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04-02-2017, 11:18 AM #1New Member
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Nebido not working? estridol not being monitored? bloods inside
Hello,
I have been put on nebido by my endo but it doesn't seem to last for very long. Also my estridol levels aren't being monitored. I have some very light gyno naturally occuring from when i was a teen, i have been getting weird shooting pain in left pec, concerned gyno might be getting worse?
Anyway, here is the bloods.
this is before i started to treatment
Endo started me on nebido 1g once every 14 weeks, i felt awful at 12 weeks so had next injection then, this is bloods just before injection
started feeling shitty at about 9 weeks endo agreed to drop to 10 weeks, this is bloods after 10 weeks
had next appointment recently complained i was feeling lethargic etc she did bloods, dont have print out but at 6 weeks test level was the same as it was at 10 weeks.
So my t levels are crashing sometime at or before 6 weeks.
I requested to have my injection sooner but she has denied. I experience high e2 symptoms in second week, red face water renetion etc, requested estridol tested that was just ignored.
She has sent me for following investigations
diabetes inespidus testing - hmy blood plasma osmoality is 299, my urine osmolality is 1132, she suggested this means im dehydrated but i drink a fair amount of liquid.
short synacthen test - awaiting testing
genotyping - awaiting testing.
Is having this peak and then weeks for little or no testosterone going to cause me any health problems? (apart from feeling like crap) Should i be concerned my estridol levels arent being monitoried?
If all these tests come back negative and she wont reduce the frequency of investigation I am tempted to self medicate with a shorter ester and an AI, only issue is blood work, if my GP wont play ball there are no needle exchanges near me that offer bloods for steroid users. Private is very expensive but it seems i may have no other choice.
Apologies for spelling and formatting - not my strong point.
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04-02-2017, 12:41 PM #2
Have you had a pituitary MRI done?
LH/FSH were ridiculously low. Is nebido your first TRT treatment?
Diabetes insipidus just like suppressed FSH/LH in absence of exogenous steroids can be a sign of a pituitary tumour.
Actually, very low E2 can also mimic the condition, and that is a likely circumstances if levels fall low on nebido.
She-endos make horrible docs when it comes to male hormones. Get someone with a pair.
Trues gyno presents as an hard lump right behind nipples. You got lumps or just fat accumulation (pseudogyno)?
A brief E2 spike is likely to happen in the first weeks but can be tolerated.
Ever tested your total T at 2 weeks?
A possible do-it-yourself option can be to split nebido. You would still be doing 1g every ten weeks but splitting i.e. 500mg every five weeks, but this will be unwelcome by endos. Yet it's worth a try imo.
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04-02-2017, 12:46 PM #3
Forgot to say, are you also on thyroid meds?
TSH a tad elevated but enough for many ppl to feel unwell. Have you ever checked thyroid antibodies (AbTPO, abTG)?
Vitamin D3 levels are poor, supplement with no less than 5000IU/die.
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04-02-2017, 01:08 PM #4
First, like Biz asked above, why were you put on nebido?
From the initial bloodwork to me it seems it was due to steroids use. If it was not you have some serious problem in your pituitary.
Nebido is not a fast protocol it takes 3-4 injections for it to reach serum levels, so about a year. But its not very hard to read the instructions where it says that a 6 weeks booster is advised...
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04-02-2017, 01:08 PM #5
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04-02-2017, 01:15 PM #6
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04-02-2017, 01:25 PM #7New Member
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Yes I have had pituitary MRI done, came back as all clear, sinuses were blocked. Also had ultrasound of testes. she diagnosed me with hypogonadotrophic hypogonadism.
I agree with your thoery about low e2, that was my initial diagnosis as when is started pissing loads during last weeks of nebido cycle.
I do not have a hard lump behind nipple, just fat i think. Left one is bigger tho, possible musuclar inablance.
never tested total t at two weeks. The injection is administered by practice nurse, so not sure i could getting away with splitting it.
No thyroid meds. not sure about anti bodies. Have starteding more calcium and d3.
