Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
What Causes Dyspnea, High BP, Headache And Fatigue When Diagnosed With Autoimmune Encephalitis?
Question: Hello- I was recently diagnosed with autoimmune encephalitis. Also, other testing showed amphetamines in my urine and a plasma free normetanephrind level of 1.3 nMol/L and normal plasma metanephrine. In the past I had a large ganglion in between my wrist bones removed and the surgeon made a point to refer me to rheumatology. Now I have 3 hard knots along my jaw and neck that are causing issues with right side facial swelling, hearing loss, blurred vision, lymph nodes, and radicular symptoms on the right. I also have drenching night sweats, flushing, profuse sweating, fatigue, upper Ext weakness, new onset high blood pressure and tachycardia, weakness, shortness of breath, headaches, and a horrible feeling like I am going to die every morning when I first wake up.
IV Steroids, sudafed, and vyvanse all have caused me to be hospitalized after taking them. I read about paraganglionomas and wanted to find out how these are diagnosed and treated. Is my level of normetanephrine elevated enough to consider Pheochromocytoma/paraganglionomas as the root cause of all these issues? Thank you.
IV Steroids, sudafed, and vyvanse all have caused me to be hospitalized after taking them. I read about paraganglionomas and wanted to find out how these are diagnosed and treated. Is my level of normetanephrine elevated enough to consider Pheochromocytoma/paraganglionomas as the root cause of all these issues? Thank you.
Brief Answer:
Possibly yes
Detailed Answer:
Your symptoms fit the characteristics of a Pheochromocytoma/ Paraganglionoma.
Your blood test result suggest the possibility of you having one.
You must undergo immediate testing to confirm the diagnosis.
If I were you, I would seek an urgent appointment with an endocrinologist. This is a life threatening condition if not treated right away.
Possibly yes
Detailed Answer:
Your symptoms fit the characteristics of a Pheochromocytoma/ Paraganglionoma.
Your blood test result suggest the possibility of you having one.
You must undergo immediate testing to confirm the diagnosis.
If I were you, I would seek an urgent appointment with an endocrinologist. This is a life threatening condition if not treated right away.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Are there other labs that you would reccomed doing immediately while i am waiting for my appointment? My GRowth hormone was pretty low as well. My vision is blurred and doubled on the right amd my right arm and neck are hurting and my right thumb is numb for the last 3 days. The ED doesn't listen.
i have been on levothroxine, metoprolol 25 mg, elavil and cymbalta. Each time I get IV steroids or take them, I crash in the following weeks. I have drenching night sweats, facial flushing and profuse sweating, headaches, neck pain and right facial and neck swelling with right sided blurred vision, right sided weakness, right sided hearing loss and lymph nodes in my chest and neck. My parotid is enlarged on imaging, they've biopsied a sublingual mass in my throat that was benign. Documented a right vocal cord lag with dysphagia and dysphonia. They did a PET scan of brain and whole body and said "it lit up" in the neck and abdomen, but they "don't know the significance of lymph nodes lighting up". I now have "rice crispy" sounding crepitus in my neck and fizzing in the back of my throat but a head neck ct showed no acute problems. I have worse headaches, short term memory loss, diagnosed encephalopathy and on and on. What speciality will help sort this out and can you yourself refer me?
i have been on levothroxine, metoprolol 25 mg, elavil and cymbalta. Each time I get IV steroids or take them, I crash in the following weeks. I have drenching night sweats, facial flushing and profuse sweating, headaches, neck pain and right facial and neck swelling with right sided blurred vision, right sided weakness, right sided hearing loss and lymph nodes in my chest and neck. My parotid is enlarged on imaging, they've biopsied a sublingual mass in my throat that was benign. Documented a right vocal cord lag with dysphagia and dysphonia. They did a PET scan of brain and whole body and said "it lit up" in the neck and abdomen, but they "don't know the significance of lymph nodes lighting up". I now have "rice crispy" sounding crepitus in my neck and fizzing in the back of my throat but a head neck ct showed no acute problems. I have worse headaches, short term memory loss, diagnosed encephalopathy and on and on. What speciality will help sort this out and can you yourself refer me?
