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Author Topic: My Story (A Doozy)  (Read 6480 times)

Kierkegaard

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My Story (A Doozy)
« on: April 10, 2014, 12:19:06 am »
This is a bit of a mess, but I know you'll all find this all interesting (so get comfortable).  :)

I'm a 30-year-old guy who was in great health, lifted weights 2-3 times a week, ran two other days per week, ate relatively well, and took his fish oil religiously.  In late 2012 I got a comprehensive metabolic panel just for kicks; I have a family history of health problems (confounded by a family history of bad nutrition and lifestyle), and wanted to make sure there wasn't anything under the surface.  I get the results back and everything (glucose, triglycerides, cholesterol, etc.) looks good, except a TSH of 4.9.  The nurse practitioner asks if I had ever experienced fatigue; I could only respond by saying a fish doesn't really know it's wet, i.e., I've experienced some degree of fatigue all of my adult life, if not my childhood as well -- always problems with sleeping too much and not feeling refreshed, always problems with waking up, and likely had dysthymia (moderate depression) in college.  So the doctor prescribes 50 mcg of levothyroxine (based on a single TSH reading of 4.9 and no testing of free T3 or free T4), which I start in late November 2012. 

I really seemed to be feeling better, but looking back, there's a big chance that it was placebo.  Things truck along until August 2013, when I have a relatively big stressor for a few weeks and my anxiety goes absolutely through the roof when I'm alone to think about things, and with it insomnia -- like, "I don't know if I slept for sure, but it looks like some time passed, so I guess I did" insomnia.  So I go to a new doc, who says to get off the levo (he said he doesn't advise putting people on thyroid meds until their TSH is at least 10), and kicks me some Ambien for sleep.  Here was the weird part: after two weeks or so of tapering off I felt this godawful, debilitating fatigue (tapering from 50 mcgs to 25 to 12.5 to 0), which lasted for two long months.  The fatigue was especially bad after lunch until around 4pm, and got so bad that I had to reschedule a client mid-session (I'm a counselor), call my wife to pick me up and take me home, and was extremely close to going to the ER.

So the doc orders a lot of tests -- CBC, CMP, sedimentation, a few others.  I remember the experience of reading these 20 or so tests and being amazed that everything snugly fit within the different ranges, except for my free T4, which was at the not-so-shocking level of 1.73 (cutoff 1.70), influenced by the exogenous thyroid hormone still running through my blood.  At this time I was down to 25 mcgs of levothyroxine, and my doc said that the elevated FT4 was "likely causing a lot of your insomnia," and advises me to continue my taper.  So I stay with the taper, things remain bad with the fatigue but somewhat manageable, and after two months or so I start feeling relatively normal.  Meanwhile the doc starts talking of chronic fatigue, and writes a prescription for fluoxetine, which I didn't take at the time.  Strange note about the fatigue: I was getting into meditation and Yoga at the time, and noticed that when I was feeling pretty stressed after work and felt the fatigue, it would greatly diminish when I did a quick set of stretches and mindful breathing.

So then I decide to send an anonymous death threat to my first doctor via email, which I accessed from my university in town to prevent IP detection.  Actually, that didn't happen at all, and hopefully that's a rewarding jolt of adrenaline for being a diligent reader so far.

So.  Things go well for a month: I'm sleeping a lot better, gave up the Ambien, but *still* feeling a bit of that strange fatigue lingering around, which I shrugged off at the time.  In early January I remember the exact stressor that triggered my insomnia again (because I wrote about it for some strange reason): my wife started an internship and had to get up at 6:30am from now on, and I remembered feeling a bit of anxiety about falling asleep and having to wake up an hour earlier the following mornings.  So the insomnia comes back, I put up with it for a week, go back to my doctor, get more Ambien, and I start waking up at 4am at the drop of a hat.  I can't expressed how strange it was to wake up in darkness and scramble for my phone to find 4am plus or minus 5-10 minutes each and every time.  I eventually get to a conference in February and the fatigue comes back with a vengeance, this time hitting me all day long

