thoughts on labs. recommendations on what direction to go.

[walk]

little back story, I suffered severe tbi 10+ years ago. broke my neck, hip and ripped my brain up. My brain is covered in scar tissue. I was pronounced dead, then in a coma for some time. I've recovered rather well but the story will fill it the rest.

I have an upcoming appt. with dr saya. mainly to see if I should go back on trt and see his recommendations.

my primary care is confused. doesn't want to refer me to another specialist. I have pain and or tightness running around my back at times, started lower back moves up and into chest. went through some night of bad leg pain. constant urge to strech, strong urine smell comes and goes. bowel problems including some blood after whipping. and went through a phase of semen like discharge and think i passed an kidney stone. bad fatigue at times, can't stay awake but cant sleep (if I make sense).

I also have another appt coming up with a different doctor to try and see an specialist, they all want a fucking referral. Somethings not right but doctors seem to believe im good, healthy. This latest visit the primary put me back on test cyp @ 200mg once a week.
my cholesterol started going backwards when the other symptoms began. my primary thought i had an std, or an infection, it tested negative. He gets a deer in headlights look when I describe this stuff to him. says I am healthy. I also have an issue with nocturnal eating. to the point I sleep walk and eat according to my wife.

sorry for any graphic information but I'm getting a little scared to say the least.
my hair growth is fine, libido is strong, alot of times a little to strong. im 38 my libido is higher than it was in high school. erections are good not great but sensitive penile head.
getting desperate for answers. I stopped trt, no resolve, I stopped working out, stopped my drinking lots of water, stopped eating fruits vegetables and lean meats, vitamins, etc. trying to find an answer.

as I lay here typing this now, I was fatigued fealty most all day, knees ache, back aches, but fatigue has passed. its now 2130 and im wide awake. just took my first doe of malotonine I purchased today.

doctors has went to the point of giving diagnosis of PTSD and prescribed medical cannabis. I stopped that also.

 

[sammmy]

Doctors do not understand lots of diseases. Some will honestly admit it, others are quick to claim "it is all in your head" when they can't find anything to explain it in their head.

Did your primary check for all possible STDs:

Sexually Transmitted Diseases (STD) in Men: Symptoms, Causes, Types, Treatment | Medcare

A sexually transmitted disease, or simply STD, is a disease that is usually contracted through sexual activity. Learn more about the causes, treatment & symptoms of STD in men here.

www.medcare.ae

Blood after passing a stool should be an instant referral to a gastroenterologist, colonoscopy etc.

For the pains, have you tried anti-inflammatory like ibuprofen? Your immune system does not seem activated except maybe slightly elevated neutrophils - the typical level is around 2000 but yours may be different.

 

[walk]

He checked chlamydia and gonorrhea, to the extent he prescribed my a medication and gave my an injection for it before the labs came back, But test showed negative. He thought I may have had an infection and again urine showed clean. Thats been checked multiple times with nothing showing up.
Yes, I take i some ibuprofen at times, it does help. I was thinking the pain was due to low e2 but its not as low as I thought. that actually is naturally higher than the original dr that prescribed me t had it.
I dont get sick, rare occasion. always to my knowledge had an good immune system. if that has any bearing
I have a gastroenterologist I am trying to see. sopposedly a well respected one near me. but he requires an referral

 

[sammmy]

Did your primary do urine culture? He should test you for all STD's in the list, not only 2 of them.

If ibuprofen helps with pains, it is not "all in your head". Does it help you with the fatigue too? This is inflammation - the immune system is attacking something - could be bones, nerves, muscles, or blood vessels. This could be infection or auto-immunity or tissue damage and then repair.

Since you have blood after stools and bowel problems, this is sufficient reasons to get a referral to a gastroenterologist or find one that does not need a referral. They can do an abdominal CT scan or colonoscopy.

 

[walk]

the fatigue comes and goes. will hit me and couple hours later gone. and there's times I have to much energy, hyper. no matter how tired I wake up multiple times at night. its improved. for a long time I'd go through spurts of being awake for days at a time.

He did do a urine culture, negative. I have access to defy labs. I just looked it covers 7 of them. ill order one from them.

I have an appt. with a new primary the 24th, he is apart of the clinic the gastroenterologist is in. we sit an appt. up and knows the only reason I'm seeing him is for an referral, his secretary does atleast.

my primary was told about the problems, suggesting an over the counter med for hemmriods. really think he believes im making shit up. he told me during a visit to get help after I asked him why he thought estrogen was irrelevant.

