Low T - my medical odyssey

[Mr. Pickles]

I've recently undergone a medical odyssey that started with IBS symptoms and a lifelong inability to lose weight. Went to my primary dr. who ran a battery of blood tests. The tests revealed elevated liver enzymes. The result was more tests and visits to several specialists.

Ultrasound and CAT scans revealed I have gall bladder polyps and renal cysts, both of which are being monitored. No worries here I was told.

The hematologist discovered that I have Beta Thalassemia trait, which is basically the characteristics of Mediterranean anemia. My mother had this, so I wasn't surprised. My blood cells (the red ones I think) are smaller than average - avg. mean corpuscular volume is between .8 and 1.0. My MCV is .68. I don't have the disease; just the trait, which I don't quite understand. I've always felt lethargic and have low energy, so I assume the BT trait plays a factor in this. There is no treatment, however.

The GI specialist found that I have GURD (spelling?) which is severe acid reflux and my symptoms are being treated with Omeprazole. It's working wonders. He also found that I have a few positive antibody indicators for Celiac disease, even though the endoscopy didn't confirm this. I find some relief from my IBS symptoms when I eat Gluten free, but I regularly lapse into gluten binges... The GI is concerned about the elevated liver enzymes (I don't drink much at all) and he said I have a fatty, swollen liver (i.e non-viral hepatitis), which could be remedied by losing weight. I have an ultrasound guided liver biopsy scheduled for the end of June just to err on the side of caution.

The endicrinologist found that I have low testosterone. My levels are around 300 which is the bottom of the range (300-800 being normal) so he treated me with a 1% Testim gel. One of the issues I was hoping to get to the bottom of was my inability to lose weight. Taking the testim made me feel marginally more energetic and I was able to get leaner with diet and exercise, even if my weight didn't decrease. I asked him why I couldn't lose weight and he usually blew off this question and asked me about my sex drive and erections (which I am not concerned about). He was far away, and getting the prescription was difficult and expensive, so I stopped taking it. Low and behold, I now feel like crap and my weight shot up 20 - 30 lbs. since I stopped applying it.

Couple this with a stressful job, a shaky marriage and I just want to give up some times... Yes, I am seeing a therapist, but she merely dispenses medication.

Anyway, two things I'd like your help with:
1) I'd like to know if anyone out there is dealing with Low Testosterone, what treatments are you on, and what's new in hormone therapy. Also, what are the risks? 2) can anyone connect the dots holistically for me? It seems I have all these seemingly random and minor health concerns

[TheSuzie]

Has anyone checked your Aromatase levels to make sure you are not converting too much of your T over to estrogen? If you have high Aromatase, you will not be able to make best use of your natural T and the effects of additional therapeutic T may be diminished. This could be a contributor to weight issues.

S

[TheSuzie]

As far as the multitude of symptoms, it may be worth screening for chronic activation of innate immunity. This can underlie IBS, Gerd and Gluten intolerance, at least it did in my case where the labs showing the innate immune abnormalities were unequivocal.

S

[Mr. Pickles]

thanks, I will check into that. I found another endocrinologist and I'll have all my lab results sent over.

[Mr. Pickles]

Bump for medical assistance from...bassists?

[Phalex]

Originally Posted by Mr. Pickles

Bump for medical assistance from...bassists?

If you can't fix it with Crazy Glue or Duct Tape, I'm out.


I'm pullin for you though!

[Mr. Pickles]

Originally Posted by Phalex

If you can't fix it with Crazy Glue or Duct Tape, I'm out.


I'm pullin for you though!

Ha ha, thanx. If you can't duct it, f@ck it!

[Popbumper]

The BT definitely plays a role in your lethargy. Without sufficient red blood cell size, you have low hemoglobin - which carries oxygen - and your body would tend to be more oxygen starved.

Omeprazole - good stuff, works well.

Interested in your liver enzyme levels - these are usually indicators of hepatic damage of some sort, but can also be elevated when ceratin types of drugs are consumed (alcohol is the first "target" of physicians in this respect).

Curious to your age - low T is usually indicated at ages after 40 years. Testosterone (as most hormones) play an important role in regulatory functions, so I am not surprised that it would have given you some increased energy. Not surprised however that the Endo is interested in your sex drive only, because that's directly influenced by the testosterone level (they could care less about the other stuff).

