Where does AD/Dysautonomia come from?

I was speaking with an M.D. friend today.  She specializes in Family Practice, but the majority of her patients are over 50.  I discussed all the separate DXs and most especially the cardiac/IST, migraine, gastroparesis.  I asked her where the AD/Dys comes from.  She said that it would be very worthwhile to have saliva testing of hormone levels.  She said that saliva testing is more sensitive and picks up imbalances that often are not detected in the blood.  That way I would at least know if a hormone imbalance is possibly a part of the cause of the short circuiting of the Autonomic System. She said there could even be some other toxicity from food or environment.  She recommended an anti-aging doctor because they regularly test for all these things and know the ins and outs, regardless of age.  Everyone ages, so anti-aging is about aging healthily.  Anyone ever have any hormone testing?

[LivingInHope]

I had some saliva testing (not sure what all for) prior to P.O.T.S. diagnosis from a company that sold supplements, but they came back with saying I had two imbalances-anaerobic imbalance and parasympathetic imbalance.

Catecholamine testing I've had & other hormones after a pituitary tumor diagnosis (the tumor may have resolved according to latest f/up MRI study).  I had one low renin and aldosterone, and I've had catecholamine related testing out of ranges here and there.

[ParrotPal]

Hi SurgiMenopause,

What kind of doctor did the test?  Or was it a mail-away?  

Just wondering what made u decide to have the saliva testing?  And what kind of recommendations or follow-up was recommended and if you did it and how it went, if you did.  

Thanks for sharing your experience.

[enzymelover]

Hi!  One of the first tests my son had when he started having symptoms was a saliva test, which found a severe food allergy (actually, a food sensitivity, different immune reaction) and also adrenal fatigue. The test was done through a chiropractor/nutritionist. Unfortunately his regular doc ignored this test result. One year later, my son was found to have a pituitary tumor and severe adrenal, thyroid and growth hormone deficiencies, all secondary to the effects of the tumor.

Saliva tests do pick up imbalances before they show up on a blood test. My son had a lot of digestive/gastro symptoms with the start of the adrenal hormone imbalance. He was recommended some supplements in the beginning, which did help him feel better for awhile, but since the tumor was still growing (and no one was aware of it yet) he eventually got much worse.

I highly recommend getting  endocrine hormone testing if you have an AD diagnosis, if for no other reason than to rule out thyroid and adrenal hormone dysfunction. My son, serious as his condition was, had "normal" blood test results, until after much damage was done, but the saliva test caught the condition early (his doctor simply chose not to believe it).

[LivingInHope]

Getting the saliva testing was the idea of the acupuncturist/herbalist I was seeing at the time.  She then had me take a number of different supplements, including taurine, mostly pills but some drops also.  That was trying to get me in balance.  I think she re-tested at some point and adjusted how much of what supplements I was to take.

  And she had me doing some special diet.  The papers I still have which tell the kinds of imbalances say what kinds of foods you want to avoid when you have those imbalances.  When I was on the diet she put me on, I felt like I was starving.  I remember cooking fish on the stove & putting seasoning on it since she didn't want me eating breaded fish sticks or breaded filets and feeling so starving I got turkey meat wrapped in lettuce and ate it.

[ParrotPal]

Sorry to hear about the medical world failing your son and the damage it did.  Question:  When he was diagnosed a year later with the pituitary tumor and severe hormonal deficiencies, how was that diagnosed?  i.e. how did it happen that a doctor saw him and tested and diagnosed these problems.  

It is just mind-blowing to me how so many patients, sick patients, fall through the cracks until they are in severe or crisis situations.  

Thanks.

[enzymelover]

How did it happen that my son was diagnosed? That's the scary thing. It was all my internet research that led me to know I needed to get him to an endocrinologist asap. His doctor was blowing off all the symptoms as stuff he would grow out of. Ironically, he even blew off the fact that my son had stopped growing!  (he had no growth hormone secretion)

And then I was lucky to take him to an endo who recognized what his symptoms could mean - headaches + nausea + appetite changes + no growth = pituitary abnormality. She immediately ordered a prolactin test (a prolactinoma is the most common pituitary tumor) and when his test showed his prolactin was elevated ( only 50, but that's still significantly high for a little boy) she ordered an MRI. Bingo!

I disliked computers intensely before this happened (my husband had become a computer addict), but it was the internet and luck that saved my son.

[LaLa4]

How does a doctor ignore "headaches + nausea + appetite changes + no growth" in a child???  You can't possibly be more clear that something isn't right.  I'm sorry you had to deal with that, that's awful!  
Why do doctors just shrug us all off?? It's really disturbing...