I have titanium in my hips, someone made the suggestion that may have something to do with it. but cant get noone to listen. was planning on asking Dr saya with defy medical if he could recommend someone anyone to see. being treated like im making it up or "its all in my head" is kind of depressing.

 

[walk]

with these issues he was quick to hand my a 200mg once a week cyp script. wasn't even asking for it. I have defy for that

 

[sammmy]

You should change your primary. Don't waste your time with doctors that think it is "all in your head".

Observe if the fatigue is related to meals - change the time of meals and see if it comes at particular time after a meal. Digestive problems can cause fatigue.

I used to get post-meal inflammatory headaches, shortness of breath, and severe fatigue, 2 hours after every meal. I've learned to suppress all that by taking digestive enzymes (AbsorbAid) and anti-inflammatory vit B2 with every meal - not clear how it works exactly but it helps some people with migraines.

 

[Guided_by_Voices]

First of all, hang in there. You've come a long way and you likely have a long way to go but there are thankfully a lot of resources who can provide ideas. A few thoughts...many people with a history of TBI benefit form ketones either as a a supplement ( I use the Ketone Aid brand) or from diet or both. I would be suspicious of some form of food sensitivity producing a low-level allergic response or some form or infection/micro-biome issue. Experimenting with a carnivore diet, at least for a month or so could be a good experiment to see if it has any benefit. If you can see a good holistic DR. they can check for other things like cortisol dysregulation that could be involved. Stay positive and look for small wins that will hopefully add up to a big win.

 

[walk]

First of all, hang in there. You've come a long way and you likely have a long way to go but there are thankfully a lot of resources who can provide ideas. A few thoughts...many people with a history of TBI benefit form ketones either as a a supplement ( I use the Ketone Aid brand) or from diet or both. I would be suspicious of some form of food sensitivity producing a low-level allergic response or some form or infection/micro-biome issue. Experimenting with a carnivore diet, at least for a month or so could be a good experiment to see if it has any benefit. If you can see a good holistic DR. they can check for other things like cortisol dysregulation that could be involved. Stay positive and look for small wins that will hopefully add up to a big win.

I'm trying to stay positive, look at a death certificate with my name on it from time to time to remind myself where I came from. pulled myself out of an wheelchair and was doing good. im able to work and live life. I'm a lineman for a career and able to work with no issues, physically and mentally I've recovered rather well.

Started trt once before and after a couple years the bowel problems started and libido went crazy, im assuming my e2 was low. Dr had it at a 9 with a total t in the 800s and now that I've stopped its naturally at 18 behind a pretty low total t.

whatever is causing this i can fell it begin. lower back tightness that develops into a light pain as it moves up back and into my chest. when it gets into my chest kind of feels like I'm lacking oxygen and heart palpitations start until it works down my body and goes away. the leg pain is new and it also went away. really all of it comes and goes. that roller coaster I've read so much about with a hormonal imbalance. head in a box, light headaches, confusion, memory loss, completely zone out at times. but the pain, bowel problems is whats has me concerned.

I've had a dr go as far as tell me to stop eating bananas that it will cause constipation and alot of my problems are in my head. oh and I need to go get help. that's been my favorite. hearing someone im looking at for help tell me to go get help after asking him about estrogen. I've been reading through here over the years so just figured I'd post and see if anyone has dealt with some of these issues and possibly have some answer. I have changed doctors, just waiting on the appt. and the latest on the pain I've been dealing with is arthritis

 

[Gianluca]

If you have history of TBI you definitely want to test Pregnenolone, Progesterone, DHEA, cortisol, IGF-1, on top of Testosterone and Thyroid. 200mg test per week may make you feel good in the short term, but it may also create more problem with the brain later on. Starting at 100mg in divided injections throughout the week is a better idea.

 

[GreenMachineX]

I frequently get the post meal symptoms, but mine include palpitations with the shortness of breath. My heart will beat extra hard and faster for a few hours depending on what I eat.

 

[sammmy]

I frequently get the post meal symptoms, but mine include palpitations with the shortness of breath. My heart will beat extra hard and faster for a few hours depending on what I eat.

