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Anyone have their hormones checked?


PattiL
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Hi everyone,

Last month Chrissy wrote about her dry eyes and Poohbear suggested her getting her hormones checked. Well, in the Sept. 26th edition of "First" Magazine, they had an article about the Adrenal Hormone and how it can 'steal your energy'.

Some of the symptoms are:

unexplained tiredness (especially in the morning),

headaches/dizziness,

cravings for sweet or salty foods/need for coffee

brain fog

shakiness, especially with missed meals

mood swings/depression

weakened immunity

WOW!!!

Poohbear you mentioned that you had your estrogen, progesterone, and testosterone checked, did you ever have your adrenal hormone checked? How about anyone else?

Whether you have POTS or not, I 'm thinking it's worth a shot to have these tests done to see if it could be something else contributing to the symptoms. The web site Poohbear mentioned as did this article is:www.salivatest.com; www.adrenalfatigue.org, was also mentioned in the article.

If any of you have had these done, is there a particular Dr. to go to for them? I know you can order the tests on line, but was thinking it might be less expensive through insurance by going thru a Dr. I'm going to call Chrissy's pediatrician Monday to see if he's willing to run these test, or if he's familiar with them or I'll try her local cardiologist.

Thanks everyone, take care,

Patti

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patti -

i'm guessing the "adrenal hormone" that's being spoken of is cortisol. there have been several discussions on the board re: that & some have been tested and have aobnormalities - myself included. an endocrinologist is the type of doc to see for the testing but unless the deficiency is primary, something that you'd likely already know, there are several "levels" of testing that may need to be done. i've been on cortisol supplimentation for several months now but honestly am not sure if it's helping me at all b/c i had other med changes not too far apart. it's not hurting, & it's the likely explanation for why i've had such horrible reactions after surgery & testing as of late - not just in an autonomic sense.

the initial test is just a blood test for cortisol levels which likely, whether you know it or not, chrissy's had done before as it's included in many of the bloodwork panels. that's to check if there's a normal amoutn of cortisol in the system at a random time. then there is a test that requires this to be repeated (for baseline),an injection (to stimulate the adrenals..i forget what is injected), and then an additional blood draw about an hour later to see what the cortisol levels are following the body's rxn to the injection. essentially that's testing whether or not the adrenals can make cortisol themselves (if they can't at all that's Addison's Disease, which several members of the forum do have) as the injection stimulates them directly. my tests for that were ok. if the doc sees a need to go further (i.e. b/c of symptoms, curiousity, thoroughness, etc.) then a test is done to see whether the body is properly able to produce more cortisol in response to physical stressors of any type (which is what is supposed to happen). for this you stay in the doc's office for a few hours & have a heplock in (b/c of several blood draws & injections). the gist is that they again take your baseline cortisol level but then intentionally put your body into a state of very noticable (and miserable!) hypoglycemia via insulin (through the IV). as this is a physical stressor, the body should produce more cortisol as a response...quite a bit more in fact. they test this again & then raise the blood sugar back up which is MUCH appreciated. regardless of the results people generally feel rotten during the hypoglycemic part of the test, but i was laying down & watched the entire time. if the cortisol levels don't rise (or fall, which mine did), then there's a problem in the body's communication between the pituitary & the adrenals & various other things...so, the adrenals themselves work but don't respond as they're supposed to in response to stressors, which can be anything from the "stress" of exerting energy to something more severe as surgery. confused yet? i think i explained these tests in other posts a bit more coherently...

one of my docs in baltimore (neurologist & autonomic doc)had "coincidentally" found some correlation with endocrinologist colleague of his in regard to patients they both had improving after treatment of their cortisol/adrenal insufficiency. that's what prompted my getting tested this past year. when i asked the docs at vandy about it (i was scheduled for the testing but hadn't had it yet) they weren't familiar with any correlation but said go for it in re: to finding out anything that could help &/or provide treatment direction. i am planning on weaning off the cortisol to see if symtoms change notably (at endo's direction) but am not willing to do this while in classes in case is prompts a major crash so it will have to wait. i'll always need to get cortisol (IV) though if having surgery or invasive testing in the future though....

hope this helps. let me know if you have any other questions...

:lol: melissa

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here are two of the more recent threads where there is a bit of discussion about cortisol issues & the related testing...

http://dinet.ipbhost.com/index.php?showtopic=2770

http://dinet.ipbhost.com/index.php?showtopic=3061

:lol: melissa

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Hi Melissa,

Yes, the hormone is cortisol. Thank you, thank you! I hate it when I ask a question that's already been discussed! I must not have 'keyed' in the right words when trying to look up past posts. Thanks so much for your explanations. I'm going to call her Ped just to make sure she's had these tests, as you mentioned she probably has. thanks again so much.

