Going to see an endocrinologist. Suggestions on what to say?

[Clues]

I was referred to an endocrinologist by my GP/doctor. I've heard about two successful testosterone-related treatments, and I found this case study on the forum: https://www.sciencedirect.com/science/article/pii/S221444201930453X#bib1

I've taken loads of different blood tests before, but all have been normal. However my testosterone has not been checked AFAIK. So I feel like there is at least a chance this specialist may be able to help. However I'm worried he'll say he can't do anything or speculate because the causes for POIS are unknown. Any ideas as to how to present my problem? I'll definitely mention the paper I linked, but any other suggestions are welcome.

My symptoms etc described here: https://poiscenter.com/forums/index.php?topic=3180.0

[Simon66]

Firstly, I would get all of the male sex hormones checked, it's an inexpensive blood test that needs to be taken in the morning around 8AM. You want to look at Testosterone, SHBG, Prolactin and others. The endocrinologist will want to see these before prescribing anything.

Secondly, I would read up on the implications of taking testosterone. Personally, I think it is a sticking plaster for an underlying problem.

If your results come back normal then it's probably going to depend on the attitude of the endocrinologist. I wouldn't use the term POIS as they might class you as a hypochondriac who is diagnosing themselves. Just say that after orgasm you have all kinds of issues for a period of time which completely disrupts your life and you suspect it is related to some kind of imbalance. I've seen male and female endocrinologists, the male endo was a LOT more sympathetic and helpful than the women.

[demografx]

Personally, I think it [testosterone] is a sticking plaster for an underlying problem.

I agree!

[demografx]

Any ideas as to how to present my problem?

At my very first endocrinologist appointment (2009), I showed him Dr Waldinger’s first, original article on POIS, and pointed out that Dr W’s co-author is also an endocrinologist. On subsequent papers, too. It helped my credibility, especially back then, when there was almost nothing written or publicized about POIS!

[Clues]

Thanks a lot for your input guys.

Simon66, thanks for the info regarding blood tests. I would definitely do some reading before any treatment, but I'll wait and see what treatment he recommends, if any. It's about 4 months waiting time for the initial appointment, but once I'm in, I'm sure I can come in for follow-ups or treatments soon after (unless he decides he can't help me and/or that POIS isn't real).

Good point wrt being careful about referencing POIS, but my personal experience so far (with a GP and a urologist) is that they seem to acknowledge it's a real condition but they simply don't have a clue how to address it. And here in Norway especially, doctors seem to be very limited in what they can try in terms of experimental treatment.

About testosterone issues being a symptom and not the underlying problem: Yeah I agree that seems most likely, but my perspective is that a real understanding of POIS is a probably long way off, so symptom mitigation is probably all I can realistically hope for.

If anyone here has had any kind of testosterone-related treatment, what sort of treatment was it, and did it work?

[demografx]

If anyone here has had any kind of testosterone-related treatment, what sort of treatment was it, and did it work?

I’ve been using testosterone successfully for 10 years to treat POIS.

You can read my testosterone experience in detail at this testosterone thread:
https://poiscenter.com/forums/index.php?topic=17.0

[Clues]

Thanks demografx!

[Investigator]

I've tested all of the male gender hormones that a certain lab tests. One of these was "17-alpha-OH-progesterone" and it was the only one that turned out to be above the lab norm. However, when I have spoken with endocrinologists, they all say "Oh, I don't know what this would mean, we only check this hormone for women." But the lab does check it for men, too.

So, when you speak with the endocrinologist, and when you talk about checking all the male hormones, could you mention this along the way? "Should I also check 17-alpha-OH-progesterone?" or something like this.

On another note, don't mention that you've read anything on the internet. All doctors freak out when they hear someone reading "on the internet." Instead, say that what you know is based on conversations you've had with your younger brother, who is in 4-th year in medical school - or something like this. Or maybe your GP mentioned some stuff and you wanted to check. Come up with something, but "the internet" should be a taboo word.

[Nas]

I've tested all of the male gender hormones that a certain lab tests. One of these was "17-alpha-OH-progesterone" and it was the only one that turned out to be above the lab norm. However, when I have spoken with endocrinologists, they all say "Oh, I don't know what this would mean, we only check this hormone for women." But the lab does check it for men, too.

So, when you speak with the endocrinologist, and when you talk about checking all the male hormones, could you mention this along the way? "Should I also check 17-alpha-OH-progesterone?" or something like this.

On another note, don't mention that you've read anything on the internet. All doctors freak out when they hear someone reading "on the internet." Instead, say that what you know is based on conversations you've had with your younger brother, who is in 4-th year in medical school - or something like this. Or maybe your GP mentioned some stuff and you wanted to check. Come up with something, but "the internet" should be a taboo word.

Interesting investigator, it seems that OHP (hydroxyprogesterone) can play a role in Congenital Adrenal Hyperplasia (CAP): "A cortisol deficiency can occur in people who lack the appropriate enzymes, which can lead to a buildup of 17-OH progesterone in the blood. High levels of 17-OH progesterone can indicate a condition called congenital adrenal hyperplasia (CAH). CAH is a glandular disorder that results in the adrenal glands being unable to create sufficient cortisol" source

[Clues]

Thanks for the input Investigator. Cortisol sounds interesting, can a blood test show cortisol levels? Based on this I wouldn't be surprised if it's connected to POIS somehow: https://www.webmd.com/a-to-z-guides/what-is-cortisol#1

[demografx]

Interesting cortisol discussions. I just recently completed CT scans of my adrenal glands, found benign nodules/tumors which might explain my resistance to blood pressure control meds. Under supervision of a nephrologist. I also have high creatinine count. Kidney problems have been a mystery to me.