Same here. In my case, I have also headaches and severe drop in energy. It could be because during digestion blood pools in the intestines and if the neuro-vascular control is impaired (as it is in POTS), the brain gets insufficient blood and oxygen. Blood pressure typically drops during meals, so your heart is beating faster to compensate.

However, this doesn't explain the shortness of breath symptom. This could be explained if inflammation (activation of the immune system) gets involved during digestion, possibly because of the intestinal flora releasing toxins.

I've found out in my case that I can control the symptoms with little known anti-inflammatories: 5g L-Glutamine in a cup of water (if you don't have problem with herpes viruses activating) or 50mg vit B2 (little known anti-inflammatory that in some people suppresses migraines). Ibuprofen and aspirin also work but they are damaging to intestinal mucosa and to kidneys so I don't use them often.

I also take digestive enzymes, which reduces the fatigue post-meals. I may have insufficient digestive enzymes, which leads to food not properly digested/absorbed and consequent inflammation.

 

[walk]

I started test, 100mg twice a week. pain has improved, still dealing with some but it's tolerable, leg pain is gone. may be a coincidence only time will tell. still have some, urge to pop joints and stretch. overall an improvement so far. took my last 100mg injection Thursday night, now Saturday sleep has improved, im dreaming, something i haven't done in sometime. dreaming of stuff from many years ago smh. focus improved, alertness etc.

 

[walk]

I frequently get the post meal symptoms, but mine include palpitations with the shortness of breath. My heart will beat extra hard and faster for a few hours depending on what I eat.

I'll have to pay attention to that. I've always been a big eater, I get angry when I don't eat. sense this has started my appetite has not been the same. sometimes have to make myself eat, just wasn't getting hungry. except at night, wake up wanting to eat multiple times throughout the night. wife says she catches me eating, still asleep from time to time. had to stop buying peanut butter because id eat so much of it throughout the night. seemed to always go after it.
sense starting trt, ony been a week. but my heart seems to be improved. dont feel it, I seem to be more relaxed. but post above i lay out what im still dealing with. hunger seems to be coming back to some degree.

 

[walk]

well, I began trt at 1ml (200mg) once a week. I was well and improved over the weeks proceeding. not taking any ai other than some dim leading up to my appt. with defy. he wanted me to change my protocol to .33ml three times a week. I did notice that at once a week as I proceeded throughout the week I started getting sluggish.
I waited until my next injection day and began with .30ml and did well day after, did well following injection, until today. 2 days after injection, all I wamt to do is sleep, absolute lazy ass. added urination difficult to start st times.
no acne, no bloat, no joint pain just extreme and slow starting urination.
I was also prescribed tadalafil from defy. my primary prescribed paroxetine, figured I'd try it.

thoughts, maybe the change protocol, or..?

 

[Systemlord]

thoughts, maybe the change protocol, or..?

No major mystery here, you changed your protocol and must ride it out for at least 6-8 weeks. The more often you change your protocol, the worse things will get.

 

[walk]

No major mystery here, you changed your protocol and must ride it out for at least 6-8 weeks. The more often you change your protocol, the worse it will get.

what i was thinking but figured I'd ask those with more experience than myself. I'm normally nonstop, this sleeping all day and feeling like an lazy ass sucks. I broke down and drank extra coffee and even added a preworkout just trying to wake up and still passed out.
thank you for your response

 

[Systemlord]

I'm normally nonstop

That’s me also, I understand. My mother, dad, brother all have this Forrest Gump energy.

 

[sammmy]

Is your weekly dose really 200mg T? That will lead to hyper levels and all kinds of problems. I am surprised Defy went along with that.

The standard dose for starting TRT is 100mg/week.

 

[walk]

Is your weekly dose really 200mg T? That will lead to hyper levels and all kinds of problems. I am surprised Defy went along with that.

The standard dose for starting TRT is 100mg/week.

not defy, I just started defy. the primary had me on 200mg once per week. I was doing alot better, was sleeping better, joint pain and other symptoms had improved. were going to attempt to split that up to 3 times a week but I'm pretty sure it will be adjusted to a lower overall dose.
I am thinking 120mg divided will be close to what im looking for. attempted 50mg (with hcg in the mix) once before and has water retention in my nipples but I stopped for a year after that. gave up to soon, starting back up because shit just got bad over time when I stopped. I have a lower shbg with an e2 at 18 when my total test was in the 200's. original labs above