Living with Undiagnosed Symptoms Despite Medical Consultations

Posted by abdudawood @abdudawood, Sep 2 10:53am

I've been struggling with a complex and worsening set of symptoms for years, and despite seeing multiple doctors, I still don’t have a clear diagnosis. My symptoms have significantly impacted my daily life, and I'm hoping that by joining the Mayo Clinic forums, I might find some guidance or connect with others who have faced similar challenges. I'm really hoping that someone here can help me piece together what's been going on with my health. Any advice or shared experiences would mean the world to me. Thank you!
I started experiencing numerous symptoms in high school, which have progressively worsened over time. I've consulted several doctors, but as soon as they learn that I have diabetes, they attribute all my symptoms to it without conducting further tests. Despite this, my symptoms have rapidly intensified.
Here are the symptoms I've been dealing with:
- Joint and back pain and stiffness
- Limited joint mobility
- Severe pain in my right hip and left shoulder joints
- Difficulty concentrating
- Dry eyes, floaters, light sensitivity, blurry vision, and light flashes
- Weight gain
- A burning sensation in my brain
- Dry throat and constant thirst
- Burning sensation when urinating
- Depression and stress
- Panic attacks
- Poor memory
- Acne on my face and scalp
- Ringing in my ears and hearing loss
- Dizziness
- Weakness in my hands and feet
- Pounding heart and shortness of breath
- Stroke in February 2024 (required acute heart infarction surgery)
- Fatigue
- Cramps and calf pain
- Hair loss and premature graying, including gray eyelashes
- Numbness in my feet
- Dark skin patches and spots
- Insulin resistance
- Food allergies
- Difficulty breathing
- Very high blood pressure, which spikes after sexual intercourse
- Severe coughing
- Loss of smell for weeks at a time, sometimes replaced by a foul odor
- Runny nose
- Severe mineral deficiencies, including potassium, magnesium, and sodium

One major concern that led me to investigate further was noticing a significant worsening of my symptoms after getting married. I also began experiencing retinal bleeding in both eyes. My ophthalmologist questioned whether I had another underlying condition, as my symptoms did not align with typical diabetic retinopathy.
After years of research, I became convinced that diabetes was not the root cause of my issues. I ordered various supplements from iHerb, and while most didn’t help, I found significant relief with the following:
1. Adrenal Stress
2. Adrenaplex
Taking these supplements before bed made a dramatic difference—I felt better than I had in 20 years. My symptoms almost completely disappeared within a week, and for the first time in decades, I slept well. My voice changed, my mood improved, my vision normalized, and my retinas healed, eliminating the need for the laser treatment my doctor had recommended.
I continued taking these supplements for about six months, but then my symptoms gradually returned. Stopping the supplements provided some relief, but I never felt as good as I did in those first weeks. I also tried cortisone pills, which helped temporarily, but my symptoms would return within a week.

I’m at a loss for what to do next. These symptoms are severely impacting my life. I’m easily upset and angry, have no energy for my family, and struggle to retain information. Despite my best efforts, no doctor will entertain any diagnosis other than diabetes and accuse me of neglecting my condition.

I’ve undergone numerous tests, including thyroid function, all of which have returned normal results, except for those related to adrenal function. After worsening on the iHerb supplements, a family friend recommended cortisone. I tried FLORINEF (Fludrocortisone) but couldn’t tolerate a full dose for more than two days. I began taking half a pill as needed, but eventually stopped after two years because I didn’t want to rely on it.
I also experienced diabetic ketoacidosis (DKA) after a throat infection, which raised my blood glucose to 33 mmol/L, requiring emergency hospitalization. After receiving antibiotics via IV, my eye problems and bleeding resolved, my joints became flexible, and I slept better than I had in years. Unfortunately, the symptoms returned within two weeks.
My younger sister, who is neither diabetic nor hypertensive, developed the same symptoms last year and is suffering greatly. Despite extensive testing, I’ve been unable to find a clear diagnosis—rheumatoid and allergy tests have all come back negative.
I’ve exhausted every avenue with doctors, only to be told that my symptoms are solely due to diabetes. Despite numerous tests and consultations, I still have no clear answers. The symptoms are severely affecting my quality of life, and now even my sister, who isn't diabetic, is suffering from the same issues. I'm reaching out to the online community in the hopes that someone might recognize this pattern of symptoms or have insights into what could be causing them. Any guidance, suggestions, or shared experiences would be greatly appreciated.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Have you had any autoimmune testing? Lyme testing? (I am only asking these to cover a few of the symptoms).