Patti

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patti-

you're welcome:-) just to clarify, i doubt that she's had anything but the initial blood draw (unless she's had an extensive work-up at an endocrinologist). she would have had to be at an endo to have the others and i'm pretty sure they'd be something you would have been aware of.

so glad to hear that chrissy's doing so well at school!

:lol: melissa

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Guest Finrussak

Hi

Just thought Id add my 2 cents. Many magazine articles targeted at general population often oversimplify which ironically confuses the issues. Lately there has been a LOT of talk about "adrenal exhaustion" ect...especially in my "home" community of Lymies and CFS people...all of us grasping at anything to feel better. What these articles are often pushing is DHEA ( which naturally falls with age) and general supplements supposed to tyarget the adrenals. The site below lists many of the chemicals the adrenasl produce ( not just cortisol) and how drug replacement may help. Its from a respected National Found for Adrenal diseases. Also please realize that many of the chemicals are transient---disappear quickly...and therefore hard to test. Plus a little known fact we biologists dont like to admit.and are increased for many reasons...good or bad....many of the so-called normals values taught in med schools and in text books are misleading...no one really knows what normals are...these are averages for a specific set of volunteers and are usually decades OLD...like blood pressure...we really dont know what is "normal" and for whom...its a guess based on what Drs report and on what MAY happen to those who have a "high" or "low" reading...lastly be very cautious...more times than shoudl happen the DRUG companies direct this research...like the sudden "need" for low cholesterol...there are many studies out saying that for some people low cholesterol will KILL them...which is why I SMILE when I am told to avoid salt...for me, when I am running low BP its a life saver...at other times when I am really revving ( severe episodes of hi HR and BP) I know to cut way down...and then rely on fluids more..

I am not suggesting you NOT look at all avenues but I am suggesting you approach with extreme caution at these general public things...like the list of symptoms you read...thats for more than ONE of the adrenal hormones..not all symptoms for just cortisol. also cortisol is the most common to test for 2 reasons...its easier and cheaper...and theres more data...a GOOD endocrinologist ( one who isnt relying on diabetes and thyroid dollars) should be able to sort it out...although I have been to heads of large hospital endo depts who didnt have a clue beyond my blood sugar and TSH being ok...again see the website

www.medhelp.org/nadf/tools/adrenalhormone.htm

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I had three adrenal tests which were all abnormal, but when placed on cortef, did not do well at all, so we have to be careful about this. It was the first time in a long time I felt we were getting somewhere, so it was a big let down. Unfortunately, so many symptoms of so many things overlap, it's just hard to know. I'm not saying you shouldn't get her checked. The test is easy enough, but I'd just request a 24 hour urine cortisol first, as it's completely uninvasive. Good luck. morgan

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Patti,

Yes, I had my cortisol checked along with the other hormones when I did the saliva test. Initially, the lab sent me a checklist of symptoms that I checked what I was having problems with and how often. That helps them focus on each individual and what hormones are most likely to be affected. When I did the test it was two vials of saliva collected (one in morning and one before bed). The test results came back showing abnormal cortisol levels so that test was repeated using a 4 vial collection (one in morning, one at noon, one at dinner and one at bed)...this gave them a better feel for exactly how bad the cortisol issue was and how accurate the first test was (the first test was conclusive with the estrogen, progesterone and testosterone).

My Dr. recommended this book if anybody is interested in it. I have found it to be very helpful and he also talks about why saliva testing is more accurate than blood or urine testing when it comes to hormone testing.

Adrenal Fatigue: The 21st-Century Stress Syndrome (Paperback)

by James L. Wilson

****Amazon.com has this book on sale right now for about $11 (shipping may be free if you purchase over $25 worth). I don't know how long the sale lasts

Also, for anyone interested, here is a website http://www.salivatest.com/store/symptoms_women.html

(there is also a separate list for men at this site). If you scroll down you will see there is a section for cortisol as well.

From the book I've read, most people with chronic illness with have some adrenal issues.

I've not improved a whole lot so it's not necessarily a cure but there are things that the book offers that are helpful to do and I certainly gained a lot of knowledge and affirmation by reading the book.

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Hi everyone,

Poohbear, you read my mind :angry: My next question to you was whether you knew if the saliva test was more accurate or not! I'll definetly discuss this with whichever Dr. we end up going to for the tests.

