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calypso

Symptoms totally changing

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My body has changed so much over the last year that I feel like I'm living in someone else's skin.

Since developing POTS after having my daughter in November a year ago here are the changes:

I used to have low normal BP that was only rarely symptomatic, and I was ALWAYS freezing cold. Now I am hot all the time and my BP is at the top range of normal or in the borderline range.

I have chronic nausea that started in late August that I can't figure out. I haven't pursued much in terms of testing because it's such a vague symptom, and I am so tired of doctors.

I have lost 13 pounds beyond my normal weight, but what scares me more than this is that my body composition has totally changed -- it's like I can't form muscle, and all the muscle I had has turned to fat -- not from inactivity, but from my body being in a chronic high metabolic state.

I eat and eat and eat, and I can't gain a pound. I used to always feel hypoglycemic, but now I feel hyperglycemic (feel like I just ate a giant piece of cake). I feel like my coordination is off when I use my hands -- like I go to pick things up that would normally not be a problem (i.e., a dinner plate), and I either am too weak to do it or just feel like it takes a huge effort. (But this started just days after the POTS started, so it doesn't seem to be related to the muscle loss.)

When I first developed POTS I was dizzy and could barely stand up. Now I can walk around fine but just feel chronically fatigued and nauseated.

The only things that have remained constant are that my heart rate goes up 50 bpm when I stand (unless I take a beta blocker, in which case it's more like 20 or 30 bpm) -- and since day 1 I have been short of breath, and this has not changed or gotten better.

I am trying to figure out my next move. I feel like I should maybe see an endocrinologist because all of my symptoms seem to be related to my metabolism being super-high (like high body temp, higher BP, nausea, etc.). An endocrinologist is the only doctor I have not yet seen.

I have never seen a pulmonologist, even though shortness of breath is my primary complaint. I did have a basic pulmonary function test done and it came back mildly abnormal.

Another option is to do nothing, even though my course of illness has been progressive and I believe it may be starting to affect other organs (I recently began having gallbladder/liver pain and had a couple blood tests in these areas come back abnormal, but again, these would be problems caused by the high metabolism).

And yet another option is to maybe try a naturopathic doctor.

What would you guys do? It's like I have hyperthyroidism but my thyroid is fine. I have symptoms in every area of my body. I do actually feel crazy :D , because even people with cancer and heart disease don't have this many symptoms.

Is it possible for dysautonomia symptoms to totally change or progress over just a year?

Amy

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calypso

I know you have been having so many disturbing problems. It is so hard when you have so many symptoms to know where to turn. I agree with you that if you haven't seen an endocrinologist that that makes sense. I hope you can find a good one. The other thought I have is to see a very good generalist who could help point you in the direction of the best specialists. I know how hard it is to find really good doctors. The other thought I have is that I have always had the best experience with D.O.'s as opposed to M.D.'s. This may just be luck/chance on my part. But, D.O.'s in my experience tend to be a bit more open-minded and systems-oriented. The only other thought I have on this is just to be cautious with alternative medicine. I think it can definitely be beneficial, but it can also be useless or even dangerous if practiced by a careless or poorly trained practitioner.

It does seem like you could have more than POTS going on. It's so hard in the post partum phase to get proper diagnosis too b/c doctors like to chalk everything up to that, when they can't come up with anything else.

Good luck and let us know how it goes.

Katherine

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Guest tearose

Oh Amy dear, you are not crazy you are just very symptomatic! Wouldn't it be just lovely if it were being crazy, because there is probably a simple pill for that!!! Keep searching for balance and for patience with yourself as you continue to figure things out. I don't think I've ever admitted this, I was a real miserable person in my early pots days. I just didn't want to compromise, to change my expectations of myself or believe that this was all really happening! I just thought if I believed hard enough and pushed hard enough, I would just have to get better! But it never lasted. I understand that "living in someone else's skin feeling". One day, after being so weak, grumpy and moody I apologized to my husband and said "I'm sorry, I'm just not myself" he said, Yeah, I noticed, so who are you and what did you do with my wife?" Laughter helps!

You will get through this! Whatever medical team you build to help you deal with your symptoms, make sure they take a "whole" look at you. Have them call and compare notes with each other. Your symptoms cross from endocrinology to cardiology to whatever...it may take another year to get a handle on your exact kind of dysautonomia and the treatment plan may change many times along the way. Wishing you well, tearose

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Amy,

I agree with Katherine that you should see an endo. My uncle, who is a cardio, told me to do so as soon as I got POTS, because there are some endocrine conditions which mimic POTS. And since you are having problems with your metabolism, it's all the more reason to see an endo. Don't feel guilty about going to too many doctors and don't worry what your doctors or family members think either. They are not walking in your shoes. You obviously have something serious going on and you deserve answers. These are rare problems which most doctors may not know about, so unfortunately we may have to go to several doctors before we get the help that we need.

You mentioned that you had some tests (breathing, gallbladder) which came back mildly abnormal. Are there any further tests that you can take or specialists you can see to determine whether you have a problem in these areas? I would not hesitate getting as many tests as you can. If they come back negative, it will only help narrow things down and rule out your fears and concerns.

I am not sure whether you have a good local POTS doctor, but another thought is to go to Dr. Grubb or a clinic such as Mayo or Cleveland. It sounds like you have something more going on than most POTS patients, and a clinic with expertise in multiple areas might be able to figure things out for you.

As for a naturopath, if you determine to see one, you can always do so at the same time that you are seeing the other doctors.

