T Nation

26yr old Testicular Cancer Survivor Formerly CFS, Now Low T


#1

I’m 26, 5’8" and 130lbs. I’ve been in and out of doctors’ offices for the past 6 years, mainly due to run-in with stage 1 testicular cancer which is now in remission, but what I’m most currently navigating through the medical system is what I’ve been told is low testosterone (who’d have thought that having one in the sling would have caused me issues down the road? /s). My symptoms range from severe muscle pain, ear pressure from TMJ (this one is interesting), joint crackling, depression, brain fog, fatigue, and anxiety. Surprisingly, I’ve been able to maintain fairly well in the sexual department. Traveling to get an idea that I may have a hormonal imbalance has not been the easiest, especially when many doctors are reticent in believing that a testicular cancer survivor may be suffering from a hormonal issue. That being said, I’ve had to go through the gamut of doctors who have diagnosed me with fibromyalgia, CFS, ADHD, and have spent more than $5k in visits to doctors in a year alone — worrying that it may be MS, ALS, a new cancer, unaligned chakras caused by psychic vampires. Exhausted from the Adderall and Valtrex that my CFS specialist convoyed for me (latent Epstein Barr angle, here), I went to an endocrinologist and demanded that I check my parathyroid and T levels. Looking back, I find it funny now that I suspected that it was my parathyroid that was causing my elevated calcium (I was supplementing with vitamin D, none of it was getting absorbed) and not low T causing early onset osteopenia. Parathyroid is fine and my labs come back (refer to discovery labs #1 + #2) showing my T was at 350 ng/dl.

O.K., great, progress. Right? I’ve been suffering for so long, out of a job because of my pain, and just want to get on something, anything at this point to figure out how this year went to complete shit out of seemingly nowhere.

I ask, “Is this normal for someone who’s 26?” and I get, “Testicular cancer survivors should be able to make up for the lack of two with just one. Come back in 3 months.”, “What about estradiol?” and I get scoffed at by him. This is a doctor at a University hospital in NYC, mind you. Fuck you, buddy. I find a better doctor who’s willing to do HCG and TRT.

Anyways, I’m 4 weeks in, 2 weeks with my dosage upped from 100mg/wk to 150mg/wk and HCG 250IU. Labs with new doctor show that LH and FSH are high, par on course for long-term survivors of testicular cancer who eventually suffer from primary hypogonadism and infertility! Yay! Banked whatever measly baby batter was left after doing HCG for a few weeks, then rushed to try my prescription of test-cyp. Was on it for 2 weeks, didn’t notice any difference in body pain, joint pain, and got the order to up the dose to 150mg.

I’m doing .375ml subQ injections twice a week into my abdomen. Haven’t noticed much of anything yet, besides regular morning wood. My wife thinks I’m more depressed, but I’m also upset over the lost time I’ve had to deal with putting everything on hold until I get some semblance of normalcy back in my life.

Now I’m recovering from going to the gym for the first time in a few months and that was the biggest mistake, let me tell you. All my muscles are sore, joint pain is 10x worse, and I’m basically crawling around the house. I thought that I’d try easing into my normal routine before all the fatigue, joint pain, but it’s proving too difficult.

Am I alone in how low T is making me feel? I don’t think I’ve heard of many people go through what I’ve gone through, but then again, I did go through an orchiectomy and there aren’t too many people online talking about getting on TRT after having dealt with testicular cancer.

What do you guys think about my labs/protocol?

first labs with crappy endo:


most recent labs:

