A TRUE Medical Myster

[supo]

Last year in May, I had very troubling physical symptoms that occured in this order:

a.Hairloss
b.Edema (all over)
c.Vasularities (broken capillaries from ankles to chest
d.Low Body Temperature (95-96 degrees)
e.Skin Changes (stretch marks, cellulite, rashes)
f.Significant skin sensitivity/pain - especially upon sitting
g.Emotional problems and swings.
h.Difficulty sleeping
i.Constipation
j.Lack of Perspiration even during exercise.
k.Easy weight gain
l.Ascites
m.Pigmentation (hyper/hypo combination)

I have a past history of Graves Disease (1992) which has always been in remission based on normal thyroid values.

The local doctors could not diagnose the condition - despite, a low aldosterone, high FSH and low normal testosterone values which they felt was clinically insignificant.  After getting burnt-out on trying to get a diagsnosis, I resorted to a month trial of methylprednisolone which brought much relief and significant improvement in all symptoms.  Realizing that prednisone helped and the desire to avoid permanent treatment on it without a diagnosis, I went to the Mayo Clinic, Rochester.  They were unable to make a diagnosis and seemed to focus on other areas other than my primary symptoms and complaints.  I left disappointed, frustrated and gave-up.  As my condition continued to decline, I went back to my primary care physician who took some labs, and below are the results:.

Liver Enzymes
AST - 56 H (10-40)
ALT - 101H (9-60)

Sex Binding Hormone (Produced by the Liver)
SHBG - 74H (9-45)

Female Hormones
FSH - 11.2H (1-6)
LH - 9.7H (1.5-9.3)
Estradiol 50H-Normal (11-54)

Male Hormones
Testosterone, Total 854 (250-1100)
Testosterone, Free 59.8Low-Normal (46.0-224) .
Testosterone, Bioavailable 120L-Normal (110 - 575)

I feel I need an expert endocrinologist to evaluate in the Hypothalamus-Pituitary-Adrenal system so I can receive a thorough evaluation to discern where the problem in my dysfunction is originating.  I have a twin brother that does not have these issues.  I have a lymphedema specialist that thinks the clinical presentation is lymphedema (bilateral upper and lower extremities).  The Mayo Clinic "suggested possibly" lipedema due to the pain.  Another doctor suggested "Wilson's Temperature Syndrome" (due to 10-1 ration T3 to rT3) and began T3 therapy which helped me lose weight, perspire and raise my body temperature, but I'm cycling down due to my physician directing me to be off everything but food prior to blood work to get a new baseline and determine T3 influence on the endocrine system.    

I went for CT scan today with contrast.  When I drank the contrast last night - miraculously - all of my pain wenr away.  First time in over a year.  That told me two things - it's not in my head and I'm not depressed that's causing this.  When I woke up in the morning, and had a banana, the pain crept back in.  Later that morning prior to the esam, I drank the contrast and again pain went away. I asked the practicioner what was in it and she said balarium sulfate.  She said it coats the stomach, small and large intestines, etc;  Is it possible that I have a gut problem?  I've had an intestinal permeablity test done and all clear and a bacterial culture, normal.  After I ate today, healthy, the pain was so excruciatig Ijad to get out of the car on the interstate and stand and walk.  I eventually drove to the doctor who prescribed conpazem ? and percocet.  It's helping quite a bit.  The liver doctor I saw last week won't do a colonoscopy despite my famiy history of colon cancer.  He think it's an endocrine metabolic problem.  He was disturbed by the fat distribution/water retention saying it's clearly a problem.  I look like an obese woman who had kids and circulation problems - yet, I'm 43, 150lbs, workout - but I've got major cellulite/stretch marks and I feel let down because knowbody knows or is doing anything constructive and everything is slow.


Thank you,


Jeff

[Smilerdeb]

I would say your Graves has 'fired up' again and you do need to see an Endocrinologist and get yr FT3, FT4 and TSH done again to rule out hyperthyroidism.
Not all hyper T's lose weight with Graves.
I gained 16kilograms and like you , had the bloating, elevated liver enzymes, poor digestion etc.

I also believe I had graves from as early as 1985.

Get your Doc to do your labs again.

I had RAI & TT (keyhole) last year 2008 and doing better than I have in years and lost 11 kilograms in the bargain too :)