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Living with Undiagnosed Symptoms Despite Medical Consultations

Diabetes & Endocrine System | Last Active: May 11 1:33pm | Replies (28)
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@cehunt57

@abdudawood you and your sister have had such a lot of symptoms going on for such a long time with very few answers or solutions. This must be terribly frustrating!

As a 50ish years diabetic I have learned that this condition affects everything else I might encounter and vice versa. Anything else makes controlling the diabetes more difficult. It is a two way street. It sounds like you have done a great job of controlling your diabetes.

Still when other symptoms and conditions exist it becomes that much harder to sort it all out. We members shouldn’t be diagnosing or prescribing but we can share our own stories to offer encouragement and hope. Lots of members are doing just that. You aren’t alone.

I have a suggestion. Could you and your doctor review that huge list of symptoms to organize it in some way? You could base it on
PRIORITY / what is most bothersome?
CATEGORIES / do some symptoms go together?
CHRONOLOGY / what order did they start happening?
SIMPLICITY / are some easier to treat than others?
Etc……

I’m trying to suggest a way to get started on making your situation more manageable one step at a time. Could your provider help with this &/or refer you to colleagues who would try?

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Replies to "@abdudawood you and your sister have had such a lot of symptoms going on for such..."
abdudawood | @abdudawood | May 11 1:33pm

Hi @cehunt57,
Thank you so much for your thoughtful and supportive reply. You're absolutely right — this journey has been long, overwhelming, and often discouraging, especially when symptoms are dismissed as “just diabetes.”

What makes my case more complex is that I’ve been living with type 1 diabetes for years, but recently developed severe fatigue, joint locking, overnight hypoglycemia (even on SmartGuard), inflammation, and extreme steroid responsiveness. After a single IV dose of cortisone, all of my symptoms completely resolved within an hour, which shouldn’t happen with just inflammation or allergy.

I’ve done an extensive panel of labs. Most doctors focus only on my diabetes, but I’ve tested:

Critically low 24-hour urine cortisol (8.4 µg vs a normal 28–213 µg range)

Normal ACTH (inappropriately low for my cortisol level)

High eosinophils and IgE

Strong family link — my sister has similar symptoms and immune markers

Despite all of this, many providers are reluctant to even consider secondary adrenal insufficiency or autoimmune adrenal suppression — they chalk it up to diabetes, anxiety, or overtesting.

Your suggestion about categorizing and prioritizing symptoms is excellent. I’ve begun organizing them by timeline and how they flare around blood sugar drops, stress, and meals. That’s already helping me see that this isn’t isolated to glucose — it’s systemic.

I’m currently seeking an endocrinologist or internal medicine specialist who is willing to take this seriously and possibly trial physiological hydrocortisone. If you or anyone in the community knows someone who has experience with secondary adrenal insufficiency, autoimmune polyendocrine syndromes, or unexplained cortisol suppression, I’d be incredibly grateful.

Thank you again for reminding me I’m not alone. Support like yours really matters.

Warm regards,
Abdu

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