Fatigue Issues, Need Your Help

Pharma / TRT Testosterone Replacement
1

Sorry for starting another thread; My last one is so cluttered and I feel it would generate a lot of off-topic discussion that would be counter-productive. (As well as a couple pages of petty arguing which makes it hard to scroll through to find info.) I promise this is my New, Ongoing, and Final Case-File Thread - I won’t start another one after this!

I have been on TRT since December of 2011, and I was 28 years old at the time. My main problems were fatigue, depression, lack of sex-drive, weight gain completely in the “love handles”, and inability to gain muscle/burn fat effectively. I had all (majority of) the appropriate labs listed in the Stickies to rule out anything else that could be causing these symptoms and, aside from slightly-over-range LH and FSH, everything was fine. Given that I had had testicular cancer 3 years prior (orchiectomy - no chemo), and TT score of 285ng/dL (250+), FT score of 60pg/mL (47-244) [1.5% Free T - Range: 1.6-2.9%] as well as the high LH and FSH, I was diagnosed with Primary Hypogonadism.

CURRENT PROTOCOL: 200mg/wk split in two, 1mg of Adex split in four, and 250iu hCG EOD. I started at 100mg/wk but progressively raised the dose (25mg bumps after a few weeks of trying the previous dose) to address the symptoms that hadn’t gone away. There was a brief period after I got my dosing dialed-in where I felt GREAT, slept really well even without medication(!) something that hadn’t happened for years, and was actually able to be really active again - lifting weights and doing lots of yard-work - for the first time in years.

So basically I felt what I assume would be considered “normal” for about three months before I started having progressively more and more “down” days in terms of energy/fatigue. Since then I have been testing anything and everything and haven’t been able to figure this out.

CURRENT SYMPTOMS: Fatigue/Exhaustion/Always Tired or “Drained”; Weakness; Sleep Problems: Trouble Falling Asleep, Trouble Staying Asleep, Waking Up Un-Refreshed, Impossible To Sleep Without Melatonin/Other Sleep Aides, Always Tired But Can’t Rest; Fat Storage Entirely Around Midsection (“Love Handles” Again!); Mood Issues**: Irritability, Depression, Anxiety, Over-Reacting to Upsetting Situations, Lack of Motivation, and Difficulty Coping with Stressors; Sex Drive Has Taken a Hit; Cold Feet (have to wear socks all the time!) and Sometimes Cold Hands; Sensitivity to Heat (but that’s always been there - I have, as long as I can recall, hated hot weather/not having AC); Eyes Have Sensitivity to Sun Light (possibly brought about via concussion** 11 years ago when I was hit by a drunk driver and I have light-colored eyes which doesn’t help either); Hypertension: BP is consistently higher than 140/95 even though I am on Cozaar; And, most annoying of all TACHYCARDIA! My heart-rate is consistently over 100bpm, even in the morning.

For several weeks I reduced my T dose to 120mg/wk (60mg x 2) to see if that would change any of the sleep or anxiety issues, but it didn’t and, even though I am insanely fatigued at this point, bringing my dose down made it to where I was even worse off, and didn’t even have the energy to shower or cook.

  • I have been taking my fasting and post-meal blood-glucose levels several times the last several months (father-in-law has a meter) and they always come back fine: Fasting (first thing in the AM) is usually in the low 80s and post-meal depends on the food I ate, but it never goes anywhere near the 140-150 mark.
    ** I have had depression/anxiety problems since mid-teens and benzodiazepines, though they used to work really well, don’t do ANYTHING these past few months. My current anti-depressant doesn’t seem to be working either, but the depression I feel now is far different that the depression that got me on the medication in the first place.
    *** Several brain images (CT/MRI) have been taken since, and there was/is no damage. I have also had an MRI as recent as 2 years ago that found no lingering trauma, or tumors for that matter - It was done as part of a screening process for a clinical trial I was participating in, so they make sure there’s nothing wrong before the trial starts that could skew the data.

I have had the following tests and procedures over the past few months to try and get to the bottom of this (I’ll post full labs below, this is just the synopsis):

  1. Sleep Study - Came back normal; No Apnea, no Hypopnea, very minor snoring, just that I am on the low end of time spent in REM sleep and that I spent most of my sleeping time in the higher stages. I have been a life-long light sleeper: I have tried every sleep medication (on and off label) as well as every herbal/OTC sleep aid on the market to try and help my sleep. Melatonin and Benadryl are the only things that will help me “sleep”; I fall asleep, sometimes stay asleep, but don’t wake up rested, and usually groggy from the drugs.