I have never used steroids . Started getting symptoms of low t in late tteens, saw various doctors and had bloods but they jsut said it was anxiety / depression. Only got t levels after i researched testerone and then requested test from GP. never had 6 week booster.
Not sure what the LH/FSH means, i was put on gels for 3 months before starting nebido.
Also forgot to mention GP investigating me for pancreas insuffiency. Had ultrasound which showed nothing, awaiting specialist appointment.
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04-02-2017, 06:49 PM #8
LH/FSH shows pituitary function. The MRI is to check for abnormalities (adenomas) that can disrupt it.
Hypogonadotrophic hypogonadism is just two big words for a shitty testosterone level.
When on any form of exogenous testosterone your LH/FSH should basically bottom out as your brain senses it does not need to produce them any more.
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04-02-2017, 07:06 PM #9
Last edited by hammerheart; 04-02-2017 at 07:09 PM.
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04-03-2017, 12:00 AM #10New Member
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04-03-2017, 03:27 AM #11Associate Member
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Takes some time; took me three to four shots to get things in order; i us to take it every ten have now extended to 13 weeks. I always ferl crap towards the end angry agitated and more tired. Its kind of part of the process; i take Armidex at the first couple of weeks; half a couple of times reduces the initail E2 spike. Stick with it; the short esters are a pain in the lobg term
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04-03-2017, 04:51 AM #12
At your age hypogonadism is caused by another cause. I would not settle for that diagnostic.
You showed us the wrong bloodwork. We need the bloodwork previous to be put on testosterone gels.
Did you had a late on-set puberty? Can you post photo of your hips and chest (without face)?
The bloodwork doesnt show anything pancreas related... What symptoms are related to it?
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04-03-2017, 11:37 AM #13New Member
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04-03-2017, 11:45 AM #14New Member
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Yes I think there is something more going on, still trying to figure out. perhaps the additional tests may reveal something, process is very slow though.
Had a dig around, found my earlyest bloods that were requested by my GP :
Actually started puberty pretty early, started getting hairy in year 6 around 11/12 years old. Am very tall 6ft6. Always had piss poor upper body strength / staminda, was always over weight too. more so once hit puberty.
pic of chest and hips as requested
Pancreas was investigated for complaints of bloating heartburn and nausea.
EDIT aplogies for rotated picture, it isn't like that in original not sure why its decided to rotate.
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04-03-2017, 05:15 PM #15
Ok, that bloodwork makes more sense being the initial, before TRT. Testo gel is a form of TRT, and will shut down your natural testosterone , and LH, completely, as the BW shows.
From what you told us so far, if had to guess, I would say that the hypogonadism could be from head or testicle trauma, or from severe illness or drugs. This probably happened in your mid teens, before puberty was completed.
Now, about the nebido, your doctor didn't prescribed the advised 6 weeks booster and that is why you are not satisfied. Still, nebido will take close to a year to reach steady levels. Also, the advised protocol claims starting with 12 weeks, not 14. Plenty of information on nebido.com, that you can print and show your doctor.
From your last set of bloodwork we can see that your body actually started trying to produce some testosterone due to a wrong nebido protocol.
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04-04-2017, 11:38 AM #16New Member
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05-13-2017, 03:28 AM #17New Member
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So it's been nearly 7 weeks since last injection and I feel like my t levels have totally crashed. No motivation , feel very depressed and more anxious than usual. Not seeing my endo again until September , she didn't give me any blood forms so mmwe will have no new data up on our appointment regarding my levels.
Im feeling pretty frustrated tbh I can't deal with feeling like this for 3-4 weeks every 10 weeks. Seriously thinking about self medicating.
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05-27-2017, 10:18 AM #18Associate Member
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05-27-2017, 01:54 PM #19New Member
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Seeing my gp soon will get some fresh bloods
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06-07-2017, 04:34 AM #20Junior Member
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I only will give my 2 cents for Nebido not lasting or not responding to it. In our local community (Europe) the sampling of Nebido users is quite high, since it's the preferred substance for trt. Beyond that there's usually only Sustanon or gels available as an alternative option. And with Nebido the problem OP is having, is actually surprisingly common.