[Kavbear]

I worked for a nutritionist/chiropractic internist/ oriental medicine doctor for several years. She said that's the problem with western medicine, nothing is done until you are diseased.
She had a special program that compared blood test results that fall into most "normal" ranges that show our body in disease state to what range should be and she caught things in me ( like my low progesterone levels causing migraines) that still today typical blood tests say my progesterone is normal.
Unfortunately I can't see her now :-/

[enzymelover]

That doctor did know that something was wrong, but thought it might be a psychological disease or just allergies. He said I should take my son to a psychiatrist, because he also had developed extreme light sensitivity and sensory defensiveness. As it happens, many people with pituitary disease are first sent to psychiatrists, due to the mental and emotional changes they experience (which are from hormone fluctuations). Their docs tell them "it's all in your head", but then they find out they have a pituitary tumor, so, it physically really is in their head!

[enzymelover]

That is interesting, about your blood test levels. It reminded me of something I read recently which, if it is true, has a profound effect on blood hormone testing. This statement is from Dr. Paul Cheney, the Chronic Fatigue doctor in NC.

He says that when growth hormone is insufficient, it affects the cell receptor sites, where other hormone are taken up into the cells. Lack of growth hormone can cause other hormones to become ineffective, so even though they are at normal levels in the blood, they are not getting into the cells!
He is referring to adults with growth hormone deficiency and CFS, and the research of Greta Moorkens, in "Endocrine and Metabolic Aspects of the Chronic Fatigue Syndrome," PhD. thesis,May 2000, Antwerp University, Belgium.

Now, my son has hormone levels that usually fall in the "low normal" range (excluding his non-existent pituitary hormones). He has a severe growth hormone deficiency still (he may get to start the shots in a couple of months - yay!) He just had thyroid, norepinephrine, aldosterone and testosterone blood levels done. Thyroid was "normal" (he's on synthroid), norepin. was normal, aldos. and testos. were both low.
Although he has severe orthostatic intolerance and has gained 25 lbs. since starting thyroxine, his doc will not increase his dose, based on this test.

But, what if his existing hormones are not getting into his cells, due to the growth hormone deficiency? How many doctors think to test people for lack of GH, with any illness? How many people are suffering needlessly, with "normal" blood hormone levels, and undetected GH deficiency?  Dr. Cheney uses tiny amounts of growth hormone to help his patients recover from CFS. He believes that the reason young people recover more easily than older people is the growth hormone factor.

Obviously, giving growth hormone isn't the answer for everyone with AD symptoms. "Developmental POTS" in adolescents is believed to be caused in part, by excess GH.
Still, growth hormone is the ultimate "healing and repair" hormone. I wonder how many people would be helped by a trial of GH injections, if they could get their doctor to test them for low GH in the first place?

[Kavbear]

I went to the Mayo and they did blood and urine tests that labs here have never even heard of or can find an alternative to test say a certain liver enzyme (and they won't call the Mayo and ask which makes my blood boil) and they never tested my growth hormone, even when my cortisol was almost nil over several tests (the challenge test brought it up JUST enough for them to not give me supplemental _____( I guess cortisol, I never asked).
We assumed it was because of having too many steroids in the past, but Endocrinology did not have my autonomic testing back so I am often left wondering if a piece of my puzzle was missed.

Here after several draws (pre-Mayo) testing my hormones the doctor who ordered the darn tests told me the levels are so unreliable depending on so many factors that they didn't mean anything, UNLESS they showed up as none.....

I'm trying to figure out what to do know with several blood tests, I have several levels that are all over the place, and having been in and out of the hospital so much the last 6-8 weeks some are a day to maybe 3 days apart, some show too high and the next day the same test is low or normal, then my internist retested them and they came back (mostly) normal but different ones are out of wack....so what is it???? (all are endocrine or liver enzyme things I am wondering about)

[Heiferly]

If you find an answer to the endocrinology puzzle, give me a holler.  I've hit complete brick walls with endocrinologists.  I know I have hypocortisolemia, but nothing was ever really done about it and no one seemed to want to figure out what is causing it once they identified that it's not Addison's.  Meanwhile, there's other stuff that hasn't been tested for that I think maybe should have been.  I think every local endo I've seen has been clueless about dysauto (well, I don't just think, I *know* ... but anyway) and I haven't yet tried seeing one up at Cleveland Clinic.  

I want to believe that something could be done about this stuff, but on the other hand, from what I can see the endocrinology research in dysauto is still being done by dysauto specialists (i.e. neuros and cardiologists) rather than endos ... which means that endocrinologists really don't care about us from a research perspective, I think.  I would love to see some research on us actually published in an endocrinology journal with actual endocrinologists having collaborated on the study.  I feel like from the ones I've seen that all they really want to take care of is diabetes and thyroid and if anything is more complicated than that, they'd rather you just buzz off.  