God, the fatigue was awful.  It felt a bit like being lightheaded, at the worst times feeling like I would pass out (which I've never done before), almost like depersonalization -- as if my body was just mechanically functioning while I thinned out to the point of near nonexistence.  Add to this terrible, uncontrollable anxiety, and I mean uncontrollable when I say it: cognitive restructuring, controlled breathing, progressive muscle relaxation, mindfulness, meditation, Yoga -- absolutely nothing would moderate this anxiety.  The feeling of helplessness was probably the worst part.  Actually, this might be the worst part: I had an uncontrollable focus on my heart when I would try to nap during the day, and just at the moment when I would drift off to sleep my body would snap awake, as if I were being surged with adrenaline. 

I finally gave in and set up an appointment with my doctor to talk about getting on fluoxetine, especially since I was talking so much about anxiety, and it's a symptom of depression to have early morning awakenings.  The fluoxetine was a big mistake.  Everything got worse, and it didn't help at all that norfluoxetine (the active metabolite in fluoxetine) has a half life of eight freaking days.  I got depressed to the point of serious suicidal thoughts.  What really freaked me out (aside from the "shocking" feeling when trying to nap) was the memory and cognition problems.  I began to forget everything, and reading became impossible, which killed me.  I pushed through (God knows how), and even after getting seven hours of sleep a night for a week (with the help of Ambien CR), I didn't feel any better.  My weight dropped from an already low 163 to 158.  I remember going *back* to the same doctor (by now you should know how messed up my thinking was), and what does he do?  Gives me another SSRI, Lexapro, and a 20 day supply of Klonopin, the latter I tried for a few days (for fear of dependence), the former I didn't try at all -- too much of a risk making my insomnia worse with another SSRI.  Another weird note: the few times I tried Klonopin, I started feeling *less* fatigued, and was even able to stay up later than I planned on.

So my mom (who works at a hospital) tells me about a doctor that "all" of her patients recommended, and I set up an appointment, dragging my wife with me because I was unable at the time to carry a conversation competently.  He runs (finally!) extensive testing of my thyroid, as well as other stuff my previous doctor didn't run a few months before, including ferritin, B12, and (aha) total testosterone. 

We really had our hopes on the thyroid being out of whack, given how the symptoms lined up so well with hypothyroidism.  But no, my thyroid results had to come back perfectly in range.  But!  My total testosterone came back at 158, with bottom of the barrel (but still barely within range) readings for LH and FSH (I had an MRI and there were no pituitary problems).  All I heard was "low", but only later did I realize after reading a study that something like 250 makes you within the 1st percentile for a sample from all ages!  Summarizing my symptoms: brain fog, memory problems, dead libido, intense fatigue, intense insomnia, anxiety, depression, a few other things I'm forgetting (see brain fog, memory problems). 

Doc puts me on testosterone cypionate, 200 mg every two weeks, and 75 mg of Wellbutrin two times a day (which is actually a pretty small dose).  Tomorrow will be my third shot, and so far there's clearly a change, but there's a long way to go.  The fatigue has a much smaller window and feels lighter overall, I'm sleeping less terribly, anxiety and depression are a fifth of what they were, I'm able to carry a conversation pretty well, can read, am able to take daytime naps (no "shocked awake" feeling), have a functioning libido, more energy and interest in pleasurable activities.  My weight is up to around 173, and I'm able to lift as much and even a little more than I could before with a few noticeable changes.  The only bad news is that I'm on the verge with my family medical leave time, and I like my job very much.  The good news is I finally have something to hang my hat on, and hopefully something that explains my fatigue when I was younger as well.  I really don't give a shit what happens externally anymore, and just want to keep getting better. 

