Announcement

Announcement Module
Collapse
No announcement yet.

26 years old. 6 years after TC. Living in constant, debilitating joint pain

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • 26 years old. 6 years after TC. Living in constant, debilitating joint pain

    Iím 26, 5í8" and 130lbs. Iíve been in and out of doctorsí offices for the past 6 years, mainly due to run-in with stage 1 testicular cancer which is now in remission, but what Iím most currently navigating through the medical system is what Iíve been told is low testosterone.

    My symptoms range from severe muscle pain, ear pressure from TMJ (this one is interesting), joint crackling, depression, brain fog, fatigue, and anxiety. Surprisingly, Iíve been able to maintain fairly well in the sexual department. Iíve 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 ó 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.


    I then started seeing a urologist who recommended TRT.
    After my first 2 weeks on TRT, I had my dosage upped from 100mg/wk to 150mg/wk and HCG 250IU. Labs with him 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! Was on test-cyp for 2 weeks, didnít notice any difference in body pain, joint pain, and got the order to up the dose to 150mg.

    Iím doing .375ml subQ injections twice a week into my abdomen. Havenít noticed much of anything, besides regular morning wood. I tried going to the gym for the first time in a few months and that was the biggest mistake. All my muscles are sore, joint pain is 10x worse, and Iím basically crawling around the house. I thought that Iíd try easing into my normal routine before all the fatigue, joint pain, but itís proving too difficult.

    I don't feel any better. Going back to the doctor today, 6 weeks in. The joint pain is still there 24/7.
    He's saying if the joint pain is caused by low T, I would've felt it already.

    I did some more labs today, after 6 weeks of TRT, and waiting on the result, but my doctor thinks my pain isnt low-T related.
    I'm completely defeated.



    What can this be? Is my constant, unrelenting joint pain and fatigue really because of low t / low estrogen?

    I've done MRIs, X-Rays, CTs, bloodwork, nothing shows up. Went to rheumatologists, cardiologists, internists, oncologists, psychiatrists, ENTs, endocrinologists, any type of doctor out there. Even got an 'expert medical opinion' by a panel of worldwide doctors who are experts in their field (Advance Medical).

    No one has a clear cut answer for me. Most say it's CFS/fibro. I had to fight my way to even get on TRT, as a testicular cancer survivor. The only thing I haven't done is an MRI of the spine to rule out ankylosing spondylitis. I'm desperate at this point. I've been homebound for 18+ months and out of a job, my days spent in complete and neverending physical pain.

    first labs before TRT:

    Click image for larger version

Name:	lab1.jpg
Views:	1
Size:	114.8 KB
ID:	2010
    Click image for larger version

Name:	lab2.jpg
Views:	1
Size:	127.9 KB
ID:	2011

    labs from 6 weeks ago:
    Click image for larger version

Name:	lab.gif
Views:	1
Size:	259.9 KB
ID:	2012




    Anyone else feel the same? My life has been completely halted. I'm desperate for any help or answers

  • #2
    What you have been going through sounds horrible. Have you considered Lyme disease? Like syphilis in the days preceding antibiotics, it is sometimes referred to as "The Great Pretender." If you have had a known tick attachment I would consider that possibility. That said, getting diagnosed and treated is the subject of medical controversy and can therefor be quite a challenge.

    Comment


    • #3
      Originally posted by DaveNorCal View Post
      What you have been going through sounds horrible. Have you considered Lyme disease? Like syphilis in the days preceding antibiotics, it is sometimes referred to as "The Great Pretender." If you have had a known tick attachment I would consider that possibility. That said, getting diagnosed and treated is the subject of medical controversy and can therefor be quite a challenge.
      Thank you for replying, Dave. Unfortunately yes, I've already gone through a blood panel for Lyme and it came back negative.

      I've also ran an autoimmune blood panel, genetic testing (through 23andme and a cancer-specific one from Counsyl), sleep tests, and countless CT scans and an MRI. Even an endoscopy and colonoscopy. Nothing.

      The only constant is my low t and low estrogen, but could my constant pain be from that?

