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  • Chris, help with lab results

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    Old 10-05-2004, 01:05 PM   #1
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    Chris, help with lab results

    Hi. I am a 40-year-old female and have been previously diagnosed with hypopituitarism but there isn't a tumor involved and so it is presumed to be due to lymphocytic hypophysitis. I have been on thyroid meds for 20 years for hypothyroidism, diagnosed with hyperprolactinemia about 12 years ago, for awhile my LH/FSH were suppressed and I was deficient in all sex hormones and Growth Hormone and was on replacement until about 15 months ago and during that time had also been on and off bromocriptine for the high prolactin. My estradiol/progesterone and LH/FSH have returned to normal since being off the replacement. My prolactin level had been normal until recently and in the last year has been increasing with a jump to 149 last month.
    Now to the adrenal DHEA-S was 33 ug/dl (range 35-430) last October. My Pregnenolone was 10 (ref 10-230 ng/dL) and my testosterone basically stays low. Last Month's levels:
    Cortisol 10.2 mcg/dL at 2 p.m. ref: 8 a.m. 8-27 mcg/dL
    4 p.m. 2-18
    ACTH <5 pg/mL at 2 p.m. ref: 5-46 pg/mL
    IGF-1 117 ng/mL ref: 90-360 (too extreme in my opinion) my endo says my IGF-1 is "normal", I think it's way too low

    The nonexistent ACTH prompted my endo to order a cortrosyn stim test and I just got my results: (done 2 weeks ago at 11:10 a.m.)
    Cortisol baseline (ug/dL): 19.8 ref: 4 - 27
    Cortisol 60 minutes (ug/dL): 47.3
    I was thinking that he should have also checked the aldosterone response but he only wanted to check the cortisol. My problem is this: I have been gaining about a pound a week since May (without changing my eating habits), have continued to be fatigued, get winded doing tasks that used to be no big deal, run to the bathroom frequently at night, and have had abdominal distention from the ribcage down and the entire right side. All weight gain/fat deposits have been in my abdomen, hips, and thighs. I have thin lower arms and hands, face is much rounder and I have the "hump" on the back of my neck, and have had increased body hair growth all over. The endo didn't seem too concerned with all this and basically ignored the reference to the hump, hair growth and central weight gain. These all seem to point to Cushing's but yet my labs don't. Chris, any ideas? Does it seem feasible that it could be Cushing's yet due to the pituitary problem, my cortisol levels don't indicate it? I've been thru TOO MANY endos to count and it took me 5 years between this one and when I quit the one prior to go to one. My primary doesn't want to "step on any toes" as far as doing any further endo tests. Any suggestions would really be helpful. I haven't been able to work for the past 2-1/2 years due to the endo problems and fibromyalgia, depression. I just want to feel normal again! Help from anyone is appreciated! Sorry for the long post and thanks for listening.

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    Old 10-05-2004, 09:17 PM   #2
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    Re: Chris, help with lab results

    Thanks for the quick response. I do think that the hypopit was likely caused by a head injury (I think it was when I was a kid and fell off my bike and hit my head on the concrete). I have had quite a few MRIs over the past 13 years and each one they've never seen a microadenoma. The one prior to this one was in 2001 when I first started seeing this endo. I will probably ask for another one either next year or the following, the prolactin level has been the dictating factor for those. I too was surprised that my cortisol level started out at 19 as other cortisol levels I've had were in the lower end of the "normal range". Earlier this year I did my cortisol at both 8:30 a.m. and 4 p.m. and the a.m. was 14 (ref 8-27 mcg) and the 4 pm was 6 (ref 3-17 mcg).

    As far as what hormones I'm taking, I am only taking Synthroid 200 mcg. I've never been on any cortef or prednisone so that's not a problem. I should tell you though that ANY medication I have ever had to take requires MUCH HIGHER doses than what most people require. When I was trying to find the right dose of estradiol, I had to try numerous brands, and finally found that the Vivelle patch worked prefectly for me....however, I required 3 0.1 mg patches every three days to keep my level at a normal one! I also took Prometrium 100 mg x 10 days and then 200 mg x 10 days each month to keep me cycling. Over 5-6 years, I tried several types of testosterone supplementation and from 2001-2003 I did have injections once a month I think it was 50 mg of deca. I did take compounded DHEA and compounded T3 for about 4-5 years also (discontinued last year as well). I had also been on growth hormone from 2001-2003 (my IGF-1 level when I started on it was 65 and I had actually gotten it up to 253 while on it and just before I went off everything, I was beginning to feel like my old self). I had to go off of everything because of cost and lack of income/insurance. Late 2001, I lost my job, insurance, landed in the hospital once for DVT/hip abscess and two months after that for excess bleeding from a drug interaction w/the coumadin. Early last year my husband landed in the hospital with CHF, and two months later we lost our home. Obviously stress has been a major factor in my life for the last three years!

    I am aware that the DHEA/testosterone could cause increased hair growth, although I also took aldactone to combat that side effect and actually had taken the aldactone up until about Feb of this year. The hair growth seemed to be more evident after I had gone off all hormones (last one d/c'd being the GH) but the thyroid.

    Here's the rest of the test results from Sept:
    TSH: < 0.03
    FT4: 1.4 ng/dl (ref: 0.8 - 1.8)
    FSH: 8.3 mIU/ml (ref: 3.3 - 11.2 - day 2)
    LH: 5.0 mIU/ml (ref: 2.0 -12.8)
    Estradiol*: 26 pg/ml (ref: 19 - 64 - day 2)
    *tests earlier in the year were in the 100s-200s for other times of cycle

    As for the endo, he's actually the first one who diagnosed the hypopit and put it all together AND wasn't against my being on the growth hormone (which was being prescribed by an ob/gyn who specialized in GH and other hormones and referred me to this endo). What's frightening is that I HAD been to endos at the University here who specialized in Pituitary disorders -- and have since started a Pituitary tumor/disorder clinic -- and what I got from them was "there's no known entity for her cluster of symptoms" and "you need to see a psychiatrist"!!! These comments from the "EXPERTS" !! The scary part is the U med center is "world-renowned" for their specialists. HA! They were so good at ignoring my pleas for lab tests that I ended up with osteoporosis at the age of 31!!!

    Ok, enough of my rambling. I hope this additional information is helpful to you. Thank you for your input and help. I'd love to have a collection of endocrine books as you have. Like you, I study medical conditions and have had a particular interest in the hormone end of things since I started going thru all this 13 years ago. Again, my apologies for yet another lengthy post!!!

    Thanks again. Laura

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