futurehope

Volley9, People on the MASTOCYTOSIS forum suggested I contact Dr. Lawrence Afrin to see if he would consier me a possibility for MCAD. The moderator on the forum, Lisa, was supposed to give me his email address. If you have Dr. Afrin's email, can you PM me with it please? Thank you.

Jangle, I'm sorry I scared you into thinking I would use something you suggested. I have been asking all my questions because I already have a prescription for 25 mg Spironolactone, and I have been taking it for over a year. Like I said previously, when my POTS doctor heard about me taking Spironolactone (for hair loss), he said "Why?" "That is going to make you worse?" I ignored him and took it any way. (That's what being vain will do for ya!) Anyhow, to answer your question, I don't really know one way or another if the 25 mg Spironolactone helped or hurt my POTS. But I can say that I survived over a year taking it, and that year included me going to a fitness center. So, that's why I'm asking all the questions. I would not do or take anything based on your suppositions. But, you can understand my curiosity in light of the fact that I had already been taking Spironolactone. Keep up the good internet researching. I appreciate it.

Jangle, I have taken Spironolactone in the past, a very low dose (25 mg/day), to combat hair loss (believe it or not). Is ingestion of Spironolactone supposed to decrease angiotensin II levels? You've got me more curious than ever because the taking of Spironolactone was against my neurologist's wishes. He was convinced it would make my POTS worse. In any event, until I get angiotensin II levels measured, I have no idea if I am circulating higher levels or not?

Jangle, You spoke to a doctor about ACE2? What exactly did you speak to the doctor about, and what is ACE2 and what does it have to do with POTS? I'm not on this forum much anymore, so I've missed your drift. Thanks in advance.

Well, being as I trust in the "Lord with all my heart and lean not on my own understanding", I'm assuming the Lord made sure I wasn't enrolled in this protocol, possibly because it would not have been beneficial and potentially could have hurt me. Life goes on. The original premise of being out of shape was wrong in my case anyway. Thanks for making me feel better.

I just got my "reject letter" from Dr. Levine because I'm 60 years old and the cutoff is 59 years old. I believe exercise is beneficial, but I have my doubts about what Dr. Levine has said considering that I was in great shape, exercising every day, when I got POTS. On another note, a nurse I came in contact with the other day told me her younger sister spontaneously got POTS, had it for years, then just as spontaneously, does not suffer with it anymore. Maybe it was because of her youth when she first had it? I don't know. I think I had a precursor to this years ago at a young age. So my POTS has been with me for quite a while. Sigh!

I first found out about Dr. Levine's POTS exercise program last year. I had contacted Tiffany last January. It took until recently for me to get a cardiologist, to get tested and to get checked out so that I could enroll. Finally....... but, they have just let my doctor (and me) know that I am too old to be enrolled. The cutoff is 59 yo. But maybe, they said, if my doctor approved, they would share the protocol with him. He would then share it with me and monitor me. They would have nothing to do with any follow up or any acquisition of data from my participation in the exercise protocol. I replied that I wish I had known this last January when I was 59 years old and eligible. I would have moved faster in getting doctors to check me out. What a bummer. Just thought I'd let you know. And, BTW, I told them I have been exercising most of my life, even with POTS, so this was a double bummer.

Yes, I was prescribed this for a serious dry mouth issue, but I refused to take it. I did not want to create more problems for myself by taking it. I did not trust my ability to handle it.

ramakentesh, I don't understand what you are saying, really, but that is okay. I am interested in your statement about autoantibodies being found in M. gravis and the possible abnormal activation of beta 2 receptors and angiotensin II receptors because of it. I am interested because I have autoantibodies that signify M. gravis, but thankfully, I have not displayed symptoms of this disease. So, since I do not understand what you are saying about the two different kinds of receptor (beta 2 angiotensin II), if I had autoantibodies to the above, what symptoms could result? I'm trying to figure out if my form of POTS has something to do with my being positive when tested for the M. gravis AB? Thanks in advance.

I thought there was bloodwork they could do to test for Sjogren's? Or maybe the bloodtest just shows general autoimmune disfunction, and then they need to do a biopsy? Im asking because I'm having a rough time of it with my parotid glands (salivary glands) not producing enough saliva. There could be several reasons for this, and Sjogren's is one of them.

