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Avatar universal

Can't wait until they figure it out.

Hello,

I never thought that I would be posting my symptoms online to try and get input from other people but I am feeling a bit hopeless when it comes to finding an answer as to what is going on with my health. So, I need some good advice. Here is the run down of what has been occurring:


About two years ago I started having heavy night sweats about 3-4 times a week. I have to change my clothes 3 times a night at times. I sleep with a fan, very light clothing, and a very light blanket.

About a year ago I noticed that I was using the bathroom alot to urinate but only in the last week did I find out through doing intake and output measurement that I am having an output of about 3500mls-4000mls a day when I only drink like 2500-2800mls a day. My doctor asked me to do this intake/output measurement.

I have noticed since September that I have grown very tired and have a decreased amount of energy. I still pushed myself to go to work (I am an RN).

About a month ago I had a episode where I was vomiting every hour for twelve hours straight. My husband also threw up a couple of times. I also had extreme pain throughout my body especially in my lower back. I ended up staying two nights in the hospital where they took my appendix out even though it wasn't inflamed. However, it was adhered to my abdomen. They did say that I had free fluid in my abdomen from an unknown source which they believe is what caused my pain.

Since the surgery my fatigue has worsened two-fold, I have developed palpitations, SOB with little exertion (such as brushing my teeth), chest tightness and SOB just when going from a standing to squatting position, dizziness, randmon leg and arm aches, leg weakness (feels like legs buckle sometimes), sharp random pains behind calf and thigh,  random tingling in my toes and fingers, dull headaches everyday, right eye lid droop, random moments of jumbled words or difficulty finding a word, orthostatic hypotension, HR that on average increases from 70bpm when lying to 115-120 within less than a minute upon standing. Yesterday I had a occurence of ringing in my ears after I felt a pressure release in my ear. The other morning for ten minutes my left side hurt everytime I took a breath.

Recently (the last three days) my orthostatic hypotension seems to be better however the HR is increasing the same and the diastolic is coming over 90 when I go from a lying to standing position.
Last couple of days my BP has been 102/90, 98/90, 119/93...My systolic drops as I stand and my diastolic rises greatly.

All of my blood tests have come back negative (CBC, BMP, Cortisol, Aldosterone/renin, liver enzymes...), my CT scan was normal, my EKG is normal, my EEG is normal. I am still waiting on results from my ECHO, ultra sound of the kidneys, and 24hr urine test. I am scheduled to have a MRI soon.

I have been out of work for a month. Before the surgery I was exercising three days a week, working three days a week, and I eat healthy. I don't smoke, drink, or use any kind of drug. I have cut back GREATLY on caffiene intake so as to try and rule that out as a cause for palpitations. Cutting back has not yet helped it though. I am a 23 year old female with a good health history. All of my immediate family members are healthy.

I have been taking Synthroid for about 2 1/2 years now for mild hypothyroid.

Sorry for this long message. Any thoughts?
20 Responses
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1465650 tn?1316231160
Normal INR in a healthy person is 0.7-1.2 and normal PTT is 25-35 at least according to treatment over here.

By looking at your results your INR means you clot just the same as everyone else and do not have thick blood at all it is normal.
PTT is a little slow, meaning that it clots just a little bit quicker than usual..(a couple of seconds)
At least that is what I get from your results. Remember I am not an expert :)
Helpful - 0
967168 tn?1477584489
hmmm they explained it was too low and said I bleed freely because my blood doesn't clot right...I guess that's what they meant that it was too low?

I posted in the blood disorders trying to find the answer or what it meant.

INR 0.85  Normal [1.0–1.4]
PTT 23.0  Normal [24-36]

Now I'm really wondering...
Helpful - 0
1465650 tn?1316231160
The right eye droop can come from if the clot decides to move and is more common in arterial blood clot.
Venous blood clots  are normally formed in the legs and then can break off to cause a PE

Interestingly you said Lisa that your INR is low??? That to me means that your blood is thicker than average... A high INR means that your blood is thin, and you run the risk to bleed more.
Normal INR range is from 0.7-1.2 anything under means your blood clots too quickly and blood is thicker, anything over is too thin and if you cut yourself badly then you could bleed out.
While on treatment my INR was kept between 2.0-3.0 to stop further clotting.