      Comment


      • #4
        Did you do chemo? I've heard anecdotes that Neupogen/Neulasta can cause joint pain.
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #5
          Originally posted by mcintoda View Post
          Did you do chemo? I've heard anecdotes that Neupogen/Neulasta can cause joint pain.
          Oh I should've mentioned - no chemo, just surgery.

          Comment


          • #6
            It's worth noting I was somewhat coping with everyday fatigue for years, but in the past 2 years or so my condition suddenly worsened. Joint pain started occurring more and more often, and in the weirdest places like my jaw and ear causing so much pain. I'm at loss to what additional diagnostics I should do.

            Comment


            • #7
              I know this is going to sound weird but did you take any CIPRO (antibiotic) recently? I had a bad reaction to it before my surgery to rule out an infection and was taking like 1,000 MG per day and still feel it. I had similar things happen like brain fog and weird muscle pain which I feel today still months later. After some research it had looked like people got "floxed" and had it much worse. While I'm not miserable like most of them it was stil interesting. When I told my doctors my symptoms they kind of brushed it off and put CIPRO down as allergic.

              https://www.google.com/search?q=cipr...hrome&ie=UTF-8
              April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
              May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
              June 2017 - Left orchiectomy & diagnosed with Seminoma
              As of October 2017 - All clear!

              Comment


              • #8
                To echo JMZ's comment I too have had problems after 10 days worth of levofloxacin antibiotics for mild walking pneumonia this past April. Days before the pneumonia and drug, I was feeling the best I had in months and sleeping really well. I have been on Androgel for about 2 years and during the time I was on the antibiotic for about a month after I had lost 8 lbs and a lot of muscle. My T levels dropped from 600s to the 300s and I felt awful such as brain fog, depressed, anxious and extremely tired yet couldn't sleep. (still not doing great 4 months later). I now have morning joint pain in my fingers, back, right foot and ribs that I never had before. Some days are better than others, so I do agree that something with antibiotic did a number on my body and am struggling to get back to where I was just short months ago. Just my T labs today, so we will see if they are still low because I sure feel like they are.
                TC#1
                May 2013 - Left Orchiectomy - Stage pT1 Seminoma (2.3 cm)
                June 2013 - 1 Dose 1000mg of Carboplatin ---> Surveillance
                TC#2
                May 2015 - Right Orchiectomy - Stage pT1 Seminoma (2.2cm)
                TRT - Androgel 40.5mg 1.62%
                June 2015 - Surveillance

                Comment


                • #9
                  Originally posted by biomimicry View Post

                  Thank you for replying, Dave. Unfortunately yes, I've already gone through a blood panel for Lyme and it came back negative.

                  I've also ran an autoimmune blood panel, genetic testing (through 23andme and a cancer-specific one from Counsyl), sleep tests, and countless CT scans and an MRI. Even an endoscopy and colonoscopy. Nothing.

                  The only constant is my low t and low estrogen, but could my constant pain be from that?

                  Unfortunately, Lyme disease testing is far from ideal. There was a study a few years ago that 75% of their own patients with confirmed Lyme disease tested negative. All the tests are antibody tests. This means they test your immune system's response to infection, not for the presence of infection. Have you had any known tick attachments or live in an endemic region? The reason I am pursuing this as your symptom picture combined with a lack of positive findings really sounds suspicious. If you want to PM me, I will be glad to send you my phone number so we can talk. I was about like you, got diagnosed and treated, and am doing pretty well for over ten years.

                  Comment


                  • #10
                    Just thinking of you, so sorry the post treatment road has been so tough.
                    17 year old son Grant dx 12/21/16
                    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                    pre/o CT Scan 12/22/16 normal
                    r/o 12/22/16
                    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                    BEP x 3 1/27/17
                    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                    Comment


                    • #11
                      Had a DEXA scan last week, turns out I have early onset osteoporosis; osteopenia. I regret to inform to all my doctors who previously thought I had depression, CFS, fibromyalgia, and that was the root cause of my physical pain, that you were wrong and I now have to deal with the consequences of being hormonally untreated.