Anyways.  There were a few tests that none of my doctors took: estradiol, cortisol, prolactin, SHBG.  My newest doc (who I like very much) was reluctant to run estradiol because, to him, my light weight meant it was likely fine.  Whatever, he's a primary, I'll take what I can get, and I know I can squeeze at least an estradiol test out of him if my blood tests for free and total testosterone and a CMP come back awry. 

That's all.  Feel free to ask or state anything.  It's good just getting this off my chest.  This site has been a godsend in terms of information and support.  One question: any thoughts on the tapering off levothyroxine bit with extreme fatigue?  Could that have been related to (undiagnosed) low testosterone at the time, and/or some sort of hormonal reaction in coming off levothyroxine?
"The same thing that makes you live can kill you in the end." -- Neil Young

March 2014: Dx low T (158ng/dl)
September 2015: Dx hypothyroidism, other adrenal hypofunction
2016: chronic fatigue, unspecified

Depression and anxiety guide: http://www.peaktestosterone.com/Help_Anxiety_Depression

PeakT

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Re: My Story (A Doozy)
« Reply #1 on: April 10, 2014, 06:08:07 am »
Sorry to be slow to respond:  it was man versus nature in our house tonight - an infestation of carpenter ants.

I am not the least bit surprised by your story as you might well imagine (if you've read mine).  I went through dozens of theories trying to feel better with very minimal results.  And, as you may know, I also experienced tons of anxiety in various forms, chronic dysthymia, mental fog, poor sleep and on and on.  Suffice it to say, I can relate to a lot of things that you wrote.  And, of course, it is very difficult, because it's not like you have an arrow sticking out of your back or a bullet hole in your quad so that someone will definitely have sympathy for you.  Basically, you just feel lousy and can't think straight and you have to limp through life as best you can.

And, by the way, this is what I find to be so cruel about the anti-HRT response of the endocrinology societies in the last few years.  We're not doing this for sexual enhancement or to be the next Arnold - we're just trying to survive day-to-day life and have a libido and be able to think straight at our job and sleep through the night and have a relationship and occasionally have sex.  Is that too much to ask all you endos out there?

Anyway, I'm glad you finally found the answer.  Here are some pages that you'll (I believe) find helpful:

--Other tests that you may want to discuss with your doc:

http://www.peaktestosterone.com/testosterone_tests

--Here are labs where you can pull almost any test you can think of and for a reasonable price:

http://www.peaktestosterone.com/testosterone_labs

--I really enjoy HRT.  But I would still never tell you that it is not without risks.  Here are some that I have come across that docs either do not know or do not discuss with you:

http://www.peaktestosterone.com/testosterone_risks
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Peak Testosterone Forum

Re: My Story (A Doozy)
« Reply #1 on: April 10, 2014, 06:08:07 am »


Regulus

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Re: My Story (A Doozy)
« Reply #2 on: April 10, 2014, 11:56:20 am »
Kierkegaard,

Wow your symptoms sound familiar.   I dealt with similar stuff for decades.

Something tells me your user name is a hat tip to the emotional states you were struggling with?   :-)

It gets better. 

Late 40's, on TRT since 2011.
Test cyp 50 mg twice per week
Vegan and loving it since late 2015

Kierkegaard

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Re: My Story (A Doozy)
« Reply #3 on: April 10, 2014, 01:38:36 pm »
Kierkegaard,

Wow your symptoms sound familiar.   I dealt with similar stuff for decades.

Something tells me your user name is a hat tip to the emotional states you were struggling with?   :-)

It gets better.

:)

I love me some Kierkegaard, even though I only understand about a third of what he says (way up from about a tenth when I started reading him ten years ago).  All through this terrible experience his statement, "I suffered indescribably during this period" (when he broke off his engagement with his gal Regine Olsen) kept flashing through my mind.  Also his quote, "I'm so misunderstood that people misunderstand me when I tell them I'm misunderstood" -- that's a huge one.  To this day I know I haven't expressed half of the suffering involved with this shit, because all the words I use are classified away by my recepients as not too bad: "oh, you have insomnia?  Try warm milk and relaxing music," or "it's fatigue?  Hm." 

