Hey Rumpled,
I got my lab results back yesterday. My electrolytes, sodium and potassium, were fine. But my adrenal cortisol was STILL in the >0.5 range, which is where it's been all along. SIGH. If you'll recall, I changed my half-dose of dexamethasone to a whole pill, for six weeks b4 the test.
Now, my physician's assistant and doc both said they weren't going to make ANY changes this summer, my next appointment is in September.
Pred and dex last long - 36 to 54 hours! So when you take the dose for the next day, the previous days dose is still there. I call that stacking. You can actually give yourself steroid-induced Cushing's syndrome just from taking the meds.
I take .5 dex and I also have appetite issues. I cut carbs down (try to cut them out but that is really hard!
there are a lot of other tests to do besides the dex test! After the dex you have to wait to do other tests as the dex has to get out of your body but 24 hour urine tests and other pituitary tests would have been a logical step...
They go in via a nostril. I have had 12 surgeries - that one was among the easiest!
The disease is not easy though...
The doctor telling you have low cortisol after a DST is rather misleading. The dex is what lowered the cortisol. What happened really is that you suppressed on dexamethasone - so the doctors, most doctors, are going to dismiss your symptoms and illness.
I had Cushing's and failed (suppressed) on the DST as well, but I still had it. I know hundreds of people like me. Weight gain etc. etc.
What is the average lifespan, prognosis for systemic amyloidosis??
I am 28 years old and have been experiencing anovulation. After extensive testing I was diagnosed with 21-hydroxylase deficiency. I have chronically high progesterone (ranging from 3-40). I was started on dexamethasone and have had success with reducing progesterone. The problem is now I am in adrenal suppression with morning cortisol >.1. I have been lowering my dose of dex but have not seen much improvement in improvement in cortisol levels.
Has anyone had similar problems?
This time, we took the test the right way, with no caffeine, no steroids (had to work off them and stay off them for two weeks to get the test done, and that was tough.) This time, my 24-urine cortisol was low-it was 3, with him saying 5 was low-normal, and that it could account for pain and fatigue, because the body wasn’t healing well, but he mostly blew it off and said it wasn't 'low enough' to cause problems.
As an emergency vet, I would add that many of these cases are challenging to diagnose, but may respond to a combination of antibiotics for a possible upper respiratory infection (i.e, kennel-cough) along with low dose steroids (like prednisone) to reduce inflammation of the trachea. Minimizing excitement and activity for the next few weeks might also help reduce the "cough cycle", as Dr. Humphries discussed.
Severe fatigue, recurring infections. Low body temperature 95 - 97, vitamin d lab result = 19 Low, Free T3 2.3 Low, always cold, severe brain fog and lack of motivation to even bathe, Cholesterol 311, MCV 98 High, Anion Gap 5.9 High,, ultrasensitive TSH = point 97 (.97), Free T4 point 79(.79), B12=334, Monocytes low, eosinophils low, ANA negative, Rheumatoid negative, all other CBC and chem profiles are normal... including ferritin 33.4, folic acid 12.77 and iron binding cap 316.3.
First positives were a 24 hr UFC 164 (3 weeks post abdominal surgery)((range 10 to 80)), and serum cortisol of 4 post 11pm low dose Dex suppression (range 5-25).
I have also completed two 11pm salivary swabs, no results yet, and I've also done another dex suppression, this time it was .5mg every 6 hours for 48hrs followed by 24 hr urine catch, no results yet.
I am beginning to think the ACTH test is useless unless it was taken with a serum cortisol.
Nonclassical CAH patients, if they require medical therapy, are usually effectively treated with low dose hydrocortisone (children), prednisone, or dexamethasone (the latter 2 drugs should mainly be used in older adolescents or adults). Excessive dosing with these medications may inhibit growth in young children, and may cause weight gain and/or hypertension. Girls with nonclassical CAH do not require genital surgery.
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