General questions about how PFS presents

Hi there, been living with PFS for almost two years now.

Original member story here:

I’ve been trying to work through this forum on what the consensus seems to be about this condition. A few questions I’ve been trying to understand:

  • What are the typical hormonal profiles of PFS sufferers? Is anything normally high/low etc?
  • Do PFS sufferers always respond negatively to increases in testosterone?
  • Are big hormonal fluctuations normal for PFS sufferers?

A few notes about what has been going on for me:

  • After my crash, and after I got off clomid/anastrazole - my body appears to be self regulating towards very low T and E. I’m 31 years old and after my crash, my T measured at the very bottom of the range. 8 months after I stopped clomid/anastrazole, my body is gradually trending towards the very bottom of the range again. Symptoms are increasing as my body heads towards lower and lower T and E.

  • While on Clomid/AI I found therapeutic benefit in it during periods when my E probably wasn’t sky high. Is it unusual for PFS patients to response well to TRT or clomid therapy or par for the course?

Cheers friends and thank you for the help as we all navigate what our best next steps are.

Hi @Mayflower

If you haven’t already, I’d suggest reading axolotl’s literature review about the condition here. It’s quite heavy on the science, but well worth the read.

The simple answer to all of your questions is that there is no typical profile for how PFS presents. There is so much variability in the symptoms experienced by patients, the severity, the onset for symptoms to appear, and how patients respond to different treatments. Most patients do seem to have quite normal hormonal profiles - mine for example indicate that I’m perfectly healthy and pretty similar to pre-PFS hormonal profiles - but I have seen cases of patients with levels at the low end of the “normal” range.

Anecdotally, many patients who experience temporary recoveries or symptomatic relief do so after taking anti-androgenic substances.

I also noticed you haven’t completed our patient survey yet. When you get the time, could you please do so here? It’s very helpful for our efforts with researchers, and also to provide insights into some of the questions you’ve just asked.

It would be greatly appreciated, thank you!

Thanks @Sugarhouse. I got half way through it this morning and will complete it. Apologies for being derelict in getting it done and dusted.

I felt improved while on therapy and I’m hoping that there is a path for me on therapy. Just personally afraid of doing more harm to myself with addition medications which play with one’s hormones.

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Not a problem man, it’s an easy thing to forget when we’re all in such poor health. We appreciate it greatly.

To address your question about PFS sufferers response to increase in testosterone, I came across this post

TRT therapy - positive results on the whole but negative views held by forum members

It includes a posters compilation of TRT results for different PFS sufferers on forums. I didn’t review the compilation and wouldn’t use it as a scientific guide by any means but it might be interesting to look at regarding your question. The comments are a clusterf… as usual lol but interesting and debate your very question. So I wanted to share.

I wish we could answer these questions more definitively but the research doesn’t seem to be there yet. One day maybe. Lots of love brother