  2. Ferritin levels were on the low side, but in range, so I had an Iron Infusion done two months ago. Follow-Up level-check in a month.

  3. Vitamin D was at 17, but now is 66.

  4. B12 injection just for the hell of it

  5. Several Labs (see below)

  6. I was prescribed Adderall before I found out I had low T to address the fatigue issue. I stopped taking it for those few months I was feeling great, started taking it here-and0there as the fatigue got worse, and started taking it again almost every day when the fatigue was at it’s worst again. Only this time it doesn’t work like it used to. I used to be able to take it and get a lot of physical stuff done, but all it does for me now is kill my appetite and gives a minor boost. Given such little benefit, I rarely take it any more.

  1. I did a digestive support/cleanse with probiotics, digestive enzymes, CoQ10, Glutamine, and a few other things.

Recent labs:

Cortisol labs have been really odd but my doc thinks I’m fine despite some evidence to the contrary (Taken Over The Last 3 Weeks).

24hr Saliva Cortisol Results (Pharmasan Labs):
(8/31/12)
Wake Up 10:27am: 3.9ng/mL (7.0-10.0)
Test 2 3:17pm: 0.9ng/mL (3.0-6.0)
Test 3 8:39pm: 1.0ng/mL (2.0-4.0)
Test 4 1:19am: 1.3ng/mL (<1.5)

This followed my normal daily wake/sleep cycle.

Also in this Saliva test was DHEA 180.6pg/mL (63.0-644.0). My DHEA blood test taken on 6/21/12 was 308ng/dL (61-1636). Not sure how Saliva test compares to blood test for this. An important note: This testing was administered from a mail-in lab called Pharmasan Labs, and I know nothing about them aside from the fact that they are the kind of lab that does urine neurotransmitter testing (whose science is questionable), and after your labs are taken they recommend Supplement Blends that “correct” your problems. This kind of makes me wonder how legit their testing procedures are: I’m always skeptical of places who test AND offer stuff to buy based on results.

24hr Urine (Quest Labs):
(9/10/12)
Total Volume: 1856mL
Cortisol, Urine: 7.0mcg (4.0-50.0)
Creatine, Urine: 2.32g (.63-2.50)

Cortisol Blood-work (Quest Labs):
(9/10/12)
Plasma ACTH: 30pg/mL (6-50)
Serum Cortisol 8am: 21.9 mcg/dL (2.0-22.0)

So basically two of those tests show I’m Cortisol insufficient, and three say I’m fine. My doctor said that the blood work is the “gold standard” (which I feel Saliva is much more useful information) and that the saliva and urine tests should basically be ignored (I disagreed and he didn’t care =/). I don’t know what to make of this, and whether he’s right to think that everything is fine with my adrenals.

THIS IS WHAT I WOULD LIKE TO GET THE MOST INPUT ON

Assuming there’s actually something going on in there that should warrant further investigation. I wanted to do the ACTH Stim test, but: 1) My insurance won’t cover the prescription. One of the doctors at the clinic gave me a prescription for it ahead of time in case my doc wanted to do the test at the appointment I had today, which leads to: 2) My doctor doesn’t feel my test results warrant further investigation - he feels everything is fine.

[You can ignore this paragraph if you want because I’m just going to be bitching and there’s nothing really about my health or labs: I’m really pissed that I have symptoms that are confirmed by the Saliva test and kind of by the Urine test, but because three tests say otherwise he says, “Everything is fine”, ignoring the fact that I have SYMPTOMS of something! On top of that, when I asked “So then how do we explain my symptoms? Where do we go from here?” To which he responded, “If you disagree with my diagnosis you’re more than welcome to see another doctor”.

I said, “I don’t necessarily disagree with your assessment, but you aren’t offering any solutions, just saying ‘your labs are fine, therefore there’s nothing wrong’”. It’s really odd because he used to be a great doctor for TRT [Diabetic Specialist though], and I figured he would at least offer some sort of game-plan for further testing of SOMETHING, instead of saying ‘labs are fine, so nothing’s wrong’. He’s the only doctor I’ve seen that doses testosterone based mostly on symptoms and has no problem increasing doses if it will help the symptoms and not make your labs too crazy! He’s retiring soon, so I think he has one foot out the door and doesn’t give a fuck anymore.]

Here are my other labs from the past several months (dates in parentheses), going from most current (the Adrenal tests listed above), all the way back to the labs taken after starting TRT, but just as the fatigue problem came back. All Labs are either Quest, or a Local Lab chain.

(07/17/12)
CBC and Testicular Cancer Markers, all of which came back clear (so I won’t waste either of our time by typing it all out, unless you all feel it would be helpful) aside from RDW that was slightly above range, which my Oncologist felt was probably caused by my Iron Deficiency. This led me to get the Iron Infusion. Follow-Up on this is scheduled for next month.

