POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: mitch777 on July 24, 2011, 05:28:02 pm
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Hi guys!
Me: Poz for about 29 years now. Age 52. All counts are good and have been for a long time.
Energy level has been going down hill big time for the last 5-7 years. (MUCH more than others in my age bracket)
Recently found out that my testosterone level needs a boost. I have been on the lowest dose for about 2 months now and not really noticing much of a difference. Was kind of hopeing for a bit of energy boost more than anything else.
No bad side effects so far. No energy increase either. (boo) Maybe more time is needed or a higher dose.
Doc will be re-testing my levels next month.
Just wondered if anyone could comment please.
I have read (thanks to this site) many articles on ageing with HIV and get a bit frustrated with my hiv doc that he doesn't seem to acknowledge the possibility that we long termers have issues that are beyond the norm in BOTH physical and mental health issues stemming from the virus or the meds.
(I have been on Atripla almost since it was introduced)
Sorry to rant on so much but I am beginning to trust "us patients" more than our current health care system these days.
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Could be.......... manopause......maybe? :'(
Bertram
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Hi Mitch,
I have been positive since 1985. I developed AIDS in 2007. It has been a long road back. I find many challenges are multifocal. Physical, psychological, environmental, medical, economical, social - and on. I have been on Testosterone therapy for over three years now and recently upped my dosage to 10 grams per day (two tubes). I had tried to increase the dose before but had to stop (the higher dose) because I became jittery and anxious. However this most recent try has yielded excellent results and has had a tremendous effect on the quality of my life. My energy is normal, my mood is positive and all is well.
At the risk of assuming and what has been my experience here on these forums; you may get a wide ranging group of opinions warning of the dangers of T therapy or it increases your risk of colon cancer but each person is different, and as in my case of the first failed attempt at a dosage increase, we can react differently to the same therapy at different times.
I do have labs done every three to four months and get screened regularly (colonoscopy and anoscopy). You may want to check your thyroid function as well. Good luck.
boomer
Oh and I can blow a hole through a three foot thick concrete wall with my dick. ;D
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Hey Boomer,
Thanks for the info, encouragement and perspective!
Wow! Don't mean to be nosey, but what caused the AIDS diagonsis in 2007??
Sounds like all is going pretty well at the moment in any case.
Heard about the increase risk of prostate cancer with T but never heard about the colon cancer risk.
Thyroid has been checked twice recently and seems to be ok.
Really...
A 3 foot wall?
Maybe 10 grams a day is what I need. ha.
Mitch
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Hey Mitch,
Oops, my bad , my bust. I meant prostate.
I tested positive in 1985 after the birth of my first son. As you know and at that time, there wasn't much to do about it except for six month lab work and whatever got you through. In the meantime I was (and still am married), had another son in 1987, ran a construction business, spent lots of time in Central Park playgrounds, was on lots of school committees, most importantly had a wife who did not dwell and in large part denied my HIV and of course I was in a heterosexual universe (even on the upper west side of NYC!) where in that subculture , HIV / AIDS and bisexuality did not exist. I don't recall when viral load testing became available but for many years my labs were normal and there was even talk of long term nonprogressor . So in 2000 when I moved to the country, I really hiked up the hetero ante and I became complacent and quickly slipped into denial. In 2007 after completing a large construction project I became progressively ill over a four month period, I thought it was environmental and would pass. I was hospitalized with PCP, thrush, AIDS wasting and fungul infections all over my head, arms and torso. I had 54 "T" cells and viral load off the chart.
The rest is history.
peace,
boomer
edited to add;
Yes a three foot wall.
Concrete.
Big.
Hard.
Throbbing.
Swollen.
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Boomer, I hope & pray you're getting stronger everyday. Hugs from gay Provincetown
Mitch: I've been on T gel (Androgel) for years. It should only take 10 days to 2 weeks for a change in dosage to work if it's going to change your mood or energy level. I don't use it everyday, but when I do start using it everyday, I notice the increased energy in 10 days.
I'm 58 years old and in a LTR so I'm not worried about the size of my nuts. I hope this information is helpful. As the others mentioned, continue to get checked for colon cancer, etc. Hugs, Deibster
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Thanks Deibster,
So far so good. I summered in P Town in 1981. Worked as a cocktail waiter at the Crown and Anchor.
Those were the days, and nights. ;)
Hugs back at ya,
boomer
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Thanks Deibster,
I should find out next week if my current dose is enough. My energy level is up a bit but not as much as I had hoped after 2 months. We'll see what happens next.
Boomer,
Yikes! Quite the HIV ride!
Stay well now and take care.
Mitch
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Mitch,
You did not mention what product you are using. I understand there are two new products available. One is a patch that comes in higher doses than Testim, the other I don't recall. My doc mentioned this the other day.
Deib,
Have your nuts really shrunk? I don't think mine have. I hope. :o
love and best wishes to you all
boomer
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hi boomer,
androgel. it's a gel in a small packet. insurance company wouldn't cover the patch. i'm guessing the gel much be cheaper.
no shrinkage yet for me.
Whew!
mitch
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Hi all of you;
If you have persistent energy problems, I strongly recommend that you see a psychiatrist or psych nurse. I have been on Prescription Speed - Concerta, for years and it makes a world of difference. When I was on Medicare Part D, it was covered, also by ADAP. The doc will want you to be in therapy, but find out if group therapy is available. It's much cheaper. Good luck.