Yes, I'm in the middle of experimenting with this now. I've been frequenting a thyroid forum to learn more. The gist is, many endocrinologist go by the numbers and ignore obvious complaints. I tend to have trouble converting my Synthroid (T4) pill to Free T3. My T4 can be on the high or middle end of normal, and the Free T3 is at the lowest end of normal. The FT3 is the form of the hormone used by your cells. This is another area where many endocrinologists lack understanding or interest. Luckily, I did find an endo who listened to me about being High Normal FT4, Low Normal FT3 and a bit high TSH. Despite appearing like I am getting enough hormone (because my FT4 is midline or high), my pituitary thinks I'm "low" and raises my TSH. IOW my body is not converting the T4 to usable form. Apparently, according to the forum I am on, you may feel hypo even though the FT4 is normal. The reason being is your FT3 needs increasing. I'm at the beginning of understanding all this and have found an endo willing to work with me. He is a rarity. ETA You can feel hypo if your FT3 is not in the mid to upper range, so I'm told.

Look up persistant sexual arousal syndrome - PSAS It is real and debilitating. There are specialty gynecologists who deal with this.

I think this experience highlights how the doctor "takes charge" or controls the few minutes allotted to you, to make sure that he does all the talking, in order to keep your from expressing yourself and asking questions which he cannot answer. Goal: Dispense with the patient in 10 minutes or less. To reach that goal, do all the talking. Pretend you know what you are taling about. Keep the patient from saying anything, then rise and say "it was nice meeting you." He just got his $220 for 10 minutes, and you got to pretend that you learned something. What a deal!

I don't have time to read this thread right now, but wanted to say.... My gastroenterologist diagnosed me with this (after I had asked him about the possibility), using a hydrogen breath test. I was asked to breath into a bag on an empty stomach, then given lactulose to drink, then tested with my exhale breathed out at regular intervals. I tested positive. If I get around to it, I take 1 Xifaxin antibiotic 3 times a day for 10 days, every three months. This antibiotic costs me over $100 with insurance. Probiotics do nothing for me. They bloat me more than usual. It doesn't matter what brand I take. If I delay taking the antibiotics, because of costs, for example, I will start getting stomach cramps and diarrhea probably due to the SIBO. ETA: As far as I'm concerned, figuring out which came first, the SIBO or the gut dysmotility which can cause SIBO, is hopeless. Suffice it to say, different areas of my body are not working efficiently.

Songcanary, Just had to mention, I have only about 1/3 the hair on my head that used to have. It is so sad. But, I will find a doctor who will try to help me. Thanks.

Oh dear. Songcanary, you made my day. I currently have an endocrinologist who goes by the book, and refuses to try anything with T3 in it, claiming that it is difficult to measure the effect of a T3 med. I was given a bit of Cytomel once a few months back, in addition to T4 (Synthroid), and it brought my Free T3 up a hair. My doc discontinued the Cytomel for the reasons mentioned above. I am convinced my body needs access to more usable thyroid hormone in the form of T3, Cytomel, or Armour. I feel awful every day. I do have an appointment with a more open-minded endocrinologist in 3 weeks, and back with the non-cooperative endocrinologist in about 6 weeks. I'm not giving up. The Synthroid is NOT doing what it needs to do, and I am suffering because of it. I really needed to hear your opinion, because I think I am onto something (about the thyroid hormone), and I needed to hear from others with POTS. God bless you for your post! BTW, since my (current) doctor insists on using T4 supplementation only, my Free T3 is at the LOWEST end of normal, my Free T4 is at the HIGHEST end of normal, and my TSH (pituitary) shows me as HYPO. She has raised my intake of Synthroid because of the above results, and I already know what will happen. I will creep up to midrange on the Free T3, and show HYPER Free T4 and TSH results, and I will feel like a hyper wreck. This has got to stop.

I am currently prescribed thyroid hormone: my thyroid was removed for cancer 40 years ago. Things have changed drastically in my body's response to the Synthroid (hormone). I am no longer efficiently converting the pill to a usable form of the hormone. I deduced this from looking at my thyroid test results. I have learned on a Thyroid Forum, that too much cortisol (the adrenal hormone) can affect conversion of Synthroid. Is anyone else on this forum taking thyroid hormone? How are you responding to your thyroid supplementation? I'm beginning to believe that POTS is affecting my adrenal output, which in turn is affecting my body's response to thyroid hormone. I'm suspecting that I have too much circulating cortisol, in order to keep me vertical, and this is affecting my thyroid functioning.

