Discussions By Condition: I cannot get a diagnosis.

Ectopic ACTH Tumor?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: MetalMX
  • October 29, 2009
  • 00:32 PM

I have been having these symptoms for months to almost a year now. I am a 20 year old male.

I have symptoms of: low appetite, gastrointestinal disturbances, muscle loss in arms and legs, flabby stomach, chronic/moderate fatigue, muscle weakness, constant thirst/for salty and general fluids, some days urinating up to 7 Litres, constantly waking up from sleep. Poor wound healing, joint pains/cracking of joints, sudden shortness of breath, weight loss.

I had some blood tests done and they revealed the following:

Aldosterone - 80 pmol/L - LOW (Upright) (100 - 950)
Renin - 41 mU/L - HIGH (Upright) (3 - 40)
Aldosterone/Renin Ratio - 2 (2 - 75)

Blood Cortisol - 773 HIGH (140 - 630)
ACTH - 12 HIGH (<11)

Then my GP ordered 24 hour urinary free cortisol, sodium and 24hr aldosterone.

Urinary free cortisol - 378 * (100 - 320)
Urinary Sodium 400 * (<100)

Aldosterone isn't back yet.

Does anyone have any idea what is happening to me.

:(

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3 Replies:

  • There are a number of problems with your post that make anything difficult to say for more sure... Firstly what are the units of your measurments ? Especially the blood cortisol and the ACTH ? Different countries have different standard units and so these are crucial. If you had an ectopic ACTh secreting tumor, your ACTH would be much higher than it is (>40pmol/l). Also could you give me some idea of your alcohol intake ? A dexamethasone suppression test would be super useful as well.
    gungwane 62 Replies
    • October 29, 2009
    • 02:31 PM
    • 0
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  • There are a number of problems with your post that make anything difficult to say for more sure... Firstly what are the units of your measurments ? Especially the blood cortisol and the ACTH ? Different countries have different standard units and so these are crucial. If you had an ectopic ACTh secreting tumor, your ACTH would be much higher than it is (>40pmol/l). Also could you give me some idea of your alcohol intake ? A dexamethasone suppression test would be super useful as well.I have never drunk alcohol in my life.I lead a very healthy lifestyle with diet, supplements and exercise.When i tried to take a T3 medication for my thyroid (hashimoto's disease) even small doses would give me heart palpitations and extreme weakness. I have to take another dessicated thyroid right now, although the dose isn't very high due to it making adrenal symptoms worse.Cortisol - 773 nmol/L (130 - 640)ACTH - 12 (Aldosterone - 80 pmol/L (100 - 950)Renin - 41 mU/L (3 - 40)Aldosterone/Renin Ratio - 2 (2 - 75)Yes i think a dexamethasone suppression test would be the next logical step. I am planning on studying medicine in the near future so i am well informed about all this. It has taken me one year to figure out i have some form of adrenal issue through millions of blood tests i have gone through.Only other thing that is abnormal is constantly elevated SHBG levels.I have a neurologist i see who diagnosed peripheral neuropathy but we don't know the cause. Brain and Spinal MRI's we're normal. I assume it could be due to long term chronic hypothyroidism which is now finally being treated. But could a adrenal/electrolyte problem also cause nerve damage?
    MetalMX 15 Replies
    • October 30, 2009
    • 00:12 PM
    • 0
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  • I have been having these symptoms for months to almost a year now. I am a 20 year old male.I have symptoms of: low appetite, gastrointestinal disturbances, muscle loss in arms and legs, flabby stomach, chronic/moderate fatigue, muscle weakness, constant thirst/for salty and general fluids, some days urinating up to 7 Litres, constantly waking up from sleep. Poor wound healing, joint pains/cracking of joints, sudden shortness of breath, weight loss.I had some blood tests done and they revealed the following:Aldosterone - 80 pmol/L - LOW (Upright) (100 - 950)Renin - 41 mU/L - HIGH (Upright) (3 - 40)Aldosterone/Renin Ratio - 2 (2 - 75)Blood Cortisol - 773 HIGH (140 - 630)ACTH - 12 HIGH (Then my GP ordered 24 hour urinary free cortisol, sodium and 24hr aldosterone.Urinary free cortisol - 378 * (100 - 320)Urinary Sodium 400 * (Aldosterone isn't back yet.Does anyone have any idea what is happening to me.:(Did you check into Addison's Disease?
    Anonymous 42789 Replies
    • December 3, 2010
    • 05:36 AM
    • 0
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