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Everything posted by sue1234

  1. How is everyone doing that was on this thread? So far, I'm okay and hunkered down. My new functional med doctor said if I get the symptoms, he will call out Plaquenil and Azithromycin for me.
  2. About five years ago, my 8 a.m. cortisol was trending above range a little, with a high-normal ACTH. Starting two years ago, it started trending down. In the beginning of last year, it was at the bottom of the normal range (around 5) with an ACTH sitting inappropriately low-normal (around 11), and my new endo did a Cortrosyn stimulation test in September. It came back 0.2 points BELOW the cut-off of normal stimulation(18 is the cut-off), but he said I was just fine and it was nothing to worry about. (I beg to differ). From my research, I think I have a pituitary that is not working correctly, so it isn't signalling the adrenal to put out cortisol. That is Secondary Adrenal Insufficiency. When my cortisol began getting lower those two years ago, I also got what I call a new case of having CFS. I used to have POTS but plenty of energy to want to do things but couldn't because of POTS. Now, my POTS is actually better, but I have no energy or drive to do anything.
  3. Have they thoroughly investigated your blood glucose levels, especially for a few hours after eating? Some forms of weight-loss surgery, specifically the Roux-en-Y, can cause people to have severe hypoglycemia. I haven't had weight-loss surgery, but I have had low blood sugar for a few decades, and the symptoms can be what you listed.
  4. @bombsh3ll What's the latest with you? Did you find more help? After reading this whole thread, I personally think POTS is only a symptom of another underlying cause. It is similar to having a fever, as it is just a consequence of something else going on. I will continue to look for the root cause after it POTS came on suddenly 14 years ago.
  5. I'm not sure what you mean by this...are you taking cortisol supplements already, before this low potassium lab test?
  6. Do you know if your cortisol is elevated? Having Cushing's Disease can cause low potassium.
  7. I did not have fatigue when my POTS began, but in the last few years, it has made an appearance and gotten bad. I don't take any meds, so nothing to cause it. It is my most debilitating symptom now.
  8. We already tend to vasodilate from standing in pretty much one space. Add heat from the shower, and it really amps it up faster. When that happens and less blood is getting back to the heart, it makes the adrenals spit out noradrenaline to help vasoconstrict that blood back up to the heart. That is why you get an adrenaline rush. As mentioned, cool showers are better.
  9. Kim, My sister does have the family holiday gatherings now, but I guess I meant that I was always making an effort to be available for various things and be involved within the family, but it seems no one ever does this back. I am not on disability. My husband has a decent job, and I didn't work but a year back in the 90s. I guess after no one in my family wanted to sit down and find out why I can't do anything anymore, I don't feel I want to include them in any of my health issues. I feel like they haven't earned the right to know anything that goes on, because they showed no interest when it began. I normally do fine with them not being involved in my life, but with the elderly parents getting to the point of needing to have life decisions for their care made, I feel guilty for not pitching in and am seeing that my opinions on their care carry way less weight because of my inability to physically help. Since being limited, I see how so many people create drama for things that just are not important or unwilling to accept change. So many gloss over reality, and want to keep life exactly as it is, at any cost. I have no patience for all that anymore. I just want people to be kind to others. Sorry about the excessive rant.
  10. I've had POTS for 13 years, and had quit driving before that. I did not have a sibling even inquire what was wrong with me, much less step forward to maybe drive me to dinner, etc., back when I could at least walk 20 feet into a restaurant and sit at a table(can't sit up like that anymore). Before POTS, my mom drove me most places, since we did things together. After POTS hit and limited me to mostly staying at home, pretty much no one came to help or even visit. I even had a hip replacement while having POTS, and not even a meal was brought over. Anyway, I did continue to go visit my elderly parents at their home, mostly on Sundays when I wasn't just down and out. I can remember my mom every year lately asking if she could take me to the local casino(I haven't been in 13 years because of the walking) for a birthday lunch for me, and every year I say I can't walk through the casino, and she says oh well. And that was that. Now my elderly parents have had health issues hit pretty hard this past year, and I do what I can in the sense that when I have good days at home and cook, I might cook extra and bring it over. My sister does the most for them, like doctor's appts., etc., but not true physical day to day care. I have an RN degree, mind you, but haven't worked in decades because of health issues. Now with POTS seeming to affect my memory and cognitive abilities, I don't even want to fix up my mom's complex medicine case for fear I am accidentally putting two of something or whatever. Anyway, I have lost my empathy for those that showed me none. That is totally out of my character, but I think I've hit my limit in life! It makes me feel sooooo guilty, because I was the one in the family in my younger adult years who made sure to invite others over for holidays, make an effort to attend their kids events, etc. And now they are stressed with elderly family stuff, and I have told them I cannot do anything, as I literally fall apart with any stress. I have for years now. My sibling is becoming passive-aggressive with me, I guess for not helping very much. AS I said, they don't understand POTS and don't care to know about it. My family has always acted like sick people were hypochondriacs, so I assume that's what I've had for so many years. With POTS, life has changed. I have adjusted to my extreme limitations, mostly. I am still pursuing answers with different specialists, so I am not resigned to having it permanently. But, I guess in my mind, I rationalize that if I've had to live with this pretty serious, life-altering health issue with no help(my husband is great!) from my siblings, then them having to cancel their golf game to handle moving my mom from the hospital to home care just doesn't phase me. I just don't care that their social life has been impacted. After POTS, all of that seems so trivial and I just don't care when they complain. Sorry for the whine. It gets to me about once a year. But I hate that I just don't care anymore for people that have been uncaring in the past. However, I have noticed I have extra empathy for the plight of complete strangers! So I guess it just shifted!
