New member with confusing adrenal/pituitary issue

Posted by Julia @moonarific, Sun, Feb 3 12:45pm

Hollow everyone. I've been through the wringer as I'm sure we all have.

I'm new to this community so if someone could direct me to the right forum or. Connect me to similar users that would be incredible.

Here is my situation.

Several years ago I started having low blood sugar. I passed out and got carted off in an ambulance. I also have a heart arrhythmia and the symptoms are similar. Sweaty, nausea, pale clammy skin. Might pass out. Hard to tell the difference between the two if you arent used to it. So the first time it happened I went and laid down like I usually do when I'm having palpitations. Woke up in an ambulance with low blood sugar. Took me almost 2 years to get to an endocrinologist and he ran a lot of tests on me. During this time I started gaining weight despite a healthy diet.

My cortisol levels were normal most of the time. But I had persistently high acth. He decided to do a glucose implant. My blood sugar was low 24/7 sometimes dangerously.

He decided my pancreas must be making too much insulin but the excess acth made no sense so he referred me to a doctor at a state hospital who teaches endocrinology.

This doctor also ran a bajillion tests.

Through him I found out I have a growth or possible hyperplasia on my left adrenal gland only. I also have a flattened pituitary gland. And my acth is continued to be elevated. Nor did it suppress during a long high dose dexamethasone supression test. He suspected that I had an ectopic production of acth but my ct scan didnt find anything in my chest.

Meanwhile I've gained 80 pounds in the last year and my energy had tanked to nothing. I also have extreme cold spells where my temperature drops and I need multiple blankets to bring my temperature back up. I now have chronic mild abdominal pain, Indigestion, nausea and low appetite.

In my last labs in early December my thyroid was normal but my electrolytes weren't and my calcium was low.

This is where I'm at.

Currently waiting for insurance to decide my fate. Scared to be honest. This whole situation has spiraled and I feel worse and worse the more time passes. I'm also nervous about waiting 6 months to be seen at mayo. I had an appointment last week but couldn't get insurance to get their act together in time.

Ugh. Such a stressful situation. Thank you all for listening and understanding. Heck even if no one reads just typing it all out in a place I know other people might understand felt nice.

Thank you

Hello @moonarific and welcome to Connect. Not having a definitive diagnosis is both frustrating and one of the things that has Connect members most worried. It is good that even typing out your worries has given you temporary relief. Even still, Connect is a place where members share similar experiences with one-another to gain more insight and to learn how to better advocate for themselves. In situations where there has not been a diagnosis, it is a bit trickier, but maybe if you share a bit more about each potential diagnosis. I'd also like to invite @sherrilynn and @dazza333 who have talked about flattened pituitary gland. You may also find the following discussion on adrenal gland issues worth your time to check out and participate in if you feel comfortable, https://connect.mayoclinic.org/discussion/possible-adrenal-issues/. Here is another discussion on chronic abdominal pain, https://connect.mayoclinic.org/discussion/chronic-abdominal-pain/.

@moonarific, did your providers who have done the workups for you up to this point think that any of the potential issues they are checking you for the cause of your symptoms that you are experiencing? If you don't mind me asking, why did it take so long to see an endocrinologist?

REPLY
@JustinMcClanahan

Hello @moonarific and welcome to Connect. Not having a definitive diagnosis is both frustrating and one of the things that has Connect members most worried. It is good that even typing out your worries has given you temporary relief. Even still, Connect is a place where members share similar experiences with one-another to gain more insight and to learn how to better advocate for themselves. In situations where there has not been a diagnosis, it is a bit trickier, but maybe if you share a bit more about each potential diagnosis. I'd also like to invite @sherrilynn and @dazza333 who have talked about flattened pituitary gland. You may also find the following discussion on adrenal gland issues worth your time to check out and participate in if you feel comfortable, https://connect.mayoclinic.org/discussion/possible-adrenal-issues/. Here is another discussion on chronic abdominal pain, https://connect.mayoclinic.org/discussion/chronic-abdominal-pain/.

@moonarific, did your providers who have done the workups for you up to this point think that any of the potential issues they are checking you for the cause of your symptoms that you are experiencing? If you don't mind me asking, why did it take so long to see an endocrinologist?

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It took a long time because of a doctor situation. When my blood sugar dropped the first time I had a really good pcp but before I could see her she moved away suddenly and I had to find a new one. My new one wasnt as good and wasnt very kind to me about my request for an endocrinology referral.

She treated me like she thought I was crazy.

Thankfully my current doctor isn't like that. But by the time I got my referral and waited to be seen (theres not many endocrinologists in my area) it had been a couple years.

Logistics basically. Healthcare can be so frustrating and I'm definitely not very good at standing up for myself.

I'm not sure about the symptoms honestly. They all just appeared.

I dont have low blood sugar at all anymore which is the strangest part since that's the whole reason I went in the first place.

Also, thank you for the links and recommendations.

REPLY
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