SERIOUS Hormonal Issues - Need ADVICE!

[SUPO]

In May 2008, I had unusual medical symptom - edema in the ankles, then the thighs, abdomen, chest and arms. Then what followed was a drop in body temperature to consistent 95 degrees. A faint but consistent red rash on the right arm, skin pain upon sitting (still present), cellulite appearance on my buttocks, inner thighs, abdomen. Stretch marks on my upper thigh and my appearance became feminine. The skin became soft and rubbery.

I went on a tour of doctors and came up with no answer - even went to the Mayo Clinic. The bloodwork had a slightly elevated AST/ALT Liver Enzymes, FSH, and low free testosterone perce and they said it wasn't clinically significant.

The new bloodwork came back from my primary and came back with these results:

AST - 56 H (10-40)
ALT - 101H (9-60)
SHBG - 74H (9-45)
FSH - 11.2H (1-6)
LH - 9.7H (1.5-9.3)

Testosterone, Total 854 (250-1100)
Testosterone, Free Low-Normal 59.8 (46.0-224)
Testosterone, Bioavailable L-Normal 120 (110 - 575)
Estradiol H-Normal 50 (11-54)

It's my understanding that SHBG is what attaches to Testosterone, and the remainder (FREE) is what is used by the body. The SHBG is produced by the liver (and I believe another organ). If you look above, the female hormones are above normal, the testosterone levels are very low.

My thyroid hormones are off because I'm being treated for Wilson's Temperature Syndrome.

My CLINICAL symptoms - I look like my mother and a woman that had kids and eats poorly. The cellulite from my knees to my breasts is disturbing and I look like a woman (but no boobs thank God). My doctor noticed one nipple is yellow and the other one pink which she said was significant.

Now, what triggered this? I was on Proscar 5mg for hairloss when this started - and Avodart .05 mg - alternating daily, and minoxidil for hairloss. I stopped it, but the symptoms did not go away. Prednisone (they thought it was inflammation) DID help about 80%, but when off it, it returned. Because they thought it was inflammation, I resumed in lower frequency - about 2x per week - minoxidil and Avodart.

The one thing that is consistent is a rise in these hormones. I was retaining more water recently and worsening of symptoms, so my primary gave me SPIRO - so I dropped the minoxidil/avodart because of Spiro's known affects. It helped with the fluid, however, I was told to drop it by another doctor because he felt that's what caused this - however - I had these symptoms for a year without it - so I don't believe the spiro did anything but exacerbate the situation.

A lymphedema therapist is (seriously) going to wrap my legs and arms to get rid of the water. He says it can help fat mobility.

Can anyone here offer any help??? Dieting and exercising has minimal effect on the symptoms. I can feel that it's a mix of fat and fluid in the subcutanous layer of the skin. It's been suggested that I have Lipedema (a woman's disorder) that is a painful fat syndrome. My research has led to perhaps Hypogonadism or Andropause (I'm 43). My doctor thinks it's my adrenals, but she sent me to have a testicular ultrasound.

Another symptom - broken blood vessels, capillaries in my legs, ankles, torso. I really am beginning to look like my mother and my sisters who are obese.

I eat right, swim, do cardio, tone training (I was told not to lift heavy because it'll compromise the lymphatics which are already congested). I eat right. My weight when this started - was 165. I'm currently 150. They symptoms were there at 165 and I've been 165 before and dropped and it's not weight loss. Never had a "fat" issue.

Please tell me where to go, what tests to do. My PCP is new and the opinion of doctors I've seen don't really know what it is - they're guessing - and it's usually exercise, don't eat salt and heriditary. The clincher - my TWIN brother has none of this. My worse symptom - painful skin on sitting on my ass, back of thighs, pain in the swollen areas.

All help is GREATLY appreciated!!!

 

[timtim]

you need dr. house, not a bunch of meatballs on ef. i couldnt even imagine giving out training/diet advice to someone with such a list of maladies to deal with. i realize youve been to plenty of docs buts you need to find a specialist who can help you. i really wish you the best of luck. its crazy how the human body works.

 

[SUPO]

I wanted to add that my ejaculate volume is pretty low, about the size of a dime (frequency about 1-2x per week ejaculate). On second release, no ejaculate.

 

[SUPO]

I understand, Tim...just thought I might find someone who might have some direction or feedback to point me in. I've even been to the Mayo Clinic in Rochestor, and they couldn't get a diagnosis - this was in October.

 

[timtim]

I understand, Tim...just thought I might find someone who might have some direction or feedback to point me in. I've even been to the Mayo Clinic in Rochestor, and they couldn't get a diagnosis - this was in October.

it really seems like a vastly complex issue. im not sure there are many members here who could really help. i hope there are though for your sake. good luck. maybe chris903120 (whatever his handle is) could help.

 

[searay]

since your estro levels are high-normal and your test levels are all low-normal have they tried lowering your estro and elevating your test levels? makes sense to me as people who want a sex change to a female take estro and those who go from female to male take test and estro eliminators.

 

[joe d]

definately work with the doctors.

