Nice, I’m close to having sinus surgery. I sleep on my side which fortunately is one of the only times I can breathe out of my nose (well, one side). Otherwise I’m pretty much mouth breathing like 85% of the time. They want to do all kinds of stuff… sounds like the recovery is going to suck for a week or two but should make a huge difference after that. I honestly don’t know what consistently breathing through both sides of my nose even feels like, I’m not sure I’ve ever been able to. Hopefully it helps my sleep as well, not that it’s bad, but I still think it will help some.
Yes I recall you mentioning this situation, I think I saw MRIs? Gonna clean you out like a pumpkin eh?
Pretty much. All sorts of stuff. Balloon thing or worse for all but one sinus, fix deviated septum, turbinate reduction, it’s like 8 things
3-6 months and you’ll be a new man
I am no longer on TRT. That is the big change.
1. Almost 24 months ago, my doctor made a comment that he would like to treat me in an alternative way, but it would require I get off of TRT completely. The thought of pulling back from exogenous TRT was enough to say “no thanks”.
2. Then Covid hit. I assumed that I would only be unable to fly back to Asia for a few months, so I post-poned my TRT insertion in order to plan for a full six months of being on TRT while out of the country.
After the 3rd month of delay, I realized that the travel ban wasn’t going to change; and I was not suffering the withdrawals that I anticipated. I decided to continue and withdraw completely from TRT.
MY BLOOD TESTS:
The overall results are interesting to me.
Hemaglobin and Hematocrit dropped to pre-TRT levels of 15 and 46, from highs of 18 and 53.
Alkaline Phosphatase – that weird item that no one could explain – returned to a normal 37 from a consistently low 30.
Ultrasensitive Estradiol dropped to 12 - down from a regular of 35-38.
FSH/LH: Prior to TRT treatment, I had crazy high FSH that no doctor had ever been able to understand when combined with the remainder of blood results. During TRT, FSH & LH were zero as expected. But FSH returned to high levels of 25.8 after TRT stopped.
Thyroid results were close to previous results, although I am still waiting on T3reverse, and TBG.
Free Testosterone was 82.3pg/mL – which calculates to 1.78% on the Issam calculator – lower than during TRT, but higher than Pre-TRT.
Testosterone was 426 – which is considered “low”; and is the lowest I have ever registered.
SHBG was 39, which was the highest it has been for a very long time.
I am still taking Danazol daily (and have been doing so for more than 2 years). I am also taking Pycnogenol and L-arginine; vitamin D (not in the sun much); Men’s vitamins; and an Omega 3-6-9.
HOW I FEEL:
That is the weird part of all of this. I do NOT feel bad. I’m “tired” often and tend to complain about it. There were times when I was past due for a TRT insertion that I wrote in this journal that I “wanted to die” because I felt so bad.
I have not had those feelings at all as I stopped TRT.
Looking back at my journal when I started, and how shitty I felt prior to TRT, it is very interesting to me that I am not feeling that way now. Without TRT, the only difference is the Danazol still being taken to control SHBG.
NO DOCTOR VISIT YET:
I have not visited the doctor yet and will not until the final results are in.
The goal will be to review how I am doing now; and where to proceed. I am willing to try a different therapy now that TRT has stopped and I feel ok.
Problems that I never solved are Anorgasmia and low ejaculate volume when I do ejaculate.
This has been – and continues to be – a journey.
What should I do 27 years old shbg 69 and 24 total testosteron. I wanna live long healthy life and feel good at same time. Im so tired and zero sexdrive
Start a thread with labs, personal history, background, etc. list location so we can help point you in the right direction
How you feeling now, bro – still good? Any future plans to pick up TRT or Danazol?
Hi … thanks for the follow up. I plan to update this thread soon as I just had blood work done Friday … I never stopped taking Danazol btw. I’ll update more when I can.
Time to update this journal. I haven’t posted anything because I haven’t really had any information that was beneficial. For this update, I have tagged a few people that expressed an interest in updates.
Flashback to my first post in Nov 2017:
Weight 130, libido drastically decreasing, tired, sleeplessness, fatigued, cold hands and feet – and I felt “blah”. Testosterone 900-1300; SHBG topped out at 120; Estradiol was virtually undetectable. I had a gazillion tests run to see if anything would be the “ah-ha” moment – but that never happened.
