Gemma

Lulusoccer, do you remember where you read that research paper? I would like to read it. Thank you.

Ohh wow. I didnt know that. Is this like a permanant thing for us. This doctor who did the tests for me wanted me to start taking dexamethasone steroid. She said it will make me feel better. However, I don't understand how it will make me feel better, if my Cortisol is elevated which is not typical in adrenal hyperplasia. I am afraid it will elevate it even more. During the day my cortisol is normal. I told no to the drugs for now and said I wanted to see what the additional tests show. Also, i took flurinef before and it gave me anxiety, so not sure if it would benefit me. Also, my blood volume test is normal. So, could this mean that we don't really have adrenal hyperplasia, just same symptoms because of POTS? Maybe it could be a cause of POTS. Lejones1, did your doctor treat it somehow or he just said its due to POTS and leave it at that? I am so confused with all of these different tests and diagnoses, its crazy.

My doctor still wants me to do one more blood work, then ACTH stimulation test, then 2 different urine tests. I hope she finds whats going on. For now it looks scary and I dont know what all those abnormalities mean.

Hello everyone. I wanted to ask about hormonal disbalance. I just had a lot of blood work done, and it showed so much abnormality in different things. My previous endo doctor did some basic blood work and when that showed normal, she said you don't have any hormonal abnormality and just take SSRI and you will be fine. Although, even on those tests my DHEA was around 1000 and norm high is 700. Also, my cortisol in the morning is showing high almost double, but during the day it is fine. So, now I went to see another endo doc for second opinion and she ran more tests. My cortisol in the morning is still high, like 24, my DHEA is 1086, 17-hydroxypregnenolone is 936 and norm is 53-357, prolactin is high 27 and norm is 4.8-23.3, androstenedione lmcs high 280 and norm is 28-230. Also, for some reason, now i am showing abnormality with thyroid, my thyroxine T4 is high 2.15 with norm of 0.82-1.77. This is crazy. When I got my results I got scared. It looks like my whole endocrinology system is messed up. This doctor is going to do more tests for me, some blood works and urine test. She said she is not sure what is going on yet, but looks like I could have adrenal hyperplasia. Also, she said that with these results I will never get pregnant and all of these abnormalities need to be fixed. I just wonder if anyone here was ever diagnosed with either adrenal fatigue or hyperplasia. And if you guys got similar results. Thanks all.

Hi lulusoccer. Did they do more tests, blood work to check if you could possibly have adrenal hyperplasia? I just had a lot of blood work done, and it showed so much abnormality in different things. My previous endo doctor did some basic blood work and when that showed normal, she said you don't have any hormonal abnormality and just take SSRI and you will be fine. Although, even on those tests my DHEA was around 1000 and norm high is 700. Also, my cortisol in the morning is showing high almost double, but during the day it is fine. So, now I went to see another endo doc for second opinion and she ran more tests. My cortisol in the morning is still high, like 24, my DHEA is 1086, 17-hydroxypregnenolone is 936 and norm is 53-357, prolactin is high 27 and norm is 4.8-23.3, androstenedione lmcs high 280 and norm is 28-230. Also, for some reason, now i am showing abnormality with thyroid, my thyroxine T4 is high 2.15 with norm of 0.82-1.77. This is crazy. When I got my results I got scared. It looks like my whole endocrinology system is messed up. This doctor is going to do more tests for me, some blood works and urine test. She said she is not sure what is going on yet, but looks like I could have adrenal hyperplasia. Also, she said that with these results I will never get pregnant and all of these abnormalities need to be fixed. I just wonder if anyone here was ever diagnosed with either adrenal fatigue or hyperplasia. And if you guys got similar results. Thanks all.

Hi. Everytime I tried a beta blocker I develop really severe cough, feels like asthma attacks. I tried coreg and then atanolol, really small doses. I have chronic cough for the past 2 years, that are of unknown cause. Have done many tests for asthma and all are negetive, but still have caugh. I went on gluten free diet and my cough decreased by like 80%. However, when I take beta blockers, it gets so severe, I feel like I am having nonstop asthma attacks. I even went to ER couple of times for it. When i told my doctor, he said that you only cough from beta blockers if have asthma. Well I dont have asthma, and cough from it. The cough starts the next day after going on beta blocker. When I stop it, it still stays for like 1-2 weeks and then subsides. I am trying a calcium chanel blocker verapamil now. I got it for my chest pains, to try and see if it could be vasospasms. It does help with chest pains and I have no cough from it. However, i feel more tired on it. I really hope the tiredness goes away as my body adjusts to the med. I also have suspicion that I might have MCAS, however i didnt have proper testing for it yet. Does anyone know if calcium chanel blockers do simmilar things for POTS as beta blockers do? I am so scared of these heart meds. Are they worse for our bodies then beta blockers. I am asking because wonder why doctors usually prescribe beta blockers for patients and calcium blockers are reraly priscribed.