There's so much I could say on this topic, but, I'll begin here. I must take a thyroid pill because I do not have a thyroid:it was removed for cancer 40 years ago. I believe that in my case, the doctor needs to test me for Free T3 ,Free T4 and TSH to get the entire picture. It is no longer easy for me to remain at the optimal thyroid hormone levels by taking 1 pill (Synthroid), though my doctor has not reached that conclusion yet. Absolutely, the hormone affects everything including my POTS symptoms. If my FT3 is too low, even if the FT4 and TSH are fine, I am more orthostatically intolerant, more fatigued. etc. Since I am in the middle of my own journey to figure out what my optimal levels are on the FT3 FT4 and TSH tests, this is all I can say at this point.

Meg, Honestly, there is no way to tell how you will do post-POTS. My suspicion (my educated guess), is that you did fine in the past, so you will do fine again. All the other comments about "general" anesthesia vs. twilight, you really cannot say, for each person has different reactions to different things, POTS or not.

Hi, Abetterjulie, Dr. Khurana is my doctor as well. I read the article he wrote, posted by Vemee, and I noticed that I also went to Shomali, an endocrinologist who has treated several POTS patients. I also tested "below normal" in my adrenal response during the insulin tolerance test. I always thought I was a mystery, wrapped up in an enigma, and that doctors really didn't understand all the ramifications of my condition. I just had an elective gallbladder removal, and my reaction to coming out of anesthetic was a nightmare. I'm sorry Dr. K threw this possible diagnosis your way, but he always seems interested and willing to help, if possible. They just do not know enough. We are like walking experiments.

I would tell the truth. I would also emphasize that being vertical makes it more difficult to think. Thinking is an important task, and necessary for a jurist to perform. You could also bring info about POTS, like you said. This is going to be a situation where they believe you or they don't (and they think you're lying). I cannot imagine why they would not believe your doctor?! I do not really believe they would choose you after you tell them the truth.

I use chocolate, in moderate doses, as my caffeine source. FWIW, I'm noticing that the garbagy chocolate candies, icings, and cake mixes, dessert toppings, with the hydrogenated oils, (and who knows what else), do not agree with me, but if I eat a chocolate Clif "Builder's Bar" (organic, natural, no hydrogenated stuff), I'm fine. So, the source of the chocolate makes a difference. Once in a while, I'll down a coke, but not as a regular habit. I could never handle the caffeine in a cup of coffee. I tend to avoid teas. For me, the source of the caffeine makes all the difference. And who would have thought that the chocolate in a Clif Builder's Bar is okay for me, yet chocolate in candy, or dessert topping, or pudding mix, is not?

Godsgal, I hope you have been evaluated already. Your symptoms show something wrong, and the people on this forum are not in a position to do the required testing to figure it out. This happened to a niece of mine, a young woman, and she was having a kidney problem that needed treatment. But your symptom could be from anything, and it is not normal to gain weight that rapidly. In any event, get help and let us know how you are doing.

I would say that I have thyroid troubles, even though my thyroid was totally removed for cancer almost 40 years ago. How so? I have to take a pill in order to get my thyroid hormone, and I do not think that my body is doing a good job converting my pill to usable form. Also, my thyroid test results are so wacky (remember, I'm on a replacement pill), that my endocrinologist is scratching her head. I don't know which came first with me, the autonomic nervous system problems, or the utilization of thyroid hormone problems. I have decided that my body and its functioning are one great mystery not to be solved in my lifetime. I sometimes stop thinking and trying to figure it out, because I get no where and doctors do not know enough to be of assistance. My final goal is to live my life to the best of my ability, trusting that eventually more will be known about my disorders. For those of you "in the thyroid know", I'm now taking two forms of thyroid hormone, long-acting (Synthroid) and short-acting (Cytomel). I can tell you for a fact that having your thyroid hormone level either high or low affects the POTS. No doubt about it.

I'm happy for you. He's my doctor as well.