I began taking tests with the sole purpose of eliminating disorders. Brain MRI, penile doppler (READ: stick a needle into your penis), urinary stress, kidney ultrasound, heart testing. Some symptoms pointed to Thyroid so thyroid markers in blood were tested repeatedly. Thyroid tests have always shown that nothing was out of whack (in numbers).
I supplemented with saliva and urine testing to provide an alternate perspective to the testing results. (For 24 hours, I had to collect all urine; and keep it stored between uses in the refrigerator. Explain that one to anyone that opens the refrigerator).
Then I got on TRT in March 2018:
Once we got my dose above 1500 (and tested it as high as 3000), I began Danazol therapy and felt progress. The high dose of T didn’t bring down the SHBG; it came down only after Danazol was started. I began feeling good – the world wasn’t “blah” – it was in color again. Estradiol increased but only slightly. Lack of spontaneous erections were still a major unaddressed issue. I began sleeping well.
To clarify, I have written repeatedly that “… my libido (sex drive) is kicking. It is my arousal (erections) that aren’t doing me any favors. Libido is also in the brain and it is functioning correctly.”
In October of 2019, I submitted to a battery of heart related tests to see if there were any issues with blood flow (cold hands and feet, ED issues). They found no flow related issues of any kind.
February 2020, diagnosed with Sleep Apnea:
“Nitric oxide is important in regulating blood vessel dilation.” My Nitric Oxide has ALWAYS been low. “I continue to read that there is a well known connection between sleep apnea and decreased nitric oxide levels.” Tried the CPAP/APAP machine for a few months. Hated it and stopped. Learned to sleep on my side which I still don’t like – but I am sleeping. Using the CPAP machine did not outwardly affect nitric oxide levels or erection strength.
And then there was COVID:
I kept delaying my pellet re-insertion thinking I would be returning home “soon” and I wanted a full 6 months of pellets in my system. Before I knew it, a year passed since my last pellet insertion. I was off of TRT and I wasn’t feeling bad!
In November of 2020, I returned to my doctor after being away for one year. Since I was off of TRT, we discussed other possible treatment methods. He asked whether I wanted to try alternate T-delivery methods (shots, gels, etc.). I declined, because I still believe that Testosterone supplementation wasn’t what I really needed.
My Doctor explained about trials he had been reading about using Chlomid off-label to boost or “kick-start” Testosterone production. I’m game for just about anything.
I tried with 25mg Chlomid per day. After about 6 weeks, Testosterone had risen about 50%. But SHBG increased also. The lab used the wrong vial/tube for my Estradiol test and corrupted the blood so I don’t know what the results would have been. I noticed erections being even less than normal (and that meant very few).
Next was 50mg Chlomid per day. After about 6 weeks, Testosterone had risen an additional 25%, making my increase from pre-Chlomid test to now – a full 94%! I also grew a vagina. Well, not quite, but I had ZERO erections at this dose. SHBG decreased but Estradiol was a very high 46.
I reduced my dose to 12mg (when you break a 50mg tablet into 4, you lose tiny pieces and powder which is why I say 12mg and not 12.5mg). I stayed with this dose 12 weeks. SHBG doubled from the previous level. Estradiol decreased to 27, which was below the maximum range of 29.
I had not been testing FSH, although I knew it would increase from “0” once I stopped TRT. It returned to 31.5!! Prior to TRT, I also had unusually high FSH.
My Testosterone was 774; a decrease overall, but still an increase since the beginning of the Chlomid trial. Testosterone percent was 1.62% due to the elevated SHBG. Interestingly, had my SHBG not changed from the last test, my free T percent would have 2.38%. SHBG is a bitch.
Morning wood continues to be strong. I am now testing a 5mg daily Cialis in an effort to bring back spontaneous erections AND to see how blood flow is affected.
TL;DR: “But how do you FEEL?”
Surprisingly, I feel good. I sleep at night – not without waking up and changing positions – but I get 7-8 hours of sleep every day. I weigh about 147 pounds, up from when I started this journal. I am no longer on a carb restricted diet but I do try not to scarf down an un-necessary amount of food. I still experience cold hands and feet which still indicate blood flow issues. I sleep with socks now which I believe has been a help with blood flow to my feet.