*CHEMISTRY*
---------------------------------------------------
| Total Protein           = 8.0  | 5.9-8.4 g/dl   |
| Albumin                 = 5.1  | 3.5-5.2 g/dl   |
| Globulin                = 2.9  | 1.7-3.7 g/dl   |
| A/G Ratio               = 1.8  | 1.1-2.9 g/dl   |
| Glucose                 = 91   | 70-99 mg/dl    |
| Sodium                  = 140  | 135-147 mmol/L |
| Potassium               = 4.5  | 3.5-5.5 mmol/L |
| Chloride                = 97   | 96-108 mmol/L  |
| CO2                     = 23   | 22-29 mmol/L   |
| BUN                     = 13   | 6-20 mg/dL     |
| Creatinine              = 0.87 | .90-1.30 mg/d  |
| e-GFR                   = 118  | >or=60 ml/min  |
| e-GFR, African American = 137  | >or=60 ml/min  |
| BUN/Creat Ratio         = 14.9 | 10.0-28.0      |
| Calcium                 = 10.1 | 8.6-10.4 mg/dl |
| Bilirubin, Total        = 1.2  | <1.2 mg/dl     |
| Alk Phos                = 79   | 40-156 U/L     |
| AST                     = 12   | <40 U/L        |
| ALT                     = 15   | <41 U/L        |
| Cholestrol              = 184  | <200 mg/dL     |
| Triglycerides           = 99   | <150 mg/dL     |
| HDL CHOL., DIRECT       = 54   | >40 mg/dL      |
| HDL as % of Cholestrol  = 29   | >14 mg/dL      |
| Chol/HDL Ratio          = 3.4  | <7.4           |
| LDL/HDL Ratio           = 2.04 | <3.56          |
---------------------------------------------------

*HEMATOLOGY*
------------================---------------------------
| WBC                   = 4.91 | 3.66-11.99 x10(3)/uL |
| RBC                   = 4.98 | 4.20-5.90 x10(6)/uL  |
| HGB                   = 15.5 | 12.3-17.0 gm/dL      |
| HCT                   = 45.4 | 39.3-52.5 %          |
| MCV                   = 91.2 | 80.0 -100.0 fL       |
| MCH                   = 31.3 | 25.0-34.1 pg         |
| MCHC                  = 34.1 | 29.0-35.0 gm/dL      |
| RDW                   = 13.7 | 10.9-16.9            |
| POLYS                 = 55.3 | 36.0-78.0 %          |
| LYMPHS                = 35.2 | 12.0-48.0 %          |
| MONOS                 = 6.9  | 0.0-13.0  %          |
| EOS                   = 2.4  | 0.0-8.0   %          |
| BASOS                 = 0.2  | 0.0-2.0   %          |
| IMMATURE GRANULOCYTES = 0.0  | 0.0-1.6   %          |
| PLATELET COUNT        = 255  | 144-400   x10(3)/uL  |
| MPV                   = 9.1  | 8.2-11.9  fL         |
-------------------------------------------------------

*THYROID & PROSTATE*
----------------------------------------
| TSH       = 1.530 | 0.178-4.530 uIU/ml
| PSA Total = 0.83  | <4.00 ng/ml
| PSA, FREE = 0.35  | Not Estab. ng/ml
| FREE PSA  = 42    | n/a
----------------------------------------

*SEX HORMONE*
------------------------------------------------------------
| TESTOSTERONE, TOT.,S.      = 422.7 | 249.0 - 836.9 ng/dl |
| TESTOSTERONE, BIOAVAILABLE = 230.1 | 72.0-460.0 ng/dl    |
| SHBG                       = 30    | 10-57 nmol/l        |
| FREE TESTOSTERONE          = 83.30 | 30.00-150.00 pg/ml  |
| LH                         = 5.2   | 1.7-8.6 mIU/ml      |
| FSH                        = 15.7  | 1.5-12.4 mIU/ml     |
| PROLACTIN, SERUM           = 5.9   | 4.0-15.2 ng/ml      |
| ESTRADIOL                  = 14.44 | 7.02-49.06 pg/ml    |
| 250H, VITAMIN D            = 88.2  | 32.0-100.0 ng/ml    |
| DIHYDROTESTOSTERONE        = 353   | 106-719 pg/ml       |

#2

A lot of guys expect TRT to show immediate results and then quit prematurely, then they spend a few months off it and soon get sick of feeling like crap and end up going back on TRT. I’ve been on TRT for 5 months and things are improving a little more slowly than I thought it would, mood will always be the first to improve and unfortunately repairing one’s muscle and joints is the last to completely improve. My joints actually didn’t start getting sore until the 4 months, however a little better a month later. You’re going to have good days and bad days until your hormones stabilize and your body starts adjusting. I’m betting the reason for your cracking joints was because your estrogen was very low, this can be hell on joints over a long period!