Finrussak, I couldn't agree with you more on how most/all these articles are for the general population. My mother-in-law, as well meaning as she is, caught this article and says 'this is Chrissy'. Although admitting she does have POTS, wondered, as I did, whether some of these overlapping symptoms could be cause by a hormonal imbalance. Oh Boy--another avenue to walk down!! Now my search for a good local endocrinologist! :angry:

Thanks so much,

Patti

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Hi Patti,

I think the hormones play an important role in POTS. I saw an endo last year and did some tests. He told me that everything was okay. I was just officially doagnosed with POTS then so I didn't mind, thought that trying meds my neuro prescribed would cure me (how little did I know :angry: ). Anyway, a few months ago my PCP told me that the endo had written him that the tests were screwed up because I used meds during testing (as I asked the endo before the testing, and HE allowed me to, but he didn't mention THAT in his letter :angry: ). So now I will see a new endo and ask to do testing on adrenals, a 24 hr urine test and some more which I forgot (but have on paper somewhere). I learned never ever to take meds during testing, no matter how dificult that is for me!

Good luck in investigating. I will let you know when I found something!

Corina

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Hi Patti;

I wrote a few threads about 4 months ago in regards to hormonal testing and it's effect on dysautonomia. I went to a hormonal compounding pharmacist. He explained to me that all of the hormones, in our body, have profound effects on eachother especially if they are not in balance. My doctor wrote an order to have my blood drawn and ALL of my hormone levels examined. The hormones include; all reproductive hormones such as estrogen, testosterone, estrace, etc.; thyroid, insulin, cortisol, adrenal and the receptor levels of the pituitary gland that stimulates those glands to produce the hormones. As it turned out, since I had a hysterectomy, my reproductive hormones seriously needed to be replaced. The lack of these hormones effected the rest of my insulin, thyroid, cortisol and adrenal hormone levels because they all somehow work off eachother. But now that I have the hormone replacement I need I have been feeling so much better. I have more energy and my dysautonomia symptoms have not been so pronounced. I am feel more and more like myself again.

I highly recommend talking to your doctor about this. This may not correct everything but you might find that getting everything in balance may help considerably with the symptoms of dyautonomia.

Good Luck,

KathyP :angry:

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Hi Patti!

Just wanted to "alert" you...Do the research yourself first. Read that book I mentioned if you can. MANY MANY Dr's are not aware of the saliva testing and they certainly are not ready to admit something could be better than blood draw. Be prepared for an uneducated response. Hopefully you will find a great Dr but I went through many of them before I got one who really listened to me and tried to help.

Also, talk to your Dr' about the "not so typical" thyroid test. They tested my thyroid over and over and said everything was fine but then I went to a Rheumatologist for some other problems and they did some autoantibody testing and found my Thyroid antibody was so high it was off the charts. Every Dr I went to said they had never seen an antibody test as high as mine. They started treating me for thyroid problems and it made a BIG difference.

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Hi again Patti;

I am sorry if I offend anyone, but I would not recommend self diagnosis!!! I have a hard time believing that a saliva test is more accurate than a blood test because the concentrations would be more accurate in the blood stream. After all, the blood stream is how the hormones travel throughout the body to begin with.

With saliva testing there can be various things that can change the balance of what is in the saliva such as low fluid volume (which is common in people with dysautonomia) and bacteria. I do not prefer saliva testing for hormone levels because the results are not as accurate as the blood test. Saliva tests for this are popular because they are cheaper to perform and you don't need a lab tech to collect your specimen.

It would be like saying that a home prenancy test is more accurate than a blood serum pregnancy test. The statement is just not accurate and dangerous to rely on.

Since Dysautonomia is new to certain doctors is it a good idea to learn as much as you can about your syndrome to find ways to alleviate certain symptoms. Self diagnosis just adds more stress and worrying about things you might not even have problems with. Educating yourself is very important, but remember the doctor you are seeing has had 8 years or more of medical school.

Hormonal testing is covered under insurance if ordered by a doctor. Ask your insurance company if they cover it. Most doctors are familiar with this testing since they have known about these hormones for a long time. After your test results are read by your doctor he then forwards your replacement needs to a licenced pharmacist that makes a compound designed just for you (your insurance may pay for part of this also.) You may find your nearest compounding pharmacist in your local telephone book under pharmacies.

The most sound advice I can give to you is to talk to your doctor about it. They may prefer one test over the other and they know how to accurately read the results. And heh, your doctor may prefer the saliva test, but that is their call. And also remember not everyone has the same needs. Every body is different. Best of luck!! I hope you find the answers you need.

KathyP B)

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