Testosterone replacement therapy: Testogel vs Nebido injections

FormerMember
FormerMember
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Greetings

Calling all chaps who are undergoing testosterone replacement therapy...

I have just made the switch from Testogel to Nebido... I wonder if anybody finds the following experience familiar...
I started on the gels in June after my TC diagnosis and have just spent almost five months on Testogel. I got to a level (on 1.5 sachets a day) where I felt good and healthy and my T level was around 18. After chatting with my endocrinologist, I decided to switch to Nebido injections, mainly because I thought it would be easier having a jab every 10-12 weeks.

So I took my last dose of gel on Thursday morning and I had my first injection yesterday morning (Friday). My T level was fine (about 18 in the 10 to 30 range) before the jab. I felt ok for about 8 hours after the injection but I began to feel a bit rough last night and still feel a bit grim today. It  feels like the start of low T symptoms (I suffered with this around the time of my TC diagnosis so recognise the symptoms).

I was already on a good level of T so my questions are:

Could my T level have dropped so quickly (in less than 24 hours)?
Could it be that the level is now too high?
Is not feeling great a common reaction to switching from gel to Nebido?
Does it take a few days to kick in?

Greg: I know you are on Nebido and have given me some sound advice. But does any of this ring true?

I appreciate what works for one guy may not work for another and we are all different but any advice would be most appreciated.

Kind regards
Jason

  • Hi,

    I discussed it with my GP and my oncologist - both were ok with it, and oncologist advised to keep doing it until I get my next endo appointment. My endo is not very responsive - if I don't get a proper consultation next time then I'll ask for another one.

    On Nebido and one testogel a day, I get to 23 nmol/L.  On 2 testogel I got to 22.

    Both those figures are a tad high (average for a male 40-49 is 20.7).

    On the next nebido end of cycle and start of cycle then I'm going to use 0.5 sachet a day for the last and first weeks, unless the endo prescribes shorter nebido injection cycles - e.g. 9 weeks.

    The doctors attitudes are lovely - "let it run for 12 weeks and we'll see just how crap you feel".

    The only issue with topping up with sachets as its then hard to argue the case that the injections are not enough as the evidence of low T levels have been covered up by the additional sachet. I got my onologist to write to the endo on the hope that a comment from them carries more weight.

    So, no medical reason my oncologist or GP were aware of in topping up. From your blood tests yesterday did you get testosterone checked? I insist on it on every blood test

     

    Greg

  • FormerMember
    FormerMember in reply to gregm

    Morning

    I'm interested in seeing how people reacted to the 2nd injection.  I had my second nebido injection back on the 16th December and this took about 4 days to kick in, then started feeling fine.  At almost 3 weeks from the injection I started feeling rubbish again, tired, dizzy, sick and a bit shaky plus disrupted sleep.  So I had a blood test this week which was 23 days after the injection and this came back with the level of 12.6 which is lowed than I was expected being so close to the injection but also not surprising with the way I have been feeling.

    I have previous read people saying the injection process can take some time for the body to get used to so maybe this is whats happening here?

    23 days into a 12 week cycle is a bit soon for this to start fading out, I'm going to see how things are over the weekend and then maybe go back to my GP next week to see if he can talk to the endo doctor about this.

    Regards

    Dan

  • FormerMember
    FormerMember in reply to FormerMember

    Hey All,

    Went for my second (6 week) shot of Nebido yesterday, I was feeling pretty shakey a few days before hand, so once I had the blood test out the way on the Thursday, I had a sachet on the Friday and the Injection on the Saturday...

    Been feeling great since I had the sachet and the jab... as always never sure how related this is but blood tests were showing the level at 23 at 2 weeks post the first jab and only 7 at 6 weeks post the first jab, so the endo said I used it pretty quick and will get another blood test in 6 weeks and possibly move onto a 8 week cycle... which just happens to fall in the same week as I plan to do a mamouth "Ride the Rockies" bike tour.... As always sexual appetite remains ironically insatiable not that I get any... 

    Hope this helps...

    George, Flatbagger at 40.... 

