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#193121 - 12/29/10 09:21 AM Testosterone replacement
seekonk Offline
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Registered: 12/06/10
Posts: 1254
For the men here: Does anybody here have experience with testosterone replacement? Chronic use of opioids for pain can drive testosterone into the dumps. I had mine tested recently and it was quite low, probably from all the Tramadol. Supposedly testosterone can help reduce pain and inflammation, and improve mood and energy.
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#193630 - 01/04/11 11:30 AM Re: Testosterone replacement [Re: seekonk]
drizzit Offline
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Registered: 02/18/06
Posts: 1927
I use a testosterone gel.

Mine numbers were at the bottom of the normal range. rheumy thought it could help with my osteoporosis. My bone mass is improving nicely but he never mentioned any benefit for inflammation. I think It definately did help with energy levels.


Edited by drizzit (01/04/11 11:32 AM)

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#193631 - 01/04/11 11:58 AM Re: Testosterone replacement [Re: drizzit]
seekonk Offline
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Registered: 12/06/10
Posts: 1254
You mention an important issue, which is loss of bone mass from low testosterone.

It seems important to keep an eye on hormonal health, expecially since some of the medications commonly used here can cause low testosterone.

I already mentioned opioids, but other medications commonly used here such as MTX and Sulfasalazine are also known to reduce testosterone levels.

For some reason, many people who would never have a problem with taking thyroid medication seem to have a problem with taking testosterone. Testosterone is at least as important to male health as thyroid hormones, and a testosterone deficiency can cause not only loss of bone density in males but also a range of other health problems.


Edited by seekonk (01/04/11 11:59 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#193956 - 01/07/11 01:04 PM Re: Testosterone replacement [Re: seekonk]
moina Offline
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Registered: 07/21/10
Posts: 29
I'm not an expert on this, but I remember reading that low thyroid and low-t scores can be related, ie, low thyroid can decrease your testosterone level.

The problem with replacement gel is that it fools your body into not producing testosterone, so you get dependent on the gel. Maybe that's not a big deal to you, but its something I think about.

My t level was at the low end of normal about a year ago -funny, I was taking Tramadol at the time - but my MD wouldn't do anything except give me a referral to an endocrinologist. I hear those folks don't give you anything unless your levels are severely out of whack.

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#193960 - 01/07/11 01:33 PM Re: Testosterone replacement [Re: moina]
seekonk Offline
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Registered: 12/06/10
Posts: 1254
Originally Posted By: moina

The problem with replacement gel is that it fools your body into not producing testosterone, so you get dependent on the gel. Maybe that's not a big deal to you, but its something I think about.


That is certainly an important issue.

Some say that you can get off the gel and recover your own production in a couple of months. Some say that doesn't always happen.

Right now my quality of life is so low, though.


Edited by seekonk (01/07/11 02:18 PM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#198540 - 02/18/11 07:39 AM Re: Testosterone replacement [Re: seekonk]
KurtAS Offline
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Registered: 03/13/05
Posts: 186
I'm also on T-gel replace due to very low numbers. 10yrs ago I had severe chest pain (which later turned out to be my spondy flaring.) They did stress test which was inconclusive, so due to Spondy dx they wanted do heart cath, which made sense.

Heart Cath showed my heart was fine. The doc went in thru my right femeral artery in groin. Apparently, from all the doc visits & test since, the cardiologist initially went into my femerol artery as suppose to, but punctured thru the other side of it. He then pulled it back into artery & proceeded up to the heart. He did not tell anyone at the time, but one tech in room later stated he had major issues inserting into artery.

After Heart Cath I was placed in bed (still in hosp)with sandbag on groin so artery could clot. I was in severe groin pain since I woke from proceedure. After 6 hours of lying in bed, they said it was time to get up. I couldn't. The pian was so bad I could not stand or walk. The cardiologist gave me 2 percocet & once they kicked in he had them take me to my car in a wheelchair.