  11. Katie, did you go see Schofield? I have an appt. with her next Tuesday.
  12. Issie, yes APS is what I was thinking of. p8d, thanks! I will watch it.
  13. Issie: Hey! What enzymes are you taking? B: I would guess I have somewhat low blood volume also, as I what I take in goes straight through me. My aldosterone over the years stays lowish, from 1-5. I've been hearing others have been found to have something autoimmune that tends to cause thicker blood, and offhand cannot remember what it is called. So kind of wondering if that might be an issue for me. I'll have to find the name before I head to the doctor in the future.
  14. I was re-reading this thread from three years ago, and since then, I have come to a different conclusion as to why I had felt clear-headed. I thought and thought as to what might be the connection, and I remembered the ONLY other time I went through that feeling was about 6 years earlier when I was in the hospital for three days doing a 72-hour fasting test to find out why I had chronic low blood sugar. On the first day, they gave me an injection of a blood thinner, because I was going to be lying in bed for those three days. When I went home, after eating, for about a week I told my husband my head is so clear! Now, I had to have that 3-day fast two more times, but those did not give me a clear head. But, those other two times they did NOT give me a blood thinner. So what I am saying is, the only two times I've had the clear mind feeling, the common denominator was the blood thinners. My goal this year is to go to a hematologist and present that to him.
  15. Before POTS, I would get that same weird reaction when drinking any sport's drink. It had absolutely nothing to do with the sugar content, because back then I used to drink a Coke or two a day, and had no reaction from it. I finally quit drinking them, and still do not drink them since having POTS. I don't know what the issue was with them and me. But it was interesting to see someone else with that issue!
  16. 🤗Hi Bombshell, I don't know if it is connected, but would love to find the culprit for the elevation, remove it, and see what gets better! I surprisingly do not have diarrhea, so very odd there. I guess that's why they have not offered Octreotide.
  17. I just want to update this thread again. Here it is five years later and my VIP levels have gone up to an astounding level of 1600 (<75)!!! I just had a very specialized scan to look for a Benedictine tumor (Gallium 65), and it was negative. So I have no clue why I have elevated levels.
  18. Thanks p8d! That sounds wonderful that your doctors advocated for you! I will keep my eyes and ears open to people mentioning if they have doctors that do the same, AND are closer to me(I live in the deep South). All the good places are a long way away.
  19. Wow, rereading this thread, and we still don't have but minimal new information 5 years later. And, still no new treatments. Does anyone know a good POTS doctor that focuses on the autoimmune component and actually does something about it???
  20. Firewatcher, so agree with your assessment of the medical system. When POTS hit, I was 46 years old. At that time, the doctors I went to seemed to want to get to the bottom of my health problem. As the years went by, especially now into my mid 50s, they seem to not want to delve deeply. As I mentioned, I quit going to any POTS doctors. This year I just started with a functional medicine MD, and hoping with time to make strides in the root of my issues. It may be a dead end, but I am trying that route. Looneymom, how is Tyler now? I haven't caught up with your story in years!
  21. Hey Firewatcher! I can attest that perimenopause makes everything worse. My POTS, which began 11 years ago, began while in the throes of perimenopause. In the middle of that 11 years, I finally reached menopause. I didn't notice any change in my hyper-symptoms at that time, but I can say a few years later, my lightheadedness is less. BUT, I've been couch-ridden for so long now, I am just soooooo unconditioned that I can't exercise for more than 3-5 minutes without being real short of breath. I cannot do the recumbent bike because of a hip replacement in 2016, and it causes the angle of hip movement uncomfortable. Honestly, when I joined here and read up as much as I could, I became hopeful that the POTS medical commnunity would come along with answers and help. I have not gone to a doctor for POTS in 2 years now. No one has helped in the past. I saw multiple cardiologists, multiple neurologist, etc. Some were "specialists" in dysautonomia, but they were not able to get me functioning. I am so let down with the medical community.
  22. I'm not familiar with this, but would love for you to continue posting on any findings your doctor has, as in treatments and if they work. I love it when a doctor thinks outside the box!
  23. Wow! Glad you found THE doctor that put it all together! I sure do remember you. Can I ask why he thought of Adrenal Hyperplasia? I honestly thought, reading your story, when he said something was up with your adrenals, that the next sentence was going to say he thought it could be a pheochromocytoma! I have a slightly enlarged adrenal per CT scan, and a nodule on the other, and every couple of years a doctor tests me for a pheo and Cushing's disease. So, I am curious about the work-up he did for Adrenal Hyperplasia!
  24. Here I am 5 years later, and still addicted to black tea. Once again, feeling low for the first half of the day, and thinking about how I drink tea every morning. I drink about 40 ounces, in two 20 oz. servings a couple of hours apart. Then, water the rest of the day. Once again, I read an article about the nitric oxide properties of tea, and how it causes vasodilation. I think I read a long time ago that it lowers cortisol, too. SO, maybe I'm creating my awful days by just drinking my teas! I am going to switch to coffee beginning tomorrow, and I'll see if I notice any improvement in a month. I NEED to feel better. I have declined so much this year in my daily energy, that I feel like I can't even do my usual small amount of things that I normally do while pretty much housebound. I mostly sit in my chair, and I need to be able to cook and do things around the house. Not so much because they need to be done anyway, but because I NEED to feel like I can do some things in my limited life!
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