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Endocrine and Gland Disorders (e.g., Thyroid and Pituitary) Issues dealing with Endocrine/Gland disorders and how they relate to neurological disorders.

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Old 07-09-2008, 01:44 AM
Taoist_Heart Taoist_Heart is offline
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Default Dr. thinks it's secondary adrenal insufficiency... does this sound familiar?

Hi,

New here. I couldn't find much on the net that was patient-specific about secondary adrenal insufficiency, which my general practitioner thinks I may have.

A brief history (and then symptoms):

I am in my early 30's and had thyroid cancer when I was a teenager. My whole thyroid was removed and I take synthroid .112 mcg per day. Always was fine, but prone to fatigue even though I was pretty hyperthyroid for a few decades! I was on a "suppression dose" that they give you after cancer.

Then, about ten years ago, I began having some strange psych. type problems that turned out to be chronic hypocalcemia, which I still watch. Wound up in the hospital with a calcium of 5.5 (it's under 7 that you can have a seizure, which I was having). But my calcium is fine now, in high-normal range.

Had a baby who is in elementary school now.

Went through very severe stress for years, trying to work, raise my child, and put myself through college, and saw many psychiatrists. Just anxiety, maybe from hyperthyroid for two and a half decades. Was put on a low dose of Xanax, which helped, but makes me drowsy. It's been a long time and I'm not interested in going off of it because I have muscular pain and twitching that no neurologist has ever been of help with (dx'd there with polymyoclonus and fasciculations, no one seems to know why, calcium doesn't help).

I feel like I've had nearly every blood test in the book.

My TSH has, for the first time, started to fluctuate pretty dramatically. It's always been close to zero, and now it's going up to as high as 60. Right now it's 7. Normal range is under 2, I think. So that's just strange.

... and now for my symptoms! Please let me know if the Dr. is making sense here. He wants to do some type of test and I don't think he's qualified. However, I'm so annoyed with Doctors that I won't see most of them and I really like mine.

Symptoms over the past approximately 4 years, getting worse and worse until I mentioned it to him last week:

-I'm thin from the thyroid but have next to no appetite anymore and eat every few days only. Weight about 95 lbs (normal is about 105 so this isn't bad -- I'm small-boned and short).

-Definate blood pressure issues. It's usually around 80/40, but if I stand up, it really drops, down to 70/36 last time. My ex boyfriend had a blood pressure cuff from his grandmother and started taking it and it's almost never much higher, and I feel lightheaded. It gets worse in the heat or if I exercise, in which case my heart skips lots of beats and I get faint and out of it and HAVE TO lay down.

-I have become totally coffee intolerant. Used to drink pots every day. Now I can barely drink a half cup and I get jittery.

-space cadet, short term memory sucks

-frequent headaches causing me to take a lot of aspirin

-bouts of exhaustion that get worse after a lot of prolonged physical exertion or emotional conflict (I no longer feel strong enough to argue with anyone who is yelling at me and instead cry and fall asleep and feel like I've been run over with a truck). They might last up to a month.

-bouts of HIGH fevers, up to 104 degrees, that came five times this year, once with what seemed to be food poisoning, where I vomitted for two days straight.

-I am dehydrated and have been every single time I've ever been tested for it, which is like twenty times in as many years, and no matter what I go to the ER for, like a bronchial infection, they give me IV saline.

-I swell up very badly in the heat, my eyes swell, I get incredibly pale, and I sweat. It's getting worse in higher temperatures.

-Can't stand up that long without feeling like my legs are encased in concrete and I am sleepy and weak.

-a noticeably low libido

-borderline high blood sugar even after not eating for days? It's been 120-130 for years.

-Always thirsty, urinate a tiny bit every few minutes (they checked it out and couldn't figure out why).

-nauseous a lot, but that could be from my gallbladder removal years ago? It's worse when I stand.

-sleep 10-12 hours per night and could still use a nap.

-dry eyes. Optomitrist gave me drops.

They thought I had vasovagal syncope, and I do according to the test, but that doesn't satisfy the Doctor, who says that is a symptom.

For now I'm eating about a tsp. of salt from a spoon per day and drinking two cups of very strong licorice decoction a day.

I don't crave salt, BUT I do crave licorice and always have. All the time. The "real" kind.

Do these things sound familiar?

Can suppressing the thyroid in the Pituitary long-term lead to a secondary suppression of cortisol there? That's what I presume but am not sure about.

I am very healthy, or try to be, don't eat red meat or chicken, don't drink milk (drink fortified soy milk), and mainly eat home cooked and often home grown organic vegetables, nuts, fruits, etc... also, I don't eat sugar. I walk about two miles a day, sometimes three, because I'm avoiding using the car with gas prices so high and was hoping I was just "out of shape."

But I feel much worse now than before.

Any thoughts? Do you relate? Thanks a lot for helping out a newbie who's been such a medical guinea pig that I'm frustrated by it all.

The test the doctor wants to do is a saliva test. Should I trust that test? I hear mixed things about it. What's the "real" test they would do to check your cortisol level? He said he wanted to put me on cortisone if this is the problem.
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Old 07-09-2008, 11:09 AM
rumpled rumpled is offline
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Um, .112 is not a suppressive dose... I have no thyroid (lots of tumors, no cancer) but I take .150 AND 15mg cytomel. Now that is a suppressive dose.

As for your adrenals, it is NOT caused by taking thyroid meds...

Why is he treating you with tea? Not meds? You can take replacement steroids?
The always thirsty... that is ADH - another pit hormone...

Get to a pituitary specialist - someone with NEURO-ENDOCRINOLOGIST in their title, not just any litttle endo, and see a neuro- opthomologist as well.

BTW, you don't have to eat a TSP of salt, anyone worth their salt knows that salt tablets exist. I take a few grams a day (I have adrenal problems). Table salt - YUCK! Even your pharmacist has them - albeit buffered. Please. Hardly any taste.

The saliva test is real... but frankly, with all the other stuff... I think you since you do n not feel better, drink water to assuage your thirst to keep your electrolytes ok and see your GP and get ADH tested and ask for a water deprivation test... you probably do have something wrong, but it sounds like I would ask for a water deprivation test, ADH, IGF-1, TSH, LH, FSH, Prolactin, ACTH, all the male/female hormones, cortisol, DHEA sulfate, vitamin D, ferratin...plus CBC and electrolyte panal to start.

Always get copies of your tests.
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Jennifer - ACTH Secreting Corticotroph Hyperplasia (Cushing's Disease) and Prolactinoma on Pituitary, Growth Hormone Deficient, Total Thyroidectomy (hypo, Hashimoto's, various nodules), PCOS, Meniere's syndrome, Migraines, Bilateral Adrenalectomy (Addison's Disease), Myasthenia Gravis?
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Old 07-09-2008, 03:34 PM
Naominjw Naominjw is offline
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Honestly, this sounds like either primary adrenal insufficiency--like something is physically wrong with your adrenals or secondary adrenal insfficiency meaning it is from hypopituitarism.

If you are referring to what is called "adrenal fatigue", I honestly think your symptoms are more than that-- an major problem that needs to get checked out by an endocrinologist specializing in pituitary (not just adrenal even though it may purely be adrenal) function ASAP!

-"Naomi"
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