  • FormerMember
    FormerMember in reply to FormerMember

    after my first injection, two weeks into it I was at 26.9. Now at approx 6 weeks after my 2nd, will have blood test done on 13 may which will be 8 weeks into it, then 3rd injection 2 weeks after. Haven't had much effect from 2nd jab compared to 1st, guess i wasn't too low hence the lack of euphoria. Isn't a bad thing as not as much of a dog on heat, albeit i always have had a high sex drive, so i guess I'm just....normal.

    Jamie

  • FormerMember
    FormerMember in reply to FormerMember
    Haven't been on this site for a few years! Six years now post TC BEP 4 cycles and bi lateral orchidectomy and now down to once yearly check with Oncologist as they are giving me a seven year follow up as I had stage 3 with spread to lymph nodes in pelvis, abdomen and in my neck. Anyway I've been on Nebido since 2008 after a few months on Testogel which didn't work for me. So this is a bit of feedback on my Nebido experience. After my injection my blood test at one week is 40nmol even after letting it taper down to 6nmol over a twenty week period. This meant too high to too low so sidestepping the Endocrinologist have negotiated with my GP to have 2 ml of the 4ml vial every 12 weeks which has typically given me a range of 32nmol post injection to 12nmol etc. The manufacturer says the FULL 4 ml has to be given and its sub therapeutic if less is given!? But that meant too high where risks of side effects can happen to too low so that the 4ml wouldn't take me too high, only it still did! I've even got to 36nmol with 3 ml. Before anyone thinks it make me a horny dog it doesn't unfortunately and I consider my self post cancer to be a shadow of my former self sexually, hormones must be attenuated and used by the body in a complex way and this is perhaps a blunt instrument as a means of getting my T but as I don't make any of my own what can I do?! Hope this helps. Also I am feeling the libido affects are reducing even though the readings are still high so I am now having 3ml Nebido every 12 weeks and see how it goes. My GP thinks its my mental state that's lowered my libido but I don't!
  • FormerMember
    FormerMember in reply to FormerMember

    Fantastic advice folks. Thank you for all the information.

    I'm currently in the uneviable position where it looks like I'm going to have my remaining nut removed. I found out in late December that there was a tiny patch on the ultrasound that was of concern and after this when I went back there were 3 tiny patches of concern. I'm booked in for a full body scan next week and I've met with a surgeon already. What the surgeon has offered is that he will do a biopsy when I'm knocked out, this will go to pathology immediately and he imagines that the result will be positive for cancer and the testicle will be removed. He is saying this from looking at the scans and seeing the three tiny lesions.

    I'm all a bit freaked out by it all. I'm not long over 30, I don't have a steady partner and I would like to have a family some day. I'm still studying and I've always had this get up and go attiude. The freedom to do what I want. I am extremely active and I don't want to give this up.

    When I was first diagnosed mt T levels were fine but after 8 months post chemo they went through the floor. I remember my beard thinning so I shaved it off and it didn't grow back. It remained that way for nearly 4 weeks. The doc had be on testo gel. Felt good again. I was on that for about a year and a half. I went walking across spain on a thing called the Camino. I ended up losing my testo while in Spain, I sweated buckets at night for about 5 days but after that I felt like a new man. As crazy as that sounds. My testosterone has remained at 16-17 for around a year now until last week.

    My testosterone when last checked a week ago was around 13. A big drop. I was feeling really tired and moody. I've been chatting to my doc and like most doctors, as long as the testosterone is within the 'normal' range then they don't really question. The likelihood is that I'm going to be on this stuff for my life. This scares the bejaysus out of me. I spoke to my doctor about my fears and as much as he is a nice guy he thinks it'll be simple to put the testosterone on everyday and things will be fine! I train in the morning and a lot in the evening. Can I continue to train in the morning if I don't have my testo on? I have so many questions!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi pal.

    If you've lots of questions here's the place to ask them! Someone will have the answer.

    Sorry to hear you might lose your other little fella.

    On the exercise front, you've nothing to worry about. I lost my second last June and I now run four times a week in the mornings. In fact i did 8 miles this morning, showered and then put on the Testogel. That routine works a treat for me. I'm even beginning to get my times down and while they are not what they were pre-diagnosis, I'm enjoying the challenge of trying to get fitter.

