Thanks Anne-Marie and Lynn,

I don’t think the pain is agonising enough to be kidney stones but persistent and wearing me down (I did have a good cry the other night when it was getting to me). Appendix pain usually starts near the umbilicus at the front. This pain is in the right flank area around to the back.

Kidney fibroids -ouch!  Do you have to have a uterus for them to spread to other areas...as I do not have a uterus now? Lynn, did the fibroids resolve at the end of the pregnancy or did the doctors do something to help them go?

I shouldn’t have adhesions anywhere as I’ve never really had open abdominal surgery, only laparoscopic procedures. Oops I lie, yes I have -just remembered.

I received my 17-OHP etc. results in the mail last week and my levels are a little elevated (17-OHP around 1700ng/dL).  Have been feeling unwell in other ways too, although I’m going through a bit of family stuff at present, so it’s quite stressful. The funny thing is that the flank pain started, about the time that my last testing was done on the 19th of March but I felt OK generally then and have progressively felt worse over the last four weeks. So I’m wondering if my levels have increased further.

Anne-Marie, I haven’t increased my dose, as I am due to see the endo on Tuesday, so I will run this all past him. When my levels were up last year and I felt yucky (minus flank pain) he wasn’t very enthusiastic about me increasing the dose before I saw him - although my GP panicked and asked me to call the endo. If it happens ever again, I will ’nip it in the bud’ with more meds, before I feel worse. Problem is.....you’re flying blind with this condition most of the time. You don’t have a clue what the levels are between testing and hence difficult to decide what to do. I’m learning though!. I’ve not been brought up being educated about increasing my dosage for periods of unwellness (is that a word?) so have struggled on for weeks feeling unwell in the past.

What has to get through my head is, that regardless of seeing blood test results I need to make a few assumptions based on what I have experienced in the past.

Flank pain = probable elevated levels = increase dose slightly for a few days.

Internal shaking, weakness on exertion eg, after showering and dressing = probable elevated levels = increase dose slightly for a few days.

Pimples (acne) outbreaks = probable elevated levels =increase dose.

I find that usually these things and a few others symptoms, occur together, so I’m beginning to see them collectively as a fair indication of loss of control.

Regards Megan

PS. I was looking at an 1860’s publication on the internet yesterday written by a doctor who was studying Addisons disease back last century, before there was treatment available, when they ALL died. Many, if not most presented with flank pain along with other symptoms. Seems that it is a problem for people with adrenal disorders, yet I don’t think there has been much study done from a medical perspective, as to why it occurs!