Hi,

I’m very upset and looking for advice- As you all know, I was born with simple virilizing classical CAH and had blood work for our condition as a child/teen every six months and as an adult at least once a year. But I’ve noticed with this Endo that I’ve had for four years that the blood work for the CAH was only for the first two visits after I was changed from prednisone 7.5mgs to Hydrocortisone 25mgs and now 20mgs with out a blood test.

Was told - didn’t want to give me blood test for CAH while going through the cancer treatment but did allow an increase in the hydrocortisone. I figured no Blood test...Ok even though I was really concerned w/ how the adrenals were coping.

couple of months later......

While after that my thyroid was looked into and got a blood test to find out that I had Hashimoto’s Thyroditis ...it’s now in hypothyrodism- I take synthroid (haven’t gained but lost a little weight) for that and have done the blood work every three months. But still nothing written for the CAH ...I was curious about how the adrenal gland was dealing with the evil thyroid ...need more cortisone or what?

few more months .....

I quietly called the endo’s office today....they got back withing a half hour - all of you should be so lucky but what told "no, test for that [cah]......we only test for thyroid and bones"  I’ve learned not to assume and also not to say much to the people at the desk anymore ever ......so calmly I go "OK" and hung up.

My question is to those that are older -----How often do you get your blood work for the CAH?

I don’t even know if the 20mgs of Hydrocortisoe is really helping with all resent stress of two hurricances and looking for a job with a liveable wage on top of the stress of living with cancer and the thyroid needing synthyroid. I was sick for the last 2 weeks flu, chills, cold, stomach pain, very lethargic  - spent time in the ER - Nope they again ...solu-cortef?

and now to here the endo w/ no treatment for the CAH? I’m like ...what then before I call another one thought to post to see that maybe other adults don’t have bloodwork either per endo.

Thanks ....I think I’m going to start drinking again ....kidding I think.