On a humorous note, every doctor asked about my stress level and whether it could be affecting how I felt. Pre-Covid stress level felt like semi-retirement. Post Covid? 90 days of business closures followed by 2 hurricanes including one that flooded my home, and a severe freeze … all followed by the Great Flood of 2021 which put 8” of water into my home. I now have stress levels we can quantify!! Even with all of that, I still feel better.
What is in the future? June 2021 – almost 4 years later.
I plan to increase my L’arginine (following Dr. Ruterbusch’s online suggestions) as well as continue the daily Cialis for at least a month. I do not plan to return to TRT. I have been taking 50mg of Danazol per day for many months. I may return to 100mg daily to test what it does to my SHBG levels without being on TRT.
Thank you to those of you who have followed my journey and expressed interest in the treatment directions I took.
Wow man. Very interesting read. Glad you’re living a better life.
Wow, really fascinating man. Thank you for typing it all up, very thorough account!
So you really think you’re off TRT forever? I know you feel good — you’d say it’s better now? That’s a very high dose of Danazol. Does your doc have any concerns with maintaining that long term?
I have learned to NEVER say “NEVER”, but right now, based on today’s labs and how I feel – I am off TRT with no plans to return.
I did not lose faith in T supplementation or pellets … I have now gone the full circle and believe that my original opinion was correct; that “T” wasn’t my problem. And I know how that is going to stir up some people here … but I always say – This is what I believe for my journey. I also knew that my specific circumstances did NOT fit any standard molds, and that treatment would be both difficult and confusing.
This is NOT related to my circumstance, but does provide a reference for long-term danazol use.
The mean time period of treatment with danazol or stanozolol was 8.8 years
My doctor has not voiced any concerns with the Danazol use. There aren’t studies about SHBG and long-term use. I don’t exhibit any side effects that I am aware of.
Your question is a very good one. It is also the reason I made this journal because I hope this provides information for people searching for answers.
All of this may change in a few weeks when I see my doctor again. But until then, I push forward.
One week or so in, and I feel like the daily Cialis is helping. My penis is more “spongy” (not always a great word to describe a penis) but that indicates more blood flow.
I have also had more daytime erections. This has more promise than anything I have tried yet.
My first few days though were rough – I had a HORRIBLE back-ache, to the point of being in the office in sweat pants with a heating pad strapped to my back.
I read where daily Cialis can give that side-effect in the beginning so I wonder whether it was the Cialis or did I just coincidentally sleep wrong and didn’t realize until later.
My last update was June 10, and today is August 20, 2021. I’ll be getting blood drawn next week and will see what has changed since my clomid experiment ended.
DRUMROLL: Daily Cialis has been a game changer.
Middle of the night erections are strong enough to hammer nails. Mental (and visual) stimulation producing solid erections. This is quite a change. I had experimented with Cialis, Viagra and others – but never a small-dose daily-regimen.
I have increased my iron supplementation slightly trying to see if that helps with the being cold. It seems to be better but I need a jacket in most aircon restaurants.
I feel as though I have gained FAT at my mid-section (belly and not-so-loved handles). I don’t blame that on food intake - I think it is exercise laziness.
I will visit with my doctor again after the blood results are in, however I do not expect to make any changes. I’m far from feeling “perfect” but I think I have found a happy middle ground.
I was vaccinated in Feb & March against Covid and plan to get the booster shot soon. If someone could only make that go away. I haven’t seen my wife, home, or dogs since January 2020 – and I won’t see them until sometime in 2022.
Did cialis help you ?
I started this thread in 2017. My last update was August, 2021. Today is July 7, 2022.
[If you are new to my thread, back up a few messages, until you get to post 405 – that was the overall summary of this long journey – updated and summarized in June, 2021.]
My current situation (medical):
Not on TRT. Still taking 50mg Danazol daily to control the SHBG. Still taking Cialis 5mg daily plus all my vitamins, iron, iodine, vit d, etc. All of my meds are obtained in the USA.
