re: I think I might have CAH
Apr. 7th, 2005   8:47pm

Quite a few of the things you mention could be related to untreated adrenal insufficiency or CAH.

The muscle fatigue and stiffness in the legs are certainly one sign I get when my CAH treatment doses are inadequate. I explain it this way. I feel like I’ve been doing strenuous exercise such as mountain climbing/cycling - yet I haven’t been, and the stiffness or fatigue lasts for days/weeks - well beyond the time for normal muscle stiffness to last. Other times my legs just don’t want to work. They feel so fatigued as if they are tree trunks, heavy and laborious to move, every footstep is a chore - slow and ponderous.

Pain/twinges is another thing. My sister and I (both CAH) often say we’ve never had a pain- free day in our lives. The pains are all over the place - often not severe but niggling and annoying. The pain you are experiencing in your sides under the ribs sounds quite like the pains experienced commonly in adrenal insufficiency. If it’s the same, I know and it’s horrible.

Irregular periods - very much a sign of hormone disturbance.

Low blood pressure and postural drop is almost universal with untreated adrenal insufficiency.

Also 3, 9, 14 & 17 are possibly relevant.

Do you have any pigmentation or bronze skin colour? Not everyone does (particularly not late onset CAH’s) but it’s quite common in untreated low cortisol conditions where the ACTH levels elevate. Also what about unwanted hair on your upper lip area or chin? This is also a very common area for hirsutism.

Regardless, you seem to have enough symptoms to warrant being thoroughly checked. Your doctor may want to look at PCOS as the first point of call but PCOS doesn’t exhibit some of the things you mention. The body is complex and sometimes there can be a collection of problems but you have to start investigating somewhere.

If/when they test you it’s essential they don’t just do a baseline cortisol or 17-OHP level as they can appear within range, rather they need to do the ACTH stimulation test,  sometimes called a synacthen or a cortrosyn test. Also make sure they test for testosterone levels and androstenedione. Or do a 24 hour urine test and test for Pregnanetriolone and Pregnanetriol among other things.

All the best with your doctor’s visit. Keep us informed.

 

Megan
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