(06/11/12)
Pregnenolone: 62ng/dL (13-208)
Vit-D, 25-OH: 66ng/mL (30-100)
DHEA: 308ng/dL (61-1636) [Not the DHEA-S test as the Sticky recommends. Not sure why I did it this way]
Ferritin: 21ng/mL (20-345) [Taken Before Iron Infusion]
Estradiol: 22pg/mL (<39)
Progesterone: 0.5ng/mL (<1.4)
Vitamin B12: 653pg/mL (200-1100) [Taken Before B12 injection]
PSA: 0.7ng/mL (<4.0)

(04/16/12)
Free T3: 4.3pg/mL (2.3-4.2)
Free T4: 1.5ng/dL (.8-1.8)
Total T3: 142ng/dL (76-181)
TSH: 1.79mIU/L (.4-4.50)
Estradiol: 21pg/mL (<39) [This was first lab after starting Adex]
Total T: 1425ng/dL (250-1200) [Taken around Peak - Couldn’t work time-frame to get it done at Trough. Usual Trough is ~1000ng/dL]
Free T: 361.5pg/mL (47-244) [See above note]

(4/02/12)
Estradiol: 31pg/mL (<39) [Started Adex after this]
Total T: 937ng/dL (250-1200)
Free T: 262.8pg/mL (47-244)

(03/16/12)
Vit-D, 25-OH: 41ng/mL (30-100) [First Follow-Up on previous low Vit-D levels]
Total T: 1179ng/dL (250-1200)
Free T: 310pg/mL (47-244)
SHBG: 21nmol/L (11-80) [Down From 12/08/11 @ 48nmol/L from before I started TRT. Is this bad?]

So before the above rounds of testing occurred, I was feeling really good; I slept well (felt refreshed after 5-6 hours a night rest), had plenty of energy to actually start exercising for the first time in years, was losing fat and gaining muscle, and discovered that I must have had a low sex drive, because after starting TRT I remembered what it was like to have a teen-ager’s sex-drive!

Here is a random sampling of tests that may be helpful:

(01/28/12 - about 1 month after starting TRT)
Thyroid:
TSH: 1.94uIU/mL (.34-3.5)
Free T4: 1.0ng/dL (.5-1.6)
Total T3: 157ng/dL (87-178)
Free T3: 3.7pg/mL (2.5-3.9)
Thyroid Antibodies:
ThyglbAb: 27U/mL (0-59)
TPO Ab: 37U/mL (0-59)

(01/14/12)
Cortisol 8am: 14.2ug/dL (5-25)

(12/08/11)
Free T4: 1.1ng/dL (.5-1.6)
TSH: 2.48uIU/mL (.34-3.5)

Thanks for wading through all that! I’m basically at the end of my rope, and have no idea where to go from here. I have had several CBC’s done over these months that have all come back clear, but if the info will help I can post them as well.

If I ignored all of my labs and just made a diagnosis based on symptoms I would say my Thyroid is acting up. My labs, unfortunately, beg to differ. So then I moved on to Adrenal issues which labs have caught a glimpse of something, but apparently not enough to warrant any sort of treatment, at least according to my doctor. Adrenal and Thyroid symptoms seems to have a lot of over-lap and that is why I feel it’s one of the two that is causing my troubles.

I would really appreciate some input on where to do from here. Part of me wants to do a trial-run on Thyroid meds to see if they do the trick, but I think that side of me is just the desperate side who is sick and tired of being so fatigued all the time that he will do just about anything to get rid of it. I also don’t have the slightest clue about how to get a hold of the stuff, so there’s that problem too.

I don’t want to jump to drastic measures if I don’t have to, and so I turn this over to you, in hopes that someone out there can see something that doesn’t look right and that warrants further investigation.

Thank you all for your time.

[ctastrophe]

2

Hey man - I feel for you.
I have never read a post that sounds so much like my situation.
I am interested in the feedback you get.

What is your height/weight? Exercize?
What do you do for work?

3

I might have missed it at some point in that research paper you wrote but…

  1. How much (in hours) sleep do you get a night? Have you considered your sleep patterns?
  2. How many hours a day are you exercising and what type of exercise?
  3. What does your diet look like? (are you eating IF or are you eating small meals regularly to keep insulin levels regulated etc.)
  4. In all serious how boring is your day job? Seriously. When I’m bored at work I tend to feel fatigued all the time. Get busy and suddenly I’m motoring.
  5. How fatigued are you that you think feeling tired is a problem? I’m tired at the end of a long day of work and want to have a nap when I get home, doesn’t mean I have a thyroid/adrenal issue. Now if you’re falling asleep at your desk every 5 mins or you can’t drive somewhere maybe its a problem.
  6. And inability to gain muscle/lose weight seems like a programming issue to me. Especially if they Rx’ed you T.

