I’m quite glad I found you guys because I thorght I was on my own.
I was diagnosed with a prolactinoma when I was 22 (26 now) and was put on to trt (testogel 50mg a day) almost immediately after I started Cabergoline.
I have been feeling semi ok with an “ok” sex drive but I feel ok in myself (when I’m not thinking about low t)
Over the last few months I’ve noticed a dip in my sex drive (only wanting something from my GF if she offers kinda thing, 1 time a week)
I informed my endocrinologist of this and he boosted me up to 80mg of testogel, i feel a little increase but it’s only been a week.
Here’s my question,
My endocrinologist told me that my prolactin levels are at a level where I can come off the testogel and see if my balls tick back into action and boost my levels.
I remember seeing a year or so ago that my levels of testosterone were quite low 2 years after starting with testogel 50g trt (250ml or something) so I would like to try this.
What are the side effects of coming off trt for a trial, and how long would it take for the boys to kick in?
They have shrunk more than a little
I’m afraid I don’t have my levels to hand, but I know my fis and lh were low (but could this be from the trt)
At your age, there should have been a discussion about fertility and you should have been injecting hCG to preserve your testes while on TRT, or hCG alone could have been your TRT.
Only 10% of transdermal T products is absorbed at best and that makes it expensive. Self injected T is least cost and 100% delivery.
Get and retain your labs.
Post lab work here with ranges. Everything, not just T.
You also could have been on caber only from the beginning.
Your doctor(s) are incompetent, this is malpractice.
Get this done:
Post labs and ranges
Use anastrozole to get near E2=22pgml, try 1/2mg twice a week
Start self-injecting 250iu hCG SC/SQ EOD - advice for new guys explains terminology
You still are on T, hCG is starting to recover your testes
Later you can deal with restart.
You need to understand that 4 years on TRT without hCG may have damaged things. So you can only try.
Endocrinologists do really dumb things all of the time.
More testogel will increase E2 and that may be your problem.
How are energy levels?
Hope that you are using iodized salt to get iodine needed to make thyroid hormones.
This time of year you could be Vit-D3 deficient.
You have a serious amount of reading to do because you cannot be passive and have a doc do this kind of shit again.
This is extremely worrying on my part due to myself being in the UK NHS and there only being testogel and nebido on offer (unable to go private).
I have never heard of iodized salt, I am not taking that at the moment, my thyroid levels are said to be ok for my age.
I will be doing a lot of reading, I am in a long term relationship and we were thinking of having children in the next 3 years
What are they chances of my testosterone coming back when I come off trt? I have secondary hypogonadism and feel I had normal levels before my prolactinoma. My endo said that if I come of testogel there is a chance that my levels will go up on their own… What are the chances of this? Is it possible?
I am needle phobic and have huge anxiety (due to this).
My doctor has me take blood tests every 10 months at best and I rarely see results. I will be asking for the full results at my next appointment (March).
My energy levels are not too bad, I usually have the most energy when out and about with people and I don’t get tired easily.
I really wasn’t feeling crazy bad at all on testogel for 4 years (I actually had quite a high libido untill recently.
I have done some reading and this seems very complicated, I know the injections and things aren’t available on the NHS, I feel completely stuck and very worried.
If hCG injections do not increase your T levels, then total recovery is not expected. It would take time for testes to recover size and function. Do not let doc give you a 5000iu test dose of hCG, that is wrong for several reasons.
There are millions who are injecting insulin with tiny needles. You can inject T and/or hCG the same way.
You could self inject nebido in small doses to get steadier levels.
If you are in the UK and do not consume a lot of dairy products, you are iodine deficient. Many parts of the world use iodized salt. Iodized salt is available there, may take some looking about.
Do not overlook Vit-D3. Widespread issue in your climate. Vit-D3 converts to Vit-D25 which is a hormone that is mission critical to your health.
Maybe the energy levels of your mates is not what you should compare too.
When you state that your are not aware of some of the issues that I bring up, it really is showing shortcomings in health awareness that also reflects on failings of UK health systems as it is part of their mission to create awareness.
Thank you for your reply, I have an appointment with my endocrinologist in March (trying to move it forward), I will not be passive and will ask to be put on HCG injections.
Ive ordered iodized salt for myself and my girlfriend, thanks for the heads up.
I am currently on growth hormone injections, those injections are painless and easy to administer, it’s good to know its not a huge issue.
Can I inject into my stomach?
I will keep you guys updated with labs etc when I get them.