Thank you all for replies. So, I guess no one was really prescribed this med for the POTS. My primary keeps on pushing on this med and says that it will help me. However, I spoke to some other POTS specialists and they say that it can lower my BP even more, making POTS worse. But every time I go see my primary, he says did you start taking amitryptoline again. Ohh, i really do not want to change primary doc again. It will be a third one in the last year and a half. However, I really do not like that he keeps on pushing this med on me saying that it will help my POTS, and that he saw some POTS patients benefit from it, when so many other POTS specialists say that they think it will make my BP drop even more and make me feel worse. I am confused. But thank you all for replies.

Thank you Amy for the info. Its an interesting experience. I just recently went to major clinic as well. I had lots of testing done for dysautonomia, but didnt geta chance to see other specialist besides neurologist. Plus the doctor that I saw there said that I might not have anything wrong with my autonomous system. So, i am so confused. My neurologist locally and local cardiologist says that I do have POTS. I was hoping to see other specialists there, but was not refered. So, now I am thinking about scheduling an appointment with Mayo clinic and this time I hope to make a right desision with choosing the clinic. Gjensen, i do not know how severe your condition is but just wanted to let you know that 7 hours drive is really not bad at all. I had to travel 15 hours to this clinic that I just visited. We spend a lot of money on this trip. We had to stop for overnight sleep at hotel on a way there and back, plus 3 nights in hotel there. A lot of expenses. I am glad I got all the tests done, but still have no answers. I don't know what exactly going on with me, which type I have and don't know the underlying cause. But I am glad that based on the tests they were able to tell me that I definetly do not have pure autonomic failure. I am thinking of going to Mayo because hope that maybe there they could find out the cause and suggest a treatment plan. Honestly if I were you and had Mayo only 7 hours away, i would go there. For me its different. The one in florida is like probably 17 hours drive. And the other I have to fly because its really far.

Hi, amy in ny. May I ask, were they able to give you a diagnosis? I feel like mine has something to do with either MCAS or hormonal, or autoimmune, but local docs are not able to figure out. I wish i could be seen by other specialists, not just neurologist. Did you schedule appointments with other specialist in advance or they scheduled them when you were there? Thank you for all the info.

Gjensen when is your appointment in florida? I had appointment there but canceled because decided to go to another clinic. I want to schedule Mayo appointment again soon. If your appointment is coming up soon, can you please let me know how it went. Florida is like 20 hours drive from my house, but much closer then other locations and my husband can drive me there, but to other locations I have to fly and I am really scared of flying since I got sick. I wanted to know if they specialize in dysautonomia conditions. I was not able to get that information over the phone and was told that i will see a physician first and then he/she will decide who else I need to see.

Hi corina. I hope we are not writing anything against regulations here. I just posted this question because wanted an advise which Mayo clinic specializes more in disautonomia. Is that against regulations to ask? With my latest bad experience to a clinic that I can not mention on here, I wanted an advise from people about Mayo, to make sure that I can schedule appointment at the right location. I have heard that all mayo clinics are good, but some specialize more in certain conditions and I just wanted to know which Mayo location specializes more in dysautonomia. Hope asking this is not breaking any dinet rules. Thank you.

On my test results it says normal standing is 80-520, mine was 792. In all the literature that I have read it says if its above 600 then considered hyper.

Hi, i tried Lexapro before as well, but only lasted for 9 days. The side effects were unbearable. Now my doctor gave me zoloft to try, but I am so scared to do it. I see a lot of people here take some kind of SSRI, as it says in there signature and I wonder if they take it for POTS or other reasons. I dont have depression and my anxiety is from all of these POTS symptoms.

Hi icelizard. Can I ask, so hyper POTS can also have low orthostatic BP. This is what I have, but my NE is high upon standing, so doctor says I have hyper pots and also suspects MCAS. But I was always under impression that hyperpots needed high BP.

Hello everyone. My doctor suggested to try birth control pills to see if i can regulate my hormones. All the tests show normal at fertility clinic, but when i tried clomid i felt like i was almost back to normal after that. Also, i want to mention that my first symptoms started after my miscarriage, so there is a chance it could be hormonal. However, i do not understand how can birth control pills help if they have estrogen and progesterone released and clomid blocks estrogen and releases more fsh and LH. I felt better when tried clomid to test for ovulation, and BC pills do the opposite. Anyone have any suggestion on this. Thanks.