Brief Answer:
Follow up
Detailed Answer:
When I see someone like you in my practice, I typically order the following blood tests in addition to a detailed physical examination:
CBC (Complete Blood Count, also known as Hemogram; includes Hemoglobin, WBC and Platelet counts)
Electrolytes (Sodium and Potassium in particular)
Calcium
HbA1c (Glycosylated Hemoglobin = your 3 month glucose average)
Liver function tests (SGOT , SGPT, Albumin, Bilirubin, Alkaline Phosphatase)
Kidney function tests (BUN, Creatinine)
TSH
Free T4
Anti Thyroid Peroxidase (TPO) antibodies
Anti Thyroglobulin antibodies
25 hydroxy Vitamin D
However, these are in addition to the main tests for confirming the presence of Pheochromocytoma/Paraganglionoma.
Typically your endocrinologist will order
24 hour urinary fractionated catecholamines and metanephrines
You must seek medical care emergently.
Now the fact that you are on elavil, it can potentially give a false-positive result with the test you underwent for plasma free metanephrines.
Despite this, in view of your compelling symptoms and other problems you are reporting, none of it can be ignored and systematic retesting after stabilizing your emergency issues is worthwhile.
Follow up
Detailed Answer:
When I see someone like you in my practice, I typically order the following blood tests in addition to a detailed physical examination:
CBC (Complete Blood Count, also known as Hemogram; includes Hemoglobin, WBC and Platelet counts)
Electrolytes (Sodium and Potassium in particular)
Calcium
HbA1c (Glycosylated Hemoglobin = your 3 month glucose average)
Liver function tests (SGOT , SGPT, Albumin, Bilirubin, Alkaline Phosphatase)
Kidney function tests (BUN, Creatinine)
TSH
Free T4
Anti Thyroid Peroxidase (TPO) antibodies
Anti Thyroglobulin antibodies
25 hydroxy Vitamin D
However, these are in addition to the main tests for confirming the presence of Pheochromocytoma/Paraganglionoma.
Typically your endocrinologist will order
24 hour urinary fractionated catecholamines and metanephrines
You must seek medical care emergently.
Now the fact that you are on elavil, it can potentially give a false-positive result with the test you underwent for plasma free metanephrines.
Despite this, in view of your compelling symptoms and other problems you are reporting, none of it can be ignored and systematic retesting after stabilizing your emergency issues is worthwhile.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Will the 24 urine give accurate results if I collect it when I am not in a "flare"? Also, if it is not pheo related and possibly a carcinoid pucture, are there any specific labs that you would recommend for that? I appreciate your sugestions and I understand the urgent nature of what is happening. However, I was admitted last week for blood pressure of 158/100, tachycardia, hypokalemia, low magnesium and sent home with a holter the next day and told to take an extra dose of Metoprolol 25 mg. I will hopefully be direct admitted this week because it seems the ED is not the best place to diagnose the underlying problem. I cant thank you enough for all of your help. We've been searching for an accurate dianosis for over a year now. Your opinion and recommendations may be what solves this puzzle and helps me get my health back.
Respectfully, XXXXXXX
Respectfully, XXXXXXX
Brief Answer:
Second follow up
Detailed Answer:
Carcinoid is a possibility also. Symptoms are not always specific.
5- HIAA ( Hydroxy Indole Acetic Acid) can be added to the same 24 hour urine sample along with creatinine.
Even if you dont have a flare, the test is helpful.
But more importantly you are on a medication that is known to elevate the test results in a misleading way. So your endocrinologist will help you sort this out when you meet him or her in person.
Second follow up
Detailed Answer:
Carcinoid is a possibility also. Symptoms are not always specific.
5- HIAA ( Hydroxy Indole Acetic Acid) can be added to the same 24 hour urine sample along with creatinine.
Even if you dont have a flare, the test is helpful.
But more importantly you are on a medication that is known to elevate the test results in a misleading way. So your endocrinologist will help you sort this out when you meet him or her in person.
Note: For more information on hormonal imbalance symptoms or unmanaged diabetes with other comorbid conditions, get back to us & Consult with an Endocrinologist. Click here to book an appointment.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
