Hi I am new to this site....

[cft2005]

Hi guys my name is alex and I was diagnosed with AD about 6 months ago and its definitely been a roller coaster! I have been trying to find people with my same situation to talk to since I live in a small city and no one really knows anything about it.... I did have a question...

has anybody had any problem with weight loss? I have lost almost 15 lbs... and my initial weight was 120 so now i'm starting to really get worried and I can't get any real insight from my doctors except to eat more.... which I have been.  I have an app on my phone where I keep up with what I eat and I am still loosing weight...I don't know what to do?

[evo123]

sorry.....forgot to answer your question!!!

I lost quite a bit of weight when I was first hit hard by this, but I have put it back on now -whether this is the Fludrocortisone or not i am unsure x

[evo123]

Hiya Alex welcome to our Dysautonomia Community!

As the guys have said above this is a great place to come to meet others in similiar situations and gain some advice and support.

Please take a look at our health pages, there may be some info there that will help you:

http://www.medhelp.org/health_pages/list?cid=196

Also, below is a link to trackers available from medhelp for you to use and keep track of symptoms that you may be having:

http://www.medhelp.org/trackers/list/196


evo x

[lilmissposey8088]

A lot of us with POTS or the other forms of AD have digestive issues. Do you have a GI doc? You might want to look into gatroparesis for the nausea. I have nausea almost every day. I am fixing to ask my EP to refer me to a GI doc so I can see about my gastric emptying. I can't eat very much at a time cause I get full and since Autonomic dysfunction can disrupt digestion it fits to me. When I was first looking into POTS I didn't think all my symptoms  could possibly fit into one thing wrong with me and even after I read about it I was still just thinking heart. But AD is the whole autonomic nervous system which includes the heart rate, blood pressure, body temperature, respiration, digestion, etc.

[cft2005]

I do have POTS....recently I had been feeling nauseous for a few weeks but then I had an ovarian cyst rupture so they thought it was linked to that.  Thanks everyone for your insight....it has been very helpful! I am so glad I found this site!!

Alex

[mtgardner]

Hi and welcome!  It is a great group here and easy to converse with everyone without exception.  I have learned a lot since coming here and everyone has shared their experiences and knowledge whenever asked.  My diagnoses right now is pure autonomic failure and I came into it with low thyroid and my pulse never goes above 99 so I haven't had the same problem with weight loss as those with POTS.  If you had PAF and were losing weight that fast I would say have your thyroid  checked as it might be hyper.  Sounds though like you may have a type of AD with fast HR as described in both of the posts above.

Hope things slow down for you soon.  Marie

[beema36]

Yes I lost from 150 to 88 lbs. Now.that I am on betablocker.and heartrates lower have gained almost 10lbs bqck. I think the fast heartrates was burning calories faster than I could eat them.
Hopefully once.u.get under treatment and stabilize some u will stop losing.
And welcome to.the forum.:)
Beema

[lilmissposey8088]

First I want to say Hello and welcome to this site!!!
    
I'm sorry you are going through a bad time. What type of AD do you have? There are a lot of different processes that go under the broad title of AD. I personally have POTS and I have had issues with weight loss. I went from 160lbs to 125lbs in only a couple of months. That was this winter before I was diagnosed. I have some issues with nausea and IBS. That coupled with the high heart rate and I think my body was just using way more calories than I was taking in. I started eating the 5 - 6 small meals a day and I avoid things like caffine, refined sugars, and refined flours. I know that that sounds like a diet that will make you loose weight but it has helped me a lot. The sugars and stuff are triggers for my HR going way to high and  the small meals are easier on my digestive system. I have slowly gained 4 pounds back since I started it.

If you have some other form of AD and this is no help to you, I'm sorry. But there are so many wonderful people here with all forms of AD that will be able to help. But with AD no two people are the same. So what works for one may be bad for another. Keep your head up and trying though.