REPLY

Lyme doesn't exist where I was living which is Dubai. I did some autoimmune tests:
1- Celiac: negative
2- Thyroid Antibody Test: negative
3- Some inflamation tests: negative a little high antibodies the doctor said might be caused by Cholestrol medication!
What tests do think I should talk to my doctor to perfrom?
Appreciate your help.

REPLY
@abdudawood

Lyme doesn't exist where I was living which is Dubai. I did some autoimmune tests:
1- Celiac: negative
2- Thyroid Antibody Test: negative
3- Some inflamation tests: negative a little high antibodies the doctor said might be caused by Cholestrol medication!
What tests do think I should talk to my doctor to perfrom?
Appreciate your help.

Jump to this post

antinuclear antibody (ANA) with reflex panel (done if ANA is positive to get more specific info)

Sed rate, CRP
As the parent of a type 1, I would also say you need more aggressive help with blood sugars. Insulin needs to be tripled sometimes in our experience with infection, and with steroids like Florinef. It is concerning that you had ketoacidosis with a throat infection. Were you on steroids?

Are you on insulin? Diabetes is certainly a low hanging fruit here so to speak. If blood sugars are under control a lot changes. Can you do a pump and CGM?

REPLY
@windyshores

antinuclear antibody (ANA) with reflex panel (done if ANA is positive to get more specific info)

Sed rate, CRP
As the parent of a type 1, I would also say you need more aggressive help with blood sugars. Insulin needs to be tripled sometimes in our experience with infection, and with steroids like Florinef. It is concerning that you had ketoacidosis with a throat infection. Were you on steroids?

Are you on insulin? Diabetes is certainly a low hanging fruit here so to speak. If blood sugars are under control a lot changes. Can you do a pump and CGM?

Jump to this post

I'm T1D since I was a kid. I'm on a pump with CGM and I always keep my BG undercontrol. I'm certain that the problem isn't diabetes related because my non-diabetic syster is going through the same symptoms now!

REPLY
@abdudawood

I'm T1D since I was a kid. I'm on a pump with CGM and I always keep my BG undercontrol. I'm certain that the problem isn't diabetes related because my non-diabetic syster is going through the same symptoms now!

Jump to this post

I get that. Like I said, it was just low hanging fruit. Since you had ketoacidosis I didn't know if you were on the technology and am glad you are.

You had rheumatic testing. Did that include ANA?

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No, it didn't include ANA.

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Have you had tests for Rheumatoid arthritis, as well as Vitamin B12, D and C?

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I contacted my hospital and found out that I had an ANA test last year, which was less "< 320". My Vitamin D levels were slightly low at the time, but I've been taking it daily, and now it's within the normal range. Didn't perfrom a B12 test.

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@abdudawood

I contacted my hospital and found out that I had an ANA test last year, which was less "< 320". My Vitamin D levels were slightly low at the time, but I've been taking it daily, and now it's within the normal range. Didn't perfrom a B12 test.

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Due to my experience of longterm multiple symptoms and deficiency, I now inform others of my experience with B12 deficiency. It’s sneaky and destructive. Also, test first, before taking any to get accurate result. I hope you can find some answers,

REPLY
@celia16

Due to my experience of longterm multiple symptoms and deficiency, I now inform others of my experience with B12 deficiency. It’s sneaky and destructive. Also, test first, before taking any to get accurate result. I hope you can find some answers,

Jump to this post

I check my online tests and discovered that I took the Serum B12 vitamin bound to transcobalamin II test and it was >146.

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