Adrenocortical Hormone Abnormalities in Men with CP/CPPS

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Dr. D - I would bet most of us have been walking around (trying not to sit too long :) ) doing a lot of thinking about this possible CAH connection. It's fascinating! Thank you so much for your tireless work!

I'm definitely checking with some folks at Johns Hopkins to see if I can get tested for the enzyme deficiency (any suggestions of people in the mid-Atlantic?). I have found that the Stanford/Wise-Anderson Protocol/pt route has helped me to a point, and that I'm still missing a certain piece - perhaps this is it (and believe me I understand that this is VERY preliminary research and I shouldn't get my hopes up too much)?

A friend of mine who is going through another type of chronic pain shared with me a really supportive thought today - he reminded me that the very side of me (and him) that makes me stressed and obsessive is the same side of us that is the analytical, inquisitive, and excited about the world around us - it just goes on overdrive and loses site of the moment - it's not bad to be this invested in life - it's just how one uses that energy --> as stress or as fuel to enjoy and learn about this life. I'm looking at this new finding as something not fixate on, but something to be curious about and excited about the hope it potentially provides...

Thanks for all of your hard work! I'm interested in Carld's question as well - any specific tests you would recommend for patients to ask their doctors about? My understanding is that if we do prove to have classifiable nonclassic CAH that it is somewhat treatable - whether that helps our CPPS or not remains to be seen, but I'd be happy to see! I suffered with TERRIBLE cystic acne as a teenager - and like many of us on this board, took ACCUTANE to get rid of it (I think there's a whole threat on ACCUTANE on here) and have had constantly dry skin since then with the occasional cystic acne outbreaks (weirdly enough on my pelvis). I certainly have the anxiety and depression portions of the late-onset CAH symptomatology, though not many others that I know of...

All the best!
Ami (like tommy without the t)

[J Dimitrakov]

Just discovered this post, looks promising

Hats off to Doc D, cheers doc, I for 1 would give anything just to know what causes the condition, maybe it is a case of just clenching muscles, but for example I would get spasms all over my body at random times arms legs etc. I am also quite regularly getting spasms above the eyes, so this leads me to think there is something else wrong ie a deficiency perhaps, which is basically all it sounds like with out the medical mumbo jumbo?

I would quite easily drop everything i've got, if you need an assistant doc (lol, I make a mean cup of tea). Anything for hope..........instead of

The Stanford/Wise-Anderson Protocol has taken me so far and I dont regret it for 1 second. If this was the final piece happy days (its hard not to get your hopes up).
I will be making an appointment with my doc to see if it is possible to get put on the waiting list to get tested for this .... at least then if it does get proved I don't have to wait another 3 years....grrr

Again doc, cheers for your research and your interaction on this forum along with everyone else, your are 1 in a billion literally.

Dear inflamed,

First off, I hope you are not that "inflamed" any more.

Second, thanks for your kind words. I have actually started an educational program at Harvard Medical School where I try to educate medical students about CPPS. There's no funding for that sort of activity right now but the passion and enthusiasm of the students is really amazing. Last summer, I had one medical (Harvard) student and two high school students that I helped us with the research. The father of one of the students actually quite generously paid for the student's housing and living expenses just so he can be immersed in our environment. I think this is the best investment a parent can do for their children!

Anyway, your post is extremely interesting in terms of your symptoms. The "spasming" and related symptoms are, in my mind, part of the picture of CPPS and we are just learning more about this. I have seen several other cases with similar symptoms and we are studying those patients right now. All I can say is that there appears to be a neurologic abnormality which is quite intriguing. Stay tuned....

And best of luck,

Best,
JD

[J Dimitrakov]

Dr. D

I get my yearly physical in May....What test should I specifically ask for to test my AH levels?

Would a regular doctor be able to test for this?

Does taking a nasal corticosteroid like Nasacort effect any testing for this?


Regards...