I'll try make Long story shorter.. the "other" puncture in my femeral artery continued to bleed unabated. The next moring my right testicle was twice normal size and had huge blue lump on it. I called cardiologist who had me come in. They said was normal, gave me 30 more percocet & sent me home. 2 day later, my entire testicles where black/blue & size of grapefruit and my entire mid sction and legs were also black & yellowish. The pain had increased beyond comprehension. As directed on phone, I went back to cardiologist office. Again, they said probably normal as they didn't "feel" and aneurism. They gave me more percocet & sent me home.

Two more days later, they had rush me to hospital as I was blacking out. I was white as a ghost. I was still bleeding internally for several days after heart cath. The ER did test and determined the "other" femerol artery puncture has clotted. But, I now I had a massive hematoma (blood inside) that could not be drained. I was packed with blood that was now like playdough. The ER doctors said it was too late to drain all the blood.

The many doctors I saw after concluded this major trauma/injury to my testiclesis main reason for my low T. I also sufferred severe inguinial & spermatic nerve damage which still to this day, 10 years later, gives me pain. I've had several nerve blocks and 3 cryo-ablations, where they go in a freeze/burn/kill the nerves. This helped somewhat but to this day I have daily groin pain in my testicles.

The T-gel replacements certainly made a difference & my levels qucikly got back to normal. They also feel the mega pain meds I was on for several years after also played a role.

Sorry for long post... sometimes I need to vent, today was one of those days. If you're feeling "down" or no sex drive, get your T-levels checked! KurtAS


Edited by KurtAS (02/18/11 07:48 AM)

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#200891 - 03/10/11 07:10 AM Re: Testosterone replacement [Re: KurtAS]
Aston Offline
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Registered: 03/10/11
Posts: 10
That sounds terrible. Hopefully you got reparation from the hospital. That's scary that a doctor can make a mistake and try to hide it rather than dealing with it especially when a patient's life is on the line.
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Make the most of every day.

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#219929 - 10/21/11 10:23 AM Re: Testosterone replacement [Re: moina]
jrdn86 Offline
First time visitor

Registered: 10/21/11
Posts: 1
Originally Posted By: Aston
That sounds terrible. Hopefully you got reparation from the hospital. That's scary that a doctor can make a mistake and try to hide it rather than dealing with it especially when a patient's life is on the line.


I had a friend who had been taking medication for years, and when she was in another country she found out from another physician that her medicine was something not meant for her at all. That was really scary.

Originally Posted By: moina
The problem with replacement gel is that it fools your body into not producing testosterone, so you get dependent on the gel. Maybe that's not a big deal to you, but its something I think about.


This is a rather frustrating marketing scheme. I'd consult a physician and get a second opinion first if I were you.
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medical coding

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#235432 - 06/23/12 08:47 AM Re: Testosterone replacement [Re: seekonk]
robert44 Offline
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Registered: 06/08/12
Posts: 28
Loc: Houston, TX, USA
Has anyone tried hormone replacement therapy? If so, could you let us know how it effected your energy levels (if you suffer from fatigue). Thanks!
_________________________
I have a preliminary diagnosis of AS. My primary med is Asacol HD, 6 tablets per day (4.8 grams per day). I do not have any signs of IBD. I'm 52 and was diagnosed in Dec 2011. I think I have had symtoms on-and-off since I was 20.

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#236662 - 07/13/12 06:32 AM Re: Testosterone replacement [Re: seekonk]
Polito09 Offline
First time visitor

Registered: 07/13/12
Posts: 1
I think you may need to see endrocoligist (spelling ?) for
test. Keep in mind that it can and will bring up your
cholosterol level (bad kind) and reduce the good kind. So if your gonna go long term your best to see your Dr.

How old are you? What do you intend to do? If you gonna use test, bear in mind that if it is a aging problem
you may run the risk of prostate cancer.

So if your needing blood test go and find out what your
natural level is first. If it is low, then he can figure it out for you.