Feel better soon,

Rita

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Amy,

I think it's a very god idea to see an endocrinologist. I (like you) hate to see may doctors but found myself a very good cardio, neuro and endo. I visited the endo a few times and when everything he tested turned out to be okay I was glad I saw him and that all the things on his specialism seem to be okay. We decided that I don't see him anymore untill I want too or think I need too. Maybe this will help you to find out what's up. Hope things work out well for you,

Corina

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amy,

i know it is sooo hard to find a good doctor...but i will say that it is worth fighting for and continuing the search. it is exhausting and sometime seems easier to just let the problems go instead of see yet another dismissive doctor...

from your last few posts, it sounds like you are really experiencing more than just POTS, like other folks have said. and your weight loss and such are definitely a concern. i sense from you that you need answers too...that it you don't feel right just letting this go either. is that correct?

i agree with katherine about d.o.s in general. i have had a better experience with them, especially for primary care...that is what i have now.

also, your cluster of symptoms...like so many of us with POTS...could be indicitive of so many different things it is impossible to say what is the actual cause. still, i am stuck on your last post about GI stuff and still think you need to rule out things like celiac...for which the weight loss, etc. are classic symptoms.

we are pretty much the same age and i go through phases of not wanting to see docs too b/c it can be so demoralizing. i have seen two GI docs so far and have been completely dismissed by them. i am currently trying to get up the courage to go to another one. b/c....in the end, when i have pursued things...my instinct is usually right. you know your body the best, not us...so you have to go with your gut on whether or not to pursue your problems further. but, i know that when i read your posts i feel very concerned about you and think that there is something else going on that the doctors are missing and dismissing just b/c you are young. (not saying this to be alarming....celiac is easy to diagnose and treatable...)

just my two cents...please do keep checking in and letting us know. here's hoping you find a 'good egg' for a doctor very soon...

emily

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Hi, Amy ... I just wanted to say ditto ditto ditto -- I support your efforts to get to the bottom of what's going on ... especially with the endocrinologist. (As for me, I'm not so into the natural route when it comes to diagnosis ... and even treatment, really. I'd much rather take an FDA approved med than one or more herbal concoctions that can have powerful effects but that aren't regulated or controlled or studied in any way. Maybe that's small minded of me, but that's where I am...)

I also agree with what Emily said, esp. in terms of your GI stuff and the possibility of getting tested for celiac. That makes a lot of sense...

Wishing you better days ahead and some peace of mind along the way,

merrill

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Amy, I think your should print the post where you have detailed your changes and take it with you to see your doctor and/or new endo. If you haven't had some of the endo. tests done it would seem to be very helpful to eliminate other medical conditions where symptoms are similar to ANS.

With regard to the nausea I can remember that I had it 24 x 7 for months on end at the onset. Nothing I did helped and the doctors couldn't give me anything. I read somewhere that with POTS, nausea is often a sign that you are exerting beyond your capabilities. WIth a baby I am sure that you must be pushing beyond the limits of what would be ideal to let your body try to recover. I don't have any suggestions how to ease up on your level of activity or relax because I know caring for a baby is full time.

It sounds like you are one to want to get answers and to do so may mean goiing to a new doctor. Hopefully you can find a good endo. in your area. Good luck and I really hope you can feel better in the near future.

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Guest GayleP

Definitely see an endo. Your symtoms really do sound like hyperthyroid although it sounds like you've been tested for that.

Even so, thyroid problems can be hard to diagnose. I had some similar symptoms a few years ago and it turned out I had subclinical hyperthyroid that was pretty hard to diagnose.

I found a good endo who diagnosed me and put me on meds after a year of being told it was "nothing" by other docs.

Good luck

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I agree with everyone else. It sounds like you have more than POTS. I ahve soem sort of metabolic disorder. You would not believe how many there are. I definitely reccommend that you see an endocrinologist.

Dawn

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I would go. I have Addison's disease and you have many of the symptoms I had, but that doesn't mean you have Addison's. I would go to ease your mind.

Make sure he tests your potassium and cortisol levels!

Most cases of Addison?s disease are autoimmune in nature ? that is, the disorder is due to an attack on the adrenal cortex by the immune system. Symptoms, which usually come on gradually, include fatigue, muscle weakness, loss of appetite, weight loss and, in about half of all cases, nausea, vomiting and diarrhea. Blood pressure is typically low and can drop even lower when you stand up, causing dizziness and fainting. Many people with Addison?s disease also experience darkening of the skin, which is particularly noticeable advertisement

in skin folds, on the elbows, knees, knuckles and toes.

http://www.drweil.com/u/QA/QA326582/

Thanks to Merrill for the link.

Edited by Timbo

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Gayle, how were you diagnosed with your thyroid? are you hyper or hypo? i have had repeated TSH tests that are normal but i have so many symptoms of hyper, what is subclinical mean? thanks

radha

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OK, OK ... I will ask for this last referral and then I am done with doctors!

I know my symptoms seem very in line with metabolic disease, but I definitely don't have Addison's because my BP is not low and my skin is pale ... and I don't think I have Cushing's because I have weight loss, not gain ... and it's not my thyroid. So I just figured that if it's not those, it must not be anything treatable. But maybe I am wrong.

I know I don't have "just POTS." I definitely have something else going on. But it may be a result of the POTS -- i.e., my overactive nervous system and metabolism my have made me lose so much weight that now my digestive system is screwed up, or maybe I have a potassium deficiency or something.

How often is too often to go to the doctor? I have had like 8-10 appointments in the last year, mostly with different specialists.

Amy

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amy,

it's not too often if you aren't getting good care or good answers to you questions! it's only too often if you are going without good reason! this is definitely not the case for you! :D

emily

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