And as for what you feel you want the most input on I would go with option 2. Seeing as how you probably aren’t a medical professional (and neither am I) your other option are to take your medical file to another doctor - but that doesn’t mean your new Doc isn’t going to Rx you all kinds of crap and comepletely mess you up in the long run.

4

Ha! You call it a “research paper” and then ask me more questions! (Just poking fun - hard to tell tone on the internet sometimes.) I do tend to write a lot (on most posts I include a Table of Contents and an Appendix), mostly because I don’t want to miss any piece of information that may be helpful, though it looks like I missed a few things.

(BTW I had to re-read your list about 100 times to make sure I’m not crazy. Did you miss adding item #6?)

I’m unemployed and have been for a while. Yes, I am bored a lot of the time, but it’s not for lack of wanting to do things. I thought that boredom could be a factor, but based on how things were before this round of issues, as well as my inability to even get really excited about anything, I’ve sort of ruled out boredom as the cause of my problems. (I’ve tried getting involved in things I used to like, but it doesn’t work out.) I have a hard time forcing myself to sit down and read a book (something I used to really enjoy), and I turn down offers to go out and do stuff just because I know it’s going to be too difficult and I will likely ruin everyone’s evening by wanting to leave early. I really like to read and write (in case that wasn’t obvious), but aside from forum posting I can’t seem to get the drive and focus to work on any of the projects that I’ve had lingering for months/years.

The lack of muscle-building was before I started TRT - I’ve since had no issues in that department. The problem now is more that I store ALL my fat around my saddle-bags, there is no distribution anywhere else.

I am 6’0" and weigh 191lbs, up from 183 three months ago. I’m about 35" around the belly-button, but that is where all the fat is. If you looked at me from my upper-abs and up you’d think I weigh 160!

The exercise/diet thing is probably going to spur a ton of arguing, and I’d like to avoid such arguing if possible. When I was feeling great I was exercising and/or doing physical labor around the house at least 3-8 hours a day, with my gym schedule being about 1-2 hours 5 days a week. My diet was stellar: 5-7 small meals spread every 3-4 hours following approximately 40/40/20 pro/carbs/fat ratio. As I had less and less energy I started being physical less and less since I just didn’t have it in me to keep up what I was doing. I kept the diet up for several weeks after I started having the debilitating fatigue I have now, but I honestly just eat mostly-healthy “easy” food nowadays. The fact that I’ve gained such little weight over the last few months should be a testament to how not-shitty I eat.

I don’t think the fatigue is caused by my diet and exercise (lack-of-)program for two reasons: 1) I didn’t have a diet/exercise program in place when I started feeling good, and for the first few weeks of the “good times” I continued eating less-than-healthy stuff. I was really amazed how getting your testosterone in check can help you gain muscle even though you eat pizza and Chinese food. 2) I started having severe fatigue issues even while I was dieting and exercising properly. This, of course, is the easiest thing to jump on, but I “know” it isn’t the issue. I’ve tried re-starting exercising a few times and it is just too hard.

My sleep has always (since late teens) been shitty - but I haven’t always had fatigue problems. Right now I sleep anywhere from 7 to 10 hours when I take medication (mostly melatonin), and if I don’t, I sleep MAYBE 4-5 disrupted hours if at all. I have gone multiple days where I don’t sleep at all - three day periods that usually culminate in me getting about 6 hours of “natural” sleep.

I am so fatigued that, if I could, I would sleep almost all the time. The difference between me and narcoleptics is that they have the ability to actually sleep - an activity I can only achieve through the magic of modern chemistry.

I fixed the language in the first post. What I meant to say was the part I want the most “INPUT ON” is the entire paragraph above where that is said. I want input from someone who knows a lot about Cortisol labs and can chime in on WHY my Saliva and Urine is low, but my blood tests were normal, and if this warrants further investigation (labs, etc.).

Thank you both for your responses! Hopefully I and Joey B can get some clues as to why we both have this shitty problem!

5

I wish I could help you. Reading your post was like looking in the mirror. I thought you were telling my story, at first. Only difference is, I’m just starting TRT now (been on for about 12 days). I’m still waiting to see if that is my issues. You can see lab work and history about me if you like, look for the thread “advice on lab results” Likes yours, it’s gotten so big no one really looks at it anymore.