Can't really connect the dots for you - I'm no physician (but I play one on TV ). There is not necessarily any way the dots could be connected regardless; it is entirely possible for the body to exhibit multiple system issues that are unrelated (use the automobile analogy - the brakes might be worn out but it won't affect how the car idles).

Best wishes.

Chris

[Mr. Pickles]

I'm 40, FWIW.

The liver enzymes are not the ones related to excessive alcohol. I drink rarely; maybe 2 glasses of wine at band practice (don't drink beer due to the wheat allergy).

Thanks for reading and commenting.

[Mr. Pickles]

Just doing some cursory wiki research and I'm wondering if there could be some connection between my liver functions and the Beta Thalassemia. Some of the treatments for severe BT involve Chelation therapy which removes heavy metals from the blood. Isn't this the liver's job?

[Mr. Pickles]

See below:
β-thalassemia intermedia. Clinical features are pallor, jaundice, cholelithiasis, liver and spleen enlargement, moderate to severe skeletal changes, leg ulcers, extramedullary masses of hyperplastic erythroid marrow, a tendency to develop osteopenia and osteoporosis, and thrombotic complications resulting from iron accumulation and hypercoagulable state resulting from the lipid membrane composition of the abnormal red blood cells [Eldor & Rachmilewitz 2002].

from: Beta-Thalassemia - GeneReviews - NCBI Bookshelf

What type of specialist would be able to look into these multiple symptoms for me? My GP, GI, and endocrinologist aren't seeing the forest for the trees.

[b_carville]

I have low testosterone.
My doctor retired last year. I'm being assigned a new one at the medical practice. I was prescribed Androgel. My insurance changed & this stuff went from $40 a month to $200 on my end.My financial situation isn't the best right now so that's a problem. Also I can't get a refill until I see the new doctor.
I have a weight problem as well. When I'm on Androgel my energy & weight loss greatly improved. Haven't had it for about a month now & I'm starting to feel low again. These medications are frightfully expensive.
Hope it all works out for you.

[TheSuzie]

The other question that comes to mind is what are you doing for work? What is your work environment like? Are there any chemical exposures maybe solvents or something else in your workplace? Does the building have any leaks, obvious microbial growth anywhere or funky smelling HVAC? Same thing for your home.

The liver stuff is a concern. I know people who have had to go through a dozen doctors or more before they figured out their personal medical mystery. I had to do exactly that and gave up for a number of years while my health continued to decline to the point where I had no choice.

Hope you are able to get answers soon.

S

[Mr. Pickles]

I'm a middle school teacher, so it's just stress, not exposure of any kind.

Originally Posted by TheSuzie

The other question that comes to mind is what are you doing for work? What is your work environment like? Are there any chemical exposures maybe solvents or something else in your workplace? Does the building have any leaks, obvious microbial growth anywhere or funky smelling HVAC? Same thing for your home.

The liver stuff is a concern. I know people who have had to go through a dozen doctors or more before they figured out their personal medical mystery. I had to do exactly that and gave up for a number of years while my health continued to decline to the point where I had no choice.

Hope you are able to get answers soon.

S

[Stumbo]

I sent you an email. Check your spam folder if you haven't received it.

[Mr. Pickles]

Originally Posted by Stumbo

I sent you an email. Check your spam folder if you haven't received it.

Many thanks for the message. My wife just had her appendix out and I'm beat so I'll read it tomorrow.

[TheSuzie]

Originally Posted by Mr. Pickles

I'm a middle school teacher, so it's just stress, not exposure of any kind.

Don't know if it is exposure but the sort of problems you are describing are not stress. IMO doctors who won't admit that they don't know what is going on or are too lazy or busy to deal with "difficult cases" will tell you it is stress.

Some school buildings and office buildings do make some people sick. I know of a bunch of teachers who have been sickened and eventually disabled by sick school buildings. I have met some in person. Sometimes the problems with the school are obvious sometimes they are not but some people still get sick.

There are tests available from the major labs and reimbursable through insurance that can detect or rule out this type of illness.

S