 or 05? Cortisol testing is one way they test the adrenals (Rumpled could tell you much better than I as she has had much more experience with that kind than I) and what I posted on the other forum is another test for the adrenals.
Plasma free metanephrines measure metanephrine (inactive metabolite of epinephrine) and normetanephrine (inactive metabolites of norepinephrine). The active elements, epinephrine or adrenaline and norepinephrine or noradrenaline, can have effects on your heart rate and blood pressure. What's used up shows up in the blood as the inactive metabolites called metanephrines.
Plasma free metanephrines measure metanephrine (inactive metabolite of epinephrine) and normetanephrine (inactive metabolites of norepinephrine). The active elements, epinephrine or adrenaline and norepinephrine or noradrenaline, can have effects on your heart rate and blood pressure. What's used up shows up in the blood as the inactive metabolites called metanephrines.
How do they test for the adrenals? I will post all the different test they just recently done on bloodwork that we are awaiting results on. My diahrea issue is helped with Questran (Cholestyramine) and they have me on Trilipix for my Tryglycerides. I had terrible stomach cramps and had a colonoscopy that only revealed a spastic colon. After that (sometime around 04 or 05) my hormones were off on a routine blood test. The doc suspected it was my gall bladder or thyroid and had both tested and the gall bladder worked 1%. So I had it removed. The thyroid uptake scan revelaed normal which was odd because I believe I already had my goiter then. Anyway..still have the pain and diahrea so I still take the questran. With the questran, it is only occoasional pain/cramping. But I must take it everyday or otherwise I get sick as a dog and have to sit on the toilet all day. (sorry so graphic)
Please see my reply to your posting in the undiagnosed forum. And I'm curious regarding your IBS- since you have constant diarrhea, have they ever tested you for malabsorption issues? Ever been tested for celiac sprue? Also, regarding your heartburn- have they ever tested your gastrin level? There is a kind of tumor that can affect the pancreas, which is instrumental in production of acid. It lets off a lot of acid. I got tested for this myself fairly recently, since I too suffer from heartburn & acid reflux but in my case, my gastrin was not high at only 21. I've also been informed feeling stressed can influence acid production as well. I know it can cause diarrhea too. (I also have IBS). They also like to lump a lot of problems into the dysautonomia category- dysfunction of the autonomic nervous system. Migraines and IBS can fall into that category as well as orthostatic intolerance, if you have that.
Sugar is what influences your triglycerides & I was told by an acupuncturist that it is what is responsible for plaque formation in the arteries. So you might take a look at those labels for how much sugar content they contain. There also is a certain cholesterol medication that is supposed to be especially effective for lowering triglycerides (don't know if it's what's not working already for you) but it is...gemfibrozil.
Sugar is what influences your triglycerides & I was told by an acupuncturist that it is what is responsible for plaque formation in the arteries. So you might take a look at those labels for how much sugar content they contain. There also is a certain cholesterol medication that is supposed to be especially effective for lowering triglycerides (don't know if it's what's not working already for you) but it is...gemfibrozil.
Thank you for your reply. I just finished and turned in this morning the urine Cortisol 24 hour test. On friday when I was at the office they drew about 6 vials of blood and I glanced and the request and it had nurmerous items checked such as I think FSHA? Free T3? Testosterone, it was probably 15 different things all together. I can check my copy when I get home today. Are you looking for a certain one? I have always been overweight since first grade but only in recent years has it been more so in my belly. Also for about a year now one side of my belly around my belly button sticks out further than the other. When I told my gyno about it, she thought it might be a hernea but after feeling on my tummy she said it may just be a fatty deposit. When my endo was looking at my tummy for new stretch marks I told him about this and he seemed to think it might be relevant too. Noone else can see it too much but I notice it when looking down at my clothes. I don't have any new stretch marks at all. Mostly all mine came all over years ago. And I have been working hard to lose weight and have lost only 4 pounds in 4 months but I dont' think any around my belly.
I think that your endo should continue testing you for Cushing's syndrome, and hopefully, the endo will do a thorough job.
As you know, you have a lot of symptoms. Weight is one thing, but all the other things add up but for me, the tip off is that the meds are not helping. That means the source is not what the meds are made for, and that they should look elsewhere. I was the same way.
Not everyone has all the same symptoms, nor does everyone have all the symptoms.
What tests is your doctor doing?
As you know, you have a lot of symptoms. Weight is one thing, but all the other things add up but for me, the tip off is that the meds are not helping. That means the source is not what the meds are made for, and that they should look elsewhere. I was the same way.
Not everyone has all the same symptoms, nor does everyone have all the symptoms.
What tests is your doctor doing?
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