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ACTH High level - Not Cushings or Pituitary or Adrenal tumors?

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Replied by carolk on topic ACTH High level - Not Cushings or Pituitary or Adrenal tumors?

Hi There,

I am sorry that you're going through this. I am not a medical professional. Having said that, the question I have is: of all the physicians you have seen were any of them pituitary specialists? Was any of your testing done at a pituitary center? I'm not sure where you are located, but in the U.S. there are pituitary centers around the country that have all the specialists needed to properly diagnose and treat pituitary disorders. Not all endocrinologists are the same, some mainly treat the common endocrine problems such as diabetes. It helps to know how many pituitary patients your treating endo has to fully understand if he/she can treat your complex case. What type of MRI machine your MRI was done on matters, who read the MRI and wrote the report matters. An experienced pituitary neurosurgeon can also look at your scan can recognize abnormalities that others may miss. Was your MRI done on the pituitary specifically, was it done with/without contrast? If your treating physician is a pituitary specialist that is your best chance to get a correct diagnosis but being treated at a pituitary center is ideal because they will have a multidisciplinary team of doctors who can consult together to come up with the right diagnosis/treatment plan for you. 

How are they treating your high ACTH, High Cortisol? Medications? Did they do Petrosal Sinus Sampling test to determine if the ACTH is coming from the pituitary region or is ectopic, somewhere else in the body? Besides adrenals, did they look elsewhere?

My 2 cents: it never hurts to get a second opinion from a pituitary specialist! If you are located in the U.S. here is a list of expert physicians from PNA'S website.


Best wishes on your journey!

1 year 3 weeks ago #10694

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ACTH High level - Not Cushings or Pituitary or Adrenal tumors? was created by ronniesaras

Hi there,

After reading many forum posts, I can see I am no different from a number of members, searching for answers in forums that were not answered by medical professionals. I'm hoping I'm not the first person on the planet to experience this, although I wouldn't wish it on my worst enemy. I will give a brief outline of what I would love to know and for those who are more interested in the bigger picture, a longer more detailed account.

My ACTH levels have been through the roof for nearly 9 months, as has been my cortisol levels. ACTH levels have been at time 3 times higher than the upper extremity of the normal range. My cortisol levels were also high for most of that 9 months, but recently has dropped down to the high end of normal.

I have seen endocrinologists,  professors of endocrinology, performed suppression tests, 24 hr urine tests and a thousand bloods. I was told that as cortisol and ACTH work in a symbiotic inversely proportional relationship, my condition is a result of one of 3 things;

- Cushings
- Pituitary tumor or
- Adrenal tumor.

They cleared me of Cushing's and I had both a brain MRI (no anomalies observed) and a full abdomen / adrenal gland CT (nothing found)

So, they all throw their hands up and say, they don't know. Any assistance, shared experiences of a similar nature would be greatly appreciated.

For those wanting to read the full story....

I am 51 y.o and consider myself pretty fit, but have always felt an underlying unwellness for many years. About 5 years ago, I began to experience what I believed to be sinus pain / pressure. After months of discomfort, an ENT looked inside and said, apart from a deviated septum, it looked ok. an MRI showed that I had a mucus retentive cyst filling most of my left maxillary sinus. My "sinus: symptoms were atypical, in the sense, no discharge. My nose felt dry and like concrete for years. I couldn't squeeze a drop of anything out if I tried.

Associated with the sinus discomfort, I began to get bout of fatigue, as well as impaired cognitive ability, memory loss and irritability. 

In september 2018, everything happened at once, my sinus pressure was at it's worst, I was confused and both mentally and physically exhausted. I normally cycle for hours without issue, but now was out of breath, walking up stairs. At the same time, my abdomen began to feel sore and bloated. My back, ribs and gut felt muscular sore as well as it felt like my internal organ were all bruised. It felt like I had been in a car accident.

The next couple of months saw me visit a professor of cardiology, ENT, Endocrinology, Neurology, Respiratory Physician, Gastroenterology. They all did extensive tests, i.e heart stress test, abdom x-ray, colon cancer test, a million blood tests, full chest performance, etc etc.

I decided to get my sinus surgery - that was Nov 28, 2018 - the ENT professor was very pleased with the results, but none of my symptoms eased. Instead I was an unlucky exception, that still has what looks to be permanent nerve damage from surgery (number top lip and septum). 

A sleep disorder clinic (I wake up tired every morning of my life - even if I have 10 hrs sleep) found i have both obstructive and central sleep apnea, mostly, central so, after trying a CPAP machine for a couple of months, found no change, as Central can not be treated with this type of machine.

They found I was extremely low in B12 - they didnt know why or care about trying to find out. but I was given B12 injections for months with the hope that this would fix my ever increasing bouts of fatigue - that would render me sore and tired on the floor. During this time, I was not fucntional and very unwell. I took 4 months off work.

Each specialist tried to prescribe anti-anxiety meds. I said understandably I'm anxious and stressed about being unwell, but anyone would after being so unwell for so long. Apart from the physicality, it was also mentally and emotionally draining. I do think I stayed positive and responded that the anxiety is a by product and the core problem. It just exacerbates an underlying problem yet to be discovered. Reluctantly, I tired a small dose of Lexapro for 6 weeks - It was the worst I had ever felt and was even more anxious. I weened myself off and have felt better since - that was 5 months ago.

Incidentally, they found my cholesterol was very highand vitamin D was low. I said my cholesterol has always been good and my diet hasnt changed? I questioned why my B13, vitamin D and cholesterol was all out of whack now. My gut not processing properly - I started to take enzyme supplements to help me process. Recent bloods have shown my cholesterol has miraculously improved. 

I have 4 titanium teeth implants and thought maybe im allergic to this as my first one was about 5 years ago when this all began. I see an Immunologist professor next month. 

One positive that has come from this - I used to be a sugar-holic my whole life. Years of sugar abuse, with kilos of chocolate consumed regularly. For the last 6 weeks, apart from incidental sugar in some foods, I havent eaten, choc, lollies, ice-cream, cake etc etc and my energy levels have improved. My sinus pressure is still there and bad, exacerbated when i bend over, drink cold water etc i can feel my pulse throbbing in the sinuses.

My abdominal discomfort has worsened however and recent bloods show my ACTH through the roof. apart from wanting to get well, I dont feel stressed. I feel worse late at night (cortisol is highest) i can feel it running through me and i feel very uneasy and almost shakey.

I know most have not read this far, for those who have thank you. I think this has been just as much for myself than anything else. Good luck to all that are experiencing health hardships. x
1 year 3 weeks ago #10691

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