I will say perhaps it’s worth doing a saliva test again and try to get your samples in at better times. 8am, 12pm, 5pm, 10pm, or something close to that. I know that might be your schedule, but your body is doing other wise.

Have you tried Wilsons formula? It is very over priced, and you could probably find the same stuff at a vitamin store. Another to try is Isocort. It’s similar to Cortef, and it’s said to have trace amounts in it.

Now, I cannot speak for how great this stuff works, because when I was suspecting adrenal issues I was on wilsons for over a year, as well as did isocort for 2 months, then finally cortef trials. I felt nothing… zero… ZIP!

Sleep issues are a bitch, but could also be from what is causing your fatigue in the first place. You seem to have your diet down par. Your sleep could perhaps help you out. Has your doctor been willing to try something like Ambien or Lunesta? I have been on both, and Lunesta is far better. I don’t feel hungover the next morning, nor did I ever remember falling asleep. Take this med as you’re going to bed and you will sleep through the night (3mgs)

Good luck and keep us updated. I read through these on a daily basis.

6

If you think there is any infection/ immune involvement this link will help you.
https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0

7

I’m no expert in TRT, but this all sounds more like depression to me.

8

Thanks Beefcake627! I have literally been on every sleep medication known to man, both off-label and on-label, and every “natural” remedy as well. The consensus is that it puts me out, but I don’t get the deep, restful, sleep. I’m at a point where it’s better to be out for a few hours and wake up feeling less-than perfect, than not sleeping at all and feeling less-than perfect. I don’t necessarily think my sleep problems are causing this because I have had them my who life but haven’t had fatigue issues until lately. Also, when my fatigue problems started happening again I was sleeping really well (the TRT initially helped me get really restful sleep).

I ordered some Isocort. If it does anything for me then I know it’s my adrenals that are the culprit, and I can report back to my doctor that he needs to reassess his findings. I think I’m either sub-clinical hypoadrenal, or based on all my symptoms sub-clinical hypothyroid.

I was hoping someone who knows their adrenal stuff could chime in and explain why my cortisol labs came out the way they did.

“I’m no expert in TRT, but this all sounds more like depression to me.”

It sounds like it, but it isn’t it. I have had clinical depression, to the point where I have actually participated in out-patient and in-patient studies on depression for prestigious institutions. Although it has all the hallmarks of depression, it isn’t the same. I know the difference between when I’m feeling shitty (like now) and the way I feel when it’s my depression rearing up again, and that isn’t this time.

9

I would say you need to get your reverse T3 checked. Adrenal fatigue leads to elevated rT3, which can lead to hypothyroid even if your FT3 and FT4 numbers look good. I have been taking a B complex, vitamin c, vitamin D, multivitamin with minerals, and a supplement called Cytozyme AD in an attempt to boost my adrenals.

A month after I started that my doctor thought my adrenals were probably good enough at that point to start T3 only to help lower my high reverse T3. Between all of that and getting my Test levels up I feel much better. I was exhausted, slept like shit, and any time a stressful event would come up I would have huge adrenalin dumps with my heart racing leading me to feeling wiped out.

Now I have a lot of energy, sleep better, and am much better able to handle stress. I’m still a work in progress but at least for me my doctor seems to have me on the right track. Also, I have cut way back on simple carbs, and every 3 hours I have some complex carbs with a little protein and that seems to help my energy throughout the day.

10

Well, I’m not an expert with adrenals, but I’ve researched the shit out of it… lol!

Isocort is one of the best out there, but start low (if you have done your research on this, then you already know that).

I don’t see anywhere on here that you have charted your temps (unless i missed that). If you have no, start this PRIOR to doing isocort. Purchase a glass thermometer from a local drug store. Shake it down before bed, and take your readings right when you wake (without moving). Place under the arm for 7-8 minutes, then review. Try to remain still.

Next, take the thermo with you to work. Do another reading 3 hours after you wake, 3 hours after that one, then 3 hours after that one. So, if you wake at 9am, take a reading at Noon, 3pm, and 6pm. Add those up, then divide by 3. This will give you your daily average. Do NOT include your morning basal reading. This is just for your Thyroid.

Chart the 3’a day for 5 days. This will let you know how weak/healthy your adrenals are. Healthy adrenals will be around 98.2-98.6 for the daily average. Anything less, and you could have an adrenal issue.

There are some other supplements you should be one with adrenal issues. My advice is to look up what Dr. Bruce Rind recommends, and or Dr. James Wilson. Both have their stuff out there on the web, but don’t bother purchasing it from them. Too damn expensive and it can be found cheaper and in mass quantity at local GNC/health food store.