Thanks for your support.
"The same thing that makes you live can kill you in the end." -- Neil Young

March 2014: Dx low T (158ng/dl)
September 2015: Dx hypothyroidism, other adrenal hypofunction
2016: chronic fatigue, unspecified

Depression and anxiety guide: http://www.peaktestosterone.com/Help_Anxiety_Depression

Peak Testosterone Forum

Re: My Story (A Doozy)
« Reply #3 on: April 10, 2014, 01:38:36 pm »


Kierkegaard

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Re: My Story (A Doozy)
« Reply #4 on: April 10, 2014, 07:24:47 pm »
Sorry to be slow to respond:  it was man versus nature in our house tonight - an infestation of carpenter ants.

I am not the least bit surprised by your story as you might well imagine (if you've read mine).  I went through dozens of theories trying to feel better with very minimal results.  And, as you may know, I also experienced tons of anxiety in various forms, chronic dysthymia, mental fog, poor sleep and on and on.  Suffice it to say, I can relate to a lot of things that you wrote.  And, of course, it is very difficult, because it's not like you have an arrow sticking out of your back or a bullet hole in your quad so that someone will definitely have sympathy for you.  Basically, you just feel lousy and can't think straight and you have to limp through life as best you can.

And, by the way, this is what I find to be so cruel about the anti-HRT response of the endocrinology societies in the last few years.  We're not doing this for sexual enhancement or to be the next Arnold - we're just trying to survive day-to-day life and have a libido and be able to think straight at our job and sleep through the night and have a relationship and occasionally have sex.  Is that too much to ask all you endos out there?

Anyway, I'm glad you finally found the answer.  Here are some pages that you'll (I believe) find helpful:

--Other tests that you may want to discuss with your doc:

http://www.peaktestosterone.com/testosterone_tests

--Here are labs where you can pull almost any test you can think of and for a reasonable price:

http://www.peaktestosterone.com/testosterone_labs

--I really enjoy HRT.  But I would still never tell you that it is not without risks.  Here are some that I have come across that docs either do not know or do not discuss with you:

http://www.peaktestosterone.com/testosterone_risks

Thanks for these.  For me, I felt so much like death -- or wanting to die -- that these risks are minimal.  Thankfully my red blood cell count and hematocrit are in the middle-lower ranges, so we'll see how that ends up.

How long was it after starting TRT that your sleep got better, Peak?
"The same thing that makes you live can kill you in the end." -- Neil Young

March 2014: Dx low T (158ng/dl)
September 2015: Dx hypothyroidism, other adrenal hypofunction
2016: chronic fatigue, unspecified

Depression and anxiety guide: http://www.peaktestosterone.com/Help_Anxiety_Depression

PeakT

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Re: My Story (A Doozy)
« Reply #5 on: April 10, 2014, 07:30:05 pm »
How long was it after starting TRT that your sleep got better, Peak?

Well, I'm not the best one to ask, because originally I tried a Low Fat Diet, which helped me, and my urologist put me on a compounded cream which got me up to the upper 400's.  The combo of those two helped me quite a bit - maybe 50% or two thirds.  Cypionate, when I went on that, had powerful brain effects and vanishes everything almost overnight for me.  No exagerration:  sleep up, anxiety and the "blues" down, libido up, etc.  Not everyone is like that though...
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Kierkegaard

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Re: My Story (A Doozy)
« Reply #6 on: April 10, 2014, 07:49:06 pm »
How long was it after starting TRT that your sleep got better, Peak?

Well, I'm not the best one to ask, because originally I tried a Low Fat Diet, which helped me, and my urologist put me on a compounded cream which got me up to the upper 400's.  The combo of those two helped me quite a bit - maybe 50% or two thirds.  Cypionate, when I went on that, had powerful brain effects and vanishes everything almost overnight for me.  No exagerration:  sleep up, anxiety and the "blues" down, libido up, etc.  Not everyone is like that though...