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#239721 - 08/29/12 07:46 PM Re: Testosterone replacement [Re: seekonk]
pooch Offline
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Registered: 08/29/12
Posts: 2
I am the poster boy for Low T or should I say No T. I also have severe thyroid problems. I recently had a tumor removed from my para thyroid. All topped off with Severe AS.
As far as T replacement goes it becomes very frustrating because you get tired of taking the gel or deep muscle injections and as soon as you stop your levels plummet sometimes lower than before. There is one drug that actually stimulates your body into producing it's own testosterone. It is used for woman who are having trouble getting pregnant. The drug is called Pregnyl and you inject yourself
My experience is that Testosterone never helped my pain in any way. Good luck.

Pooch

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#252314 - 05/17/13 08:30 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
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Registered: 05/31/10
Posts: 1259
I am going to start Axiron which is the under arm product. my levels are very low so I am going to give it a try. That heart cath story begs for an attorney. simply not acceptable practice. Jesus!
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#252853 - 06/01/13 05:29 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
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Registered: 05/31/10
Posts: 1259
After 9 days on Axiron I have not seen any really noticeable results. I have had some fatigue which I ascribe to finally getting a real vacation for 3 weeks from the battle of the ICU. Any guys here have insight into the timeline for replacement. Symptoms were low libido, lack of energy and a couple other special gifts of low T.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#252864 - 06/01/13 01:37 PM Re: Testosterone replacement [Re: seekonk]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
Your dose may be too low or you might not be absorbing properly, so you should have blood tests to verify that your levels are improved.

However, the effects can take a while to kick in. Here is a study regarding time to onset of effects of testosterone therapy.

http://www.ncbi.nlm.nih.gov/pubmed/21753068

Quote:
Effects on sexual interest appear after 3 weeks plateauing at 6 weeks, with no further increments expected beyond. Changes in erections/ejaculations may require up to 6 months. Effects on quality of life manifest within 3-4 weeks, but maximum benefits take longer. Effects on depressive mood become detectable after 3-6 weeks with a maximum after 18-30 weeks. Effects on erythropoiesis are evident at 3 months, peaking at 9-12 months. Prostate-specific antigen and volume rise, marginally, plateauing at 12 months; further increase should be related to aging rather than therapy. Effects on lipids appear after 4 weeks, maximal after 6-12 months. Insulin sensitivity may improve within few days, but effects on glycemic control become evident only after 3-12 months. Changes in fat mass, lean body mass, and muscle strength occur within 12-16 weeks, stabilize at 6-12 months, but can marginally continue over years. Effects on inflammation occur within 3-12 weeks. Effects on bone are detectable already after 6 months while continuing at least for 3 years.




Edited by seekonk (06/01/13 01:37 PM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#253233 - 06/02/13 05:59 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1259
Thanks man. Sounds like I am early in my expectations.... appreciate your post.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#255678 - 07/29/13 07:28 PM Re: Testosterone replacement [Re: Polito09]
Poppa_John Offline
Registered Visitor

Registered: 07/23/13
Posts: 132
Loc: Arkansas, USA
A urologist can also test your testosterone levels and either prescribe gel or give you testosterone injections in their office normally on a monthly basis.
_________________________
Poppa John:
Symptomatic since 1988, diagnosed with Spondylitis, Fibromyalgia, probable IBD March 2013. HLA B27 neg. Sacroillitis, Osteitis, Fibromyalgia
Fused T 2-12, Fused C 5-7, HNP L4-5 with laminectomy/discectomy 2014.

