High Testosterone with Cirrhosis!!

[Trewargas]

Hi.

My testosterone levels have been increasing steadily over past 18 months. They are now well over twice highest expected "normal range" levels for men.(I haven't included the numbers as I'm not sure if we are meant to here?)

Anecdotally, this has coincided with increasing, and on bad days, debilitating pain in the region of my upper kidney/side area.

My GP doesn't have "enough knowledge" in this area, his words not mine.

He initially suggested my Spironolactone and Furosemide were probably the culprit, but following a little research he realised the opposite was actually true.

Also, he eventually realised testosterone levels would actually be expected to be low in cirrhotic males.

He agreed to make an endocrinology referal, but I was told it could be in excess of 4+ months to see anybody.

The GP did say that in men, the testes and the adrenal glands are areas where testosterone is/can be made.( in my ignorance I had not heard of adrenal glands)

So my question is there anyone with experience in this area that can offer any information, insight or experiences in relation to this matter?

Thank you.

[Dromide]

Hi, you may find that, despite having a high total testosterone level, that your free testosterone level is in fact low. Testosterone is bound to Sex Hormone Binding Globulin, which sort of releases it into the system. SHBG is often very raised in cirrhosis, so all the testosterone is bound up to it, and very little is free for it to perform its physiological function. You should try and obtain an SHBG and imputed free testosterone assay. Spironolactone has oestrogenic effects, but takes a long time, if ever, to suppress testosterone production, which can ramp up in the presence of spironolactone in an attempt to keep homeostasis . All of this is not well understood by many teams.

[Trewargas in reply to Dromide]

Thank you Dromide for your informative response. I found it very interesting and something my GP certainly didn't talk about.

It gives me something to ask the endocrinologist when I eventually get to see him/her.

Can I possibly ask, do you have personal experience?

Also can you suggest a reliable source for further information etc?

Once again, thank you.

Richard.

[Dromide in reply to Trewargas]

Hi, I have recompensed cirrhosis mainly due to alcohol. I had a large variceal bleed in October 2022. My free testosterone is extremely low, off the bottom of the scale. My total testosterone is above the normal range. My SHBG is extremely high. I’ve had to look into all of this myself, as it is not part of the NICE guidelines for monitoring cirrhosis (which I have no complaints about-I get all my checks, etc.), but I think it’s quite difficult to engage the services with anything outside of the guidelines. I am a retired consultant psychiatrist who has in the past run an alcohol service, and took a great interest in endocrine problems in psychiatry in general. Most of the above is from my refreshing and updating my knowledge since my diagnosis. I would hope that the endocrinologist that you see would be au fait with things. A four month wait is not too bad.

[Trewargas in reply to Dromide]

Thank you so much for sharing some of your considerable knowledge and expertise on this matter. It's a great help to have some information whilst I wait for my endocrinology appointment.

Before I became ill, I was in education, so finding out "the facts" concerning a particular situation has always been important to me.

I wish you well on your on-going journey with your health.

Thanks.

Richard.

[Dromide]

Thank you for your kind wishes. I’m glad to have been of some help. I hope you have a satisfactory consultation with the endocrinologist, and good luck to you on your journey too! Oh, lastly, it would be great if you could share any thoughts following seeing the endocrine specialist!

[Trewargas in reply to Dromide]

As I intimated, knowledge can begin to help me/one feel empowered when trying to fight this disease, even if it's just a little bit!

Correspondingly, that can certainly also help improve one's mental disposition as well.

I'll make sure to post an update after the endocrinology consultation.Once again, thank you.

Richard.

[Posh180 in reply to Trewargas]

Hi Trewargas,I don't know anything about testosterone levels, but furosemide can hurt kidneys, but spironolactone takes fluid out the body differently.