 Re: Testosterone replacement
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Joined: Aug 2012
Posts: 2
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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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Re: Testosterone replacement
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Joined: May 2010
Posts: 1,598
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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!
Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020
ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
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Re: Testosterone replacement
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Joined: May 2010
Posts: 1,598
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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.
Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020
ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
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Re: Testosterone replacement
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Joined: Dec 2010
Posts: 1,254
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OP
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Joined: Dec 2010
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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/21753068Effects 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.
Last edited by seekonk; 06/01/13 08:37 PM.
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.
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Re: Testosterone replacement
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Joined: May 2010
Posts: 1,598
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Thanks man. Sounds like I am early in my expectations.... appreciate your post.
Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020
ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
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Re: Testosterone replacement
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Joined: Jul 2013
Posts: 132
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Joined: Jul 2013
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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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Re: Testosterone replacement
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Joined: Jun 2012
Posts: 1
First time visitor
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First time visitor
Joined: Jun 2012
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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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Re: Testosterone replacement
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Joined: Jul 2013
Posts: 132
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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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Re: Testosterone replacement
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Joined: Jan 2014
Posts: 23
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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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Re: Testosterone replacement
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Joined: Mar 2011
Posts: 195 Likes: 1
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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 
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