Thursday, 3 March 2011

Not Alone

I've just had word from someone on the other side of the world of someone else with the same kind of syndrome as I have.

>80% similarity. Timing, weight loss, the works. Some minor differences, and we've got to check blood test results re lipids and androgens, but it's close, really close from the data we have already.

While there are less than 100 natural MtoF changes on record, none of them really matched what happened to me in 2005 (apart from the obvious MtoF bit). Not until now.

We'll be comparing clinical notes. With n=2, we should be able to get a far better handle on the biology of this syndrome.
at 3/03/2011 09:08:00 pm
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13 comments:

Nicole jade said...

Do you have an entry that explains exactly what happened in 2005? I'll admit I haven't read every word of your blog but all I've seen so far is, "A couple years back my body began transitioning itself from male to female." Actually, I'm going to keep looking more but perhaps you'll be able to point me to the correct spot quicker.

Friday, March 04, 2011 4:49:00 am
Unknown said...

Hope your find works out. Being unique in the world is ok , but I for one love company.
Dawn

Friday, March 04, 2011 7:59:00 am
Zoe Brain said...

Nicole - probably the best one to look at is Annus Mirabilis.

I posted that on May 4, 2006, exactly a year later. When it was happening, I didn't say too much - I wasn't certain of what was happening for one thing, and for another, not sure how much it was safe to reveal.

I stopped posting annual reports after Year Four, because the change was essentially complete, all bar the medical details.

It's just not a big part of my life any more. There's still minor aftershocks, but it's now something that happened, rather than something that's happening. It's slipped off my priority list of "things I have to think about today".

Friday, March 04, 2011 1:47:00 pm
M Italiano, MB BS (AM) said...

Hi Zoe, Adult onset feminization
is not that uncommon.
Here is just one example.
The # Beta HSD enzyme is complicated
and not uncommonly
results in adult-onset feminization. Sometimes
the gender identity is female.


Metabolism. 1993 Jan;42(1):65-8.

Partial 3 beta-hydroxysteroid dehydrogenase deficiency presenting as new-onset gynecomastia in a eugonadal adult male.
Cavanah SF, Dons RF.

Department of Medicine, Wilford Hall USAF Medical Center, Lackland AFB, San Antonio, TX.

Abstract
The postpubertal clinical presentation of 3 beta-hydroxysteroid dehydrogenase deficiency (3B-HSD deficiency) is less well-defined for adult males than for adult females, who often present with hirsutism. We describe a male with normal puberty who presented with new-onset gynecomastia at age 24. Common causes of gynecomastia were excluded. Dehydroepiandrosterone-sulfate (DHEA-S), estradiol, estrone, and 24-hour urinary 17-ketosteroid levels were elevated. A feminizing tumor was considered; biochemical tumor markers, chest x-ray, ultrasound of testes, and abdominal computed tomography (CT) scan were negative. Dexamethasone-suppression testing showed normal suppression of 24-hour urinary adrenal steroids. Cosyntropin-stimulation testing showed normal cortisol, 11-deoxycortisol, 17-OH progesterone (17-OHP), and aldosterone levels, but significant elevations of pregnenolone (preg), 17-OH preg, progesterone, DHEA, and androstenedione (A) levels. The sperm count was high and gonadotropin-releasing hormone (GnRH)-stimulation testing showed a normal increase in testosterone (T) level, suggesting that the defect did not involve the testes. It is concluded that this patient's gynecomastia is due to 3B-HSD deficiency with an associated alteration in sex hormone ratios. To our knowledge, this is the first well-described adult male with normal gonadal function presenting with postpubertal gynecomastia due to 3B-HSD deficiency. This defect may be a frequently unrecognized cause of gynecomastia.

Friday, March 04, 2011 6:47:00 pm
Phil said...

Here's some advice, Zoe. Start telling the truth. For anyone who knows the first thing about endocrinology your tale is laughable.

Saturday, March 05, 2011 11:37:00 am
Zoe Brain said...

Phil - take that up with Professor A.W.Steinbeck. The guy who wrote a few chapters in the standard works on endocrinology.

And the guy who diagnosed me with "severe androgenisation of a non-pregnant woman", on the grounds that that was the closest medical code that fit.

Any competent endo would know that there's an awful lot that's still "idiopathic". Even I know that - now.

Saturday, March 05, 2011 1:36:00 pm
Lloyd Flack said...

Phil,

Some of us were around at the time. Some of us had known Zoe for a long time beforehand.

For those of us who know Zoe well the suggestion that she would be making this up is what is really unbelievable. One in ten million or one in a hundred million events do happen.

You don't know what you are talking about.

Saturday, March 05, 2011 5:41:00 pm
Zoe Brain said...

Lloyd - just remember, you have an advantage over Phil in having been an eye-witness who'd known me for 30 years beforehand.

It's not as if there aren't plenty of witnesses, my colleagues at work for example. The guy who really got weirded out as he shared an office with me at the time is on FB, I'll give Phil his contact details if he wants.

It really *is* unusual you know. I can't blame anyone who didn't see it happen for being sceptical.

I hope they don't mind if I have a wry chuckle about it though.

Sunday, March 06, 2011 1:17:00 am
Lloyd Flack said...

Zoe,

Casually and carelessly calling a truthful person a liar is one of my hot buttons. I tend to come down on such behaviour like a ton of bricks. Especially if I think they are doing this so they can keep on believing what they find comfortable to believe.

Granted, in this case scepticism was not unreasonable but casual accusations of lying were. There are far too many careless accusations of lying made, especially in politics, and they have a corrosive effect.

Sunday, March 06, 2011 9:13:00 am
M Italiano, MBBS (AM) said...

HI Zoe, Adult-onset feminization has been reported and although is not common, may not be as rare as was thought. Here is an example due to 3 Beta HSD. This enzyme is
very complex in and of itself.

http://www.ncbi.nlm.nih.gov/pubmed/8446050

Sunday, March 06, 2011 5:56:00 pm
Laserlight said...

Phil....for anyone who knows the first thing, yes. The first thing you're taught is always a broad sweeping generalization; only later do you get to the details and exceptions and unexplained cases.
Zoe is an exceptional person in a number of ways.

Friday, March 11, 2011 3:30:00 pm
Zoe Brain said...

I have some extraordinary friends too.

Chivalry is not dead. Thanks, everyone, on more than one level.

Friday, March 11, 2011 8:23:00 pm
Stig said...

I feel compassion for Case #2 -- I hope she adjusts well and has loving support from those around her.

And, Zoe, I hope comparing files will bring you some answers.

Sunday, May 15, 2011 10:47:00 am

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