lieze Posted June 11, 2011 Report Share Posted June 11, 2011 Well first of all I'm glad I'm still here. : )I had a bad episode with my heart this morning after getting up to pull some clean clothes out of the dryer for my 4 yr old who had wet himself.I could feel with tugging on those clothes to sort through pressure in my sternum.It was after I had him dressed and we crawled back in bed that the symptoms started.The things that really stand out to me were numb hands a bearing down sensation that I was not in control of, and lightheadedness and shortness of breath.I got up and wow could hardly breathe was staggering, could not expand my chest at all to take a breath.Went over my teeth quick with a toothbrush and made it to my husband.Who totally did not react at all-said you're okay-I said no I'm not-I can't breathe. I took my vitals and they were 130/70 and 169.I dialed 911 and he didn't try to help me-I had trouble dialing.The 911 operator told me to lay down and bend my knees up.I did that and not long after I felt my chest pressure ease up a bit.Took my vitals again and pulse was 107-not sure about the bp-?Ambulance came and I walked out with my legs shaking.In the ambulance I was having some PAC's.Heart rate wasn't bad.Chemstick 83 which was low for just having a boiled egg and large glass of milk.At the hospital I was okay-potassium was low at 3They gave 4 Ktabs and sure enough as soon as they hit my system I had a little episode.Heartrate went to 140 felt a little swimmy and anxiety.I do not understand this shock I go into with food and meds. I questioned the nurse who double checked with the pharmacist and i trusted them that it was corn and sulfite free: but still the reaction.I almost just took one to see how I did with it but thought wow I need these.So I took them.They weren't concerned with anything they saw with lab work.Hemoglobin 11.7 so I am a little anemic not bad.Interesting thing when I got home my weight was 88.2.Which I've been struggling with and has me so anxiety stricken right now....At my appt Tuesday it was 86 but the days following the scale here was saying 84-85.I know it's a few pounds.Am I walking around dehydrated?Did the IV make that much difference?88 and gaining I can feel good about-when I see 84 I totally flip out.What is going on any ideas?I'm supposed to do a follow up with my physician on Monday but I have an appt that day with a nutrition consultant nurse so I'm thinking to take that and see my doctor in a week to follow up on this low potassium.I do want to get a handle on this potassium-I feel so much better after taking those K tabs!!!!That could have been dangerous-for my potassium to be low and me not to pursue some type of tx.I eat a banana every day-I'm thinking adrenals again???One sign of adrenal insufficiency is low potassium.I'm getting a lot but mine is still low?None of this makes sense to me.Also my weight.I get 900 calories just in the milk I'm drinking everyday.Why am I not gaining?I eat a banana daily and egg daily peaches rice potato chips hamburger pork apples.Small portions always of meat and not all those meats everyday but what gives???My meat yesterday was a lamb chop and an egg.I hope someone figures this out.I have felt sick and weak for a long time.Weaker almost at 103 than I do now-I just had strength yet to where I could get up and go places but I had many crashes and times I was on the verge of collapse.Omgolly and the oxygen they had me on was so relaxing.That did wonders for my anxiety.I recovered much quicker with O2 than I do without-I thought wow I want some of this at home.Any thoughts?Thank God it wasn't a heart attack. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 11, 2011 Report Share Posted June 11, 2011 I'm so glad you are okay and DID call 911 to get it sorted out. Low or high potassium is dangerous for the heart!If I remember correctly, low adrenals(Addison's) is associated with HIGH potassium and low sodium. Cushing's(high cortisol) is associated with low potassium. But, you definitely don't fit any symptoms of Cushing's.After eating so many potassium foods daily, could they explain why your K+ dropped so much? I wouldn't wait a week to go see your doctor, just go a day or two after your nutritionist.Let us know what you find out. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted June 11, 2011 Report Share Posted June 11, 2011 I also have adrenal insufficiency(Addison's) and Hyperadrenergic Pots and my potassium has always been low. Even before ever taking replacement cortisol(before I knew I had addison's)my potassium was low in the ER following passing out after going up one flight of stairs on 2005. (I also have crushing chest pain, high heart rate and weakness when low on potassium)Even tho I supplement with 30meq slow release potassium, I still test in the low to low normal range for potassium. Last cardiologist told me he suspects I might have something called periodic potassium paralysis, where my potassium dips low and then goes back up.I eat bananas and drink gatorade all day.It is so hard, it is as if all our regulators are broke....Hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 Good idea Sue.I got more nervous about it just now I took a bath.I do not understand this level of weakness fatigue I have it makes no sense.Today so far I have had at 6 am a glass of milk and few bites of banana but then I thought you know what I'm gonna go for the egg.So I boiled the egg and ate that.Then in the hospital I had a carton of milk and few more bites of banana.I felt like my sugar was dropping.Came home and had two organic wheat/oatmeal cookies, and a boiled organic apple.I felt so weak getting up to get a bath I went for another glass of milk with nesquik each glass of milk is 180 calories with the Nesquik in it.My level of fatigue is just unbelievable,If I didn't know better I would swear I haven't had a bite to eat yet,They didn't have an answer for the low potassium just to follow up with my doctor.I'm glad I went too-thank God it was not a heart attack it was pretty intense.I'm glad to hear Sue that it doesn't sound like adrenals, Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 11, 2011 Report Share Posted June 11, 2011 Lieze, I'm so so sorry you experienced this, your husband, is he helping you? How are you taking care of all of those kids? I do not have any helpful advice but I wanted to let you know I'm here and if I think of any good ideas I will let you know. It is so hard because it is very difficult for you to find foods you can tolerate. In what part of the country do you live? I think you need Dr. Abdallah in your life The bath was a good idea, they always make me feel a bit better, hugs,C Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 11, 2011 Report Share Posted June 11, 2011 Leize, I didn't mean that YOU don't have low adrenals. It's just that USUALLY low cortisol=high potassium, and high cortisol=low potassium. I hope your doctors have thoroughly checked out your adrenals already. