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Could I Have Dysautonomia?


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I am newly registered here and was looking for advice. I am a 44 yo female and was diagnosed with Hashimoto's thyroiditis in October 2007. I suspect that I have had a thyroid problem for some time. Had a premature baby in 2000 and two miscarriages after that. No menstrual cycle since the last miscarriage in Feb. 2002. I have tried for the past 6 years to get a diagnosis.

I saw a new gyn on Monday and she said that she suspects an auto-immune ovarian problem in addition to the Hashimoto's. I saw a cardiologist yesterday and he said he believes that I have an undiagnosed auto-immune or endocrine problem. I can't seem to get a referral to have it checked into further.

I went to the cardiologist because I have been having blood pressure problems. Initially I was concerned because my diastolic was 90-92 the three times I went to the endo. I got a home blood pressure machine so that I could keep track of it. I was very surprised to find that my bp was usually low at home, almost always under 100/65. I have always had bp of 120/80 at the drs office. I have been feeling lightheaded for the past several months. I did see an ENT who evaluated the lightheadedness. He didn't find a cause.

Symptoms include: fatigue, muscle soreness with little or no exertion, bp low at rest (sometimes 88/60), diastolic bp high when stressed (90-92), lightheaded, toes turn blue/purple, feet and hands turn red, cold feet, hands and nose, hands hurt if I have to touch anything cold, skin flushing, if in a stressful situation I feel faint if I have to stand up for too long, heart rate fluctuates from low 60's to 120, and anxiety/panic.

I have taken my bp when reclining and sitting and then repeated after standing and it goes up, not down. I haven't tried standing for a while and then taking it.

I am on Synthroid now and was given low dose HRT to start taking. So, I do have some hormone imbalances which could be causing some of my problems.

Anyhow, I am desperate to feel better and don't really know where to start or what kind of dr. to seek out.

My husband read about dysautonomia on Wikipedia after I mentioned it to him. That article talks about sudden cardiac arrest. I am scared that I am going to suddenly drop dead now.

Any advice appreciated.

Cindy

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First of all Cindy, welcome!

Secondly, I'm not sure why wikpedia said you are gpoing to die of sudden cardiac death! You may feel like you are at times, but POTS is typically a chronic long term problem. Some people get better, some slowly worse, and some wax and wane.

There are lots and lots of various symptoms and your best bet is to look at the info on this site, as opposed to wikpedia. There is an abundance of information here.

With all your problems with menses, conceiving, etc, has anyone looked at polycystic ovaries? The problem with pots is that so many things can over lap, symptom wise.

Depending on where you live, (sorry, I didn't look to see if you put that down) most people see a neurologist, cardiologist, endocrinologists. The most important, however, is a good primary willing to work with you and other doctors. The largest percentage of us have had many struggles in finding good doctors, or even a diagnosis. You will learn patience, if nothing else!

Hopefully this is a starting point for you, but I do want to assure you, that wikpedia is misinformed. morgan

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Thanks for your reply, Morgan.

The gyn thinks that I have ovarian antibodies which caused the menstrual problems. I know that people with auto-immune diseases often have more than one and can also have dysautonomia. I have a book called Living Well With Auto-Immune Disease which is where I first read about it. I live in Central Florida by the way.

The cardiologist didn't have anyone to recommend I see. He said he would discuss with my endo, but the endo is really not very helpful. He is willing to treat the thyroid disease and that seems to be it. He's very "old school" and kind of rigid about what he thinks and does. My GP is very sympathetic, but seems to do a lot of listening and not much acting.

Ernie,

I think that I will write him a letter and tell him that I would like to be evaluated for this and see what his response is. Thanks for that advice!

Cindy

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I read through the wikipedia description and edited the prognosis section to add the following line:

"Most forms of dysautonomia are not life threatening, even if life changing in the form of minor to major limitations in activities of daily living."

Cindy, the above holds true for most of us here. That's not to make light of the fact, at all, that some forms are progressive, and some forms are, in fact, fatal. However, those with those forms are in the minority of folks with dysautonomia.

You can try to get an evaluation by a doctor knowledgeable in autonomic issues--there's a list of doctors on DINET's site, as well as in other locations on the internet. I would not suggest going to a doctor without some background info on their knowledge of dysautonomia. Even within cardiologists, there are FEW who have chosen to specialize in our set of disorders. Many of those who have are on the physician list on the DINET website.

Nina

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Nina,

I saw that there was a dr. listed in Jacksonville, which is about 3 hours from where I live. I'd definitely be willing to make the drive to see someone that was knowledgeable! It is frustrating to know that something is wrong with you but not be able to find a dr. who believes you or is willing to help. I may not have dysatonomia, but I think it is a distinct possibility and one worth checking into.

I appreciate the info about wikipedia. It's hard when you have limited knowledge to wade through the stuff that's out there on the internet. I'm highly susceptible to thinking the worst which doesn't help!

Thank you for taking the time to respond,

Cindy

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Hi Cindy,

I would say you need to ask for a Tilt Table Test. That would at least rule out POTS/NCS. Then you can get your foot in the door to other docs (hopefully). Believe me, I know what you're going though with the docs! (as do a lot of people on here!) Just try to stay positive, as much as possible. Hope that helps!

Rachel

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