We frequently see these type of cases, where metabolism is high and it "burns" Nebido much faster than it should - resulting as low end T values way too early. What's interesting is that this doesn't seem to change over time, and for most patients the situation lasts no matter if it's been a year or two years of using it. And yes, Nebido accumulates slowly, but there now are many cases where it just doesn't accumulate.
Then again, injecting Nebido in shorter intervals (every 8 weeks or so) usually resulting as better trough values, almost every time results as an excess hemoglobin too.
So bit of an dilemma for some.
What has helped me (and many others), was simply splitting it. I once made the calculations based on the pharmacokinetics and on paper it seemed to work. And when my fiancee is a pharma professional and works in one of the largest pharma companies, she confirmed my calculations. I then gave it a go and was one of the first ones to try.
I've been doing it now for three years and 1ml lasts almost three weeks for me, resulting as a mid-range trough T. So when I was previously injecting 4ml every 8 weeks, I was able to stretch 4ml to last 11 weeks by doing it a 1ml at a time - with way better trough value. This has also helped me in controlling the excess hemoglobin, and brought it back to the reference range. What's interesting, this protocol started to work immediately when before I always was at the low-end of the reference range already at week 8.
I understand that the guys in US say that you then lose the main benefit of it; only 4 to 5 injections per year, and that there's no reason to use Nebido that way. BUT in the US there are suitable alternative substances available for more frequent injections, which is not the case in Europe. We don't have cypionate or enanthate available, which of course would be the logical choises in this type of an situation.
So, if there's no other option, just split it. And find a doc that agrees to control your E2.Last edited by FakeLove; 06-07-2017 at 04:47 AM.
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06-07-2017, 08:12 AM #21
I have been more than a year on Nebido and didn't do much for me; reason was high SHBG coupled with inappropriate protocol (1g every ten weeks) that had me go through high and lows. It was an overall horrible experience and my blood counts struggled not to stay below range lol.
However, now after a year on test-e I do realize I won't ever feel stable on it (even on 2x weekly), what I do plan in the future is to use TU again and pin no more than every other week.
The SHBG, I've used low dose stanozolol (5mg/die) to keep it down, though it actually crushed it to <10 nmol/l which isn't good either and also the reason why I'm getting issues with my protocol I believe.
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06-07-2017, 09:36 AM #22New Member
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Thanks for the info guys
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06-28-2017, 12:10 AM #23New Member
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Had a phoen convo with endo yesterday. She said it would be best to try a different testosterone type, she suggested sustanon . I think from what I have read test E would be better, but I dont think its available in the UK?
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07-14-2017, 01:19 PM #24New Member
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Update:
Endo says cant have sustanon because im allergic to peanuts and its sustained in peanut oil. She has suggested going back to gels, but a different one called trosgen or something. Getting pretty fed up with this and thinking about self medicating.
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07-28-2017, 12:27 PM #25New Member
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Okay, so here are my recent bloods.....
This was taken 6 weeks. Seems to be slightly better than my last tests at 6 weeks and the positive benefits of the drug seemed to last longer this time. This would support theory that the lack of initial loading shot is responsible for me not maintaining high enough T levels.
Also here are some better pics of suspected gyno, endo has referred me for ultrasound to confirm.
Also found this on the nebido website :
It is advisable to reduce the interval between the first and second administration of Nebido® to 6 weeks. With this loading dose, sufficient steady state testosterone levels may be achieved more rapidly. After that “loading interval”, further injections should be given in intervals of about 12 weeks. Measurement of serum trough testosterone levels and clinical symptoms should be considered for individualization of therapy with Nebido®. Serum trough testosterone levels should be in the lower third of the normal range. Serum levels below normal range would indicate the need for a shorter injection interval. In case of high serum levels an extension of the injection interval may be considered. The injection interval should remain within the recommended range of 10 to 14 weeks.
