You should probably be doing some 24-hour urine cortisol tests, and not just one. Do a few, like a month apart. If your cortisol is high there, you're probably looking at Cushing's(unless you are taking any kind of steroids?). If it's high, then you'd probably need a Ct or MRI scan to look at the adrenal glands to see if you have a small tumor(benign).
I would think the low ACTH is only responding to the high cortisol. Your feedback system is telling the brain to shut down production of cortisol, and your pituitary is telling the adrenals to quit producing, which is NOT happening, thus the need to look at the adrenals for a tumor. Has your doctor said anything about investigating the high cortisol?
Do you have thyroid dysfunction as well as the adrenal issues? It does make a difference in treatment and such.
What are your symptoms? Blood tells us one thing symptoms can help us narrow things down. For instance abnormal endocrine states (thyroid, adrenal, pituitary) usually present with muscle weakness—most often proximal weakness—the exact reason for such is of course incompletely understood. Even the fanciest histologic analysis and electromyographic testing can be inconclusive but the symptoms are there.. here are a few of the more common patterns of endocrine dysfunction that can effect adrenal output.
Adrenal dysfunction(You are hyperadrenal.. too much cortisol, i am hypoadrenal so I have tossed those facts in as well):
* Hypoadrenalism can be caused by many issues: infection, inflammatory disease, and tumor. The next thing to note is that adrenal failure may follow pituitary failure.
* In hypoadrenalism, neurological manifestations (behavior and mentation issues) are prominent; myopathy muscle issues is not likely to be a result of the hypoadrenalism.
* If you are hypoadrenal and have muscle weakness the factors that may be the source include: poor circulatory system function, fluid and electrolyte imbalance, impaired carbohydrate metabolism, and starvation... prolong untreated hypothyroidism is another culprite.
* Hyperadrenalism sources include: pituitary or ectopic overproduction of adrenocorticotropic hormone (ACTH)(.. not your case), adrenal tumors(.. normal the level of excess cortisol is much higher than in your case.. but if you are in the early stages.. who knows), or dietary corticosteroid administration. Pituitary ACTH hypersecretion (ie, Cushing disease) is caused by a corticotroph microadenoma in 90% of patients and by a macroadenoma in most of the rest. (Once again this doesn't match your blood work)
What medications and supplements are you on? All of them? OTC anti-itch creams even.. you can get to much steroids by chronic and liberal application of steriod anti-itch creams.
Thyroid dysfunction(This can cause issues with adrenals as well! HOW?):
* Under active Thyroid hormone states result in neurological syndromes. These vary depending on the age of onset of the underactive thyroid condition. Muscle weakness occurs most prominently in the adult forms of myxedema.. too low T4 and T3 for you.
* When you have an over active Thyroid hormone state you are more likely to have a form of myopathy. Thyrotoxic (too much T4 or T3) myopathy is believed to be an indirect aggravant in the disturbance of the function of the muscle fibers. The research gets real technical from here and basically points to increased thyroid hormone causing one ore more of the following: increased mitochondrial respiration, accelerated protein degradation and lipid oxidation, and enhanced beta-adrenergic sensitivity.. all can cause myopathy of varying degrees... due to excessive amounts of thyroid hormone.
* There is a nice study of the endocrine myopathies by Rodolico and colleagues. Their study describes 10 patients with primary autoimmune hypothyroidism (Hashimoto's thyroiditis) presenting solely with myopathy as their only symptom.
So the thyroid - pituitary - adrenal glands - hypothalamus are all tightly linked together. I agree something is up and it should be looked into.. but with out more data one can not make a conclusion that all is well or what might be wrong. I wish I could add more, but I need more information to go on.
If we learn by our mistakes, I am working on one hell of an education.
There are plenty of people that I've "forumed" with over the years that are diagnosed with Cushing's based on a few over-range 24-hour urine samples, and then having a late-night serum draw looking for elevated cortisol levels. These people are diagnosed by one of the top Cushings' doctor from the Northwest(US). They are then further analyzed by CT or MRI scans to look for the tumor causing the high cortisol. Further, Cushing's is the disease caused by any tumor causing high cortisol, whether it is on the adrenal or in the pituitary. I would recommend you ask your doctor to further investigate to rule in or out the cause of the high cortisol.
hi sue hi mkgbrook
my doc is an expensive idiot ,he thinks the high cortisol can be fixed simply with HRT and no further testing necessary ..
I do have a multi nodular goitre & recent ct scan shows its unchanged in the last 2 years and I can feel it has shrunk slightly ,my symptoms seems to be all over the place sometimes I swear I could be hypo then hyper ...but I do have some degree of muscle weakness & impaired carbo metabolism and am totally heat intolerant, I also have osteoporosis, the only supplements Im on is calcium,magnesium,vit D3, selenium,zinc, omega 3 ,digest aid.I dont believe in medicating unnecessarily not even creams with steroids ,especially when docs cant diagnose whats wrong ,over the years I have been told Im hyper, hypo, hashis, ....just cant get an accurate diagnosis and am about to give up
recent blood work for thyroid
TSH receptor antibodies
1.0 (1.0-1.5 iu/L)
Your thyroid labs don't look too bad, but after reading on here, good looking labs don't always equal feeling good. And I hear you on the heat intolerance! That is one of my most debilitating symptoms. I guess it wouldn't hurt to ask your idiot doctor if he could do more testing--the worst that could happen is he says no.
Hashimoto's can cause you to be hyperT and hypoT.. but the end result will be hypoT. Did they ever test you for Graves? It is possible to have both and that could explain things as well.
FT4.....16.3 (10.0-19.0) => 70% in range. This is optimal.. I would consider it perfect.
FT3.....5.3 (3.5-6.5) => 60% in range. This is in optimal and with in the 5-10% balanced range. So the thyroid appears to be good.
However just because you have good blood work on a given day.. doesn't mean you don't on other days.
TSH....0.41 (0.50-4.00) This is low if you are not on thyroid meds or just on a T4 supplement. This is indicating you are on the hyper side if your hypothalamus and pituitary gland are working alright. So you are just on supplements and not on thyroid meds.
TSH receptor antibodies 1.0 (1.0-1.5 iu/L).. well this is showing you have some TRAb... these are used to measure Graves. TSI are more accurate though.
Well definitely a mystery. I will keep an eye out on research.
If we learn by our mistakes, I am working on one hell of an education.
sue.. I have already dismissed the idiot doc , told him I dont agree with his diagnoses or recommended treatment. he tested pituitory at my request
says it was fine ,the only test results I have left here is as follows.
mkgbrook does this look like a pituitory test?
serum prolactin...56 miu/L ......(59-619)