#3

Are my symptoms in line with low testosterone and low estradiol, though? I feel like I’ve been chasing unicorns by seeing doctors, that although my testosterone is indeed low, could this be the answer to some of the issues I’ve been dealing with? I’m in a difficult situation and feel that most of my problems have been dismissed by the medical system up until getting the most recent diagnosis of low testosterone. Leading all the way up to scheduling with an endocrinologist, I was sure enough that this was going to be my “new normal” since there is no cure for CFS and that I would have to live in pain in some form or another. Given that outlook, you can understand my apprehension with TRT as something that will boost my quality of life.


#4

Absolutely at your age you should be near the top of the range, 700-900 ng/dL. Your testosterone levels would look great if you were 90 years old. A lot of guys including myself with low T usually have very low estrogen since a small percentage of estrogen is converted from testosterone. Your FT is at the bottom of the range possibly affected by your somewhat high SHBG, as SHBG increases your FT decreases.

Everyone is different, SHBG of 48 might be high for you while not necessarily for someone else. There’s a lot of doctors out there that would tell you you’re within range (for 90 year old), but what they fail to understand and often ignore is the symptoms as they treat you as a statistic. The fact that your doctors didn’t run labs for estrogen tells me you’re dealing with doctors that don’t understand male hormones.


#5

Will my SHBG level out with the TRT? My new doctor who I’ve been getting my TRT from and ran estradiol (albeit, not a sensitive assay) never mentioned SHBG, but did tell me that my free T, e2, and TT were low enough to warrant a protocol of HCG and TRT. I’m sure that this all takes time to dial in, but I definitely want to make sure that if there’s anything supplemental that I should be looking at in accordance with my blood results that will lead to a better outcome, then I’m all for it. Exercising has been difficult for me, given that the weeklong recovery isn’t worth the 30 minutes in the gym.

I’m also surprised to hear about people having naturally low e2, since reading these forums and other people’s experiences, it seems that it’s usually low T -> high e2 and not low T -> low e2. I’ve always been naturally skinny for most of my life and have had difficulty putting on weight, I expect that to change as I continue with the TRT. So far, I’ve seen some spikes in appetite, but I typically haven’t been able to eat that well be it from depression or low testosterone.


#6

Larger doses of testosterone will naturally decrease your SHBG and non-sensitive estrogen test is useless as it’s used for females. Some that have low-T have higher estrogen while others have very low estrogen when T is low. I’m naturally skinny also but I spent much of my life on medications that seriously increased SHBG giving me the symptoms of low-T which over time caused me to gain weight, I’m the type of guy that can eat out every night and not gain weight from it.


#7

How bad was the joint pain for you with low estradiol? Surely, it couldn’t have been as bad as I’ve been describing it? At one point, I was seriously considering that it may be a neuromuscular disorder; i.e. MS or ALS. MRIs came out clear in that department, but the joint pain from day to day has been debilitating that the only momentary relief I get from it is through copious foam rolling and yoga to crack out every stubborn joint.

Also, this theory may be reaching as well, but could my TMJ be attributed to low estradiol due to the bone density loss? I’ve read one account of a person who experienced “jaw clicking” and was also in the beginning of their TRT journey.


#8

Before I found out about my low-T problem I went to the beach to go snorkeling and couldn’t understand why my heart was pounding so hard, I thought for sure the sharks would think I was a fish in distress. Add to that my knees were clicking and popping something horrible. My testosterone was 119 ng/dL so you can imagine how low my estrogen, single digits. Your case sounds quite a bit worse, I didn’t feel pain when all my joints (including jaw) were popping and clicking it just felt Bazaar. Now my joints are just sore, probably because they are healing from spend more than a year with super low estrogen.


#9

Hey, thanks for the replies. It’s interesting that you mention that your heart rate has been elevated, did you check to see if there were any abnormalities prior to getting your testosterone checked? I did notice in the CBC bloods that I had done prior to getting my hormone panel that I had low hematocrit and was unclear whether that is tied to my testosterone being low. From what I understand, TRT brings up the production of red blood cells, so hopefully that’ll resolve in time. It’s morbidly fascinating how conducive testosterone is to your general functioning, that I wonder if the reason why I’ve been feeling this way could be simply due to testosterone. The unwillingness to learn about male hormones and ignorance from the medical community is equally as depressing, as it could have saved me a lot of money, time, and pain.

