Avatar universal

Need advice on getting diagnosis

Hi there...
thanks for taking the time to read my post. I apologize in advance for the length. I’ve had chronic health issues for the past five years, and I’m just at my wits end. I don’t know where to go from here, and I’m wondering if I may have undiagnosed Addison’s disease.

My symptoms started in 2010 when I got a bad chest cold/cough. A doctor at the immediate care prescribed steroids and cough syrup. The cough went away, but I was left with debilitating fatigue, shortness of breath, and chest pain. At the time, my doctor and I believed these were just complications due to a congenital deformity called pectus excavatum.

In May 2011, I had surgery to correct pectus excavatum. During the week-long hospital stay, I was miserable. I was in a tremendous amount of pain, but the doctors could not medicate me properly because my blood pressure kept dropping too low. Finally I was in so much pain that my heart rate climbed over 200. They finally got everything under control, but I don’t remember much from that week since I was in such a haze from all the meds and stress. When it was finally time for me to get up out of bed, I fainted. I had to work with a physical therapist for a couple days before I could leave the hospital.

I did pretty well after I left the hospital and went through more physical therapy. My shortness of breath was gone, and my fatigue improved (although it never went away). But in June 2012, I started having pain around my chest again. I thought it was due to the surgical bar they put in during surgery, so I went back to the surgeon. He recommended ibuprofen. *rolls eyes* By December 2012, the pain had spread to my entire body and the fatigue was getting bad again, so I went in for a pain injection, which hurt like hell and didn’t do much to relieve the pain.

In 2013, the surgical bar was removed, and that surgery was much less invasive, so I didn’t have the same complications. I had hoped having it out would help relieve some of my pain, but it hasn’t.

Since 2012 I have been dealing with progressively worsening symptoms:

Full body aches/pains
Digestive issues - abdominal pain/cramping, hemorrhoid (sorry TMI!!), fluctuating appetite
PMS and menstrual irregularity
Foul body odor
Weakness in my legs and hips
Tingling in lower legs, feet and fingertips
Excessive thirst
Salt cravings
Daily headaches - occasional migraines

My doctor has diagnosed me with fibromyalgia, and I’m just too stubborn to accept it. We’ve done tons of testing. Most have come back normal (including normal thyroid function), but some numbers caught my attention. My cholesterol is low. My morning cortisol level was low-normal in March, and my blood sodium levels were low, which is why I’m wondering if I could have early Addison’s. I also have psoriasis, so having one autoimmune condition makes me worry I could develop another. I’m on adaptogenic herbs for my adrenals, which have helped bring my blood pressure back up to my normal level, so I haven’t been feeling as dizzy the past week.

My symptoms do seem to be cyclical. Do any of you notice that your symptoms get worse/get better depending on your “time of the month?”

Almost wondering if I should stop taking the adaptogenic herbs so I can get an accurate diagnosis?

How did you approach getting diagnosed? Did you have to be aggressive about it?
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Avatar universal
Look through tests and find sodium and potassium.  As is a salt wasting disease so you would have those at the low end or K at the high end (sometimes low).

I agree fibro is a kinda garbage diagnosis (sorry!) and I got it too, but I just won't accept it, I feel they say it and stop.

One test at one time is not enough to know. More testing and different types, plus other stuff and a stim test is needed to get the answer.   Sorry sick so delays.
Helpful - 0
Avatar universal
Thanks for the reply!
I totally agree with you on fibro being a garbage can diagnosis lol.

My sodium levels tested on the absolute low end of the reference range last December.

Last week I felt like I might have been going into crisis and was having a lot of cramping and muscle tightness in my chest and legs. I drank two tall glasses of salt water because I was afraid of going too low on sodium and possibly having something happen with my heart. When I got to the emergency room my sodium levels were still at the absolute low end of the reference range even after just consuming 1,000mg of sodium. How low does your sodium level have to be to be considered too low? The ER doctors sent me home without offering further testing or any medication. Not even a saline drip! I kept drinking salt water and eventually started feeling better.

I'm seeing an endocrinologist tomorrow. Hopefully we'll get to the bottom of everything.
Helpful - 0
Avatar universal
ERs are great for heart attacks, broken bones and the like, but they are not there to diagnose complex stuff...

A good endo would pick up on the low end sodium and you should said you crave salt. I use 1g salt tabs to help when I am sick.

Hope Endo was helpful!
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Avatar universal
Saw the endo yesterday. She ordered an ACTH stim test which I am going for on Tuesday morning. I did ask her about the low-end sodium but she didn't seem concerned. But she did pick up on my low cortisol and asked me lots of questions about my symptoms.
She also tested my heart rate and BP while lying down, sitting and standing. My BP stayed about the same but my heart rate went high and she said she didn't have any comment about that yet. I read in Dr. Tietelbaum's book about Fibro that this can be a symptom of POTS. Is this at all related to Addison's?
Helpful - 0
Avatar universal
Many of us with low cortisol also have POTS.  Not all, but many. But your bp did not drop. So you are normal.

I take florinef to help with it. It also will help with holding sodium. If the doc is not concerned maybe she is not up on the whole renin/aldosterone thing.

Good luck with stim test.  Hope it is 8 a,m fasting!
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