                      Testosterone in 2017 is still either considered taboo or not worthwhile to doctors, meanwhile males everywhere are suffering. I only hope that I can reverse the damage that TC has left me and move on.

                      26 and I have osteopenia! Ha! What a wild ride.

                      It's sad that fibromyalgia is the get out of jail card for so many doctors and that testicular cancer survivors are expected to hypertrophy to compensate for the rest of their lives. You're going to tell me that my HPA which was originally intended to signal the production to 2 in the sling won't overwork the lone survivor and eventually cause it to burn out? O.K., docs. Thanks for wasting my time and money. Thanks for all the antidepressants, anxiolytics, painkillers!

                      Sorry for the rant, I'm sure that it's taken many others that have walked my path, longer and have been in more pain due to this disease.

                      Comment


                      • #12
                        Gosh! So sorry. I think some more discussion needs to be had amoung TC experts about low T. I understand they are supposed to test prior to chemo or after Orchietcomy, but they do not do so everytime. My son is a senior in HS and they never tested any horomone levels until I requested at 6 month post chemo tx ended. Well, just got results back and things are all messed up.
                        Again, so sorry you are going through this, and am grateful you are sharing.
                        17 year old son Grant dx 12/21/16
                        pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                        pre/o CT Scan 12/22/16 normal
                        r/o 12/22/16
                        Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                        PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                        -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                        2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                        BEP x 3 1/27/17
                        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                        Comment


                        • #13
                          This... sounds an awful lot like what I'm going through. It started about 11 years ago after I had a really bad case of mono, and it has only gotten worse since. The joint crackling, brain fog, depression, joint and muscle pain and fatigue... I'm not gonna say I know exactly how you feel, but I think I can relate. I've only ever had one testosterone level test done -a total testosterone test- which was before my I/O, and it ended up being 342 ng/dl. I went to see a doctor a couple of years ago, but all she did was test for hypothyroidism, prescribed a bunch of benzodiazepines and that was that. I'm gonna meet with a different doctor October 24th, and hopefully they can help figure out what's wrong.

                          Do you also feel cold a lot of the time? What about your hands/feet? My toenails are usually purple, and the only time my feet don't feel cold is in the summer AND I'm wearing shoes. Oh, and do you have WEAK joints and/or ligaments as well?

                          I'm sorry you have to go through this. Keep fighting!

                          Comment


                          • #14
                            Originally posted by Trekga View Post
                            Gosh! So sorry. I think some more discussion needs to be had amoung TC experts about low T. I understand they are supposed to test prior to chemo or after Orchietcomy, but they do not do so everytime. My son is a senior in HS and they never tested any horomone levels until I requested at 6 month post chemo tx ended. Well, just got results back and things are all messed up.
                            Again, so sorry you are going through this, and am grateful you are sharing.
                            Just recently, there have been studies demonstrating the correlation with hypogonadism affecting those diagnosed with testicular cancer prior, which makes sense given that there's already a link with undescended testicles and testicular cancer. It's possible that I've felt the earlier symptoms of what I now know to be a hormonal imbalance even before testicular cancer, but have rationalized these mood disorders to either be personality traits of mine or fleeting reactions to how I would handle stress or upsetting news. If I had not personally asked for copies of all my blood reports from the past 7 years and made the connection that my levels were in a steady decline, I would still be unmedicated and suffering. It's paramount as cancer survivors to be your own advocate, especially if you're young and dealing with the aftermath alone. I had to leave the job of my dreams because I could not physically, cognitively, or emotionally be present and am now left a year and a half gap in my resume right after leaving university with 0 experience. With no one to lean on for help, besides my wife (who without her, I don't know where I would be right now), I naively expected a medical professional to diagnose me and help me. It's incredibly hard, we're both still in our 20s, just starting out in our respective careers to have me out of a job and wired on amphetamines/anti-depressants and soaked in daily bath salts just to get through the day. Meanwhile, doctors are left stroking their chins and looking for easy answers for difficult patients, like me.