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 No she hasn't-I expressed concern about them right away and this is why....My husband and I have a very bad marriage and we were seeing a clinical psychologist who told me to divorce him!He said if you don't and you live in a state of constant stress you will end up with adrenal failure.So when I started having these episodes I asked my doctor and she said it couldn't be that because my potassium is always normal.I'm going to follow up and ask that tests be done to rule this out-especially now.I have many of the symptoms of addisons.Weight loss, fatigue, weakness, muscle pain, and hypoglycemia. Depression and irritability also.So I'm hoping to get some labs this week and either have that ruled out? What if it is just stress from living with him.No he did not help.I got back from the hospital and he would not get the kids cereal. Sat in his chair. Bowls needed washed cereal and milk poured. I thought this is ridiculous I just got out and I felt pressured to wait on 4 children. He ordered oldest to do it. I just sat there in disbelief.Both of our sinks are full of dishes...Laundry sky high.He will not do anything unless I ask and then he acts like it's a chore.It's obvious he wants out of the marriage and wants me to make the move...He bought a recliner and has it set up to where I cannot even get through the room-when it reclines it blocks off the path. I think I am done with the marriage.I'm not sure what to say or how to go about it but if it is just stress and pressure making ms this ill-nothing is worth it. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 11, 2011 Report Share Posted June 11, 2011 Definitely ask your doctor about doing the stimulation test. You need to know, as you are right that you do have symptoms of low adrenals.I can't even imagine having to cope with a stressful marriage on top of the illness. You are in my thoughts. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 Will blood work show anything?Cortisol? Aldosterone?Does hyperadrenergic POTS mask Addisons?My cortisol was normal when they tested it at Cleveland Clinic but that was 2 years ago. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 I'm in Ohio. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 My norepinphrine was high at 800 so I had the impression that meant my adrenal glands were working over time?I don't know how all this fits together. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted June 11, 2011 Report Share Posted June 11, 2011 leize, you are one strong woman! I have no idea how you are dealing with your health problems, plus a marriage with an unsupportive husband, while being a mother to young children. No wonder you have debilitating fatigue! I hope you are still in counseling because it sounds as if you are getting no support from your husband at all. I hope you are receiving some physical and emotional support from other family members; otherwise, you are going to crash! No wonder you are losing weight! I am thrilled you are so proactive with your physical health. Maybe you need to get proactive with your emotional health and make some changes that will lessen some stress in your life. My thoughts and prayers will be with you durning this difficult period. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 And what about my adrenaline surges.I see the treatment is Florinef and hydrocortisone... My bp's go to 130/70 when I have episodes. I worry that anything to raise my bp will put me in a hypertensive range during episodes?I know I just have a million questions. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 I should have mentioned the kids and I have come to my mom and dads.I'm not sure how long our stay will be this time.But so that you know I am not alone and am getting help, I am safe. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 11, 2011 Author Report Share Posted June 11, 2011 My plan is to get the blood work this week if I can if I feel really bad prior to that I'll just go back to the hospital. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 11, 2011 Report Share Posted June 11, 2011 From all my reading over the years, as to why I have my symptoms and growths on my adrenals, this is what I've found:You have two 'divisions' of your adrenal glands: the outer part that secretes cortisol, and the inner that secretes adrenaline. You can have either one over-working or under-working. And one can be working great, while the other is over- or under- working.The many tests to see how the whole adrenal functions would be great, but at the least, a baseline 8 a.m. cortisol and renin/aldosterone would be better than nothing. IF you can get a doctor to do a fasting, morning stimulation test, that is the best to see how well your cortisol system is working.As far as the norepinephrine, getting a plasma fractionated metanephrine is the "gold" standard for a pheo(which now that I think about it, a pheo may lower potassium...). If you can't get that, then a 24-hour urine for metanephrines and normetanephrines, along with a VMA, would be useful. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 12, 2011 Author Report Share Posted June 12, 2011 My VMA was negative or normal about a year ago and my surges were much worse than this-the weakness has increased though-but after I came to my moms I was able to sit up in a chair for quite a while no palps or anything so that was a good sign,I do not like this hot feeling under my skin...And today I had that horrible ammonia sweat during the morning event again around that bath time and I am vaguely getting a whiff of it now.Where I ended up with my last endo was he wanted me to do the scan for the pheo-he had ordered the adrenal stimulating test but with the horrible surges I had at the time I was afraid it would kill me and I didn't go.He just made me nervous.He had also ordered a thyroid stimulating test but my thyroid levels were all normal-I cancelled that test too I was too scared. Quote Link to comment Share on other sites More sharing options...
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