Reply to I'm losing weight unintentionally and am worried

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[quote=Anonymous]My ChatGPT response.

I’m really glad you reached out. What you’re describing is not something to ignore, and your concern is absolutely justified. I’ll break this down into (1) what your symptoms mean medically, (2) what red flags you’re showing, and (3) exactly what you should do next to get the right evaluation quickly.
(This is not a diagnosis, but a medically-informed roadmap.)

⸻

⭐ 1. Your collection of symptoms together is concerning

Individually, many of these issues can be benign. Together, they raise the threshold for further investigation:

Long-standing diarrhea (3+ years)

– This already warranted the workup you had.
– Inflammation throughout the GI tract is not typical for IBS; it’s more consistent with:
	•	IBD (Crohn’s/colitis)
	•	Microscopic colitis (sometimes missed on colonoscopy if biopsies weren’t taken everywhere)
	•	Infectious or inflammatory causes
	•	Less commonly, endocrine or pancreatic causes.

Unintentional weight loss

This is a major red flag.
	•	You lost 16 lbs unintentionally since May
	•	8 lbs in 10 days is not normal, not explained by “IBS,” and should never be brushed off.
	•	No increased exercise, no calorie deficit, no major diet changes.

Neurological symptoms

Pins and needles, burning, pricking sensations, headaches → could indicate:
	•	B vitamin deficiencies (B12, B1), especially with chronic diarrhea
	•	Electrolyte imbalances
	•	An endocrine disorder
	•	Diabetes/prediabetes neuropathy (yes, neuropathy can happen before full diabetes)
	•	Autoimmune disease
	•	Medication effects (nortriptyline side effects were classic—good that you stopped)

GI symptoms + weight loss + neuropathy + inflammation

This is not typical IBS.
IBS does not cause:
	•	Inflammation on scopes
	•	Weight loss
	•	Nutritional deficiencies
	•	Progressive symptoms

⸻

⭐ 2. The IPMN

Your branch-duct IPMN in the pancreatic tail is important, but:
	•	IPMNs can cause pancreatitis, pain, and exocrine insufficiency.
	•	Weight loss can be pancreatic (fat malabsorption).
	•	MRCP in June showed stability — reassuring, but an MRCP does not rule out exocrine pancreatic insufficiency (EPI) or small cancers/masses obscured by inflammation.

This is why many patients get EUS even if genes are negative.
Your request for an EUS was medically reasonable.

⸻

⭐ 3. Why the weight loss is alarming right now

Dropping 8 lbs in 10 days without dieting is not normal and needs urgent evaluation.
It can reflect:
	•	Malabsorption (pancreatic, celiac, IBD, SIBO)
	•	Chronic inflammation
	•	Endocrine disease (thyroid, adrenal)
	•	Occult infection
	•	Metabolic derangements
	•	Cancer (GI, pancreatic, lymphoma—NOT saying you have this, but unexplained rapid weight loss must be checked)

⸻

⭐ 4. You need a different specialist — not the cyst clinic

You need one or more of the following:

✔ A general gastroenterologist who is NOT in the pancreatic cyst specialty clinic

The cyst clinic’s job is narrow: monitor cysts by size and genetics.
They ignored everything else, which is unfortunately common.

✔ A provider who will:
	•	Recheck you physically
	•	Evaluate systemic symptoms
	•	Review all your imaging and pathology
	•	Consider IBD, EPI, endocrine causes, and neurological symptoms

✔ Possibly an endocrinologist for:
	•	Rapid weight loss
	•	Neuropathy
	•	Prediabetes progression
	•	Thyroid/adrenal issues

✔ A repeat GI evaluation is appropriate NOW, not in a year.

⸻

⭐ 5. What tests would be reasonable at this point

These are the tests a good doctor would order for what you’re describing:

Blood
	•	CBC (anemia, infection)
	•	CMP (electrolytes, liver, kidneys)
	•	CRP/ESR (inflammation)
	•	Thyroid panel (TSH, free T4)
	•	A1C
	•	Vitamin levels: B12, B1, B6, D, folate
	•	Iron studies
	•	Celiac panel (tTG IgA and IgG, total IgA)

Stool
	•	Fecal calprotectin
	•	Fecal elastase (tests pancreatic function)
	•	Ova & parasite / GI pathogen panel
	•	Fecal fat test

Imaging / procedures
	•	EUS despite gene-negative status because:
	•	Weight loss
	•	Neuropathy
	•	Persistent pain
	•	Pancreatic cyst
	•	Prior inflammation on scopes
	•	Consider: repeat MRCP if symptoms progress

IBD evaluation

Did your October colonoscopy include:
	•	Segmental biopsies?
	•	A report distinguishing Crohn’s vs UC vs “nonspecific inflammation”?

This matters enormously.

⸻

⭐ 6. What to do today and what to tell the doctor

Because your weight is dropping fast, the next step is requesting urgent evaluation.

Urgent options:
	•	If weight continues to drop or symptoms worsen → urgent care or ER
(New neuro symptoms + rapid weight loss + GI inflammation can be emergent.)
	•	Otherwise: call your GI office and say:

“I have unintentional weight loss of 16 pounds since May, including 8 pounds in the last 10 days, ongoing diarrhea for 3 years, systemic inflammation on colonoscopy and EGD, neuropathy symptoms, and nausea. I need urgent evaluation — this is not IBS. I need labs, stool tests, and likely an EUS.”

If they refuse → request:
	•	Referral to a different GI
	•	Referral to endocrinology
	•	Or go to a large academic center’s GI department (NYC has many if you’re still New York area)

⸻

⭐ 7. I can help you prepare a script, timeline, or concise summary for a new doctor

If you want, I can create:
	•	A clean, one-page medical summary
	•	A timeline of symptoms and tests
	•	A script for what to say to get urgent evaluation
	•	A list of questions to ask the doctor
	•	Help finding a new GI at a major center (Cornell, Columbia, NYU, etc.)

⸻

⭐ Bottom line

You are not overreacting.
Your symptoms are not explained by IBS.
Weight loss this rapid is never normal.
You need a new GI, possibly an endocrinologist, and a proper systemic workup.

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