Need Advice about Testosterone

[tednlou2]

I'm needing some info about testosterone.  I wasn't going to ask, because I don't want to become a serial poster..lol.  I've limited things I want to ask to allow others to ask questions.  However, I don't know much about testosterone treatment and it could help others. 

Some of you may remember I was experiencing a lot of fatigue after the holidays.  It just got really worse after that.  I've actually been experiencing a lot of fatigue for a long time.  I was reading about how testosterone is often low in HIVers and can cause extreme fatigue and even depression.  I got my lab results. 

Testosterone:  288 ng/dl  Normal:  250-1100

Free Testosterone:  55.6 pg/ml  Normal:  35-155

Free Testosterone %:  1.93  Normal:  1.50-2.20

The doc said the total testosterone was out of whack--low.  For those of you who've had this problem, were your levels much lower when you started testosterone treatment?  Is treatment safe like taking many other meds, or are there things to weigh?  I suppose if treatment is very safe, I would give it a try without hesitating.  This low number could be causing the fatigue--even depression. 

Okay, I've asked you guys for a lot of info.  I know what low testosterone can cause.  I just don't know much about treatment.  I'm actually considered in the normal range, but just on the very low end. 

Thanks Everyone!

[SouthSam7]

What are considered normal levels of testosterone in hiv negative individuals can be considered low in hiv positive individuals.  I trust others will weigh in on this.

Also, I take testosterone cypionate once monthly injection 1.5 grams.  I really like the effect on my fatigue.  I think I would prefer patches or gel, though, so there are no highs and lows.  A few days after the shot my libido is insane.  By the end of the month I have no libido and I'm tired again.

I highly recommend testosterone supplements if your doctor thinks you need it.  There can be long-term side effects.  Have your prostate checked regularly.  For me, the benefit outweighs the risks.

Sam

[veritas]

tednlou2,

Your testosterone levels are low normal according to your lab. They will probably fall further if you do nothing.  If your dr thinks you should start replacemrnt therapy, go for it. You'll be glad you did!

Here's a link on dealing with low testosterone:

http://aids.about.com/cs/druginformation/a/testo.htm

I've been on androgel for 4 years.

v

[sdguyloveslife]

Low testosterone is easily treated.  I started treatment when I found out my level of testosterone was about 200 - I too was tired all the time, even after a full nights sleep and an afternoon nap! 

There are 2 gels that are pretty commonly used.  (Androgel and Testim)  They both do the same thing and are very similar.  You just apply one packet or tube each morning after you shower.  The testosterone is absorbed through your skin, slowly bringing you up to normal levels. 

Alternatively, you can inject it - provided that needles don't bother you.  I started with the gel, but I switched and actually prefer the injection because it's only once every two weeks and one less thing I have to remember with my groggy mind in the morning.  I just have it set on my calendar as an alarm every two weeks to remind me.  I inject testosterone cypionate once every 2 weeks into my gluteal muscle. 

Like everything else, there are some side effects - but at the levels of "hormone replacement therapy" these effects should be minimal.  The guys that have to really worry about side effects are typically abusing steroids - like bodybuilders who are injecting every other day to build muscle. 

Ask away if you have more questions...I think the "serial posters" are mostly found in the AII forum - when the poster asks essentially the same question 100 times and gets the same answer 100 times with several threats of time outs, but they still come back and ask again and again and again.   
________

guyinsouthala - I'm curious about your injection schedule.  The half-life of cypionate is only about 8 days - so, it's no wonder at the end of the month you are tired again.  There is a product called Sustanon (Sostenon in Spanish) that I've purchased in Tijuana (I don't think you can get it in the US) which I've heard is better for a monthly injection as it contains 4 esters - one of which has a 16 day half life.  Check it out with your doc, but I think if you injected every 2 weeks you might not experience that high-low effect so dramatically.  Even if you didn't want to increase your dosage, you could just inject 1/2 the monthly amount every two weeks. 

[WillyWump]

I've been on Androgel every other day for just over 3 months. Originally I tested in the 30's , extremely low. After 3months on Androgel I tested 76ish, still very low. I now apply it daily and will do so for another 3 months. If I am still low after that time I will have to have the injections.

Even though I am still in the low range, the difference in my mood, libido and energy after 3 months with Adrogel is substantial. I even get a noticeable high of energy immediately after applying it although this could be due to a placebo affect. My daily nap marathons are gone and my sexual appetite is returning with a vengeance. I'm excited because potentially I could feel even better once my levels are normal.

