futurehope

At this point, unless I have a received deficiency, which I do not, I will not take the supplemental hydrocortisone. There are too many potential difficulties that can arise from it. But I always want to know how I can help myself.

Very interesting. I may have breathing as a mechanism also because I'm not a fainter, just orthostatic intolerance, feel bad and heart rate increase. If I get a chance, I may monitor my breathing. I wonder if breathing into your hands (which gets more CO2 in), helps with the orthostatic symptoms I get? My symtoms are not exactly like yours. I'll try it.

Two thoughts: Look up "drop attack" A friend of mine was getting these. She hasn't had any since "cleaning up" her diet. She now avoids artificial sweeteners. She avoids "diet beverages" that contain these sweeteners. She used to drink diet sodas all day, now doesn't. Also, foods are eaten in their "natural state" and are not processed with chemicals. She was beginning to think she had multiple sclerosis or something, but hasn't had drop attacks since avoiding the aspartame and chemicals. It's worth a try for you, in my opinion. Obviously, if it keeps happening, you need to be evaluated by a neurologist.

Hi, I think the spoon story was on this forum a while back. I thought someone on this forum wrote the story?! Or maybe the author is someone on this forum?! Good illustration.

I never liked the heat and never liked to cook (standing still and doing it). I always knew I tired before others did but I managed to take naps and live a good life anyway. P.S. I never will like the heat or like to cook.

Machair, Have you had your adrenal hormones checked to see if you produce enough? I'm no doctor but I'm saying what I am because of a dog I had with adrenal insufficiency and similar symptoms.

I agree with what Erika and Julie (the two posts above me) said. For me, it has been a learning experience to refrain from discussing how I feel. Under normal circumstances, one feels better soon, and all is well. Not with me. If I always discussed how I felt, that is all I'd be talking about because my condition does not improve. That being said, my relatives and friends know I have a chronic condition because I've said something at one point and I'm no longer working. Other than that, I PREFER them not to ask me "how are you doing" because my preference is to focus on THEM or anything else but illness. I get tired of "attending" to this illness meaning I get "tired of talking about it". Now, for the ones who have recently lost a partner, my heartfelt sympathies go out to you and I in no way want you to blame yourself for the pain you are now experiencing. There are many reasons people leave, and some have been mentioned here. Honestly, if a person wants to leave, you have to let them go and let it go because there is no choice. But the positive out of all of it (and I have been through a divorce) is that there is another side to it. You will become a stronger person emotionally and there are new and better experiences ahead of you. It is difficult to imagine that right now. You just have to believe me on this one.

Hi, I'm trying to remember all your questions. Yes, my Vitamin D is fine. My serum ferritin is in the normal range in the 20's or 30's (can't remember) and I was going to discuss this with my sleep doctor as he usually wants the number in the 60's - 70's for treating restless leg syndrome (which I have). I had an appointment to discuss this with him, but after waiting 3 hours in the waiting room and watching everyone get into the doctor before me, the doctor came out and told me I wasn't on HIS schedule .....and this was at Johns Hopkins and I had totally prepared for this visit....I was upset and left and am not sure I'm ever going back. I forgot what else you asked. Also, I did have an appointment with a second endocrinologist. I was to discuss the issue you brought up, bring all my results and ask for natural hormone (what brand, BTW?) but she had a death in the family and I was never able to see her either. So, I am a bit better since raising my synthroid, but I still react very poorly to stress of any kind. That's obvious to me. So I suspect that despite all my numbers, my Free T 3 may not be optimal. But, as you can see, I've had mucho problems getting into to see my practitioners, and I'm going away for the next three weeks, so it is out of the question to see them. After reading your last post, I feel lucky that I got 27 "good" years in on my synthetic hormone before slowly deteriorating. C'est la vie!

No, the doctor never mentioned a free t3 test to me. I had my salivary cortisol tested to check my adrenal functioning. I first got my TSH where it needed to be. I am constantly on the lookout for potential reasons for my symptoms and adrenal function is one area of testing. I am unusually dead in the am. My pulse pressure tends to be narrow. I tire very easily. And I'm basically orthostatically challanged.

MCaimless, You need to understand a few things about me. So, if you have a few minutes.... I don't HAVE a thyroid. It was removed for cancer. My TSH is about 2.55 right now. My Free T 4 is high normal and my Total T3 is high normal. I do not WANT my TSH any lower. In order to keep my synthroid at this dose, I have spent weeks adjusting to the fact that I am more hyper. My heartrate jumps more readily than when I was at a lower dose. My resting heartrate is rather high. So, I do not WANT more synthroid. As for my adrenal results above, 2 of the 3 are in the normal range except for the 11 PM one was .1 above the high end. I HAD taken supplemental hydrocortisone in the past, a very small dose. I noticed weight gain and really no improvement in other functions, so I had the above tests done to see if indeed there is a real deficiency? I doubt it. Personally, they can keep the hydrocortisone pills, and I'll keep my figure, thank you very much. Now, it is possible that UNDER STRESS, my adrenals are mildly deficient, as shown by my less than optimum results on an insulin tolerance test. It is possible that under stressful condition I may need some hydrocortisone hormone. But, on a routine basis, I'm suspecting that my numbers above are not indicative of needing a supplement. I was curious as to other peoples' results if they took this test? Thanks for the info, but I needed to clarify what my situation is. P.S. What you are saying about Free T4 and Total T3 are not true for me. For me, the TSH is my favorite test for indicating how much thyroid hormone I should be on. I've kept careful notes of all three thyroid tests for MANY years, and the TSH is the best indicator of thyroid function for me. Contrary to what you said, my Free T4 and Total T3 did not vary much when I was hypo, but the TSH did. So, I suggest for anyone else out there that you keep your own running records, with results and how you feel, to assist the doctor. When I mentioned my "normal" results to the doctor, and I discussed results and charts I have kept for years, he could see I had data to back up what I was saying.