    The fertility question is a big one for you. Get some good advice about sperm storage etc.

    Fire away any questions and keep us posted
    Kind regards
    Jason

  • Hi Ally,

    Sorry to hear you have some more treatment to come.

    On testosterone replacement - I've been on that for 18 months now, starting with testogel and now Nebido injections every 10 weeks.

    Testosterone replacement can actually be a benefit - whilst the levels of those around you drop as they age (mid 20s when young, down to 13 or so when in the 80s) - yours will stay good through treatment bringing benefits in lean muscle, low body fat and libido for the rest of your life. Even without having had cancer that's something I'd pay for!

    I'm a gym fanatic, my idea of fun being indoor rowing. At 46 now my body fat level is ~12%, just outside what's needed for a 6-pack, and as fit as strong as I was in my 30s (backed by Polar heart-rate data, weights lifted and rowing times are only 1% slower). In fact in the recent gym triathlon I came 7th out of ~100, with those who beat me being half my age. (row 500m, cycle 1mile, run 0.5mile, 10s between equipment 8m04s excl. time between machines). There's no reason to slow down, and every reason to enjoy the replacement.

    On testogel about 10~14% of the 50mg is bio-available, and it can be applied any time of day, but doing so in the morning mimics the natural daily cycle, and will be fine after the morning training - your level won't drop that much from the day before as it takes 2~3 days to get up to a good level and similarly to come back down. I use Nebido now which means I don't get daily peaks but get a gradually declining level over the 10 weeks. That feels a little different and at the end of the cycle I notice it, but I'm on week 9 now and still going to the gym 4~5 times a week.

    greg

     

  • FormerMember
    FormerMember in reply to gregm

    Thanks guys. You are all brilliant on here.

    I've been clinging on to the hope that my scans are something else. I am still clinging on to the hope that the biopsy says I can keep the little fella but my surgeon isnt very hopeful and he has said so. He operated on me the last time four years ago and he was so good you can't even see the scar now. To top it off he is also a tc survivor so TC is his thing.

    I don't like taking medication and I'm worried about the long term effects of it. I would never take medication and over the years as much as the doc wanted me to take an anibiotic or anything I just refused. I've got on pretty fine without anything. Even during chemo I wouldn't take any of the anti sickness stuff. The chemo was bad enough. My doc was quite blunt with me when he said you can take TRT for the rest of your days or else you may die of tc. It's your choice. It didn't make me feel any better but he's right. It should be an 'easy pill to swallow' but I'm finding it hard. I want to live until I'm 90! Somebody has said testogel won't affect your liver will nebido? All meds are liver toxic? Yes?

  • Hi Ally,

     

    Only 90s? you lack ambition :-)  There's every reason you'll get there.

    Meds are just chemicals that have effects on your body - like vitamins, minerals, even food stuffs contain a myriad of chemicals - and the liver has evolved to efficiently remove them. Many of the long timers on this forum know that testosterone replacement is one of my pet interests, and I've spent many a nerdy hour reading the primary medical papers (e.g. http://www.ncbi.nlm.nih.gov/pubmed/2427455). In 6 years of monitoring patients that study found absolutely no change in liver parameters. I've yet to find any long-term concern on toxicity - the primary concerns appear to be (1) increased red blood cell count (haematocrit) leading to sticky blood, which is easily remedied in 10mins by donating a pint of blood (discarded) (2) increased chance of prostate cancer if there was an underlying propensity and hence the close monitoring of PSA levels.

    You're right that the metabolic paths for testogel and nebido are different - the latter is testosterone undecanoate and is metabolised by the liver, whereas testogel is directly absorbed (each sachet is 5% testosterone).

    Benefits of Testogel: Can vary the dose, matches a natural daily cycle

    Disadvantages: daily application and waiting for it to dry, wears off quickly (e.g. forget to take it on holiday)

    Benefits of Nebido: 10 weeks of action for 2hours of slightly sore injection

    Disadvantages: no daily cycle, no ability to adjust dosage during 10 weeks

    Greg