Anyone who has leg pain, SOB, dizzyness, long persistent cough and chest pain and have recently had surgery, traveled by plane long distance, long car journey or have been imobile for a longer period of time should always be tested for DVT/PE.
Some people get a PE without the leg pain and if this happens then they need to screened for clotting disorders.
Helpful - 0
967168 tn?1477584489
Janpes, I'm surprised they didn't test me too but I think they knew I had ANS problems and the symptoms are almost exactly the same...I saw a neurologist over the leg problems but lost my ins so I didn't get anything tested.. I will def look it up and ask my primary when i go back in a few weeks.

I do know my INR and PTT? APTT whichever one it is,  are both low; so that's the only thing I think would have helped in my case; I'm a 'free' bleeder ugh it's a pain.  the only symptom I do not have you listed is the right eye droop, my R eye twitches uncontrollable for hours on end, then it goes away, then comes back

so anyone who has these symptoms ask about DVT/PE
Helpful - 0
1465650 tn?1316231160
Hi Liisa,

In answer to your question, YES ...You can go weeks even months before being diagnosed with a PE, especially if they are small ones. You would know if you have a large one as you would need to go to the ER straight away and in some cases it can cause sudden death. Death from an untreated PE is about 26%.

The D-Dimer test is very sensitive but if it comes back negative then you probably don't have PE. But if it comes back positive it could mean there is a probability that you COULD have one and further testing should be done to rule out DVT/PE

If the symptoms coincide with leg pain (or leg pain that goes away when the other symptoms start) then it could be a possible PE.

I have lived and breathed DVT/PE since April last year when I was diagnosed myself. Spent 6½ months on warfarin treatment and have now been off treatment since Nov. 20th 2010.
It really could be something else but I know I would like to rule it out as a cause of my symptoms.
I am surprised though that they didn't even test ShawniL as DVT/PE main cause is surgery

Helpful - 0
967168 tn?1477584489
Janpes oh wow - that sounds so much like what we patients with ANS problems go through; I wonder how many PE's are dismissed as other things.

I've had almost the exact symptoms but chalked up to my ANS problems BUT I'm wondering about my hr raising so sharply (80 - 160's & 190's) ringing in my ears...going to ask my dr when I go; can you go months with one and not know it?

ShauniL to heck with TTT right now, get the D-Dimer test asap
Helpful - 0
1465650 tn?1316231160
Since the surgery my fatigue has worsened two-fold, I have developed palpitations, SOB with little exertion (such as brushing my teeth), chest tightness and SOB just when going from a standing to squatting position, dizziness, randmon leg and arm aches, leg weakness (feels like legs buckle sometimes), sharp random pains behind calf and thigh,  random tingling in my toes and fingers, dull headaches everyday, right eye lid droop, random moments of jumbled words or difficulty finding a word, orthostatic hypotension, HR that on average increases from 70bpm when lying to 115-120 within less than a minute upon standing. Yesterday I had a occurence of ringing in my ears after I felt a pressure release in my ear. The other morning for ten minutes my left side hurt everytime I took a breath.


Just based on this what you said and the fact that you had surgery I would be asking for a D-Dimer test and an MRI.
I developed a blood clot a week after surgery and had the leg pains etc... I was told if I have any SOB, heart palpitations, feeling weakness or pain in chest to get back asap as it could be a PE (pulmonary Embolism)
Just ask for a D-Dimer, chest CT scan WITH contrast to rule it out!