The first injection interval is shorter so that the sustained active drug levels are reached more rapidly and the shorter interval at the beginning of therapy will make sure that testosterone levels are normalized quickly which will ensure fast alleviation of symptoms and complaints.
This shorter starting interval is advisable for every patient, regardless of whether the patient has already used other testosterone preparations or not. It is advisable that patients switching from shorter-acting testosterone injections (such as Testoviron ®, Sustanon ®) receive their first injection of Nebido® at the time point when their usual testosterone injection would have been due.
I intend to ask why I wasn't given a loading shot. Is it likely that being unable to keep high T levels and having weeks where T is dead then getting a spike again is responsible for gyno? As the E2 remains elevated while the T levels drop off?
Hopefully I can get some answers and proper treatment, I'd really like to know the logic behind starting me on 1 injection every 14 weeks.
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07-28-2017, 05:47 PM #26
Suspected gyno? Are there lumps behind nips? They just look a bit puffy from pics but can be from low Test.
Most guys will need to show the info on the leaflet and ask for a booster, only the rare, savvy docs will on their own.
Can't you get the interval down to 10 weeks and a booster since your levels are still that low?
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07-28-2017, 11:59 PM #27New Member
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No limp behind nip but left one is changing shape , area below and left of nipple getting bigger causing nip to point up and outward more.
We have dropped it to 10 weeks already , still tanking out at about 6 weeks, though it does seem to be very slowly improving.
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07-29-2017, 09:58 AM #28
That's not gyno but might prelude to it.
It doesn't necessarily mean an absolute excess of E2 exists, low T alone could be a trigger, as androgens antagonize the growth of mammary tissue.
That's really slow improving. About self-medicating, there is one "trick" you can try before attempting that way, and that is to split the 1g pin of nebido into two 500mg pins every five weeks, and see if that is enough to keep acceptable through levels.
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07-29-2017, 11:19 AM #29
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07-29-2017, 12:58 PM #30
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08-05-2017, 11:56 AM #31New Member
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What is your current TRT treatment?
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08-05-2017, 05:36 PM #32
It's pretty a mess atm as I'm experimenting with dosages and using hormones different than Test,
but it's enough saying in terms of muscle mass I've been able to restore my natural, genetic preset with high-end TRT (200-250mg weekly), enough protein and rather light training. I've also been using anabolics that are supposed to be much stronger than Test but I haven't experienced any growth with them.
One doesn't need that high dose of Test for maintaining/developing muscle, really. I don't have much more than I used to before TRT or even in my teens.
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08-17-2017, 11:02 AM #33New Member
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Hi guys, just a little update.
Had my ultrasound today, performed by a doctor. He said theres signifcant fat on both breasts and a bud has started to from on the left one. I explained the issues I had been having with nebido and he said I need to get T levels under control to prevent further gyno from forming. I have an appointment with endo in november but will be trying to get a phone converstaion in the meantime and ask why I wasn't give the loading shot and if its still possible to get one. I think if i don't get a good response I'll start looking into putting my own TRT treatment plan together.
He also had a look at my CT scan results of my pancreas and said it all seems to be normal. I asked why I had pancreas insofficiency but my pancreas was normal (also mention pituitory MRI was normal) and he suggested it could be an auto immune response attacking the cells, which would make sense why i have no T levels but pituitary and testicles appear normal.
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08-26-2017, 04:09 AM #34New Member
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09-02-2017, 03:57 AM #35New Member
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TBH it for me its more about feeling good. I just have brain fog, total lack of motivation and feel fucking shattered all the time. I'm seeing my endo soon and i'm going to drop the threat of self medicating. Also going to float the idea with my GP and see if he'd be willing to do bloods. Really sick of feeling shattered all the time.
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09-02-2017, 04:45 PM #36
I have the very same thing at heart and it is to feel back to normal myself. I used to be rather brilliant and intellectually productive but it's just not the same after I developed low T and got on TRT.
It's not self-medicating if you just adjust some parameters according to the way you respond to it. It's just an adaptation the way I look at it.
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