 

[cryptosporidium]

its a pain, its frustrating.. but you just have to keep interviewing doctors until you find one thats willing to work for you. i had to see 9 specialists before i found one who had any common sense. i know you said youve made the rounds, but what type of doctors were they? have you seen many endocrinologists?

 

[zedhed]

Dude, I dont have any advice for you, as I would have suggested Mayo but you already did that.
I feel for you not that it does you any good, and you are in my thoughts. I sincerly hope the best for you.
I hate to suggest or say this but have you been screened for cancer? Really am sorry to bring that up.
Good luck to you.

 

[schneiderc2004]

Supo,
I'm sorry to hear that you are going through this. You need to find a good Endocrinologist asap. PCPs won't know what to do. It does sound like a hormonal imbalance. Be assertive with the Endo docs and have them do a full hormonal blood test (Test, GH, Thyroid, Cortisol, Adrenal, Insulin, Estrogen, etc. Might as well have them do a full lab work again to find what's wrong. Be honest with the docs as far what you have taken before. DHT blockers can cause hormonal problems in some people. Hope this helps, keep us updated, and good luck!

 

[Mac173]

Wish I could help but I'm not gonna attempt to pretend that I know enough to give any serious advice besides what's already been suggested and to see an endo.

And good luck by the way.

 

[cuts82]

I wanted to add that my ejaculate volume is pretty low, about the size of a dime (frequency about 1-2x per week ejaculate). On second release, no ejaculate.

Is that ment to say 1-2x a day?,
how is your sex drive threw all of this? low i assume?

 

[bblazer]

I LOVE the Mayo Clinic. In fact they handle my HRT. I did notice that cortisol levels were missing in your list of blood values. Did they test for that? Were you tested for Cushing's Syndrome?

B-

 

[bblazer]

I also think you might want to try and contact Dr. Todd Nippoldt at the Endocrinology dept at Mayo. This seems right up his alley.

B-

 

[zedhed]

Good post bblazer k to you.

 

[bblazer]

Good post bblazer k to you.

Remember I only play a Dr. on EF.

B-

 

[SUPO]

Thank you all. Sorry I've been gone. Here's what's new. First, a lymphedema specialist is compressing my legs to try and squeeze the fluid and proteins out of my legs. It's helping a little but I look like the Michelin Man and he is telling me that I have to wear compression garments for life or until I find out what is the reason for the fluid retention. After the legs he wants to do my upper body and I'm supposed to wear compression on my whole body. He says it's the only way until I find out what's causing this otherwise I'll fill up again and the stagnant fluid and proteins will destruct the cells.

The endocrinologists I've seen are deer in headlights. They say "I don't think you have an endocrine problem" despite the high FSH, LH, Estradoil and low bio and free testosterone. I wish I were making this up. The cortisol has been checked and it's always low normal but the cycle is consistent.

I just received my new labs today. The FSH, LH and Liver Enzymes are now "normal". The testosterone levels take longer so I don't have them. From my own research, I hear that high estradoil (or high normal - which is above 30 - mine being 52) and low normal free and bio recommends NOT giving testosterone, but that there could be a conversion issue so adding testosterone will produce more Estradoil. I do need an expert, but, I'm in the capital of senior citizens and endocrinologists here are diabetes and thyroid. And they don't seem to give a damn.

Another thing, I have blood in my stool. I saw a Gastro, and despite my family history and blood in the stool, he doesn't think I need a colonoscopy. So, I'm looking for another.

My primary said today that she'll give a ACTH stimulation test to see if the Hypothalamus-Adrenal cortisol response is normal, but she said she doesn't think that's causing my feminine symptoms, water retention, pigmentation issues. A dermatologist wants me off everything to see if my body regulates itself - including all vitamins - nothing but food. The T3 was helping my metabolism and body temperature, which is now sinking again. My reverse T3 and Free t3 is a 10-1 ration which is classic clinical case of Wilson's Syndrome. Though I've been off the T3 for 2 weeks, my levels are still showing as if I'm on T3 (dermatologist said it takes about a month to normalize). He doesn't recommend testosterone saying that once you give the body something artificial, the gland that produces it stops working.

My symptoms are still the same - pigmentation (guttate hypopigmentation), pain upon sitting, stretch marks, cellulite, water retention, subcutaneous fat from my calves to my wrists. My skin also looks "diseased" - kind of a dull gray oxygen deprived. The liver doctor - the one who didn't feel the colonoscopy was necessary, said when he saw me - "I don't know how to say this, but your body fat distribution is very disturbing". Which I actually appreciated the honesty. I'll try calling the doctor at the Mayo and see if that doctor will see me. I don't know if I should see an endocrine, or a hormonal doctor. My fear is that a hormone doctor may just do whatever he can do give me products for profit regardless of the endocrine relationships, you know???? I just want to be normal.

ONE INTERESTING THING HAPPENED, when I went for my CT scan (with contrast), they gave me a liquid to drink which was the contrast for the night before the CT and the day of. When I drank it, ALL MY PAIN went away. They said it was Bilarium Sulfate (???) and all it does is coat the stomach, intestines, etc......so, I wonder if the pain is related to a gastro problem? The gastro didn't seem to think it was significant. I tried drinking Mylanta to see if it would help - it didn't.