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#255714 - 07/31/13 07:57 PM Re: Testosterone replacement [Re: seekonk]
64plus Offline
First time visitor

Registered: 06/13/12
Posts: 1
I am currently on testosterone injections and would say this is preferable to a topical replacement. Been there done that. I would put the gel on in the AM and by the evening would have swam and had a shower Amanda it was gone. Injections seem more efficient. Mood much improved as is energy level and dare I say, improved libido.
Diagnosed AS in 1976, so yes, am getting old. This desease is not getting any better, worse as time goes on. Have tried several biologics with what I would call little success. Really about to give up hope of having any quality retirement years. Would like to travel just a little but never seem to feel like doing much of anything. Bad attitude about old age as it seems hopeless. Currently trying the LSD again, but have been here before. Oh well, sorry about the whining but most simply have no idea what an AS victim goes through so it is good to know I can
here, I know you guys get. As for low t replacement I say it is good and go for it.

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#260492 - 11/07/13 06:45 PM Re: Testosterone replacement [Re: seekonk]
Poppa_John Offline
Registered Visitor

Registered: 07/23/13
Posts: 132
Loc: Arkansas, USA
I just started testosterone replacement therapy last week. My PCP did labs and said for my age my T level should be in the 500 range and mine was 208. Started Androgel middle of last week. Very expensive med. My family doc had to fill out paper work to get my insurance to approve it due cost almost $400 a month. My copay was $40 but the drug company has a copay assistance program which reduces the copay to $10 a month for up to a year.

Maybe I am just being optimistic but I think I can already tell a difference.
_________________________
Poppa John:
Symptomatic since 1988, diagnosed with Spondylitis, Fibromyalgia, probable IBD March 2013. HLA B27 neg. Sacroillitis, Osteitis, Fibromyalgia
Fused T 2-12, Fused C 5-7, HNP L4-5 with laminectomy/discectomy 2014.

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#263640 - 01/21/14 02:10 PM Re: Testosterone replacement [Re: seekonk]
strengthcoach27 Offline
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Registered: 01/11/14
Posts: 23
Loc: Philadelphia
One of my very first symptoms was Crushing Fatigue and weakness with very stiff muscles, and an inability to get an erection. I am a Strength coach so I knew something was off. my PCP at the time did only a few tests on of them was Testosterone. mine was very under 100. he prescribed me Axiron and sent me to a urologist. I saw the urologist almost 2 months later and he took me off of it, and sent me to an endocrinologist, the endocrinologist sent me to a neurologist the neurologist sent me to a sleep physician and so on. this process took a year and a half

Long story short I was recently diagnosed with seronegative spondylitis I started Humira a week ago. the first thing i noticed was that the next morning I woke up with an erection. not like well thats weird. more like why wont this thing go away!!!!! turns out that when TNF alpha is suppressed leydig cells that produce testosterone get freed up to do their thing. ill get a testosterone test with my next set of bloods and let every one know what it says.

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#273751 - 03/26/16 12:01 PM Re: Testosterone replacement [Re: strengthcoach27]
chemman Offline
Registered Visitor

Registered: 03/20/11
Posts: 191
Originally Posted By: strengthcoach27
One of my very first symptoms was Crushing Fatigue and weakness with very stiff muscles, and an inability to get an erection. I am a Strength coach so I knew something was off. my PCP at the time did only a few tests on of them was Testosterone. mine was very under 100. he prescribed me Axiron and sent me to a urologist. I saw the urologist almost 2 months later and he took me off of it, and sent me to an endocrinologist, the endocrinologist sent me to a neurologist the neurologist sent me to a sleep physician and so on. this process took a year and a half

Long story short I was recently diagnosed with seronegative spondylitis I started Humira a week ago. the first thing i noticed was that the next morning I woke up with an erection. not like well thats weird. more like why wont this thing go away!!!!! turns out that when TNF alpha is suppressed leydig cells that produce testosterone get freed up to do their thing. ill get a testosterone test with my next set of bloods and let every one know what it says.


Thank you for reporting this. Did you ever get the testosterone test after starting Humira?

Before I was diagnosed with AS, low T was found and I started TRT. My AS has improved this past year, so I figured I would like to see if my body could make enough T on its own. The withdrawals have been difficult. Now my AS is creeping back in frown

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