Finally, I'm seeing an endocrinologist

[calypso]

For all of those who insisted that I need to see an endocrinologist to figure out my weight loss and muscle-turning-to-fat problem, I have an appointment for next week.

I had a strange day. I spent an hour this morning in a psychiatrist's office, trying to convince HER that I must be crazy. And she was telling me, "No, you're not." It was pretty funny. She thinks the high blood pressure during my pregnancy damaged my pituitary, or that it was damaged by compression during delivery when pushing out the baby. This was a new theory on me.

She dialed up the head of endocrinology at the university where I live and rattled off my strange symptoms. He was so interested/alarmed that he squeezed me in next week, despite not having any appointments until March.

Then she called the head chairman of the immunology dept. and asked that he see me, too, to make absolutely sure I don't have lupus or some autoimmune problem.

I had a half dozen vials of blood drawn for various endo & autoimmune markers, and I get those results back by Friday. Then I will know more.

I spent this weekend attempting to hike around D.C. with a baby in a stroller, and the temps in the teens with high-speed winds. I made it through 10 minutes of a Smithsonian museum then had to lie flat on a bench for a while. I alternated between lying down and walking a few minutes most of the day Monday. Then I got on a plane and flew two legs back to Wisconsin.

I think am definitely insane!

Amy

[corina]

Amy,

well done, I'm glad you're seen by an endocirnologist (and an immunologist as well). I think you made the right decision. Hope things work out well for you,

Corina

btw: I don't think your insane, just pushing yourself (too much ). Take care.

[Gena]

Calypso,

I think it's wonderful that this psychiatrist was able see that you are not insane and that she took your symptoms so seriously. I am so glad you're going to the endo so soon as well. What a blessing. I pray that you'll find some answers.

As far as walking around sub-frigid weather with a baby in tow, yes, you might be a little crazy!

Don't over do it. You know where that gets us!

Keep us posted on what you find out. Happy Holidays to you and your family.

[DawnA]

That is great that you are getting in to see the endo so soon. I am glad that your psychiatrist was concerned about your medical symptoms. Now that is a change! Keep us posted.

Happy Holidays,

Dawn

[Ernie]

Congradulation on finding a competent psychiatrist.

I hope your visit goes well with the endocrinologist.

Ernie

[geneva]

Amy, WONDEFUL news about the appointment. Isn't it nice to be thought of as so "unique" that a doctor WANTS to see YOU?! Also, sounds like a very thorough pysch. visit you had and she is one of the better ones so I am glad you found her.

Now, STOP trying to convince people in the medical profession that you are crazy (LOL). Ok, well, don't tell them about lying on park benches in sub-freezing weather!!!

I hope you will let us know how your lab results are and your appointment. It really is good news to have someone take you so seriously (other than those here, of course).

[yogini]

Great news! Keep us posted...

[Melach]

Amy,

It's very good that you got the endicronology appointment, maybe they'll really be able to help you. I've also had a lot of issues with weight loss, so let us know if they find anything interesting. Regardless, it's always important to check everything out. By the way, this shrink sounds like she's reallly doing her job, which is great! And of course your Washinton D.C. rendevouz sounds freezing, albeit fun.

B'Ahavah,

Ayelet

[wsc]

Amy---

I just wanted to say that I hope you finally get some answers and I'm so glad that you finally have a doctor who is taking you seriously. I know that must be such an enormous relief!!! please, please let me know what the results are today. My thoughts are with you, hun.

[calypso]

Just an update:

I got the bloodwork that was ordered the other day -- ANA, growth hormone, and a bunch of other metabolic & rheumatologic marker stuff. Everything was normal.

Now, HOW everything can be normal I do not know. It's baffling to me. I just can't imagine how I could be experiencing so much weight loss/muscle loss and not have a single elevation or depletion of any hormone. But whatever. I know this is supposed to be good news, but I guess I was hinging on this bloodwork to pick something up that is actually treatable. It's so difficult having no diagnosis and having symptoms that accompany POTS that seem to go beyond POTS.

Anyway, just wanted to keep you guys posted. I probably won't post again until Tuesday, after I have that appointment with the endocrinologist. A happy holiday to each and every one of you -- you are all true gems and have touched my life in ways you'll never know.

Amy

[Radha]

i know how u feel about the normal results amy, it is baffling when you feel so terrible for every test to be normal, when other people who are much healthier and stronger than us get abnormal results when they were not even expecting it! i dont want to be sick but i want validation and proof of how terrible i feel, just wanted to add that i know how u feel, take care and wish you the best,

radha

[calypso]

I saw the endocrinologist yesterday. Another waste of time. Would you believe he said he didn't see many people with unintentional weight loss? That seemed odd to me, since metabolism is directly related to this. He said most of his patients are diabetic and fat.