Helpful - 0
967168 tn?1477584489
you should have the TTT and find a dr that deals with dysautonomia if you can't find anything wrong - visit the dysautonmia forum and in the welcome thread there's a post with dr's and info on autonomic dysfunction - or if you're near Vanderbilt, Cleveland Clinic or Mayo they have good sites also

oh yeah I'm very familiar with polyuria, in 2004 I started with left flank pain and urinating 50-60 times daily and 8-12 times nightly, even replacing those fluids I become dehydrated easily, I went for every kidney test they could give me and none showed any problems; my dr in 2009 said it was probably due to my ANS dysfunction

what you describe is what patients of dysautonomia are going through, but it could be something else entirely...I went from age 9 until 42 for a doctor to get my dx right and give me a TTT - found out my normally lower bp bottoms out and my hr drops to 0...heart stops when I faint...lately though I've been having more issues with higher bp's and hr's in the 190's that's driving me mad but they again say it's part for the course with ANS dysfunction.

it could be you have OH and POTS mixed even mixed with other things going on
Helpful - 0
Avatar universal
My doctor diagnosed me with orthostatic hypotension because of the way my BP drops when going from a lying to standing position. Also, my HR goes up by 35-60bpm when I go from a lying to standing position. I have not had the tilt table test yet. My doctor thought that I was having the low BP because of my polyuria (causes dehydration) which she thought could be caused by a salt wasting disease but we have now ruled that out. I am still having polyuria for unknown reasons.
Helpful - 0
Avatar universal
Do I just ask for a blood clot test? What kind of tests would I ask them to do?
Helpful - 0
1465650 tn?1316231160
check for a blood clot please
Helpful - 0
221122 tn?1323011265
Honestly, your symptoms are so random that they could be all related to could be different things with a main problem setting everything else off.  I know I started with all my weird symptoms in my 20's, as well.

I also see something in your post that might be contributing.  You had symptoms, then eventually ended up with surgery and then developed other symptoms that can be the result of anesthesia and body trauma, for which a young person, such as yourself, may not be allowing yourself enough time to get better.

Even meds can have some of the symptoms you're listing.  

I can't say much as I have had a moderate amount of seemingly unrelated symptoms most of my life.  No doctor could ever figure out what was wrong and it's been over 30 years.  I found that for me, staying home was not an option, so I had to get up and work with my symptoms.  I am also an RN.  It is strange taking care of others when you feel like you should be IN the bed!

AI does sound like a possibility.  Have you been tested for Lupus?  Only saying because that one can have a myriad of symptoms that seem unrelated.

Keep us up to date, if you find anything.
Helpful - 0
967168 tn?1477584489
it does sound as if you have a mix of both AI (autoimmune) and ANS (autonomic nervous system) stuff going on here; which happens with some of us patients - but it also sounds like you have lot of other things going on also

how did you get the dx of orthostatic hypotension? that's usually in the dysautonomia umbrella and can be from ANS dysfunction; did they tell you what is causing yours and have you had a tilt table test? if not, that may be very helpful so they can see if anything else is going on

ANS issues are sometimes very difficult to understand and diagnose - you sound like you have many symptoms I've gone through - and my dr's have said AI is in my mix but haven't found out what yet but my symptoms match.

you should find a doctor in your area either in the Dysautonmia or on www. di net. org (take out the spaces) and write down everything that's gone on w/dates etc and go in for an evaluation to rule it out.

Also, hypothyroid can play a part in part of what's going on too and yes many of us even have that thrown into the mix - I was dx in 1998; took Synthroid for over a year.

good luck I hope they find out soon what's going on and you find some relief
Helpful - 0
Avatar universal
The other thing is there is an autoimmune group on here and also ans--just some places to also ask.
Helpful - 0
Avatar universal
The droopy eye, the young age, the autoimmune sounding of it--thats what makes me wonder.
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Avatar universal
I am not sure, but if you google it, it will explain all about it, symptoms, and more.
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Avatar universal
My doctor actually did mention that. I will look into it a little more. Would and MRI show that?
Helpful - 0
Avatar universal
myasthenia gravis? (spelling may be wrong)
Helpful - 0
Avatar universal
So far that has been normal as well. Thanks for asking though
Helpful - 0
187666 tn?1331173345
Blood sugar results?
Helpful - 0
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