Help! I think I have an endocrine disorder but Drs. say nothing is wrong...

[Guest Essie James]

Hi Everyone! I am SO glad i found this website!

 

I know in my heart that I have an endocrine disorder. I have recently switched to a whole new network of doctors hoping and praying this group will have help for me!

 

So the past two years I had undergone an extreme amount of stress (loss of family member, parents divorcing, domestic abuse resolved, loss of child, loss of house, unexpected homelessness at 18, mother abandoning and relocating to another country after meeting a man online, mother having pulmonary embolism resulting with her and I finding out we both have multiple blood disorders etc etc etc) that coupled with starting a new birth control pill (which i heard raises cortisol levels). I am currently on zoloft only and have no alcohol, drug, or cigarette use ever. I am definitely MUCH better now having worked through this all in counseling/church finding great support!! But I thought I should give a back story of when it all started!!

 

My symptoms:

 

Rapid Weight Gain (95 lbs in one year with normal healthy diet) AND despite constant diet and exercising w/ trainer, haven't lost a POUND!

DRY skin including terrible dandruff, red bumps on arms and legs, peeling skin on face with red cheeks but pimples on chin even with layers of moisturizers and lotions!

Brittle nails and hair SO dry!!

Unusual hair growth (not much YET but its still growing) - around jaw, neck, chest, and stomach.

BAD stretch marks on stomach, arms, breast, chest, back, legs, knees, etc... To the point of looking like I was pregnant with triplets! They were dark purple, now turning white/yellow.

Chronic Fatigue

Chronic Muscle Pain everywhere worse in pelvic area, lower back, neck, shoulders.

Short of breath but low blood pressure.

Swelling of ankles and feet.

Legs and arms skinny but belly and back huge! No buffalo hump on neck, though.

Legs and arms frequently go numb.

Constant nausea.

Irregular bowel movements

Frequent and urgent urination

Depression/Anxiety (a lot more well managed now than before zoloft was having terrible panic attacks)

Severe Hot Flashes

And all of a sudden I'll get back and chest pain and have hot flashes but blood pressure still normal.

Severe abdominal swelling with no cause, then goes back to normal in a few days.

AND MORE!

 

 

It's to the point where I had to quit my job and can't work thus leaving me unfortunately relying on fiance. I want to be my healthy self again! I was a model and competed in triathlons!!

 

I have seen:

 

Primary Care

Neurologist

Oncologist

Hematologist

Gynecologist/Obstetrician

Cardiologist

Nutritionist

Personal Trainer

Allergist

Physical Therapist

Rheumatologist

Gastroenterologist

 

None of them have been any help, trying every test in the book with everything negative. Had thyroid checked twice two years ago when all started and was normal. Also had CT scan, MRI, Xrays, POTS testing, Blood Tests, Urine Samples, Upper and Lower GI, Barium Swallow, Physical Endurance Testing, Etc etc etc etc I can't even remember the rest hahaha!

 

And JUST TODAY my new OB/GYN suggested I try and see an endocrinologist... FINALLY! Someone who may know what she's talking about. I have NEW HOPE!

 

Any advice or insight at all would be SO greatfully appreciated.

 

THANK YOU SO MUCH!!!!

[BDen13]

What blood tests did you have?

 

The tests that are typically used to diagnose Cushing's are the 24 Hour Urinary Cortisol test and the Midnight Salivary Cortisol test.

 

If you see the endocrinologist in the afternoon a blood serum cortisol test is inexpensive and easy, but isn't enough to rule the disease in or out. Blood serum cortisol taken in the morning is essentially worthless.

 

Have you made your endocrinologist appointment yet? It's important that you talk to one that specializes in cushing's syndrome or is at least familiar with it (steer clear of endocrinologists whose profiles talk a lot about diabetes, most of them know nothing about pituitary disorders). If you tell us where you live we can help you find one.

 

Have you been told that you have high blood pressure by any of your doctors? Also, have any of the doctors checked your potassium levels? Those are two dangerous things that Cushing's can cause that you can treat medically before Cushing's is treated surgically (if that's what you have). You say you have low blood pressure - that's quite odd if you do have Cushing's.

[twinkie]

Hello and welcome! You are in a good place for support, information and understanding. Your symptoms do sound very suspicious for cushings. Are you still on the pill? An endo with a good understanding of cushings will not allow you to test for it until you've been off bcp for 4 to 6 weeks as the hormones can skew the results. So you'll have to get off the bcp before testing if you want accurate results.

 

Otherwise, BDen 13 had some good advice to offer above. It can be very tricky finding a competant cushings specialist, particularly if you are cyclical. If you are are florid, however, an 8AM serum cortisol could prove useful. Midnight saliva tests, midnight serum cortisol tests and 24 hour urinary free cortisol tests are what you need---and tons of them.

 

Please get copies of all results and read all you can here.

 

love,

melly

[sagrae]

I am in the same boat as you, Ive been to 9 different drs in 2 years, Ive had 2 surgeries (sleep apnea) hysterectomy. My cortisol tsh t4 tend to be low normal, cortisol has gone to way below normal and t4 has been boarderline serveral times, im tired and i want to get better, I have lost my job, im a single mother of 4 and im to tired to help my children. When I tell the drs this they say we can test for......ect.. I want a diagnosis. Ive even been put on lithium to stabalize my moods, which ive gained even more weight. I would love to talk, email chat to somebody who understands

 

latest labs

tsh 1.94 t4 1.11

reference range tsh .40-4.50

t4 .8-1.8

cortisol 10.2

reference range 4.0-22.0

acth 20

reference range 6-50

cortisol 1 month ago

.6 4.0-22

testo

3 2-45

my tsh has gone as high as 4.14 but stays mainly around 2

saliva cortisol 4 months ago

am 1.6 7.0-10

md 1.9 3.0-6.0

ev .9 2.0-4.0

ngt .9 <1.5

I also have urine tests and other blood tests that have yet to come back, I was diagnosed with reactive hypoglycemia also after 2 seperate 6hr glucose tests done 1 year apart. please compare labs see if you see something thank you

[BDen13]

Sagrae, from those tests I see nothing to suggest that you have cushing's and in fact your saliva tests would indicate addison's disease.

 

The good news about Addison's is that it can be treated with medication. Show your doctor your Salivary cortisol results and ask for a prescription for hydrocortisone pills and see if they make you feel better. However I wouldn't rule out a thyroid problem either as those results are somewhat suspect as well. Hypothyroidism could result in the weight gain you complain of - it can also be treated with medication.

Edited July 10, 2012 by BDen13