Try to get 5000iu Vit-D3 tiny oil based caps. Take 1 per day, take 25,000iu for first 5 days.
Does she get cold easily?
Women need more iodine then men. Iodine is stored in breast tissue. Breast tissue can become abnormal without iodine. Fibrotic breast disease [FBD] can be fixed with iodine or thyroid hormones. fibrotic breast disease iodine - Google Search
Because women with FBD can have improvement eliminating coffee, that has been a distraction as that lead people off of the path to the cause.
Iodine in breasts deliver iodine to nursing babies. Iodine is critical to brain development and iodine deficiency in early can lead to metal retardation.
In the protocol for injections sticky, injections with #29 0.5ml 1/2" insulin syringes suggested in belly fat or over quads where you can better see and avoid surface veins.
GH deficient at your age… Rather odd or long before?
I use GH and was injecting IM and IGF-1 results were poor compared to when I used GH at a prior time. Switched to SC and IGF-1 levels were as expected. IM and SC deliver the same GH, same area under the curve. But SC is slower release. Fast release is more than the liver can process to IGF-1, better for slow release so liver is exposed to GH at a lower level for longer time. So SC maximizes IGF-1, at least in my old body.
Yup, I was diagnosed with gh deficiency a few years after my prolactinoma, that’s what caused it.
Yes, I inject gh SC every day no issues, my levels are where they should be.
Thanks for the vitamin D advice, that seems to line up with what I was given.
I am quite hopeful the hcg injections will work for me. When I had my prolactinoma with high prolactin I still had quite a high sex drive… My sex drive has only dipped recently (slow decline) as my balls have gotten smaller due to trt.
Do you know how I had a high sex drive when the prolactin was suppressing my testosterone? Does this increase the chances that the hcg will work to restore my testosterone levels (and later a restart)?
Do you know what I should say to my endo to get the anastrozole? What if he doesn’t even know what it is?
It really says something that I have got more advice from yourself than my endocrinologist, you have been a great help so far.
You could do E2 labs on your own and have that ready when you see doc and get Rx then and there.
Or ask for E2 labs by phone to have done for your next appointment.
If your endo does not know what an aromatase inhibitor is, you need a new doc.
At what point does testogel become too expensive?
hCG can bypass pituitary problems and get testes working. If pituitary is damaged, it may not be recoverable.
The max testogel someone can be given in the UK is 2 satchets (10g) a day.
This is what I am taking (now on arms/shoulder rather than belly).
I have been looking around and it is very unlikely that I will be given low dose hcg, the NHS only give high dose hcg for fertility… Would clomid help in my case (prolactinoma)?
I would say not as it would then be used to treat that condition. But stimulation of LH/FSH in the pituitary can be expected to have some knock-on effects on other pituitary hormones as we see with PCOS.
I was under the impression that clomid sort of worked like hcg and would
help my testicles to make testosterone, my endo said we would look into it
but he didn’t get back to me.
Just to update yourself with my situation, I am still taking 10g of
testogel and I have been feeling a little strange. I have been feeling
lower than I was at 5g but I really want to give it some time.
The jump from 5 to 10 gave me a boost sex drive but not much else, of
anything I feel weaker at the moment 2 weeks into bumping 5g to 10g.
I have a appointment with my endocrinologist in March like I said
previously, if I am still feeling like I do then I will ask to switch to
something else.
The treatments available here on the NHS are limited but the ones offered
to me have been testogel, tostran and nebido (every 12 weeks) .
I would much rather go onto test e or subq and I will put this to his, but
I doubt he will give it to me… Is there any way I can push?
LH tells testes to make T
hCG acts like LH
SERMs cause hypothalamus&pituitary to make LH+FSH
Your T-gel 5gr–>10gr probably has increased E2 and E2 is creating negative effects.
You would want to test E2 -estradiol- and ideally use anastrozole to get near E2=80 pmol/L
Transdermal T has the largest T–>E2 potential because of T concentrations on skin and the large surface area of skin. Injected T has the least T–>E2 potential.
A reminder that thyroid problems often mean that one does not absorb transdermals very well and T levels can be low, but oddly, E2 still elevates.
Ahh that’s not the best news, I’ve been on testogel for quite a while now.
Would it be wise to come off the testogel completely for a few weeks and
see if my own levels kick in? My endo said there was a possibility this
would happen but I didn’t want to come off the testogel.
My prolactin levels have normalised, I think my lh/fh levels were ok
before I started testogel.
If this doesn’t happen then is nebido a good choice?
Thank you for replying, you really know your stuff