                            It's incomprehensible that I've now developed osteopenia from not having adequate testosterone for so long.

                            Grant needs to see a urologist. Don't make the mistake in thinking that an endocrinologist will take care of male hormones, like I did. Some obvious signs of primary hypogonadism is testicular cancer survivors are high FSH and LH with a low free T or total T. With all due respect, Grant is probably keeping some tell-tale signs away from you, I know for sure that I wouldn't feel comfortable talking to anyone about what I've been going through with my mom after everything he's been through. I'm sure that he's just trying to put it behind him and move on, like everyone else on this forum is everyone else on this forum is trying to do. I tried putting it under the rug for this long, humoring the lectures from doctors that, "500 ng/dl is fine for a 22 year old!" and "400 ng/dl is fine for a 25 year old!", then to "mid 300s is perfectly normal for someone who's 26!".

                            Prior to getting on TRT, I tried finding someone else who was far along as I was in remission and couldn't get in touch with anyone, which was another problem. Was this par on course for long-term survivors? Honestly, I felt so bad some days that I thought I had a relapse or new form of cancer. Are you really surviving at that point? Steve Pake, who's really popular on here made a blog post about his hormones a few years ago that made me think to myself, that despite the positive reinforcement in his lifestyle through career changes, traveling, advocacy, that he's older than me and he hasn't tried treating himself! How was that possible? I gave up for a while, really believing that doctors who told me that it was fibromyalgia were probably right and that this was going to be my life now. My new normal. In fact, I had a similar response to another survivor on this forum, Djuro, who said TRT was the worst mistake of his life! I gave it time. It wasn't getting better. My levels are at their lowest now, 345 ng/dl. No offense to Djuro or Steve, but you'll both be on the cat's tail eventually with everyone else who thinks their >400 ng/dl levels are not causing your "new normal" to be root of some of your issues.

                            I'm so battered after this that I still wonder if this is MS, ALS, or AS, maybe even a new cancer, despite getting neurological exams, MRIs, and blood labs. My back is killing me, but it's probably from the osteopenia. From cancer PTSD to the anxiety from having your hormones unchecked, it's definitely not helping.
                            Last edited by biomimicry; 10-08-17, 06:50 PM.

                            Comment


                            • #15
                              Originally posted by Sir Lurkington View Post
                              This... sounds an awful lot like what I'm going through. It started about 11 years ago after I had a really bad case of mono, and it has only gotten worse since. The joint crackling, brain fog, depression, joint and muscle pain and fatigue... I'm not gonna say I know exactly how you feel, but I think I can relate. I've only ever had one testosterone level test done -a total testosterone test- which was before my I/O, and it ended up being 342 ng/dl. I went to see a doctor a couple of years ago, but all she did was test for hypothyroidism, prescribed a bunch of benzodiazepines and that was that. I'm gonna meet with a different doctor October 24th, and hopefully they can help figure out what's wrong.

                              Do you also feel cold a lot of the time? What about your hands/feet? My toenails are usually purple, and the only time my feet don't feel cold is in the summer AND I'm wearing shoes. Oh, and do you have WEAK joints and/or ligaments as well?

                              I'm sorry you have to go through this. Keep fighting!
                              I'm not sure the association between your previous infection of mono and how you're feeling now are related, but antibiotics can make you feel worse if you're already hypogonadal. I can't imagine feeling the way that I feel for 11 years. What's the point? Your 342 ng/dl reading is an indication that there's something worth investigating. Reading your post history, you're either 29 or 30. I'm sure your T levels have taken a hit since your I/O. You could have been dealing with low T even prior to TC, like most guys.

                              Raynaud's phenomenon is what you're describing. Personally, I'd wake up in mornings drenched in sweat. Low testosterone causes muscle wasting, so not surprising that you feel that your ligaments and joints are weak.

                              The only thing that's keeping me through this is my determination to see this through and finally be able to work, enjoy the rest of my 20s with my beautiful wife, and start living.

                              Comment

                              Working...
                              X