The joint pain is more like a knot or tightness that you need to “crack” to get through the day, similar to how you’d crack your knuckles or neck. I’ve had dry bones for forever that I thought nothing of it, until I was getting popping from sternum to all the way up to my jawbone.

Very “bazaar” indeed. Is my e2 really low? 14 pg/ml is 1 point below the threshold, but I guess everyone feels differently and given that my testosterone was at an all time recorded low of 345 ng/dl, it was probably lower at one point.

What’s your protocol looking like, if you don’t mind me asking? I’m wondering if I’ll ever need an AI and whether I’m delaying the process by my mode of subQ injection > IM.


#10

Before I was considered for TRT I had an MRI and extensive blood tests, nothing was found except low testosterone and muscle atrophy induced by withdrawing off of Klonopin after 28 years. Everything was perfectly fine sex drive wise, it was when I began tapering is when things went downhill. My endo put me on 75mg weekly to start and switched me to 50mg twice a week do to my somewhat lower SHBG 18 (11 - 78 nmol/L), the only time I may have required an AI was when I was put on a crazy protocol by old endo (200mg E3W or 200mg E14D) who just didn’t know anything relating to TRT. I also had low hematocrit before starting TRT and just had it check out this past Saturday, I’ve been on TRT since February, I can’t find my old results but remember my hematocrit being below range.

As of 9/2/17
RBC, AUTO 5.34 Mill/mcL 4.70 - 6.10 Mill/mcL
HCT 45.2 % 42.0 - 52.0 %


#11

Seems that my SHBG is a little high at 46-30. Looking back at older labs in which I’ve gotten my T levels drawn, they were even higher. I’m a bit reluctant in going the higher bounds of doses to bring down my SHBG so that maybe I could feel better sooner, but I’ll just wait it out as I have a 4 week follow up with my urologist coming up this week to see what my levels are at with the increased dosage at 150mg a week.

Is there anyone that takes 150mg+ a week without the use of an AI?


#12

Got my 6 week labs done, day after injection:


Not feeling the effects of high E2 yet, still experiencing low E2 symptoms if anything. Going to be speaking to my doctor about lowering the dose, which is 150mg split into 2 doses and HCG 250IU twice a week.

Will creatinine and CO2 bounce back? As for the other CBC irregularities, my PCP doesn’t seem concerned, but you know how that goes. Anyway, the joint pain is still present, mood is sporadic, libido is higher than what my “high” used to be and I’m feeling a little less fatigued than usual. Obviously, it’s concerning to be on supraphysiological levels this early into TRT, but I’m hoping that I won’t need to take an AI since the bulk of my symptoms feel that they may be from low E2.

Thanks for the support in the last couple of posts, it’s been hard dealing with doctors and getting on treatment that, like everyone else, I want this to work for me but am prepared to go through the gamut all over again to figure things out.


#13

pinging @KSman, wondering if you can help a TRT n00b like me.


#14

CO2 is down from hyperventilation during the blood work as your stress reflex. Some guys hold their breath and have high CO2. None of this has any significance.

Vit-D25 could be a little better. With season changing needs for Vit-D3 increase.

You do not want total cholesterol any lower. 180 is ideal.

HTC shows blood a bit thin and we expect TRT to increase HTC. There can be a concern of a GI bleed and an occult blood test can rule that in/out. Any digestive issues or food sensitivities?

LH/FSH–>zero on TRT, do not test again.

TSH should be closer to 1.0
May be elevated from not using enough iodized salt.
Eval overall thyroid function via oral body temps as discussed later in this post. Your wife may be affects too and perhaps more so.
Thyroid lab ranges are stupid so docs are blind and I have only once heard of a doc asking about iodine intake.
Thyroid fT3 active hormone affects every cell in your body.
Smells like CFS?

SHBG levels go down with more T and down with less estrogens - most of the time.

Lower E2 with anastrozole, not less T.
Inject T twice a week, subq works well
take anastrozole at that time, 1mg anastrozole per 100mg T
Do labs halfway between injections, always, lab timing matters and you need to avoid seeing changes from lab timing.