[Muon]

I just recently completed CT scans of my adrenal glands, found benign nodules/tumors which might explain my resistance to blood pressure control meds.

Mastocytoma?

[demografx]

Muon, you’ve always been way ahead of me on terminology. Not sure

[Clues]

I looked into supplements that potentially boost testosterone and came across D-Aspartic Acid. Has anyone looked into it or tried it? https://www.healthline.com/nutrition/d-aspartic-acid-and-testosterone

[Investigator]

My view on cortisol is that it is hard to measure - it changes dynamically during the day. For us, it is possible that it changes abnormally at some point after orgasm - who knows, maybe 1 hour later, maybe 5 hours later, or 1 day, or 2 days later. I checked it once, it was a morning cortisol, and was within lab range, but this doesn't really tell me anything.

I used to do lots of blood tests in my first years of POIS but then abandoned this, since even if I find something out-of-range, I would have no clue of the root cause. And without knowing the root cause, just improving the values of something is like pouring more and more water in a tank with a hole in it - it won't help.

[Muon]

Interesting cortisol discussions. I just recently completed CT scans of my adrenal glands, found benign nodules/tumors which might explain my resistance to blood pressure control meds. Under supervision of a nephrologist. I also have high creatinine count. Kidney problems have been a mystery to me.

They should do biopsies on those nodules to check for mast cell infiltrates IMHO.

"Increased risk for malignancy"

Table 1, Immunologic:

Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options

My mother told me once of someone in the second family line who had benign tumors on organs. They had to cut out parts of organs at one point in time but they kept coming back. He also was intolerant to sunlight.

[whateverestest]

Firstly, I would get all of the male sex hormones checked, it's an inexpensive blood test that needs to be taken in the morning around 8AM. You want to look at Testosterone, SHBG, Prolactin and others. The endocrinologist will want to see these before prescribing anything.

But when to make the tests in terms of O? after O? day after? 2 days? or maybe prior O and after and then compare?

Secondly, I would read up on the implications of taking testosterone. Personally, I think it is a sticking plaster for an underlying problem.

Sometimes I wonder if it is not psychological issue to be related as well here. Like for me. I posted a thread on interesting study I saw back in the days for the Oxytocine increased levels that caused social-anxiousness in male rodents that previously experienced childhood trauma. It's in discussion/reasearch section if you or anybody is interested.
https://poiscenter.com/forums/index.php?topic=3268.0

[whateverestest]

Firstly, I would get all of the male sex hormones checked, it's an inexpensive blood test that needs to be taken in the morning around 8AM. You want to look at Testosterone, SHBG, Prolactin and others. The endocrinologist will want to see these before prescribing anything.

But when to make the tests in terms of O? after O? day after? 2 days? or maybe prior O and after and then compare?

Secondly, I would read up on the implications of taking testosterone. Personally, I think it is a sticking plaster for an underlying problem.

Sometimes I wonder if it is not psychological issue to be related as well here. Like for me. I posted a thread on interesting study I saw back in the days for the Oxytocine increased levels that caused social-anxiousness in male rodents that previously experienced childhood trauma. It's in discussion/reasearch section if you or anybody is interested. Posting it here as I think it's related discussion.
https://poiscenter.com/forums/index.php?topic=3268.0

[Clues]

Here's an update guys. I went to see the endocrinologist. He's a professor of endocrinology and internal medicine.

Since I started this thread I've started suspecting more and more that my POIS symptoms are down to mast cell activation, and that orgasm is just another mast cell trigger. This is based on my symptoms matching extremely well with mast cell disorders, and my triggers mostly being common mast cell activation triggers, except orgasm.

The professor had heard of POIS, and after hearing the full list of symptoms and triggers, he agreed that it's likely to be mast cell related. I've taken a huge number of blood tests, including tryptase and lots of markers of potential secondary effects of mast cell disorders. I'll hear back on those in a week or two.

I really hope it's mast cell related as then at least I know what I'm dealing with. Honestly the orgasm thing is secondary right now, my main objective is to reduce my daily symptoms.

Huuuuuge thanks to Muon for raising the possibility of MCAD. I haven't confirmed it yet, but hey, it's the most promising lead I've had for years. And I've learned a lot about mast cells and inflammation while looking into it.

If anyone on the forum have confirmed MCAD or Mastocytosis or similar, I'd love to hear about what treatment you've gotten and how/whether it's worked.

EDIT: The plan at the moment is to test for Mastocytosis first. He said if the blood tests are all normal, it can still be a mast cell activation disorder though. In the latter case, he said one option could be to take Prednisolone, a corticosteroid, for a short period of time and see if symptoms improve. Would love to hear about any experiences with MCAD and Prednisolone.

[Nas]

about what treatment you've gotten and how/whether it's worked.
EDIT: The plan at the moment is to test for Mastocytosis first. He said if the blood tests are all normal, it can still be a mast cell activation disorder though. In the latter case, he said one option could be to take Prednisolone, a corticosteroid, for a short period of time and see if symptoms improve. Would love to hear about any experiences with MCAD and Prednisolone.

Oof, a corticosteroid, I highly advise that during your trial for this drug that you be highly sanitary especially in these trying times, since it will weaken your immune system. Hopefully when it turns out to be beneficial you can switch to a less side effects inducing drug.
Good luck!