I like the gel, its easy to apply and dries quickly and leaves no smell. It's the only thing in my med regimen that I enjoy taking. I'm not looking forward to the injections if it comes to that, but I guess everything comes with a price.

The only side effects I can report is an occasional slightly jittery feeling.

-Will

[Inchlingblue]

When I initially went on Androgel I was using it every day and after about one month my T levels shot up very high (higher than the high end of the range). This of course is not good either.

Another concern is that extended use of T replacement means that the testes are getting the signal not to produce it so when going off of it I've read that it should be weaning off, not just cold turkey.

It was recommended to me to apply it at night before bed because throughout the night is when T levels naturally go up so that in the morning when one wakes up they are at the highest levels. Applying it at night is in keeping with this natural cycle.

I still use it but only about once a week so as not to overdo it.

[ad2san]

Hi Guys,

I am hijacking this thread 

obviously you all agree on the fact that T brings something ...
I am wondering if usage of T in Gel or injection may put your body back to produce T back by itself ?

[SouthSam7]

guyinsouthala - I'm curious about your injection schedule.  The half-life of cypionate is only about 8 days - so, it's no wonder at the end of the month you are tired again.  There is a product called Sustanon (Sostenon in Spanish) that I've purchased in Tijuana (I don't think you can get it in the US) which I've heard is better for a monthly injection as it contains 4 esters - one of which has a 16 day half life.  Check it out with your doc, but I think if you injected every 2 weeks you might not experience that high-low effect so dramatically.  Even if you didn't want to increase your dosage, you could just inject 1/2 the monthly amount every two weeks. 

I would love to inject every two weeks but believe it or not my (former) doctor would not permit me to inject myself since the drug is controlled.  I don't live there anymore so I hope my new doctor will change my regimen.

[Miss Philicia]

I am wondering if usage of T in Gel or injection may put your body back to produce T back by itself ?

Yes, I injected and/or used Androgel for a period of four years but then stopped and my testosterone levels have been in the normal range now on their own for five years.  I'm 45 and have been HIV+ for about 22 years, fyi.

[boomer]

Hi,

I have been using Testim for over two years now and am curious as to how Miss P was prompted to stop?

Inquiring minds want to know.

Boomer

[Miss Philicia]

I think it was at the time I was first encountering high blood pressure and maybe my doctor thought it prudent to see if I could go off of testosterone therapy and see if my levels could maintain themselves.  He could also have been concerned about being on it as long as I was and the risk of later prostrate issues.

To be honest once they switched me off of the injections and to the gel I wasn't great with applying the gel regularly, so though I didn't tell my doctor that I knew that my testosterone levels were reading in normal levels on their own anyway for at least that last year.

[Inchlingblue]

To be honest once they switched me off of the injections and to the gel I wasn't great with applying the gel regularly, so though I didn't tell my doctor that I knew that my testosterone levels were reading in normal levels on their own anyway for at least that last year.

It sounds like, by not applying the gel regularly, you weaned yourself off without intending to—this is the way it's supposed to be done when stopping which might be why your levels went back to normal.

[pos2007]

HIV & HIV meds can cause low testosterone as well as aging.  I test low  well below 250 but cannot have testosterone therapy due to prostate cancer according to my doctor, although 2 recent studies suggest it is beneficial  if you have had 2 neg. psa's post  prostate cancer surgery. Doctor is probably right, because at this point having been dealing with the effects of low testosterone, I would probably slather myself head to foot in the stuff if I could get my  hands on  it.   Having previously checked on Testim, Androgel and other therapies, I was shocked at the $200.00 per month  cost and that neither my  insurance nor medicaid would cover it. Excessive androgen therapy can cause hearing loss.  Besides the blood test, there is this guide:
Choose the responses below that best describe how you have been feeling.

1. Do you have a decrease in libido (sex drive)?
   

Yes
   

No

2. Do you have a lack of energy?
   

Yes
   

No

3. Do you have a decrease in strength and/or endurance?
   

Yes
   

No

4. Have you lost height?
   

Yes
   

No

5. Have you noticed a decreased “enjoyment of life?”
   

Yes
   

No

6. Are you sad and/or grumpy?
   

Yes
   

No

7. Are your erections less strong?
   

Yes
   

No

8. Have you noticed a recent deterioration in your ability to play sports?
   

Yes
   

No

9. Are you falling asleep after dinner?
   

Yes
   

No

10. Has there been a recent deterioration in your work performance?
   

Yes
   

No
Source: Saint Louis University Androgen Deficiency in Aging Men (ADAM) Questionnaire. John Morley, M.D., Saint Louis University School of Medicine,

[Miss Philicia]

Oh yeah, I'm sure that's what happened.  But my larger point was that it's hard to tell how your numbers will do unless you're willing to try it.  Personally I find it risky to stay on this stuff too long and try and err on the "less is more" approach.