Please read the stickies found here: About the T Replacement Category

  • advice for new guys - need more info about you
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc

Evaluate your overall thyroid function by checking oral body temperatures as per the thyroid basics sticky. Thyroid hormone fT3 is what gets the job done and it regulates mitochondrial activity, the source of ATP which is the universal currency of cellular energy. This is part of the body’s temperature control loop. This can get messed up if you are iodine deficient. In many countries, you need to be using iodized salt. Other countries add iodine to dairy or bread.

KSman is simply a regular member on this site. Nothing more other than highly active.

I can be a bit abrupt in my replies and recommendations. I have a lot of ground to cover as this forum has become much more active in the last two years. I can’t follow threads that go deep over time. You need to respond to all of my points and requests as soon as possible before you fall off of my radar. The worse problems are guys who ignore issues re thyroid, body temperatures, history of iodized salt. Please do not piss people off saying that lab results are normal, we need lab number and ranges.

The value that you get out of this process and forum depends on your effort and performance. The bulk of your learning is reading/studying the suggested stickies.


#15

You’re the best, @KSman. I really appreciate your input here and across the forums. You’re the main reason I registered on the forums in the first place after lurking for so long.

I’m not entirely sure what I understand you here. Are you implying that my unrelenting joint pain may be in part due to an undiagnosed thyroid disorder or am I deficient in dietary salts? This is interesting, as I’ve seen an endocrinologist prior to rule out anything related to the thyroid that would connect with feeling like a rattling skeleton on fire.

Isn’t above the 1500 ng/dl range a good signal to lower the dosage, though? I don’t feel any different than being off of TRT, currently. Still in pain, so numbers don’t really mean much to me in that regard. I’m worried about getting on AI, as I’ve been led to believe by my urologist that low estradiol is the culprit to my joint pain and muscle aches. The guy’s a firm believer in necessitating AIs only if you’ve lowered your dose and are still aromatizing unusually. I’m thinking that getting an AI from him is going to be a no-go, but again, I’m not experiencing any high E2 symptoms and all the “supposed” low E2 symptoms.

Anyway, who do you suggest I go see to get my thyroid in check? Is this an autoimmune disease, you think? I’ve tested with rheumatologists for antibodies that show up in some autoimmune disorders that may cause joint pain and have come back negative. Also, with the endocrinologist I’ve tested for hypo/hyperthyroidism. Here are the labs for that:

T4, FREE, NON-DIALYSIS 1.3 ng/dL 0.7 - 2.2 ng/dL
TSH HIGH SENSITIVITY 0.956 mIU/L 0.4 - 4.0 mIU/L

I’ve been in pain for so long and have been through the medical system back and forth trying all sorts of things, and naively, I was thinking that low T/E2 might have be the last and final hurdle to feeling better. 6 weeks in, though, I don’t feel any different besides having a higher libido. My libido was already high with just one in the slack! Now I’m dealing with joint pain and the constant urge to pillage villages.

Anyways /rant. I’m glad to have you here.


#16

Just got my DEXA scan.

Osteopenia.

I’m tired of all this.


#17

@KSman Your thoughts on the update? What should I do about this new development? I guess this explains the joint pain.


#18

Anyone? Is this place still active?


#19

Male bone health requires good T levels to maintain the collagen matrix that supports mineralization. Also need Vit-D3, boron and magnesium. Most are magnesium deficient. See “ZMA” in the Biotest store. Most need 5,000iu Vit-D per day, find tiny 5000iu oil based gel caps.

A high potency B-complex multi-vit with trace elements including 150mcg iodine and 200mcg selenium would be good. In your case, it should also list iron. Most men’s formulas do not have iron.

Get the occult blood test!

Thyroid labs appear good.
fT3 is the active hormone, yet so many docs do not test.

PLEASE DO THE ORAL BODY TEMPS.

Body temps can be a better indication of thyroid function.
You could respond re your use of iodize salt in your home.

Pain: I find that 15mg Rx meloxicam is very effective. Very inexpensive. Only one dose per day. Resolved my osteoarthritis pain and swelling where naproxen was ineffective and messing up my kidney marker labs.


#20

Did you ever find something that helped your pain? I am x2 testicular cancer survivor and was on an androgel for 3 years and recently in the past 2 months switched to subq injections twice a week (no ai). Mostly feel much better on this protocol as t levels have doubled but noticed my e2 has plummeted and joints and back/chest bone just ache and crack. Your symptoms sound very similar to mine. Did you find a solution?