In brotherhood from PTown Deiby
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Hi all of you;
If you have persistent energy problems, I strongly recommend that you see a psychiatrist or psych nurse. I have been on Prescription Speed - Concerta, for years and it makes a world of difference. When I was on Medicare Part D, it was covered, also by ADAP. The doc will want you to be in therapy, but find out if group therapy is available. It's much cheaper. Good luck.
In brotherhood from PTown Deiby
The energy problem and muscle loss is a side effect of HIV and testosterone will help. Also check on a drug called "nuvigil" that acts like an energy booster and a antidepressant. It is like caffeine without the side effects. I take the testosterone shot, the gel and boosters to combat the fatigue and it is working well. I too am 52 years old and was suffering from fatigue muscle loss, low sexual drive and depression, and I had found that testosterone helped immensely.
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The energy problem and muscle loss is a side effect of HIV and testosterone will help. Also check on a drug called "nuvigil" that acts like an energy booster and a antidepressant. It is like caffeine without the side effects. I take the testosterone shot, the gel and boosters to combat the fatigue and it is working well. I too am 52 years old and was suffering from fatigue muscle loss, low sexual drive and depression, and I had found that testosterone helped immensely.
Also, changing your HIV regiment could help for some side effects of certain medications is depression. I have changed from Atripla for it made me tired all day long. Now I am on different meds and I have more energy.
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Thanks Red dragon,
Been on Atripla pretty much since it was introduced. Kind of afraid of changing meds as my viral load and t cells are good.
having said that, i am sooo tired sooo often. open to the idea of new meds.
what have you found helpful?
seeing id dr. tomarrow.
sorry, getting brain dead here with dinner on my lap.
mitch
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Hi, yes I'm on Androgel; haven't noticed any nut shrinkage but others, who are on a high dosage, have mentioned it.
Kaletra causes a lot of gut side effects; I'm glad that I'm off of it.
I'm on Prezista, Norvir tablets and Epzicom. You have to have a test (blood test I believe) to be put on Epzicom; not everyone can digest it. I started on it many years ago before they started doing the test to put you on Epzicom.
If you're put on Norvir & you do any travelling, make sure the doc specifies the tablets. The caplets have to be refrigerated. Best of luck, Hugs, Deibster
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Try and add to your list of Doctors an Endocrinologist. Doctors do concentrate so much with us and our "male" hormone testosterone. truth to the matter is that we are made out of a whole array of hormones which are much more than just testosterone.
No other Doctor will be better to determine what is causing your fatigue than an Endo. who knows if you are also starting to have low blood sugar levels or high blood sugar levels which are also ignored or can show up "normal" in a regular lab CBC when you had your regular Dr. Visit but can go under or over the roof immediately thereafter.
The guidelines and charts that have been placed (as standards) on us and our status are often misread and sadly misdiagnosed. I have been HIV pos for a little over two years now. my average T's always near the 200 "danger" zone, but yet continued to have flares (Ulcerative Colitis) which are blamed to an overactive and highly effective immune system. Lymphatic cancer (hodgkin, mind you not HIV typical) chemo, colon cancer (hog negative, ulcerative colitis related) again chemo, radiation, t cells always 200 VL <20 never up, nor down...my energy levels up the roof, testosterone levels normal, but yet my dick did not get up even if I tried. The solution to it all was more related to the combination of all the hormones and not just testosterone. Testosterone depletion is one of those trademarks and little r's that are assigned to us when we are in a antiviral treatment.
HIV management is still in it's infancy and we are just tomorrow's numbers and charts, who is to say that prior to my HIV diagnosis I always had my T's in the 200? We "assume" that I did not, but one will never know. I am glad that there are ways to measure how we are doing base on yesterday's numbers, don't get me wrong. I don't think that I would be alive if it wasn't for my daily Atripla, but assuming that if you are down that the "natural" thing for someone in Haart is to have testosterone depletion is also a highly assumable thing to say.
Seek further, go beyond the standard testosterone which, when taken in excess, can mutate not just our balls but also the look of our faces, making us all look like first cousins to Hulk. We are made out of a whole lot more than that, find out exactly what you are missing, or maybe even what is it that you are producing too much. I did, I was pretty surprised to find out what made mine go up and break the concrete wall again, and it was NOT testosterone....
My best to you. hope you find your lost energy soon.
Danny
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I hate to tell you guys this, but it is possible that one may NEVER recapture his sexual energy. This is due to the ways neuropathy affects male organs.
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Thanks for all of your comments and suggestion everyone!
Just a clarification on my part here...
The energy level that I am hopeing to get back is "general everyday" energy and not related to a better sex drive. I am realistic that being poz for nearly 30 years and being 52 years old would in itself be a challenge in feeling 25 again.
Went to my ID doc yesterday and after being on Androgel for over 2 months (5 gms.) , we were both surprised to find my testosterone level DROPPED by abou 30%!
I would think that some flucuation is normal but???
Doc was scratching his head.
Suggests going to 10 gms. and retest after 3 months.
Also talked to him about how he felt about changeing from Atripla to something else and he didn't seem inclined to really want to discuss it seriously at this time.
I DO like and trust him.
Hmmmmmmm.
Mitch