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Endocrine Disorder, but not diagnosed yet

terpgirl
  • By terpgirl
  • Posted November 14, 2008 at 8:29 pm · 16 replies
  • In Symptoms
  • Shared with the public
0 Recommendations

This all started about two months ago when I missed a period. I thought I was pregnant because I showed all of the symptoms. I was gaining weight, crying over everything, feeling nauseous and exhausted. The tests came back negative for pregnancy. Then I noticed problems with my blood sugar, facial hair I'd never had before, my skin breaking out. I have elevated levels of testosterone and cortisol. My aunt has adrenal hyperplasia. She also has the same symptoms as I do. Waiting for suppression tests results to come back.

Explore topics in this discussion:

Hysterectomy Pregnancy Diabetes Anxiety Prednisone Depression Pituitary tumor Metformin Cortisol

16 replies

dizzybee

When do you expect your results back?

Do they suspect Cushing's. I had that from about 1993 to 2005 (long story there). Anyway, you can message me if you want to talk. Been through it all, if they catch it early, it won't be sooo bad. I had to have both my adrenal glands removed to "cure" it. But I have loads of other issues also. But I would be glad to help you out.... :)

terpgirl

I get my results back Monday, but I already made an appointment with an endocrinologist. I think the doctor was testing me for Cushing's, but I'm not sure. I've started doing a lot of research and it's all leading me to Cushing's or adrenal hyperplasia. Looking back on my life, all of my health issues can be explained now. I just don't know what to expect from here. Any info would be helpful.

TinaDiane

I am so glad you are going to an Endocrinologist! He or she should be able to help you. Do you know if you have polycystic ovarian syndrome? That also has the symptoms that you are describing. That runs in my family and sometimes they can put you on a medication called metformin (really a diabetes med) that can help.
Good luck to you
Tina

dizzybee

TinaDiane is also right, it could also be PCOS. just about all autoimmune disorders overlap with symptoms in some way or another.

Cushing's can come from either a pituitary tumor, adrenal tumor or a pheochromotoma on/in/around the lungs.

I had a uterine hysterectomy before i got cushing's so it is hard to say if i would have had periods or not.

Here is a website of group www.csrf.net of 'cushies' as we call ourselves.

please let us know what your labs say. don't be discouraged if nothing comes up positive b/c it could also be a cyclic form (which is what mine was).

terpgirl

I've never been diagnosed with PCOS, but it seems like all of the symptoms are the same between that and Cushing's. Counting the minutes until my appointment tomorrow. At least I feel like I will be able to start moving forward with this. Right now, I'm just stuck not knowing what the heck is going on. Thanks for the info. I'll keep you posted

terpgirl

Okay, so here's the scoop. I met with my OB/GYN today to go over bloodwork. He says that I have PCOS and adrenal hyperplasia. I am not suprised since I know my family history.

I told him about me joining this group, and he asked what kind of support I needed. I explained that I have no self-esteem because of this thing. His recommendation was to give me a therapist's number and possible antidepressant in the future. I'm not crazy.... My hormones are out of control.

I also told him that it's not uncommon for me to be able to fit in clothes anywhere between a size 4 and a size 12 at different times of the month. He said it wasn't possible; that the clothes are just made differently. Again, NOT CRAZY!

His solution to all of my problems is to put me on the Pill. That's just not a good enough attempt at a remedy for me.

I can't wait to go to the endocrinologist!!!

TinaDiane

I have been on an antidepressant since 1992. It really helps. I think the pill helps for polycystic ovary disease. What you should do is up to your MDs and your test results. I'm so glad you are going to an Endocrinologist. Let us know what is going on.
Metformin ( a drug that is for diabetes and Polycystic ovarian sydrome, really helps to stop extra testosterone production and excess insulin production). That may be more important than any other drug.
Tina

dizzybee

that's is their first mode of attach -- bring out the old script pad -- she's a woman, so therfore, she must be depressed. I had a doc tell me one time that it was all in my head (this is when I had a pit tumor) -- I said yes, you're right it's a BRAIN TUMOR IN MY HEAD.

I've been on pretty much every anti-depressant out there -- they do not work on me, most meds work the opposite on me anti-depressants make me want to kill myself -- so i refuse them when they are offered. I will try them if they are new, but they still don't work. Oh well, i know i'm a weird one.

I love it when they tell you in med. school they are trained that "not all hoofbeats are horses, some are zebras" -- last doc I told him well, I'm a unicorn :)--

TinaDiane

I think I'm a unicorn too!
Anyway, sometimes medication helps and sometimes it doesn't. I'm with Joyce, find out the cause of the symptoms, don't mask them. I'm glad Terpgirl is going to an endocrinologist, and I hope he or she is AN EXCELLENT DOC ( I had one that only wanted to do it as a hobby and only was interested in bone density exams) so make sure they are interested in your area of need!!!
Tina

terpgirl

I have nothing against antidepressants. I've been on several of them myself. I just know that it wouldn't really help in this situation. If the endocrinologist says the Pill is the best option, then I will do it. I just feel like there's definitely more that can be done than that. As far as his credentials go, my aunt has been seeing him for over 20 years. He's one of the best in the state and the head of endocrinology at one of our biggest hospitals in the state. I feel pretty confident that he knows what he's doing.

TinaDiane

Excellent! I'm very glad you are getting the right kind of help. It makes a hugh difference when we have faith in our Docs...
Good luck to you,
Tina
g

terpgirl

Thanks Tina. I may not know a lot more than I did before, but at least I have a good idea of what's going on.

brendac01

The organic cows milk might help you feel better. It helps the adrenal glands work. It helps balance the weight. It helps hormonal things work. Cushings is when the cortisol level goes high. Mine went low from Prednisone.

allovertheshop62

Why is it that one can easily obtain research articles from the net, like scholarly articles that the docs just can't wait to get their hands on. I ask why, because when one has their symptoms confirmed by reading scholarly articles and makes an attempt to educate oneself of their disorder, why do the doctors, endocrinologists dismiss discussion of symptoms that these disorders have on the mental state? In fact from what I have read, more people are suffering from topsy turvy symptoms like anxiety, depression, low self-esteem, hot flashes that turn into anger etc, and they are really suffering. If the research is out there and relieves us to know others also have these symptoms, why do the professionals seem so skeptical? Why can't they at least say, Apart from any physical symptoms, you should be informed that these type of conditions have a MAJOR IMPACT on your mental wellbeing!!!! What are they scared of???

terpgirl

So true!!!! Here's my theory. We have the right and the duty to educate ourselves on our issues. The doctors and the rest of the medical staff don't want to hear that we know what we're talking about. That would conflict with their major egos and the fact that they think they are super powerful and are privy to some info. If we know what we're up against, what do we need to pay them the big bucks for?

fezzcatt

Oh I am so with "alloverthershop62". I say just stay true to your instincts and question anything that doesn't make sense or if you don't understand something. Don't let them intimidate you! It's your quality of life they're dealing with and you deserve the best you can get.

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