Hi, Carl,

What does "AH" stand for? "CAH" is "congenital adrenal hyperplasia" but the putative missing enzyme is CYP21A2. I don't think you can request that test as part of a yearly or any other kind of exam.

Regarding your second question, this test is usually ordered by endocrinologists (unfortunately, many endocrinologists doubt the existence of nonclassic CAH, so, they might be reluctant ordering the test). My colleagues tell me that using our technique for testing a single person for all 12 markers we evaluated would cost around $10,000

Regarding your third question, yes, taking ANY kind of steroid would influence the test result.

I need to make another clarification here.

PLEASE READ: Our study evaluated the levels of proteins using a technique called proteomics. In the published paper we DID NOT LOOK FOR CYP21A2 MUTATIONS AT THE GENE LEVEL. This is part of an ongoing study and will be the definitive test for CYP21A2 deficiency together with another diagnostic test we describe in the paper. It is quite possible that some CPPS patients will have genetic mutations, other will have a normal gene but a defect in the translation or protein (CYP21A2) function. Different tests are used for those three possibilities - namely, a defect at the genetic level (mutation), a defect at the protein translation level and a defect in the configuration of proteins. I urge caution and extreme care when rushing to request tests and interpreting those results.AT THIS TIME, TESTING FOR CYP21A2 IS NOT A DIAGNOSTIC TEST FOR CPPS

Best,
JD

[J Dimitrakov]

Dr. D - I would bet most of us have been walking around (trying not to sit too long :) ) doing a lot of thinking about this possible CAH connection. It's fascinating! Thank you so much for your tireless work!

Thanks for all of your hard work! I'm interested in Carld's question as well - any specific tests you would recommend for patients to ask their doctors about? My understanding is that if we do prove to have classifiable nonclassic CAH that it is somewhat treatable - whether that helps our CPPS or not remains to be seen, but I'd be happy to see! I suffered with TERRIBLE cystic acne as a teenager - and like many of us on this board, took ACCUTANE to get rid of it (I think there's a whole threat on ACCUTANE on here) and have had constantly dry skin since then with the occasional cystic acne outbreaks (weirdly enough on my pelvis). I certainly have the anxiety and depression portions of the late-onset CAH symptomatology, though not many others that I know of...

All the best!
Ami (like tommy without the t)

Hi, Ami:
I actually presented those results at the Urology Grand Rounds at Hopkins last year and the findings generated a lot of enthusiasm. I also had the honor of discussing them with Dr. Donald Coffey, the patriarch of urologic research who gave me some very interesting suggestions.

As you might know, Dr. Coffey actually created the experimental model for studying BPH. How do you study BPH? Well, the only appropriate animal is a dog (same prostate structure as the human). And how do you induce BPH in a dog? Guess what, excessive amounts of steroids given as intramuscular injections CAN actually induce BPH in a dog.

What does it all have to do with your acne etc? Well, I can't really give you an opinion over the internet and cannot recommend any tests. But recent data suggests that only about 1/3 of men with BPH do actually have an enlarged prostate. What do the other 2/3 have? Well, difficulty urinating (even though the prostate is normal in size), burning, also frequency and urgency. I suggest you wrote the letter I wrote as a comment to the Saw Palmetto study in the New England Journal of Medicine last year (PDF should be available for free).

Anyway, there's definitely an interplay between steroid hormones in the body, the prostate, and CPPS symptoms. Classic studies in neuroscience and drug addiction actually show that CRH (corticotropic releasing hormone), the key regulator of steroid levels in the body, is actually a key regulator of anxiety, resilience and vulnerability to stress.

Hope all this is helpful .... might sound confusing but I am not able to give specifics

Best regards,
JD

[ramana]

Hello again Dr Dimitrakov,
Well I went to a third doc (I see a 3 docs in a week) with the abstract of the paper and she found it very interesting .The problem is that they want to see the entire paper to provide an opinion on testing (I understand your comment on not to use this as a diagnostic test). How much time does PubMed take to process. Is there any other way e.g does Urotoday have the entire paper?