But then I only went on it in the first place to reverse wasting issues, not because of fatigue or libido issues.

Regardless, my doctor wasn't aware that I'd weened myself off and he was just recommending I halt it for a while and see how my numbers were.  There was no discussion of "weening" unless I'm recalling the discussion incorrectly, which might be the case.

[boomer]

Good information and personal accounts. This site is very helpful in preparing any questions or issues with the doctor. I am concerned about the prostate issues but the results of this therapy in my case are remarkable. Thanks to everyone.

Boomer

[tednlou2]

Thanks for all the helpful info.  I spoke to the doc again today.  She said since my numbers were in the normal range at 288 (Normal on test is 250-1100), they normally wouldn't prescribe testosterone treatment.  She said even though I was on the low end, I admittedly didn't have erection problems.  She really seemed to be focused on erectile problems and not on all the other problems.

Everything I read online says anything under 300 is considered low.  I know different labs have different values for normal--CD4..well, everything.  However, I keep coming across this 300 number online.  And, I've read you don't have to have erection problems to have testosterone problems.  I suppose if ya had a really low level, you would probably have erection problems. 

Pos2007 questions:  I can answer yes to just about every one of those.  I haven't checked my height lately, so I'm not sure about that.

My question:  Should I ignore the 300 number I keep finding online and go with what the lab says is their normal range?  Would I have to have erection problems to have testosterone problems?  I have the decreased energy, loss of libido, depression, etc.  When I do get horny, I can get an erection.  This all could just be due to depression and untreated HIV.  However, being on the low end makes me wonder if testosterone could be causing the depression, fatigue, etc. 

By the way, some of you and the doc said testosterone therapy may just make the problem worse--causing my boys to stop making it and having to rely on therapy once started.  It sounds like many of you have done very well on it.  If I'm not a candidate for therapy, then that's great.  I can't even talk to my regular HIV doc about this, because he didn't even know low testosterone was an issue with HIVers.  I'm still trying to switch to another doc, but that is a topic for another time. 

[Miss Philicia]

I thought you said ages ago that your anxiety and depression pre-date your HIV.

[tednlou2]

Miss P,

I did have mild depression in my teens.  It got worse around 2001, the same time I'm sure I became HIV poz.  I've read HIV can cause depression by itself and not just from knowing you have it.  Even then, it was just mild depression.  The worse depression and anxiety came probably one year before diagnosis.  I noticed I'd get bad panic attacks for seemingly no reason.  And, it got worse after diagnosis.  I'm not locked up in a room.  I still have fun times...don't get me wrong. 

Anyway, I've read low testosterone can cause depression or make it worse in people who already have it.  The fatigue, loss of libido, etc could very well be just depression.  I'm just trying to learn about testosterone to see if it is playing a role.

[Inchlingblue]

Thanks for all the helpful info.  I spoke to the doc again today.  She said since my numbers were in the normal range at 288 (Normal on test is 250-1100), they normally wouldn't prescribe testosterone treatment.  She said even though I was on the low end, I admittedly didn't have erection problems.  She really seemed to be focused on erectile problems and not on all the other problems.
 

Being a male, I've always preferred male doctors. I know there are some great women doctors out there but what you're describing sounds like a classic example of her not "getting it" due to the gender difference.

Surely she must be aware that there are other quality of life issues that arise (no pun intended) from having low T levels?

Don't get me wrong, I'm not advocating having to take T replacement forever. In my own case I've really tapered down and am only using one gel pack a week and I plan to eventually stop and see where the numbers are. But I do think that it's not a bad idea to treat hypogonadism with T replacement temporarily and then go off it slowly.

I have a friend who is a LTS and had the same experience as Miss P, he was on T replacement for a while then got off it and now his numbers are fine.

[boomer]

My understanding is that HIV damages the testes and therefore the low T count.  So by what process or mechanism do the testes start producing testosterone again? It doesn't make sense to me unless by reducing the viral load that in itself makes T production possible again.

