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Suggest treatment for autoimmune encephalitis

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Posted on Sat, 7 May 2016
Question: Hello- About 6 months ago I was diagnosed with Autoimmune encephalitis and started on IVIG. I am somewhat better, but they are still trying to find the main source of my new health issues. I just saw an Endocrine for the first time and was changed from Levothyroxine 50 mcg daily to Synthroid 175 mcg. Prior to this, my BP and pulse have been consistently elevated. I have blurred vision, confusion, memory issues, fatigue, 20 lb weight gain and nightsweats in addition to multiple other vague symptoms.
I have elevated serum plasma free normetanephrines and a new MRI result that shows "the pituitary gland is mildly enlarged, measuring 9 mm in midline height. The gland may be slightly larger when compared to the prior study".

My big question for you is this. These results were sent to a non-surgical Endocrine doctor 2 hours away in XXXXXXX Ohio and a Head and Neck Oncologist where I live in XXXXXXX Ohio. Both of which coincedentally, gave me "work-in" appointments on the same day! Wonderful, but now I am not sure which is the right doctor for me.
Can you help me decide which doctor I should see for my circumstances. I can provide you much more information if you need it?
Thank you- XXXXXXX
doctor
Answered by Dr. Shehzad Topiwala (1 hour later)
Brief Answer:
Endocrine

Detailed Answer:
I follow what you are saying and I am sorry to note the troubling symptoms.

I suggest you start with the endocrinologist first. Once the thyroid and pituitary matters are sorted out, he or she will guide you further as to whether any more doctor consultations are necessary, if at all.

The elavil that you are taking could likely raise the plasma free normetanephrines.

You will need a comprehensive evaluation.

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

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Shehzad Topiwala (50 minutes later)
Thank you for your reply. Does it help your decision if you to knew the following has been the ongoing trend:

CBC -chronic eosinophilia, hgb low normal, WBC normal
Electrolytes -hyponatremia, hypokalemia, very low magnesium
Calcium- high normal
HbA1c (Glycosylated Hemoglobin = your 3 month glucose average)-not done
but constantly elevated glucose in random blood draws
Liver function tests-normal and normal LDH
Kidney function tests (BUN, Creatinine)- slightly elevated
TSH - TSH, HIGH-SENSITIVITY     7.875 uIU/mL     0.550 - 4.780 uIU/mL     H
Free T4- low/lower than T3
Anti Thyroid Peroxidase (TPO) antibodies- negative
Anti Thyroglobulin antibodies- unsure about
25 hydroxy Vitamin D- very low
CRP- 27
sed rate- always elevated
ACTH-normal
2 years ago diagnosed with Cortisol dysfunction based on saliva test - used Cortef on my wrists but stopped when i moved
i have visible tremors, postural hypertension and visable anxiety (best explained by always feeling like i'm in a "fight or flight" mode), can't catch my breath when talking, spontaneous red flushing of my face, facial swelling and periorbital edema (new onset), profuse sweating, and upper extremity swelling.
CT chest shows hilar adenopathy
u/s neck shows normal thyroid
ct and mri neck shows cervical lymphadenopathy on right and chronic left mastoid opacification
parotid gland enlarged on right- but no "tumor"
plasma free metanephrines normal, but elevate Normetanephrines when not on Elavil
ANA- speckeled pattern, but further specific studies normal
clubbing of fingers noted in physical exam

i have not needed to go to the hospital since 2003 when i was diagnosed with crohn's. The last 2 years i have been extremely fatigued and complaining of new onset anxiety, memory issues with decline in executive functions and trouble concentrating. I have been a normally functioning Physician Assistant since 2003 and became increasingly ill when i was working as a Professor teaching students in a PA program. They noticed my worsening symptoms in lectures and by my decline in organization of my presentations and confronted me with their concerns. I have not been working since October of 2015 because I am a liability treating patients, etc.

neuropsych testing was normal except for ADD pattern of "blocking"
EEG showed slowing
4 lumbar punctures had same pattern of inflammation with one NMDA antibody positive
lastly, we have noticed a distinct pattern of my symptoms being worse in the morning or after lying flat. i am in a stupor in the morning and unsteady. By 4 pm every day i am more "clear". I can communicate better through text or email, but can't seem to speak as clear and organized as my typed communication. I am extremely frustrated and can sympathize with dementia patients. I don't know what is happening, but it is noticeable to those who live with me or know me. I have followed all the variety of doctors orders including rest and therapy. The bottom line is i'm doing all the right things, but there is some major dysfunction with compensatory and/or my autonomic system. Any other advice would be appreciated. thank you.
doctor
Answered by Dr. Shehzad Topiwala (1 hour later)
Brief Answer:
Follow up

Detailed Answer:
I see.

There are several things in your reports that require a comprehensive assessment in-person.

I suggest you see an endocrinologist at the soonest.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Shehzad Topiwala

Endocrinologist

Practicing since :2001

Answered : 1663 Questions

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Suggest treatment for autoimmune encephalitis

Brief Answer: Endocrine Detailed Answer: I follow what you are saying and I am sorry to note the troubling symptoms. I suggest you start with the endocrinologist first. Once the thyroid and pituitary matters are sorted out, he or she will guide you further as to whether any more doctor consultations are necessary, if at all. The elavil that you are taking could likely raise the plasma free normetanephrines. You will need a comprehensive evaluation. 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