Fatigue, Low Libido, Poor erections - 1 year on

[Andromeda]

Its now a year since I started coming to these forums and in that time I've been actively trying to find the source of my problems mentioned in the title of this thread to no avail, however I have new hope... Recently I was finally able to convince a Dr that I should have an MRI to rule out any brain or pituitary problems. I had a visit with a new endocrinologist to review the results of this MRI and low and behold:

It turns out my pituitary appears fine, and theres no other problems that might be expected of someone thats taken a few knocks to the head in early childhood including a fractured skull. However as I explained to him my history, he came to the conclusion that somethings not quite right, and he believes it relates to the actual synthesis of cortisol in my body. That is, he suspects I have the non classic form of CAH, whereby theres an enzymatic problem in creating cortisol.

He came to this notion after I explained the following key points:
(1) Delayed puberty (started at 15.5)
(2) Severe acne from puberty to current (worse in the last couple years even though im 26 now)
(3) Severe fatigue after physical exertion such as gym
(4) Occasional fainting or near fainting episodes
(5) Finding myself able to function so much better at work and in life when I started Hydrocortisone therapy
(6) Blood tests that show high progesterone and DHEA levels (slightly above ref. range)

So he's given me a blood test whereby they do a Synacthen test and simultaneously measure two key enzymes involved in CAH - Deoxycortisol and Hydroxyprogesterone

Now I'm looking to get your thoughts on how likely it is that I have this condition, and what measures I can use to make my life more bearable if I do indeed have it..

I've done a bit of online research using resources such as this little pearl of wisdom here: http://www.aafp.org/afp/990301ap/1190.html and found that early puberty seems to be more likely when CAH exists - yet mine was definitely late, so how important is this. Does this mean I probably don't have CAH?

I've also had a Synacthen Stimulation test before which showed a very healthy cortisol increase following the injection, and generally my fasting morning ACTH levels have been at the very low end of the range. Now from what I understand in CAH your body is constantly overproducing ACTH to try and make adequate cortisol, so how can I have CAH with consistently low ACTH levels?

When he monitored my heart and took my blood pressure he found I had 130/75, and that my heartbeat tended to be quite 'hyperdynamic' which he explained as meaning that the contraction beat is accelerated. How does that relate to CAH - I understand that it might be something to do with sodium vs potassium levels?

I think I've given plenty of information to chew on in this post so I'll leave the 'treatment suggestions' queries for another time..

Regards,

[Megazoid]

I believe i also have a hyperdynamic heart, which i was told about too by a Dr. I've been told irregular heart beats and alike can be related to low cortisol.

I am not going on HC but pred instead, both are very similar i believe. I am hoping i feel a little better too on cortisol replacement. Did you see ANY improvement in libido or wood while on cortisol replacement? Have you had your thyroid looked into too?

[Andromeda]

Originally Posted by Megazoid

I believe i also have a hyperdynamic heart, which i was told about too by a Dr. I've been told irregular heart beats and alike can be related to low cortisol.

I am not going on HC but pred instead, both are very similar i believe. I am hoping i feel a little better too on cortisol replacement. Did you see ANY improvement in libido or wood while on cortisol replacement? Have you had your thyroid looked into too?

I recommend you take HC instead of Prednisone. As per that link I posted at the top of this thread, HC much better mimics the bodies natural secretions of cortisol in terms of its half life, and I think I remember reading some other downsides to pred. too. With regard to libido/wood - I did notice a substantial change in libido within the first week of starting it, but then it returned to pre treatment levels - ie: poor. This has me concerned, however its better to have energy to live/deal with stress and no libido than neither of both.

Cheers

[Andromeda]

Is it possible to have a high cortisol response to the Synacthan Stim. Test and still have CAH with symptoms of lower cort?

Out of interest too - do Norepinephrine or Epinephrine levels tend to be high in ppl with CAH that in turn results in different mental characteristics typical of elevations in these neurochemicals?
Do they also impair blood sugar regulation even thought Cort. levels tend to be low?

Regards,

[zkt]

Read the article and based on the childhood Sx you mentioned and the ACTH test I dont think this is your problem. It appears that something is wrong in the HPTA axis but maybe not these particular enzymatic deficiencies. This is for sure a complicated diagnosis to make. Keep reading. Good charts of the boichemical reactions in the adrenals. Thanks

[Andromeda]

Originally Posted by zkt

Good charts of the boichemical reactions in the adrenals. Thanks

Which charts are u referring to? BTW, im having the Synacthen test with enzymes measured on Tuesday this coming week - I pray to god this confirms it so I can get some treatment. Speaking of treatment - the original article I posted would suggest HC is the only option - arent there enzyme replacements that can be taken or something else?

regards,