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Muscle cramping, dizziness, fatigue, nausea. Family history of neurological disorders. Standard treatment being given?

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Practicing since : 2001
Answered : 297 Questions
I have blood work showing
FSH .02 ref range 1.0-8.0
Vit B-12 295 ref range 193-982
Testosterone 752 ref range 212-742
Aldosterone 1.7 ref range 4.0-31
Prolactin 14.3 no reference range given
I have had the anterior portion of my pituatary removed for Macroadenoma.
Experiening extreme dizziness, shaking, fatigue, nausea.
Currently only on Testosterone replacement which has been cut in half without causing a drop in my testosterone.

Family history of aldosteronism, carnitine deficiency, and Hashimotos thyroidistis.

Last endocrinologist said I need to see a nuerologist this is not an endocrine issue.

This inquiry is for my father who is very ill and getting passed from one doctor to another and no-one is helping.

After talking extensively with him I find it funny that the nuerological problems he has are identical to mine, there are
no additional or different symptoms, to the ones I had prior to my treatment for CRH-ACTH defect and secondary

Those include: Muscle cramping and spasms, inability to process information, dizziness, extreme fatigue, feeling like
your entire body had been plugged into a socket especially in the hands, and face, nausea, shaking, and balance

All of these are my fathers complaints as well. The one that stands out the most is the feeling we both have that we
are just going to stop living it's like you black out and then get jolted back to awareness but the feeling that you are
dying is very real and truly frightening but it is not a panic attack because the rapid heart beat and irrational fear are
absent it's like you die and then something jolts you alive.

Like him all my blood tests were only slightly low there was nothing to clue them in that there was anything going on
but my pcp refused to accept the answers and felt there was something being missed so he sent me for a second
opinion to a different endocrinologist who immediately performed a cortisyn stimulation test and then an Insulin
Tolerance Test both of which where very abnormal.

My father has children with the following issues issues:

1 child with Hypophysitis
2 child with CRH-ACTH Defect with secondary hyperaldosteronism, and ACTH resistance.
3 child with Primary Carnitine Deficiency
6 child with FSGS

All are endocrine issues and not nuerological although all of us were seen by nuerologists with treatment for
symptoms but no resolution for cause. And it seems the treatment was greatly inadequate.

With all that information it is very difficult to believe that the nuerological symptoms he has are truly nuerological
especially when the onset of his nuerological symptoms led to the discovery of a pituatary macroadenoma and
nothing else. And as stated above all of them are identical to mine with the CRH-ACTH defect.

And finally the Gene for MEN1 is altered in child #3 (not that we know what that means she just had it done because
she believed there was something in the family and I believe she is correct)

This may be a long answer to a simple question of what are the nuerological symptoms but It is important in my

The inquiry was an attempt to see if the treatment he is recieving is standard and it appears that is the case. It seems
unfortunate that those of us who really need the help get overlooked because "the simplest answer is usually the
correct one" or "if it looks like a horse don't search for a zebra" mentality.

I would be open to any suggestions on how to get the correct treatment for my father. If he were truly being helped by
nuerology then the nuerological issues would be getting better, changing, or maintaining. None of these issues are
the case he has had zero relief from nuerological treatment. There is one exception the steroid treatment for aches
and pains, "I feel so much better on those" The steroids seem to help all of his symptoms.
Posted Tue, 24 Apr 2012 in Brain and Spine
Answered by Dr. V. Kumaravel 16 hours later

Thanks for posting your query.

I do understand that you were diagnosed as Pituitary Macroadenoma and removed your pituitary gland. You are currently on Testosterone replacement.

I feel that your other pituitary hormones also has to be checked like cortisol, thyroid and growth hormone. They also has to be replaced if inadequate.

Your concern seems to be related to your father who experiences Muscle cramping and spasms, inability to process information, dizziness, extreme fatigue similar to what you have.

I would like to know some more things to guide you better on that.

1. Whether your father also had Pituitary tumor? If so was it operated and what was the nature of tumor?
2. What are his hormonal values?
3. How is his sugar control?
4. What is his calcium values?

Awaiting your reply with answers to above questions to provide you more specific suggestions.


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