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  • Adrenal Issue or POTS?

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    Old 10-28-2013, 06:34 AM   #1
    Jellybean1986
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    Exclamation Adrenal Issue or POTS?

    Hello there,

    In 2007, I was diagnosed with "Postural Tachycardia" which I was told meant I had POTS after a tilt table test. I took Thermotabs multiple times a day and VOILA! symptoms went away..no more falling for no reason. EEGs ruled out seizure disorder.

    In 2008 I stopped taking thermotabs (ran out) and for whatever reason, the symptoms stayed away.

    In August of this year I've yet again developed orthostatic hypotension. But this time also...excessive hair, sweaty hands and feet, spasms and twitching in toes, hands, back and abdomen, extreme sudden anxious state, hyoglycemia episodes - not severe lowest was 62), excessive thirst, excessive urination, decreased appetite, and was taken by ambulance 3x from work for sudden severe dizziness and what felt like a panic attack (trouble speaking, buzzing sensation all over from breathing weird)

    The first time I went to the ER they said I'd had a panic attack. They only checked my potassium, calcium, and sodium. Potassium was low and calcium was low but not super low. They gave me a dose of klonopin and sent me on my way. The second time it was a diff hospital and they confirmed orthostatic hypotension and yet again my electrolytes were all OVER the place. They gave me 3 bags of sodium chloride and told me to see the automonic Specialist. The specialist said he couldnt see me until December 2013 but he would run the tests again. This time - sustained orthostatic hypotension / Borderline Study / Results suggested it was not neurologically related??

    So my PCP said AHA! It must be adrenal then and off I went to the endo at a diabetes clinic. I had already been to an endo who only tested me for diabetes insipidous (i was urinating 15-20 daily even though I wasnt drinking in excessive fluids)

    So here is what this endo has for tests:

    DHEA-S 417 (High)
    Adrenal Antibody Reflex - Negative
    Adrenal AB - Negative
    17-OHProgesterone 60 min (noon) 107 (Normal) (No baseline done)
    Cortisol Stimulation (Noontime) 60 Min- 42 (No Baseline done or 30 min)
    Aldosterone LC/MS/MS 39 (High)
    Total Testosterone 23.29
    Free Testesterone 6.2 (High)
    FSH 3.7 (Normal)
    LH 2.99 (Normal)

    Vitamin D - 25 Low (last time it was at 20)
    Vitamin B12 347 (Normal)

    Cholesterol 170 -
    LDL Normal HDL 34 (Low)
    Platelets 144 - Low (My platetets are usually 109-150 (Normal 150-450)

    High count of blood in urine (this is normal for me since 2007 and for no know reason)
    Urine Albumin 27 (HIGH - but Creat/Alb ration normal)

    I don't see anything about aldosterone being tested and I really wish they had done a baseline to see what my numbers where before I got the shot. I know that my cortisol at 60 min rules out AI but could the DHEA-S be responsible for a lot of this? I read that anxiety is common when its high.

    I need help. I don't see the endo to discuss these until Dec. I'm on 1G of sodium chloride 2x daily which has significantly reduced the dizziness, my prescriber tripled my dose of Klonopin TEMPORARILY to 1.5mg a day until we can find the source. Even though the dizziness is gone at the moment my lips are all cracked and my urine is dark and I'm kind of worried that somehow, I'm dehydrated.

    My family has hypothyroidism (my T3 and TSH are almost optimal), adrenal issues, and reactive hypoglycemia (which it seems I also have)

    Last edited by Jellybean1986; 10-30-2013 at 03:09 PM.

     
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    Old 11-06-2013, 11:45 AM   #2
    Jellybean1986
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    Re: Adrenal Issue or POTS?

    They redid the tests without stimulation, unfortunately they were still at noon time like the ones before only here are the results:

    Cortisol @ Noon - 5.9
    Free Test - 6
    DHEAS - 292

    Waiting on aldosterone and ACTH results..

    Is 5.9 a good noon cortisol level?

     
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    Old 02-21-2014, 09:56 AM   #3
    Klyons
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    Question Re: Adrenal Issue or POTS?

    Jellybean...I know it's been a few months since you went to your dr in December but what was the verdict?

     
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    Old 03-16-2014, 01:23 AM   #4
    astaire1972
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    Re: Adrenal Issue or POTS?

    My first symptom was POTS. It turned out to be adrenal issues that were causing the POTS. Cardiologists will tell you its a heart issue, but mine certainly wasn't. Make sure you have a very good endocrinologist to interpret those test results. It turned out that my adrenal glands did respond to the stimulation, just not enough. I was diagnosed with something called Hypothalamic-Pituitary-Adrenal Axis dysfunction. Basically means that my pituitary isn't communicating with my adrenals.

    So even if your adrenals respond to the stimulation, there could still be something wrong. Never stop researching and questioning. With the complex problems you can have with adrenal issues, you really have to be in charge of your own health. If you leave it entirely to the doctors, something can get missed. Every improvement in my treatment has occurred because I researched my illness, went to my doctor and said "Hey, why don't we try this?" Best of luck. I'm sorry you're going through this.

     
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    Old 03-16-2014, 01:31 AM   #5
    astaire1972
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    Re: Adrenal Issue or POTS?

    Oh! One more thing. See if they can do a morning saliva test. The cortisol levels in saliva can be really telling. I had almost NO cortisol in my saliva. Which is not at all normal.

    You don't need a doctor to order the saliva tests. You can order them online and do them yourself. Just make sure you follow the directions exactly. And take the results to your doctor for interpretation. Sometimes they can be a little confusing. But the more information you have, the better.

     
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    Old 03-16-2014, 01:43 AM   #6
    astaire1972
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    Re: Adrenal Issue or POTS?

    Okay, this is the last thing I'll post, I promise. I'm not sure if you're even coming back here.

    But my adrenal issues are all about the salt and water balance. Aldosterone is the hormone that controls your salt and water balance. For me, salt retention is low, so I don't retain water (as you said, I dehydrate.) I have to take adrenal hormones (hydrocortisone and fludrocortisone) to replace the hormones by body is not producing. Hydrocortisone replaces cortisol and fludrocortison replaces aldosterone. So the fludrocortisone helps me retain more salt, which helps me retain more water, which raises my blood pressure and keeps it from dropping when I stand.

    ERs love to tell people it's anxiety. They are useless. Although, if your urine is still dark (and I hope it isn't by now), that is a sign of dehydration and you should probably go back to the ER for some fluids.

     
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