Personally, I'm scared and pissed. I'm a good looking guy that's metamorphising into a metabolic nightmare. I have no ejaculate, feminization, I'm retaining fluid like a grandmother - forget dating and having game - I'm like thinking about disease and scared at the lack of knowledge, help, direction and I have thought about cancer. The doctors see I'm depressed and think that's the problem. I'm depressed because of the problem.

 

[ScMc]

time to get on cycle brah

 

[artificialaspirations]

have you had an mri of the pituitary?

You have test and its converting it to estro. What jumps out at me is the high shbg. Your body is not using the test.

I understand what you are saying about the propecia. That shit is the devil and makes you feel like a woman.

Go here: PROPECIAHELP: Unresolved Finasteride Propecia Proscar side effects info & forum and see if anyone else has similar symptoms. That shit obliterates dht which is a dominant sex hormone in males. Maybe someone can point you in right direction. best of luck and prayers. keep us posted.

 

[needtogetaas]

Fucks sake I thought my wife made a alter!!!!!!!!!!!!!!!

 

[SUPO]

I started Propecia back in 1993. I went on and off by the months and years, usually when I saw some hairloss. I guess things just caught up. I read there is a drug called Arimex (or something similar) that quickly makes free testosterone go up and Estradoil go down. I don't know if I should stay baseline and let my body try to figure things out or to start regimines. Even with the physical symptoms, then the pain is a differnt issue. I truly cannot sit for more than 5 minutes. It feels like you compressing your skin, like there is a building on your shoulders pressing your ass into a burning stove. And it varies in intensity and sometimes the different parts of the legs are involved. When I stand, no problem. If someone pokes my ass - like the doctors asking me if it hurts - not a problem - normal buns as far as feel. Sit down and the nerves are on fire and the compression. It's mostly in my ass, hams and bottom of my feet.

Thank you for everyone replying and the well wishes and prayers. I really hope there's not a colon "c" issue because that will be difficult. I'm 43, want to get married, have kids, sport around - you know.

If anyone else can recommend Docs or other things to test for let me know. Regarding some of your questions - the ejaculate - to test is like once every 5 days. I mean normally with a 5 day lay off, not get graphic but it's quite a bit. Now, it's dry with possibly a dribble at best. I have no erectile dysfunction...I see/think sex - it's saluting.

My phyiscal therapist who is forcing the fluid out said not to workout because my lymph system is under distress and building muscle creating lactic acid and waste products will make the lymph system more congested and sluggish. The derm says my immune system is messed up so stay out of chlorine pool and not swim (which is what I was doing twice daily) so I don't get more pigmentation issues so I'm sitting here getting all soft and useless. I have to get creative.

Fortunately, I just saw a compression body suit put out by underarmour. Under Armour body suit helps with aches - The China Outdoor sports industry web portal Not sure if it's exterior or underneath clothing but if I can get that as a workout replacement rather than typical medical compression garments-at least I can look like I"m sporting. The one positive about my situation - is I'm a thin guy by nature so the problem, though it can be noticed, would be bad if I had an overweight problem.

 

[artificialaspirations]

I am not a doctor but 854 total test is pretty high for a 43 yr old. Your LH and FSH are through the roof. Your free and bioavailable test is low which is why your body keeps producing so much free Test, which in turn, is aromatizing into estrogen and causing you the problems. Ask the docs about dht and shbg levels. If you can find the cause of these levels (which I believe to be abnormal) you may find a solution. Also, ask about a diseased pituitary which may involve an MRI.

 

[Wulfgar]

your PT is a tool. u need to train, HARD! This is a classic example of why i hate fuckin doctors. Most of them dont know their ass from a hole in the ground and/or just want to cover thier own asses so they dont get sued. This is why finding a good doc is such a bitch.
Honestly bor, I dont think you ave any crazy wild unique disease or fibro or anything. You are fighting against some shitty genetic dice that rolled against you and gave u some issues from your moms side( join the club, I got varicose veins on my legs just like my grandma did and im only 28).

IMO you should get on a good anti-E such as Adex pronto, and do what you can to reduce ur SHBG levels(lotsa diff ways to do that- do some reasearch). You seem to be extremely estrogen sensitive, which explains the FPFD(female patter fat deposits) as well as the edema. Also strengthen your cardiovascualr system with a good, med-high intensity bout with a bike or treadmill or whatever. This will help with your lymph problems as well as circulation and reducing the edema in your legs.
And for fucks sake bro, work out! Stop letting these docs turn you into a pile of whiny rubbery shit by scaring you with all their goddamn pills, drugs, anal probes and other bullshit.

I know its tough love bud. But till you take your own health and life into your own hands notin is gonna change.
I had a good buddy who was the most hardcore goddamn marine force recon soldier you would ever meet. One day he got health insurance and had a little pain in his side. 3 years later and about 500 Dr.s visits and ass invasions later the pain was still there, he left the military, gained like 100lbs of sloppy fat and turned into a blubber hypochandriac slob. DONT be that guy!!!


Good luck!