During any of the testing - any low sodium readings?
Lost weight or gained? Purple marks were stretch marks?
Chromosone issues brings to mind congenital adrenal hyperplasia - but I don't know if they can have kids... but that is a genetic issue.
Any MRIs - imaging?
Any rheumy evaluations? I would try that as well - it sounds like you have an auto-immune component and I would try to get old records.
From the blood tests I had ran in 2007 and 2009 doc said all was normal. Only thing remarkable was potassium was a little high.
I lost about 30 pounds in 2007. I was hardly able to eat. It was like it was foreign, all I could eat was a craving for spinach (I'd eat raw with nothing on it) and craved protein, meat. I'd drink danactive, those all seemed to help, somehow. 2009 I only lost about 10-12 lbs.
So far I've lost nine pounds in two weeks (but with gallbladder acting up that is common).
The purple marks went away over time. No, not stretch marks, more like small blueish purple pin dots.
There were MRIs- one showed increased pressure, air in my brain (given, I am a bonafied air head, lol).
I will get back to family doc and a hold of other specialists to get all past imaging and tests in my possession to pour over and share with other docs, had many CTs and such on abdomen, brain, thyroid uptake, bladder scope.
I will request a rhumatologist, maybe they could help. I've not ventured down that route.
Thank you for the suggestions! :)
An adrenal crisis for most people is low sodium and high potassium - so it is best to get copies and SEE what what the actual number were.
I was asking about weight etc as some of my buddies with high then low then high cortisol can cycle and go all over the place from adrenal low symptoms to adrenal high - it is a nightmare and docs think it cannot happen.
The air head thing is funny... after my pituitary surgery they used abdominal fat to plug the hole so I was a fat head for a while! The fat absorbs... but it still makes me laugh.
I have had tons of normal scans on my abdomen yet my adrenals were huge when they came out - oh and post op right AFTER my adrenals were out, they said my adrenals were normal too... happens to a lot of us.
Brain scans can miss pituitary lesions. With the K issue - have them test for renin and aldosterone. It does not sound like your endo is decent...
If you have been having adrenal issues - has your endocrinologest tested you for Addision's Disease? If you are taking medication for your thyroid then you may need your levels checked - and no you are not too young to be menopausal. I have an polyendocrine disease which covers all of these issues and more.
The endo called today and says "for the most part, all tests are essentially normal". He broke down what he tested me- THS 3-4 was normal, Adrenal was normal, estrogen was ok, pituitary was normal, blood sugar test for hypoglycemia was fine. He told me this rules out the chromosome issues he had considered and other conditions. He now wants me to see a neurologist again. (I will call again and get a copy of the results to have) and plan to see neuro in march, yeah, hurry up and wait.
Really wonder if I should see another endo. Really think of going to vanderbilt in TN. I may call my PC dr and see if she can get me in to one there. I don't know anymore.
I also have had this uncomfortable stomach ache like I'd said and followed up with the same gastro (who I really should have not returned to, and I knew it) he basically says to me "you are overly concerned with your body". He suggests I take cymbalta and see a psychologist! WOW. I have an apt next week with a new gastro. There is also a leaky air feelign I get that has went on since nov 2011. They say it's not in my urinary tract??? I get air coming out the front of me, either vag or urinary tract. I can feel it and you can even hear it- but that's all in my head too...! UGH frustration!
I have now lost 11 pounds, and not trying to. I am still eating good but have had a small appetite. Then there will be time I become starved, strange, I know!
Seems a lot of docs just don't get it. I am still wondering what to do from here. I thankfully have good insurance. I also have a full time job that is strenuous and was hoping to return next Tuesday but I'm so scared that I can't work like this. I am devastated.
Okay, taking a deep breath....
That's too funny on the fatty head thing! I needed a laugh! I can relate!
Yesterday was a better day for the most part I was feeling good. This afternoon I got to back into the icky feeling and the paresthesias, like before, are returning on arms and legs, numb toe, worse than ever all the way up to my ankle nearly. It's weird, my hand will get cold mostly when I eat. Then my symptoms seems to come on worse. B/p drops when I am in this mode, that hot feeling flashes over me too, like a burning on my back. So strange.
I will ask the endo about renin and see if he tested the aldesterone.
*Thank you for the help, and for listening. Knowing I'm not alone and others too have such crazy stuff going on makes me feel ... better, in a strange way, lol....
I will ask if he specifically checked for addisons but from what he told me today it might be ruled out because other results were good.
I actually had looked at addison's and thought it could be that from all the symptoms. Eerily familiar.
I have thyroid nodules but function is said to be fine.
I did have a thyroglossal duct cyst at age 11. The docs were baffled at that time and said that this usually happens at the age of 35 or so.
I've always been unusual.
Just wish I had more knowledge of how this all works. I just read up a little on polyendocrine disease. This all simply blows my mind! The human body is such a complex thing.
I just wondered what type of doc helped you get an answer- an endo?? I think maybe I need to get another opinion.
The one I saw doesn't seem to think he can help me after the results he gave me he says to go to a neurp from here (here I go again, more run around),
Don't give up hope, you are not alone! I was hospitalized in August for an Addisonian Crisis (& all of my hair fell out?), I have been going to Endocrinologists, Neurologists, Rheumatologists, Dermatologists & my General Practicioner ever since,& STILL no one has an answer! I was also told to see a psychotherapist & I can't say that I haven't wondered if its all in my head a couple of times myself! Luckily (or maybe not) I was in a similar situation about twenty years ago, with an entirely different health issue. After about a year of testing & being told it was all in my head, it was discovered that I have a congenital malformation of my brain. I had five neurosurgeries to handle that. technically they were correct, it was"in my head"!
Anyhow, I just wanted to encourage you not to give up. I would go for another Endocrinologist opinion. Remember, they are just"Practicing medicine", they are human, make mistakes & we have to be our own Health Advocates. Good luck, keep us posted, I'll do the same.
Hate to hear about all your troubles! Bless your heart (and your brain)! It makes me thankful that I am doing as well as I am. I am still clinging to some normalcy. It is disheartening when the docs just think you're crazy!
I am calling the endo again today and ask about other tests. Especially the aldosterone, which is would explain the urine issues I've had and possibly the bladder pain, which after my initial issues with recurrent UTIs last year has only come in spells, always worse at menstration. This round that I've been dealing with has been awful with frequent urination and still having dehydration.
If this endo doesn't listen I will continue my quest for a doc who will.
Thanks for the encouragement. :)
I hope things are going better for you!
Look into post tubal ligation syndrome..have you had your hormone levels checked...estrogen, progesterone, testosterone. Eat real fats like butter & eggs, bacon, avacado, steak, full fat dairy, the adrenals need real fat...eat foods high in glutathione, alpha lipoic acid..eat all whole foods no processed, packaged.
Your gall bladder and liver might not be happy - as well as your weight with that diet.
As some of the adrenal hormones work with metabolism (as does the thyroid) I cannot imagine that flooding it with calories would help.
I agree with the hormone check and less processed food.
I've got to agree with using butter and eggs and eating full fat dairy---if you ever see a diagram that follows what turns into what in the endocrine system---it starts with cholesterol.
The doctor I see believes high cholesterol is caused by hypothyroidism---interestingly enough---i have run across a lot of articles that say very similar things.
However, you can't just eat those things without changing the rest of your diet, too---or what rumpled said about your gallbladder, liver and weight is would most likely be right.