Michele, If I get symptoms like yours after other episodes where exercising was okay, it usually signifies that I am sick with something else. My nervous sytem "knows" I'm sick before I do sometimes. I've gotten vertigo attacks, shakes and other weird things happen if my body is fighting something else. It might not be obvious what it is, but my body knows something is not right. Hope you feel better soon.

8 AM I tested the lowest end of normal 4 PM I tested the highest end of normal 11 M I tested 1/10th higher than the high end of normal. So maybe my really low end number in the AM shows why it's so difficult to move or feel human in the morning? I really don't know what to make of any of this? Anyone else have these tests done? What were your results?

Erik, I'm looking into my cortisol numbers now to see if I need a boost. I took the salivary cortisol test at 8 AM, 4 PM and 11 PM and am eagerly looking forward to see if my numbers are the reason for the weak, dead feeling and the low systolic reading that I have. Hopefully, I'll find out Monday. Before doing the above test, I first got my thyroid into the proper range (with my endocrinologist's help, of course). P.S. How did you get pituitary-hypothalmus damage?

Oh boy I really despise feeling that way. For me, my pulse pressure (the difference between my two blood pressure readings) is too narrow. Narrow to me is 30 point or less. That has been my normal and it makes me feel DEAD and unable to move. If you learn how to combat this, let me know. Also, maybe you are low on potassium or some electrolyte. That can make you weak.

My formula is to cut out foods with sugar and high fat. No dessert cakes, cookies or candy. After about 2 weeks of withdrawal, my body finds other substitutes for the cravings, like fruit, or berries or corn chips with melted cheese. You can do it. Also, make sure your thyroid isn't in need of a boost in hormone. The doctor can test for this.

Immediately after exercise I might feel okay, but it's not unusual for me to "crash". That means, I fall asleep or get really tired, say, about 15 - 30 minutes afterwards. I've been this way even before my POTS diagnosis. I'm glad exercising helps you feel better. That has never been true for me. I do it anyway.

Yes, I'm used to being unpredictable. About your anger, I suggest you stop it! You're wasting your energy. It doesn't help you any to get angry. It might make you worse. Just a side note, when I take a tranquilizer, I tend to have a "rebound" effect of being more anxious when it wears off. So, for me, taking them has its drawbacks. This is not true of everyone, and some people on here do fine taking them all the time or taking them intermittently when needed. I can do that if I want to but..... I just have to expect to be more anxious for a while after it wears off. One doctor had suggested I take Klonopin on one day and Restoril on the next, alternating. That really sent my nervous system into a frenzy. I won't be doing that again.

That happened to me today. I had to click a different "option" to get this forum back to the way it used to look to me.

Denise Austin Mat Workout Based on the work of Pilates I modify some things to suit my condition, but I have been using this for years.

Personally, I would be concerned about the iron deficiency anemia. Two pills of iron/day if you are anemic is not too much. Your blood levels do have to be checked every three months so you are not overdoing it. Iron is absorbed better when taken with Vitamin C. Iron can cause constipation. Being anemic can cause dizziness, fatigue and make you more susceptible to illness. I hope the doctors figure out how to address your gastroparesis issue. Get better soon!

This sister is a potential liability to your health. Look at how upset your are from this encounter. Continue this relationship with caution. You cannot be responsible for her mental health in addition to being responsible to your own family. I'm sorry her problems are becoming your problems. Don't let her in to your private sphere. Not good. Be cordial but distant. You cannot afford more problems.

I have a slightly different perspective. The word "fighter" doesn't really apply to me and that may be because I'm not a male- I don't know. The word "fight" connotes to me that I need energy, and I don't have much. I accept what is. I know I'm disabled. I know I'm unpredictable. I usually try to do whatever it is, even if I know I might feel poorly. Disabled people still have a life. Disabled is not synonymous with "dead". As long as I'm breathing, I try. I choose with care the activities I will do. The less-important ones (to me) I don't attempt. I'm managing the time I have a lot more carefully than if I were healthy, so that I have the energy to do what is important to me. I never pity myself or feel sorry for myself. To me, that is a big waste of energy and accomplishes nothing. I am more compassionate towards other chronically ill people because I understand the daily trials. BTW, to "accept was is" does not mean to me that I have lost hope. On the contrary, I am confident that as time goes on, they will know more and more about how to successfully treat me. So, each day is a blessing and I appreciate it. Thought I might relate how I view all this. I didn't write this to detract from what you said about "the fighting spirit". I'm happy that the philosophy of "fighting spirit" is giving you a positive outlook. That's what is needed.

I did fine on it, but, truthfully, I don't see how that matters to your friend. We're two different people.

I feel your frustration. My guess is that workouts don't get us in better shape because our bodies' are not working properly to begin with. We get a higher heartrate just by being vertical as a compensatory mechanism. The malfunctioning of our bodies' keeps them from benefitting by exercise. Why? I don't know. I just know we don't work right to begin with. Before I knew I had POTS, I always wondered why people would talk about the benefits of exercise, and no matter what I did, I didn't notice half as much as everyone else. Now I know why. I haven't been functioning normally for a long time. That's my conclusion. It's a pain. I know.

Tearose, Where do you get them fitted? Is it a prescription for a certain garment? I need more info, thanks. Pat57, So, you pull down your tummy tucker and your pantyhose to go to the bathroom? I can't imagine the effort, and I wonder at times if I would be able to pull them down fast enough? Your thigh area must feel like it's in a strait jacket when they are pulled down together? Yikes! I'm glad you can do it.