Hi, i was just reading an article about this med and I believe they supposed to make final decision by march 28 here in US. I just wonder if it would be appropriate for people with already elevated NE upon standing. Mine is elevated when i stand, and doctor says i am hyper pots, but my BP is low and drops when i stand. Ohh i cant wait to find a drug that could bring my life back. I am so happy for you dops that you found a med that helps you.

Keep us updated with the test results.

Hi girls. Thanks for answers. My catecholemines did go up upon standing. Laying down it was within range, but on standing my Epi went down a little and my NE went to like 786 i think, above 600 norm. So, based on this doctor is saying hyper, but my BP very rarely goes up on standing, it actually always drops systolic by like 15-20 points. I am just getting confused with the whole concept. So, NE is more like a stress hormone, so when its realized it should constrict blood vessels and this way BP should go up and HR should stabilize. So, I do not understand how could I have increase in NE and have drop in BP. Thats interesting. But you all say that the definite test is the blood catecholemines to know if hyper, right? Can I also ask. Are SSRI good for people whose NE elevated upon standing? Or SNRI? Thank you.

Yes i will call him next week and ask, because it doesnt sound like what I have.

Hello again everyone. I a, really devastated. I can not find a local doctor in my area that would be interested in my case. I have two cardiologist, who are nice, but they do not participate much in my treatment or interested to find out whats going on or how to help me. They tried common meds on me such as midodrine, fludo, beta blockers, amytriptoline and that is it. All of these meds failed and I am left with nothing. I went to big clinic a week ago, and didnt get any recomendation there either. I was told again to do fluids, salt and little fludo. I did these for 4 month with no improvement so obviuosly it doesnt help. I am supposed to return to school end of May, i was on medical leave for a year, and I dont know how to even manage it if I have no meds to help and no doctors who is willing to try things with me. I do have one doctor in NY, he is really nice, but far from me and I only see him every 3-4 month. Also, he is very passive with treatments. I basicly do all my research about meds and what could be happening to me, but then they dont even want to try any new treatments with me. Please if anyone sees this post and you leave in the Philadelphia area, please share your doctors information. I am even willing to go to some private or holistic doctors and pay cash, just so someone will be willing to give me advice and try things with me. I had so many hopes for the big clinic that I visited, but returned with nothing. I think I might be falling into depression because of lack of help from any doctor. Thank you all flr reading this.

Hi Freaked. Sorry I didnt really understand you reply. So, can patients with Hyperadrenergic POTS have low blood pressure. I was always under impression that they supposed to have increase in BP upon standing, but mine actually goes down. Usualy sitting systolic is like 105 and standing is like 85-90. I think low BP runs in my family. I measured it on my mom and her sitting is same as mine, maybe 110 and standing is in 90s as well. However, her HR doesnt jump like mine and standing is in 70s, but mine goes above 100s.

Ok, thank you. I will try to search on here. I had appointment at Mayo in florida, but cancled that one because heard that they do not concetrate on POTS as much as other locations do.

Thank you!

Hi Becia. The way you decribe how you felt during testing and that you almost passed out, i am pretty sure it will show something. I on the other hand had a good day while doing testing st the center I visited and was told that my symptoms are not of the autonomic dysfunction nature, but could be something else. Although like almost 10 doctors say that it is dysautonomia. I have checked everything else posible, so what else can it be, something thats hiding really good . I started thinking maybe its just CFS, but I do not match all the symptoms. Anyways, wait for the results and dont worry for now. Thr doctor at the clinic also told me that I dont have dysautonomia after my autonomic testing showed normal. She basicly wrote me off, saying I need to look somewhere else. But few days later my blood catecholemines came back and my NE inreases when I stand up, so thats abnormal. My local neuro doc said that POTS sometimes can not be diagnosed by testing unless it is a very severe case. I have good days and bad days and also never passed out. So if my test is done on a good day, it will show negetive. Plus the technician was talking to me thruout the who,e test and I think my results are a little off, because I noticed at home when I talk during the time measuring BP, it either gives me error or it show slightly higher HR. I told that to the doctor but she didnt care. I hope you will get some answers and some good recomendatins. Keep us posted. I am thinking of going to either Cleveland or Mayo next. Cleveland is much easier to get appointment. Were you tests prescheduled already? And do they allow to see other specialists like Mayo does, or just one doctor?

I think the one that neurologist does is part of the autonomic function test, where you lay on the table first, then do breathing Valsalva maneuver, and then they raise the bad at like 70 degrees for 10 minutes and look at changes in your BP and HR. The one cardiologist does is just laying on a table for like a minute and then they raise the table and watch you until you faint or vitals become really bad, then they lower you. I am not sure if what I am saying is correct, but that is what I had done, unless the cardiologist has different versions of tilt table testing.