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Polycythemia Vera, Autoimmune Issues or Renal Cell Carcinoma
I am reaching out to this community to see if anyone has experienced a similar cluster of multi-system symptoms, severe lab findings, and medical dismissals while I wait for my upcoming specialist consults. Over the past 18 months, my health has deteriorated significantly, and I am trying to make sense of how these complex pieces fit together.
Relevant Medical Background:
* Cancer & Genetic History: Papillary thyroid cancer survivor and CHEK2 positive.
* Autoimmune Markers: ANA (antinuclear antibody) positive.
My Primary Symptoms & Recent Lab Findings:
* Vasomotor & Neurological: Persistent dizziness, severe headaches, constant exhaustion, noticeable facial flushing, and profuse sweating (especially night sweats).
* Skin & Abdomen: Intense generalized itching and persistent upper left abdominal pain/pressure.
* Metabolic Crises & Urinalysis: Severe non-diabetic hypoglycemia that recently led to a neuroglycopenic seizure, loss of consciousness, and emergency rescue glucagon (Baqsimi). My urinalysis shows protein, ketones, and bilirubin.
* Absolute Polycythemia: Persistent Hemoglobin of 17.2 g/dL and Hematocrit of 50.6%. These numbers remained elevated even after hospital IV hydration trials, ruling out simple dehydration.
* Rapid eGFR Decline: My eGFR has dropped sharply in 18 months from >90 down to 63.1 mL/min/1.73m².
Medical Gaslighting & Dismissal:
Getting care has been an uphill battle. My primary care physician dismissed my findings until I brought in a medical advocate, who finally helped secure referrals to Nephrology and Hematology. When I asked my endocrinologist for further testing regarding the hypoglycemia, he dismissed me, laughed, and sarcastically asked, "What are you looking for, a tumor?!" He prescribed Acarbose, which has done absolutely nothing to stop the drops.
Where Things Stand & My Questions:
I am finally waiting on comprehensive workups with Nephrology and Hematology (to test for JAK2 mutations, erythropoietin levels, and detailed renal/abdominal imaging).
Given the hyperviscosity symptoms, flushing, and severe itching, I keep wondering about Polycythemia Vera (PV). However, considering my history as a thyroid cancer survivor, being CHEK2+, and having a rapid eGFR drop alongside upper abdominal pain, persistent polycythemia, urine abnormalities (protein, ketones, bilirubin), and severe non-diabetic hypoglycemia, I am deeply concerned about a secondary renal source like Renal Cell Carcinoma (RCC) triggering secondary erythrocytosis or paraneoplastic hormone production.
Has anyone here dealt with severe medical dismissal before finally getting diagnosed with PV, RCC, or another complex condition? Has anyone presented with polycythemia alongside rapid kidney decline, severe hypoglycemia, or urine findings like protein/bilirubin? Did your care team lean toward a primary bone marrow issue like PV, an autoimmune process, or a secondary renal/paraneoplastic cause like RCC? Any advice on key questions or specific tests I should advocate for during my upcoming hematology and nephrology consults would be deeply appreciated!
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@virgoian84
Hi Gina. What a great birthday profile picture! I’m just sorry that underneath the happiness you’re obviously suffering more than you’re letting on. Being treated dismissively by your doctors is horrible. Especially since you have previously had thyroid cancer and are CHEK2 positive, you have a right to be concerned for changes in your health! I’ve on the receiving end of that ‘crazy woman’ treatment myself. Fortunately my faith in the medical system has been restored over time. Let’s hope the same will happen for you with your upcoming appointments with your two specialists in nephrology and hematology. As for your PCP and endocrinologist, I think you can do better than those two!!
It is interesting that you brought up erythropoietin levels. With your elevated hematocrit, I was going to ask if you’ve been tested for sleep apnea. Even minor breathing issues can have the kidneys calling for an increase in production of red blood cells.
This may be way off base but I’m tossing it out to you because it is sounding very familiar with the wide range of symptoms you’re having. A friend of mine went through something very similar. She had many of the same symptoms including debilitating headaches, vasomotor and neurological issues, declining kidney function, blood and glucose numbers were way off, etc.. Plenty of tests, no definitive answers.
At one point a hemotologist suggested testing for sleep apnea! The tests results were shocking. She was having apnea events several times per minute! During the night, her 02 levels measured into the lower 60s…causing serious risks to her health! She was ultimately fitted for a C-pap machine and has had a total reversal to good health. Turns out that oxygen and restorative sleep is important. ☺️
Back to your upcoming appointments. I’m sure your hematologist will pay attention to your elevated hematocrit and hemoglobin values. Most likely will run a genetic panel to see if there are possible links to mutations. But that may only be one piece of your complicated puzzle.
Are you in an area where you have access to a larger teaching/research hospital? That may be where you get a better team approach to decipher your list of symptoms.
You previously had thyroid cancer. Has there been any changes in your thyroid numbers since all of your symptoms started?
With CHEK2 discovery, have you had a recent colonoscopy?
@loribmt
Hi Lori,
Thank you so much for such a thoughtful, supportive message—it means the world to feel validated after feeling so dismissed by doctors lately. With my history of thyroid cancer and being CHEK2 positive, it gets exhausting having to advocate so hard just to be taken seriously!
To answer your questions about my tests and appointments:
Sleep & Headaches: I’ve actually had three sleep studies done, and all came back totally clear for sleep apnea. However, I still struggle tremendously with sleep and can't sleep at all unless I take Quetiapine. On top of that, I’m dealing with brutal, constant headaches, so there’s definitely still a major piece of the puzzle missing.
Specialist Team Access: My medical advocate is currently working to get me into UB Medical / SUNY Upstate in Syracuse so I can hopefully get a coordinated, team-based evaluation.
Thyroid Levels: My T4 is actually a bit elevated right now, even though I'm on 200 mcg of Levothyroxine.
CHEK2 & Screening: Sadly, I’ve had to have many colonoscopies over the years and they've found multiple precancerous colon polyps, so staying vigilant with screenings is a continuous process.
I'm really hoping my upcoming nephrology and hematology visits give us some real answers. And you are spot on about my primary doctor and endocrinologist—I am definitely looking for a new PCP and endocrinologist who will actually listen and dig deeper.
Thanks again for checking in and sharing your friend's story. It gives me even more motivation to keep pushing for answers!
Here is a straight forward list of what I’m going through. Maybe someone will have an AHAH! moment if you will!
Renal & Electrolytes
Rapid eGFR decline: Dropped from 90 to 60 mL/min/1.73 m² over 18 months
Low BUN-to-creatinine ratio
Low sodium (hyponatremia)
Low-normal potassium
Hematology (Blood Counts)
Dynamic blood count changes: Transition from high RDW with low hematocrit and low hemoglobin (anemia) to normal RDW with polycythemia (persistently elevated despite IV fluids)
Cardiovascular & Hemodynamics
Blood pressure shift: Historical high blood pressure (hypertension) transitioning to persistent low blood pressure (hypotension)
Metabolic & Autoimmune Markers
Hypoglycemia
Positive ANA (Antinuclear Antibodies)
Genetics
CHEK2 positive mutation
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