Did the doctors who stated that it is autonomic dysfunction do any tests? If so, what type of tests did they do and what were the results? Also, what type of doctors were these (cardiologists, neurologists, family practice, internal medicine, etc.)?
As far as Gilbert's Syndrome goes, what tests were run? Did you have a CBC and liver function tests? And did those came back normal except for the unconjugated bilirubin, or no? What type of doctor did you see/are you seeing for that?
Thank you for your reply!
Full blood tests were done several times, only bilirubin was a concern.
I've seen cardiologists, they did cardiograms several times and they were more or less ok (some small arythmia once), bycicle stress test and heart ultrasound were OK.
Also ultrasound on liver and kidney were done. Stomach checked by tube swollowing. Endocrinology tests (hormones) we OK. They also did a computer tomography on my whole spine.
I'm not really sure about the liver function test, but my family practice doctor sent me to infectional clinic to test for hepatytis, they did a test and diagnosed Gilbert's syndrome after an hour as there was no sign of hepathytis. My family practice doctor also stated that it's Gilbert's because of skin itching, nausea, Diarrhea and elevating bilirubin.
Though all other doctors conclude that it's autonomic dysfunction because all tests are OK (I forgot to mention that I sometimes get thyroid spasms, that's why I went to endocrinologist)
My spine doctor (who is also a neurologist) rejected to treat my mild spine deformation because he was sure I have autonomic dysfunction and that I need to eliminate it first to get clear effective results.
I also went to a private neurologic clinic for a unique test (atleast in my region) that they do, it's called autonomic dysfunction test. They measured my brain activity, breathing, skin temperature, heart beat etc. The conclusion was that "ANS functional regulation has dysfunction features with an expressed PNS influence domination". "ANS lability is increased with tendention to SNS".
Thought they said, that this test is quite unaccurate and there is even no need to repeat it.
I don't really see any doctors anymore as I don't know whom should I see and what to ask.
Though I think I'll go to see my family doctor to ask about the liver function test and maybe repeat it.
Though I still can't stitch all parts together and understand how should I live to make things better.
I'm really leaning towards the autonomic dysfunction, but I don't know if it is able to influence my bilirubin?
I'm not sure where you are because it doesn't say in your profile. There are clearly defined tests for autonomic dysfunction but I can't tell from what you've posted if the tests you were administered were legitimate tests for autonomic dysfunction or not. The results that were given to you are not stated in a way that is standard/typical for the results of autonomic testing that I've ever heard of. It's especially bizarre that you would be told that the test is inaccurate and not to repeat it. Was this just ONE test, or a battery of tests? Sorry, I'm not sure if I can help much if this isn't testing that I'm familiar with at all and/or you're in a region without access to the type of testing with which I'm familiar. I'm sorry about that.
As to whether autonomic dysfunction and the bilirubin would have anything to do with each other, it seems pretty doubtful. You might have better luck consulting a doctor on the site. Have you asked about this in any of the Expert Forums? Those have actual physicians responding rather than patient-to-patient support and they might be able to provide you with further insight.
can you tell me more about the tests that you were given, how they are performed and how do the results look ?
Sorry, I do see your question and will get back to you in the next couple of days. Just unwell myself at the moment. Thanks for your patience. :-) -Heiferly.
Hello again,
I just wanted to check in and see if you'd had a chance to read over any of that information and if it had been helpful to you at all. I hope you will let me know if you still have questions; that was just a starting point and I figured we could address your questions in more detail from there.
Thank you Heiferly
I just seems getting too deep into this topic gets me depressed so I don't really want to go all it all over again, especially because whether it is gilberts or dysautonomia, the threatments are mostly the same - less stress, good eating habits and so on... anyway I think I should just go on to Yoga again and see what happens.
Anyway some better threatment advices would be very helpful because most of you probably went through alot.
Yesterday though I just listened to some music that immidietly made me feel sick, started with head pressure, heart vibrations, now I have nausea and muscle pains. This is a typical symptom cycle.
Note that I probably have a PNS domination as stated by tests I did.
Thank you!
I’m going through the same thing my Bilirubin levels have been high for almost 6 years (indirect and total) my direct is normal. I also have pretty bad jaundice from it about my eyes.
The end of 2020 I was diagnosed with dysautonomia (POTs).
They can’t figure out why my Bilirubin is high, Gilbert’s has been mentioned but I haven’t been formally diagnosed an they are telling me there is no connection to the POTS. Good luck on answers because I haven’t even went through half the doctors or tests you have yet an I feel completely defeated.
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/HOLY-MOLY--I-found-one-of-the-MAJOR-autonomic-tests-WEST-of-Mayo/show/1264582
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Back-from-follow-up-in-Cleveland/show/1317407
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/New-info-from-Cleveland-Clinic/show/1363155
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Cleveland-Clinic-Syncope-and-Autonomic-Disorders-Clinic/show/1004815
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Tilt-Test---First-Time---Please-share-your-info/show/1378047
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Symptoms-of-dysautonomia/show/1379117
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Names-of-Doctors-in-South-Florida/show/1361299
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Cleveland-Clinic-Eval-Update/show/1052286
Let me know if those links give you a better idea of what types of tests may be included in autonomic testing and what questions you come up with. :-)
Best,
-Heiferly.