Sorry, that's my rant on endocrinology ... as you can tell, I've had bad experiences with endocrinologists.  :-(

[Kavbear]

I feel like I hit walls at every turn so I feel ya.  I know there are neuro-endocrinologists and I know our adrenal glands play a part in this lovely journey and Endo's are supposed to be the adrenal "knowing" doctors so why aren't they care (its a tantrum rhetorical question)
@#*)@__^$$

[ParrotPal]

Has anyone heard of or seen these endos at Univ. of Miami?  I made an appt. for after my Mayo visit so that if I need a follow up I have somone set up instead of waiting weeks or months.  

Dr. Alejandro Alejandro
Dr. Anup Kumar Sabharwal
Dr. Atil Y. Kargi

Also, at Cleve Clin Weston, there is a neuro, Dr. Efrain Salgado.  One of the dx on his list of "specialties and diseases" that he treats is "dystonia".  So I clicked on it and the first thing it refers to under dystonia is dysautonomia.   I had previously thought of dystonia as a more specific d/o related to muscles.  Has anyone seen or heard of this doc?

[enzymelover]

I do know that pituitary secretion of growth hormone can effect certain liver enzymes, and the release of growth hormone is pulsatile, so that may have something to do with your liver enzymes being "all over the place". How long ago was your ACTH challenge test?

I know it is a lot of trouble, but would you consider posting your blood test results? (the actual numbers, I mean) Endocrine levels normally go up and down throughout the day, so you might need constant testing for a short time to find a problem. These tests are often messed up too, which prevents an accurate reading. Just one test, that appears "normal" doesn't mean much. Unfortunately, unless that first test is really abnormal, doctors don't continue to test endocrine function, without justification.

With Dysautonomia, it's important to see a neuro-endocrinologist. Heiferly's right. Regular endos only seem to be well trained in diabetes and thyroid issues (and some of them aren't even any good at that!) A neuro-endo with a lot of pituitary knowledge is a better bet. Hypothalamic and adrenal disease has been implicated in many cases of autonomic dysfunction, so I believe it's important to pursue a full endocrine workup to rule out endocrine causes. And unless another cause is found, such as a heart abnormality, chiari malformation, or spinal chord injury, I think, if symptoms warrant it, the endocrine possibility should be re-visited, especially since changing hormones as we age can have such a profound effect on us all anyway!

[Kavbear]

My ACTH challenge test was done in late April.  I am going to put together all of my labs and make a list of the same tests, dates and times and give them to the Cardio. next week and show him what I see and if he knows of a Neuro-Endo and just go.
I will try and remember to come back here and post them too.

ParrotPal-
I do not know his name (or if he has a clue about AD) but a family I know has a daughter with type 1 diabetes and they fly her down to U of Miami because one of the best endocrinologists in the country is there (they fly her down that day if she wakes up and can't get her blood sugar under control after a night of drinking :-/
These people do their research and have the money for the best.  I can call them and get his name, I am gonna assume if he's top notch in diabetes its his only focus and if he's one of those three maybe cross him off the list.

[ParrotPal]

Thanks Kav31675.  

[Heiferly]

Sorry to interrupt with a love-fest, but I just want to say that you guys are fabulous and it's times like these when we're all working together and trying to figure things out and help each other that make me SO proud to be a part of this community!  Thanks guys!!

[LivingInHope]

Enzymelover may recall this thread:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Could-there-be-a-hypothalamus-problem/show/1262886?personal_page_id=862335
where I was wondering if the hypothalamus gland could have a problem with people with dysautonomia.  Enzymelover- in case you haven't seen this info, I had a f/up MRI re: pituitary tumor and it seems the tumor has resolved (planning an MRI f/up in about a year to try to make sure)- and the radiologist says there MAY BE a small pineal cyst on the same report.  I learned when symptomatic, one of the most common symptoms is headache and migraines.  I know people with dysautonomia can have migraines as well (like I do), but am wondering now IF I have a cyst if it might sometimes be a contributing factor to my migraines.

[enzymelover]

Hi! Yes, I did read that your tumor seems to have resolved. That's great news! I don't always have time to respond to posts before my son takes the computer from me (and I often forget some of the pages I've read, when it's finally my turn again).

I have a couple of sentences here written down on a notecard, but didn't write down the website I got it from. It just says "damage to the ventromedial nucleus in the hypothalamus results in obesity" and (I love this one) "Hypothalamic disinhibition of efferent output of the vagus nerve, affecting pancreatic B-cells, causing insulin hypersecretion, leads to obesity"
LOL  Okay.  Sure.

I don't have much pineal gland info in my brain. I'm sure I could make room for it, if it became an issue for my son, but right now I have the malfunction of too many other glands to deal with as it is. I will pass on to you anything that I find that may help you, however.

[LivingInHope]

Yes, God is gracious and I'm happy about the pituitary tumor seeming to have resolved!  Spoke with the radiologist this morning and he measured what he's not sure is anything on the pineal gland, but it measured about 6 mm or so.  No need to research for me about it- don't worry about that.