Anyway, he ordered a cortisol and metanephrine test, which I had drawn this a.m. He said if these came back normal, that I should just accept the fact that I'll never know what's wrong with me, and just come back if it gets worse, but hope that it will get better. Although what would he do if it got worse, since he doesn't know what's wrong? I am so frustrated.

Because I still have this weird breathing problem all the time and it hasn't gotten any better, he suggested that I see a pulmonologist. I think it will be another waste of time, and it will be the 8th doctor I would see. But as my husband pointed out, I might as well go, since we've come this far. So I may ask for a referral. Has anyone here seen a pulmonologist? I did have a basic pulmonary function test in May, and it came back showing mild asthma, but my family doc said these tests are very vague and can't always be correct. He gave me an inhaler, which did nothing but cause me more tachycardia. Are there more specific pulmonary tests?

Amy

[Ernie]

Hi,

I am sorry that your endocrinologist appointment did not go well. I think you should continue to find a doctor that will at least try to find what you have.

I never had pulmonary test but it's worth looking into it.

Ernie

[MomtoGiuliana]

calypso

So sorry this endo was not very helpful. It sounds as if he had a preconceived idea that he would find nothing from the beginning. That does seem strange that he says he hasn't seen many patients with unintentional weight loss--however, obesity is a raging problem in society these days. Anyway, it IS good news that all those tests came back normal.

It does make sense to go ahead and see the pulmonologist!

How are all your POTS symptoms these days?

Katherine

[calypso]

Katherine,

My POTS symptoms are the same -- short of breath nonstop, tachycardia when standing (but under some control with Toprol XL), and constant fatigue. Oddly enough, I don't get dizzy when I stand anymore. That stopped in the summer, and I don't know why.

It's the shortness of breath and mostly the other stuff (the weight loss and muscle loss, feeling hot all the time -- like I'm inflamed on the inside, and the dry mouth when I wake up) that bothers me. I can deal with a fast heart and fatigue, but I cannot deal well with shortness of breath and being so weak. There seem to be a select few of us who have the shortness of breath thing and no cause is ever found, so I figure why bother?

It's exhausting to try and keep up my part-time work and take care of my daughter. Maybe that's my problem -- that I try and do it all as if I were not sick. But we just moved into a new house, and I really don't want my husband to have to make up for my shortcomings. I just have to tough it out.

Thanks for asking how I feel. Hope you are still mostly symptom-free or getting by with not too much trouble.

Amy

[MomtoGiuliana]

Hi Amy

Mostly I am free of significant symptoms, but they do wax and wane still. I also have shortness of breath at times, btw. I particularly notice it in the mornings if I am doing something that involves getting into several different positions (crouching, bending, reaching) in fairly quick succession. Oddly I am less out of breath after climbing 3 flights of stairs at work. I think many of us do experience shortness of breath actually. But, being out of breath frequently must be very tiring.

Some of your symptoms are troubling b/c they do not seem to be typical POTS symptoms, and it is very frustrating that this endo has not been of any help. I hope he is correct that you will re-stabilize on your own eventually.

Have you looked at the exhaustive list of POTS symptoms that I think was produced by Vanderbilt? I don't think I've seen this list. My doctor mentioned it to me, and said he has all his new patients review it and check off any of their symptoms. I believe he told me there are over 100? Anyway, I thought if you haven't looked at it (and certainly someone on here has this list?), it could be that you would find all of your symptoms listed there and it might give some peace of mind.

It sounds like you are trying to do a lot. I know how hard it is to care for a toddler and work part-time, since I also do that. And you have just moved! That is a huge push-up, especially if you two did most of the packing and cleaning and unpacking, etc yourselves.

I understand what you mean when you say you just want to "tough it out". I have had many days like that. I just think--I'll just get myself through this today, and tomorrow will be better. To a degree I think this is a good approach to this condition for many of us--in that, even though it is hard, conditioning is ultimately important for recovery. It really is a balance though, b/c, I also know from experience that pushing too hard results in immediate set-backs instead of advances. So, be gentle with yourself.

I hope you go ahead and see the pulmonologist.

take care, Katherine

[Guest tearose]

Oh Amy, I'm just catching up with your news and at first felt happy for you and now I'm frustrated! If this endo is not the right doc, then you know what to do...get a new one! I want to encourage you to keep on working to find answers. Remember too that those answers may take months to get! Just know that there is only one of you, and you deserve the best! Keep your chin up!

I sometimes go through a period of months where I loose weight to below "normal" for my age group, and the Mayo Clinic said that according to my "standing catecholamine levels" I was burning a lot of energy and having trouble maintaining weight because of that. They said not to worry unless I became unable to eat anything. I go onto a special "shake" to be sure I am getting all the needed nutrition to be healthy. I have learned to live with the thinner version of myself when this happens since it is not out of the range of normal for some dysautonomics, I don't think about it much anymore.

I hope you find a wonderful doctor and find peace with the answers. Take care, tearose