Boomer

[Miss Philicia]

My understanding is that HIV damages the testes and therefore the low T count.  So by what process or mechanism do the testes start producing testosterone again? It doesn't make sense to me unless by reducing the viral load that in itself makes T production possible again.

Boomer

In most people successful HAART treatment can make it possible to wean off testosterone therapy, though if you have perhaps what's considered advanced HIV this might not be possible.

You may wish to read through this.

However, it's my experience that once guys are on this treatment they are loathe to halt it, because they become libido junkies or what have you, and most doctors will indulge them (though I think there's a wide latitude in this depending on geographic location and perhaps ADAP funding resources, keeping in mind how expensive this stuff is).

[boomer]

Thanks Miss P. Lots of good info that I'll have to get to tonight. But a brief scan of Dr. Gallant's answers  indicate while there are tests and related levels for testosterone there is still much that is not understood in the process ( low T and HIV ) and it's cause(s).

So once again it is that a person needs to know their body, mental and emotional state and have a good doc who is willing to spend the time discussing labs and answering questions.

Also, does Testim and or Androgel come in different dosages? My Testim is 1% 50mg and I use it daily. No crazy libido or anything else for that matter, just feel "normal".

Boomer

[Miss Philicia]

Also, does Testim and or Androgel come in different dosages? My Testim is 1% 50mg and I use it daily. No crazy libido or anything else for that matter, just feel "normal".

Boomer

I never did Testim but Androgel has a chart on the back for different doses -- meaning instead of 4 pumps of gel for 5 g you can do 6 pumps for 7.5 g, etc. -- just depends on what your doctor writes on the scrip.

[RapidRod]

Thanks Miss P. Lots of good info that I'll have to get to tonight. But a brief scan of Dr. Gallant's answers  indicate while there are tests and related levels for testosterone there is still much that is not understood in the process ( low T and HIV ) and it's cause(s).

So once again it is that a person needs to know their body, mental and emotional state and have a good doc who is willing to spend the time discussing labs and answering questions.

Also, does Testim and or Androgel come in different dosages? My Testim is 1% 50mg and I use it daily. No crazy libido or anything else for that matter, just feel "normal".

Boomer

Boomer it only comes in 50 mg but some people are prescribed to take 100 mg which is just using two tubes. I’m on the same dosage as you and have been for over 3 years. .

[Inchlingblue]

More from Dr. Gallant on testosterone:

Depression is a common cause of fatigue and sexual dysfunction or loss of libido. Having a low testosterone level can cause both of those problems, but taking testosterone won't cure depression. It's important to deal with that problem separately.

LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/testosterone.html?contentInstanceId=515400&siteId=7151

[boomer]

Yes Inch, it seems one has to be very observant and in tune with the whole self and methodical in addressing issues. Even at best I find that most problems are multifocal such as HIV damage, medication side effects, situational depression etc.

Rod, do you have any plans to wean off?

I also am concerned with prostate problems but at 52 I have yet to have a colonoscopy so I guess not very concerned!

Is there any connection with testosterone therapy and dysplasia?

Boomer

[RapidRod]

Yes Inch, it seems one has to be very observant and in tune with the whole self and methodical in addressing issues. Even at best I find that most problems are multifocal such as HIV damage, medication side effects, situational depression etc.

Rod, do you have any plans to wean off?

I also am concerned with prostate problems but at 52 I have yet to have a colonoscopy so I guess not very concerned!

Is there any connection with testosterone therapy and dysplasia?

Boomer

No, I won't be weaning off anytime soon. As for prostrate problems just make sure your doctor keeps up the exams routinely.

[Miss Philicia]

Is there any connection with testosterone therapy and dysplasia?

Boomer

Anal dysplasia has nothing to do with the prostate, so I don't see why it would be connected to testosterone therapy.  Dysplasia is HPV related.

[GSOgymrat]

4. Have you lost height?
   

WTF?! Forget all the other symptoms, if I started shrinking at age 44 I'd freak out.

[tednlou2]

Inchlingblue,

That was my question to Dr. Gallant.  I asked him a follow-up about whether my free testosterone would be considered at the low end and would warrant therapy.  Since he mentioned a morning free testosterone, I explained I didn't do the bloodwork in the morning.  I did it in the afternoon.  I was reading a better result is done in the morning.  I'm awaiting his response.