So I've read.  A few folks actually have insomnia as a result of TRT around injection days. 

I know that for me I was doing everything I could for insomnia except sleep restriction (which was too painful for me at the time to really try): stimulus control, sleep hygiene, exercise, eating well.  Because my weight was so low (which was probably due somewhat to the fluoxetine, somewhat to depression), I had to pretty much eat like crap for about a month to six weeks to get my weight up. 

I'm just hoping that the insomnia (anxiety-related or not) and the fatigue have always been explainable to a testosterone deficiency.  We'll see, and overall sleep has appeared better, but still nothing like it was before all this started. 
"The same thing that makes you live can kill you in the end." -- Neil Young

March 2014: Dx low T (158ng/dl)
September 2015: Dx hypothyroidism, other adrenal hypofunction
2016: chronic fatigue, unspecified

Depression and anxiety guide: http://www.peaktestosterone.com/Help_Anxiety_Depression

PeakT

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Re: My Story (A Doozy)
« Reply #7 on: April 10, 2014, 11:07:18 pm »

So I've read.  A few folks actually have insomnia as a result of TRT around injection days. 

I know that for me I was doing everything I could for insomnia except sleep restriction (which was too painful for me at the time to really try): stimulus control, sleep hygiene, exercise, eating well.  Because my weight was so low (which was probably due somewhat to the fluoxetine, somewhat to depression), I had to pretty much eat like crap for about a month to six weeks to get my weight up. 

I'm just hoping that the insomnia (anxiety-related or not) and the fatigue have always been explainable to a testosterone deficiency.  We'll see, and overall sleep has appeared better, but still nothing like it was before all this started.

Unfortunately, you can't know for sure.  A good doc with a lot of experience can probably give you a rough estimate for your situation, but the key is "good doc".
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Regulus

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Re: My Story (A Doozy)
« Reply #8 on: April 11, 2014, 03:28:34 am »
I can very much relate.   I for years struggled with worsening depression, anxiety, and a general feeling of just not belonging in the world (don't know how better to describe it).   I really reached a point where I just didn't want to talk to anybody any more.   I just felt that not only did no one understand or have any interest in anything I had to say, I didn't think anybody could even understand what I was talking about. 

Cannot even begin to describe how much getting my T in line changed that.  Don't know if that will be everything for you.   But it sure was for me.   

I (seriously) think that Kierkegaard was very low T. 

Kierkegaard,

Wow your symptoms sound familiar.   I dealt with similar stuff for decades.

Something tells me your user name is a hat tip to the emotional states you were struggling with?   :-)

It gets better.

:)

I love me some Kierkegaard, even though I only understand about a third of what he says (way up from about a tenth when I started reading him ten years ago).  All through this terrible experience his statement, "I suffered indescribably during this period" (when he broke off his engagement with his gal Regine Olsen) kept flashing through my mind.  Also his quote, "I'm so misunderstood that people misunderstand me when I tell them I'm misunderstood" -- that's a huge one.  To this day I know I haven't expressed half of the suffering involved with this shit, because all the words I use are classified away by my recepients as not too bad: "oh, you have insomnia?  Try warm milk and relaxing music," or "it's fatigue?  Hm." 

Thanks for your support.
Late 40's, on TRT since 2011.
Test cyp 50 mg twice per week
Vegan and loving it since late 2015

PeakT

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Re: My Story (A Doozy)
« Reply #9 on: April 17, 2014, 03:40:53 am »
I split out Kierkegaard's update at the 5 week point after a every two week protocol:

https://www.peaktestosterone.com/forum/index.php?topic=3913.0
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Peak Testosterone Forum

Re: My Story (A Doozy)
« Reply #9 on: April 17, 2014, 03:40:53 am »