[webslave]

http://pubmed.ncbi.nlm.nih.gov/18308097

It was published in the February edition of Urology. You can see it at a large local library (call them first to make sure they have it — you may have to view it online at the library).

Or you can buy the PDF online here
http://journals.elsevierhealth.com/periodicals/URL/home

[J Dimitrakov]

http://pubmed.ncbi.nlm.nih.gov/18308097

It was published in the February edition of Urology. You can see it at a large local library (call them first to make sure they have it — you may have to view it online at the library).

Or you can buy the PDF online here
http://journals.elsevierhealth.com/periodicals/URL/home

Correct. In accordance with the recent NIH policy, it has been deposited in PubMed Central (an archive of full-text biomedical journal articles available online without a fee.

Effective April 8, 2008, all NIH-funded research should be deposited in PubMed Central and publicly available in accordance with publishers' copyright policy. More information is available here

http://publicaccess.nih.gov/index.htm

I assume everyone should be able to access our article freely on PubMed Central soon (as I said, I will post an announcement when I get notified)

Best,
JD

[inflamed]

Dear inflamed,

First off, I hope you are not that "inflamed" any more.

Second, thanks for your kind words. I have actually started an educational program at Harvard Medical School where I try to educate medical students about CPPS. There's no funding for that sort of activity right now but the passion and enthusiasm of the students is really amazing. Last summer, I had one medical (Harvard) student and two high school students that I helped us with the research. The father of one of the students actually quite generously paid for the student's housing and living expenses just so he can be immersed in our environment. I think this is the best investment a parent can do for their children!

Sounds like a smart father...... I sometimes wish I had gone down the medical career root so I could try and cure myself, but reckon this would just be as frustrating as CPPS but at least I would be doing my all. I am going to the docs tomorrow, but from what you are saying sounds as if I am wasting my time as regards getting tested. I think I might try some Elavil as a backup as I haven't been down this route before.


all the best

[ramana]

By any chance does vitamin D deficiency have to do anything with 21 hydroxylase deficiency.I googled and there is some relation http://www.medic8.com/genetics/21hydrox ... ciency.htm but not clear how.
Any insight appreciated

[J Dimitrakov]

By any chance does vitamin D deficiency have to do anything with 21 hydroxylase deficiency.I googled and there is some relation http://www.medic8.com/genetics/21hydrox ... ciency.htm but not clear how.
Any insight appreciated

Hi, Ramana,

No, vitamin D does not have anything to do (causally) with 21-hydoxylase deficiency. Vit D has a cholesterol-like structure and cholesterol is the starting block in cortisol synthesis.

hope this is helpful

Best,
JD

[inflamed]

Ok I went to the docs, and showed him the research, I didn't expect anything other than pointing me in the right direction...

In not so many words he basically said 'what did you come here for?'. He told me to go and see a urologist. Does anyone with knowledge of the NHS know if this is any use. I thought for this sort of thing I needed to see a Endocrinologist.

[J Dimitrakov]

Ok I went to the docs, and showed him the research, I didn't expect anything other than pointing me in the right direction...

In not so many words he basically said 'what did you come here for?'. He told me to go and see a urologist. Does anyone with knowledge of the NHS know if this is any use. I thought for this sort of thing I needed to see a Endocrinologist.

I am not familiar with the intricacies of the NHS system and not sure I can help here.

Good luck,

Best,
JD

[Rufus]

Dr. New does not work with adults...

[J Dimitrakov]

Dr. New does not work with adults...

Sorry to hear that. Our study recruiting patients with CPPS for RESEARCH testing will shortly appear online

Best,
JD

[ramana]

I wonder if anyone else on the board has been made ANY progress in getting the testing done in line with that described in the paper. As posted earlier - the docs that I go to read through the paper and were very interested and were also asking more questions. But one by one all the leads seem to have died down. As my PCP put it - it appears to be complicated.