My current situation (in general):
I returned to Asia (Thailand) in March of 2022, after being gone for over 2 years. Returning “home” eliminated my stress, allowing me to begin exercising again. It also allowed me to return to a diet of Thai food (which is relevant to this post).
While in the USA, I had a protein shake in the morning, a large (restaurant-purchased) lunch (fats, carbs, proteins, everything!) and then fruit and a protein bar for dinner. I rarely eat a meal at night as I am not hungry.
In Thailand, 90% of my meals are “Thai food”, consisting of rice and usually a meat dish, sometimes vegetables. Thai food has always made me feel “happy”. I took a break from this routine for 30 days and ate Western Food daily as an experiment. I didn’t enjoy the feeling and it had NO effect on my problems, explained below.
In my last update, I was weighing 147. I have dropped 10-15 pounds since returning to Thailand, with all of it attributable to exercising. I walk as much as I can and enjoy it. Today I walked 4 miles.
I feel good. I sleep almost 8 hours every night. I am mostly happy*****, life is good. I still yawn all day. I have changed my sleep position and do not use my (unusable, recalled Philips) CPAP machine.
*MOSTLY HAPPY because I am having substantial problems again with ED; and the more I fight ED, the more my libido is effected.
This is relevant because while in the US, the daily Cialis was providing me with daily spontaneous erections. Driving down the road “thinking” – erection. Watching TV and letting the mind wonder – erection.
I previously wrote that my penis was more “spongey” which is my way of explaining blood flow. On days where my flaccid, non erect penis was “hard” and not spongey, I knew that there would be no erections.
A little over 4 months out of the USA, and those spontaneous erections are not happening. However, almost every morning, I have a 100% hard erection.
So what has changed?
- Location – USA to Thailand
- Diet – eating food that is much better for my health in Thailand. But not eating breads, potatoes, servings of vegetables, etc. on a regular basis. Eating much more fruit.
- Weight – I’ve lost fat (weight) in my stomach (the goal).
- Stress – virtually eliminated (except for ED failures).
- Temperature – haven’t been cold in Aircon restaurants nor have I needed a jacket, but I find that I don’t need as much air conditioning as before.
- ERECTIONS. Difficulty (sometimes impossibility) in getting hard; losing the erection after 3-4 minutes; then getting 50% of it back after 10 minutes or more.
Libido is decreasing, and I feel it is my body trying to protect me from the more frequently occurring failures I have been having.
Here are my numbers since my last update.
SHBG fluctuates – Danazol keeps it down, but it still moves up and down for a reason I have never understood.
In May, my T was at 271. At the end of June, my T was at 575, which is immediately after the 30 days of Western food experiment.
I keep this journal because it allows me to re-read what I went through as I was writing this journal initially in real time.
Because of my notes, I noticed that when I started writing about my problems, my weight had dropped to where I am now; and I was in Asia when I noticed these problems began.
I am also aware of some studies which link diet to ED: “In this case, we see that sexual function is diminished by malnutrition, which is essentially a lack of fats and carbohydrates.” But I can’t imagine that I am malnourished.
I know that I supplement my protein more than many people, but I still eat fruit, vegetables (but not multiple servings like before), and other carbs, so I don’t feel I am depriving my body.
But as I read back, I wonder if there can be a food reason I am suffering from ED.
That means I need to begin a new experiment to see if there is a link between the type of food I am consuming and my ability to get and maintain erections. I never imagined that after 5 years, I would be discussing “food” as a factor.
“Food” is for sure a massive factor. It’s even more simple that we would imagine, if your body doesn’t have enough nutrients it goes into survival mode, and the last thing you need in survival mode is another hungry mouth. I’d say 50% of this issue is down to correct eating for your own bio chemistry. Your required nutrient balance are individual to you, and are largely adapted from the diet you and your ancestors were brought up on. Switching can take a long time for your body to readapt.
You need to do deep work to figure out your bio type. For example undermethylators need tons of methione, overmethylators need tons of folate. We ALL need way more glycine and glutamate from bone broth. Before, for 10’s of thousands of years we would eat nose to tail. Now we only eat muscle meats, and our amino acid profile is totally screwed. Without glycine and glutamate in bones, you can’t make glutathione (your bodies 101st airborne division for health). Glycine also counter acts too much methionine in muscle meats. This is just a 1% snapshot into what you can learn about “food” and how it impacts your health. It’s endless, but there is a very nice trick you can use. Just listen to what you crave, most of the time that will point you to what you need. Your body is intelligent, listen to it.
