Avatar universal

Thyroid? Adrenal? Hormones? Something completely different?

Hello everyone!

I have been sick off and on my whole life. Things got worse (a lot worse) in November of 2011. It's been downhill since then. I've seen at least 20 different doctors for as many different symptoms. I have been diagnosed with:

Chronic Fatigue 1989
Lyme Disease    1989
Fibromyalgia      2003
GERD                2004
Sleep Apnea       2006
Fibromyalgia again  2006
Vitamin D & B12 deficiencies  2012
Adrenal gland nodule 2012
Lung nodules        2012
Lung scarring        2012
Positive Lyme test again 2013
Alpha-1 Antitrypsin Deficiency 2013
Heart hypertrophy and diastolic dysfunction 2013
Pulmonary mild restrictive process 2013
Chronic Kidney Disease Stage III   2013
Lyme Disease again  2014
Hypokalemia (low potassium) 2014
Thyroid nodules (5), biopsy of 1 nodule, the biggest one, showed no malignancy  2014

I saw my primary care doctor on 5/27. He had me get lab work done for thyroid, cholesterol, HIV and other stuff. The HIV test is disconcerting but needs to be done (I have 6 tattoos and 1 piercing).

I currently take 14 medications for all the stuff I have going on (that includes 2 pain meds for my back from a 1993 car accident, 5 psychiatric meds, among others). I researched drug interactions and I'm going to work my way down to just 5 meds TOTAL with doctor's approval and guidance.

Labs of note:

LOW Potassium 2.9
LOW Phosphorus 2.0
HIGH Sodium145
LOW Calcium 8.6
LOW DHEA-Sulfate 10.2
LOW Renin 1.02
LOW Serum Cortisol 1.2
LOW eGFR 47 - 70
HIGH Serum Creatinine 1.20
LOW Total Serum Protein 5.9
HIGH Cystatin C 0.75
LOW Progesterone <0.1
LOW Estradiol <6
HIGH T4 14.8

I have 5 pages of symptoms, these are some of them. SOB, fatigue, can't tolerate heat or cold, itchy skin, bruising, pain all over in muscles and joints, weight changes, appetite changes, bowel and bladder changes, swelling in feet, ankle, knees, legs, abdomen; stumbling, lightheaded, dry brittle nails, losing hair, eye problems, depression, anxiety, brain fog, forgetfulness, sleep disturbance (too much, too little).

ACTH test was normal a year ago.

I see a new Endocrinologist up in Denver (over an hour away) this Thursday (6/5). I don't know if this is Lyme, endocrine (thyroid, adrenal, pituitary), heart, kidney or possible (and hopefully not) HIV OR a combination of things. I hope this new doc is helpful and if she can't help me will at least point me to someone that can. My primary doctor (I just saw him for the first time, I've been seeing the PA for about 20 years) seemed very concerned and interested in what's going on with me. He actually took a copy of my 7 page symptom list and my multi-page medical history (I've been keeping track since the auto accident in 1993).

I'm hoping to get new test results before I go to see the endocrinologist on Thursday so I'll have more info to give her.

I'm stuck and puzzled. I have no idea what is going on. I know I will have to wait for labs but just wanted to get some input from those who have gone before me. What tests or scans or procedures should I absolutely request?

Thanks for getting through this long post and thank you for any help you can give me. If you need any additional information please let me know.
2 Responses
1756321 tn?1547095325
Alpha-1 Antitrypsin Deficiency is a genetic disorder and the organs most commonly involved are the lungs and the liver.  Lung disease does not usually present until 30 to 40 years of age. Not everyone with Alpha-1 Antitrypsin Deficiency will develop liver disease.

From the Canadian Lyme Disease Foundation  - Symptoms...

"Lyme disease symptoms can appear quickly or gradually over time, and they are incredibly varied and can wax and wane. The first physical signs of Lyme infection are often flu-like symptoms – sore throat, headaches, congestion, stiffness, etc. – so many people, including doctors, dismiss the symptoms as the flu.

During its nymph stage, a tick is only about the size of a period on a sentence. Many people are infected by nymph ticks, but don’t suspect Lyme disease because they don’t recall being bitten. In fact, 50% of people infected don’t remember being bitten.

Top 5 symptoms of “early” Lyme disease

Rash at site of bite (over 50% of people report no rash of any kind)
Rashes on other parts of your body (over 50% of people report no rash of any kind)

Rash basically circular, oval and spreading out (more generalized)(over 50% of people report no rash of any kind)

Raised rash, disappearing and recurring (over 50% of people report no rash of any kind)

Flu like symptoms: Fatigue, fever, headache, joint aches, stiff neck, backache, swollen glands (many people do not get these early flu-like symptoms)

Other symptoms of Lyme disease

Head, Face, Neck:
Unexplained hair loss
Headache, mild or severe, seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell’s Palsy, Horner’s syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems
Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose

Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights, peripheral waves or phantom images in corner of eyes

Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears

Digestive and Excretory Systems:
Irritable bladder (trouble starting, stopping) or interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System:
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems:
Shortness of breath, can’t get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, heart blockage

Neurologic System:
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Light-headedness, wooziness

Psychological Well-being:
Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety

Mental Capability:
Memory loss (short or long term)
Confusion, difficulty thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Difficulty finding commonly used words
Stammering speech
Forgetting how to perform simple tasks

Reproduction and Sexuality:
Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain

General Well-being:
Phantom smells
Unexplained weight gain or loss
Extreme fatigue
Swollen glands or lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a “flu-like” illness, after which you have not since felt well
Low body temperature
Allergies or chemical sensitivities
Increased effect from alcohol and possible worse hangover"
Avatar universal
Thank you so much fora all that information. I know I am mildly deficient when it comes to Alpha-1 Antitrypsin. I don't think I have any symptoms from it but I'm not sure because no doctor has taken a complete enough look at my medical history to figure it out. I have been diagnoses with Lyme (when I was originally bit in 1989, had all the symptoms including the bullseye rash) and with Chronic Lyme disease in February of this year (which of course if controversial). I have classic symptoms of everything it seems so no one really knows what to do.

I did see the new Endocrinologist yesterday in Denver but didn't find her to be of much help. She did order an ACTH Stimulation test for this morning so I drove up to Denver again today. No matter what the test results are I wouldn't see her again for 2 months. That honestly just doesn't make sense to me. But what do I know, I'm just the patient. LOL

I also have an appointment with my primary doctor Monday afternoon. I will get lab results that day and see where he wants to go with all this. He assumed the Endo wouldn't be much help and told me to see him if she wasn't and he'll try to figure out what it going on.

I know that doctors just don't get that waiting another 2 months and being sick the whole time is not okay. Especially since I've already been sick for 2 1/2 years. I have not found one specialist who can do anything to help me. All they do is give me pills (that I don't need and that usually have all kinds of side effects) and tell me to come back in 2 months, 6 months, a year. I'm really hoping that my new primary doctor can figure something out.

Again, thanks for all the info. It is very helpful.
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
Avatar universal
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
The first signs of HIV may feel like the flu, with aches and a fever.
Frequency of HIV testing depends on your risk.
Post-exposure prophylaxis (PEP) may help prevent HIV infection.
Millions of people are diagnosed with STDs in the U.S. each year.