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Dr Adi
Dr Adi, Professor
Category: Endocrinology
Satisfied Customers: 440
Experience:  Director of the Pediatric Diabetes Clinics at UCSF.
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I'm getting desperate at this point. Every doctor seems to

Customer Question

I'm getting desperate at this point. Every doctor seems to shift me to another and while I've always deferred to their expertise, my mental health is coming into play. I have wonky labs, bad appetite and joint issues. Different docs are treating *symptoms* but no one is treating the root, I believe. Pardon the length, there's a lot of symptoms in play. I'm not sure which specialty would help, so I chose endocrinologist as that specialty seems to touch on most of the symptoms over any other.
33yo, 5'4, 210lbs, sedentary (due to chronic issues), smoker, white (Western European)
I am currently awaiting an ankle reconstruction for OCD in right ankle. This comes after several years of SI-joint RFAs due to extreme pain. I'd complained about my ankle, but people kept telling me I'm too young to have major issues, until someone finally ordered an MRI and found out how bad it was. Now, I have to go to a specialist's specialist due to the severe damage and locked up. In fact, no one takes me seriously, just tells me I'm too young. One doc labeled me a drugseeker, despite the fact that I've been trying to get answers or help, and have not once asked for any of the scripts I have. Docs insist. I have always followed their instruction, signed open records releases between them and always been willing to do as they say/recommend/prescribe.
Current symptoms and meds:
**Severe pain in lower back and right hip, knee and ankle (only back and ankle have MRI): Norco 10-325 up to 4x day, Fentanyl patches 50mcg/72 hours (no one can explain why opiates don't work the same way on me, I can stop all this and have zero withdrawal symptoms, and these meds *increase* my alertness, do not experience drowsiness, nausea, etc.)
**Severe migraines that have been increasing with intensity/frequency (taking Amitriptylin 10mg 2xday)
**Severe insomnia - this has been going on for about 8 years. Without help, I stay awake 30-38 hours. Every few years, a doc removes the Ambien (10mg) for a few months to "see". It never works. Sleep study w/latency revealed "abnormal" sleeping, but no diagnosis. No apnea, no narcolepsy.
**I had severe endometriosis which I lost my uterus 5 years ago next week. While I was pregnant, I had to take progesterone to carry the pregnancy. Still retain ovaries.
**Itchy Rash - About 17 months ago, I started getting a rash on my back. No explanation, ignored it for 4 months thinking it might be heat rash. It never went away. Doc saw it, told me to use a steroid cream on it. I used it daily at first, but it only lessened the problems, didn't take it away. So I currently use the steroid cream when it gets unbearable, once every 6 weeks or so.
**Mental health issues - Several years ago, I started having issues with anxiety and depression. I was a social butterfly in my teens. I have become hyper-self-conscious and am increasingly afraid to go out in public. I was also diagnosed ADHD. Lexapro (20mg) and Strattera (100mg 1x day) are the meds I use for this.
**GI issues - random cycling of normal days and severe diarrhea days. Sometimes, oily foods can do it like fries, other times, it's a bowl of cereal. Then I'll have the same foods and nothing happens. Cannot pinpoint it to lactose, fatty foods, fruits, veggies or anything else. Truly random on whether I'll be having issues, length also doesn't seem to follow any pattern - it can be one instance or 3 days worth. Imodium is the go-to.
**Heart irregularity - occasionally, my heart will start fluttering really badly, even in absence of panic or excitement. It can be as little as 10-15 beats, or last a minute or so. Doc said it was because I was obese.
**Incredibly poor appetite - my doc had me keep a food diary in which several days I didn't eat, I drank a few Boosts to try and help, but he saw a few Cherry Cokes on there across 4 days and a couple coffees and said "there's your problem". I have grown to hate eating, not because I'm worried about my fat/body image, stuff just tastes terrible, I don't feel hungry - I don't get the stomach growling, hunger pains. Sometimes I just feel full already. I am fairly sedentary and for years I stayed at the same weight, but I think it's finally caught up to me, as I've lost 15 lbs since February.
**Joint issues - already detailed ankle and back issues
**Vocal issues - while I am a smoker, it seems odd that all of the sudden I lost nearly an octave of mid-range vocal issues, but I can still speak/sing above and below the missing tones. Whether it's a higher-pitched giggle that's missing or singing, it just disappeared one day. It's not "there but raspy", nothing comes out, at all. But above that range, and below? Everything is clear and normal. It's like selective laryngitis.
Most recent labs: sorted first by most consistently worsening, to new recent panels. (The result for B12 is missing but I've been chronically low in the past, even before the appetite issues got this bad, it's also very low.)
Continued worsening (most recent result):
Neutrophil, Abs
11.3 th/uL (High)
WBC
16.9 th/uL (High)
Vitamin D 25 OH
12.70 ng/mL (Low)
AST
6 IU/L (Low)
New results (only irregular result, most recent panel):
Lymph, Abs
4.6 th/uL (High)
HDL
29 mg/dL (Low)
My doc sent me the card "Your results are normal" but instead, scratched out normal and wrote "stable", despite the new irregularities and said "see you in a year".
I am UTD on all immunizations.
I do NOT have a fever, cough, congestion, etc. The highest my WBC has gone without any symptoms of illness has been 22. I was seen once about 4 years ago for a mild bronchitis infection, which revealed a 26. Despite feeling mostly fine, the doctor insisted on 3-days of IV antibiotics and inpatient.
I have asked my GP about quitting smoking and using Chantix, I used it successfully before, and was smoke free for a year before some serious life issues that led me back to it. He told me to wait until my health is sorted... but doesn't help me sort anything.
I hope someone can help me. I can't believe that I would have so many diagnosis's, so many meds, so many issues and not a thing is connected. How common is it to have 15 different diagnosis's and not any of them be connected?
Submitted: 4 months ago.
Category: Endocrinology
Expert:  DocPhilMD replied 4 months ago.

Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.

Expert:  DocPhilMD replied 4 months ago.

Have you seen a hematologist/oncologist?

Customer: replied 4 months ago.
I have not. GP says I'm fine, pain management doc repeats the SI stuff.
Expert:  DocPhilMD replied 4 months ago.

That would be the next step

you could have a bone marrow disorder causing all of this

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