Another super important thing I learned, is after middle age we switch from primarily hormone sensing, to nutrient sensing to control these types of matters.
Are you sure you want to continue this old conversation?
That is how I was greeted when I hit “reply”. But YES, I want to continue this old conversation strictly for the records and if someday perhaps, something in this long, convoluted journey will help someone.
Today is December 20, 2023. Another year has passed. My T levels seem to stay around 428 ng/dL; and my SHBG remains under control at 35 nmol/L.
Medicine: I am still taking Danazol and Cialis daily. I have eliminated the crazy amount of vitamins and supplements I was taking and now take nothing more than the Probiotic that has been a great help.
Surgery: I had a vasectomy which has been on my list for years. It was performed by the most amazing doctor - Darren Chapman at Pearland Urology in Pearland Texas. I can’t say enough good things about him.
Sleep: My sleep is plentiful, although I do have bouts with insomnia from time to time. Sleep apnea is under control, I might go 6 weeks without an episode or being bothered by it. I never used the CPAP machine again. I check my fitbit daily to see whether I suffered with any problems the night before, and indications are rare. Pillow adjustment and more sleeping on my sides has brought this issue under control.
Weight: Still about the same, with only slight fluctuations. I have stopped worrying about food adding to or causing any of my issues. That was just one more experiment to see if the solution was something easy. Although I still don’t gorge, I rarely worry about what I eat any more.
Erections: It is a mixed bag. I still get the “wilted dick” syndrome after a short time, but after a rest it returns. Supplementing with Viagra helps and makes the sessions more interesting (and my penis substantially more firm for longer).
Ejaculation: Ejaculation achieved through intercourse has continued to decrease. But lack of ejaculation does not markedly reduce the pleasure – as long as erections are cooperative, happiness still prevails. I suffered all my life with retarded ejaculations, so this is nothing new. Consequently I have noticed that not ejaculating has made me hornier for a second session a few hours later.
Covid: Took my fifth shot in September, and within 30 days was unlucky enough to catch full Covid - my first infection. I was treated with some kick-ass medicine (not approved in USA, I was in Thailand) that had me feeling normal after 2 days, and well after 5.
TRT: I was asked a few years ago if I thought I would be “off TRT forever”. That answer is clearly “yes”. I still stand behind TRT as a treatment – but NOT for me. I don’t believe Testosterone played a part of my problems; and it has never played any part in solving my problems.
Final comments: I still stand behind the theory that there is something wrong in my hormone or endocrine system, but is the one-in-a-million that can’t be found, isolated or treated.
I think too many of the doctors wore blinders and took the easy way out by suggesting TRT without understanding that there were other underlying issues (“TRT will solve all of that”). I have been a problem case, so I don’t blame them – I’m confident that TRT worked for a majority of their patients.
FINAL SUGGESTIONS TO ANYONE WITH HIGH SHBG:
Talk to your doctor about reducing your SHBG before going on TRT. Don’t accept the blanket reply that “higher TRT will lower SHBG”. Ask them to consider low-dose Danazol or something similar for 6 months before making the TRT commitment.
Increased Testosterone does not guarantee reduced SHBG. Fight that argument and find doctors who are willing to experiment and work with you. I am talking about a 6 month trial with an oral medication before making the commitment to TRT. Danazol took my SHBG from 120 to 35.
I wrote the above comment on someone else’s thread years ago. Food for thought.
And all the Testosterone in the world isn’t going to change my genetic predisposition to high SHBG. My T levels were pushed above 3000 and SHBG didn’t budge. You can give up a thousand things (I did) – and your SHBG value won’t move either.
TRT is a marriage; a life-long commitment. It is not a treatment you want to start and stop if you can avoid it.
Some of the symptoms that I listed in post #1, November 12, 2017, are still with me today. But there came a point when I realized that there was nothing more that could be done, and this would always be my “normal”.
This six year diary should not be considered anything more than suggestions and ideas for discussion. Thanks to those who followed and commented. I wish you all the best success.