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Two problems - Stupid endocrinologist and today's early morning ER visit--help anyone?

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Posted 5/21/2007 11:26 AM (GMT 0)
I was going to post a long gripe session about my endocrinologist (the one who ordered my SLE panel, of which my RNP came back high/abnormal), but here's the short of it:  she chewed me out for not being on the thyroid medicine that "she" recommended (I told her sorry but the medicine she wanted me on hasn't worked satisfactorily on me for years), she didn't want to talk about my thyroid nuclear scan (I had to bring it up, but thankfully it was normal other than my dead thyroid gland), and she didn't want to discuss my lab work that she, herself, ordered (SLE panel).  When I did get her to shut up over the thyroid medicine issue and discuss my labwork, she tells me "everything was normal but the RNP antibody, but she didn't know anything about it".  She told me to "talk to my primary doctor about it because I wouldn't listen to her anyway since I didn't listen about the thyroid medicine she recommended (but really that didn't matter since she was leaving the clinic anyway)".  She offered a print-out of my labs to me but told me "not to freak out because it looked worse than what it probably was, as many people have antibodies that don't mean anything".  What the hell?  If she "didn't know anything about this test, WHY the hell did she order it?  Why do these doctors think we're stupid?!  But, enough about the ignorant people of the world...

Onto early this morning...  I got up around 12:40 a.m.  I had been trying to go to sleep but it felt like I had acid reflux and I wanted some soda crackers to calm my tummy down.  I got out of bed, climbed over my baby gate (that keeps my dogs out of my bedroom), walked through four rooms of my house, got in my fridge and started putting food on a plate and boom--I passed out.  I didn't feel dizzy and I had absolutely no warning that I was fainting.  I have never done this before--ever!  I woke up flat on my back on my kitchen floor.  My eyes were closed but I remember thinking how incredibly dizzy I was.  This dizziness was so bad, that I thought I was dying.  I then thought how hard my bed felt, and then how cold it was, only to open my eyes and realize I was on the floor and what had happened.  about that time, my husband must have heard the fall and came out to see what was going on and found me.  He came in and helped me up (slowly), but I proceeded to vomit nonetheless.  We then went to the ER, I had more labwork, an EKG and a head CT, blood sugar, blood pressure, all of which were normal.  The ER doc's diagnosis was vasovagal syncope.  Sorry, but I traveled through four rooms of my house and I would think if I was going to pass out, it would have been in one of those other rooms.  Not to mention, I have no past history of passing out/blacking out or fainting. 

Has anyone had anything remotely close to this happening?  Even though my RNP was abnormal/positive for MCTD, that stupid endo doctor refused to diagnose me.  I do have an appointment with my primary doctor tomorrow, so maybe she can make some more sense of this for me--she's the greatest and very open-minded.  This black-out spell really has me worried, and I don't recall reading anything about it being related to Lupus.  Help, anyone???

Posted 5/21/2007 1:55 PM (GMT 0)
Peanut

When I was having a Lupus flare, one night I got up because I felt really hungry. I walked through my bedroom, through my living room, through my dining room and to my kitchen. I opened the fridge door and all of a sudden felt REALLY weird. I started to black out, my heart rate raced, I felt like I couldnt breathe and sweat covered my body in an instant. I dropped to my hands and knees and sort of ape walked back to my bed, where I collapsed. Once in my bed I forced myself to (carefully) stand up again and take my blood pressure. I had an electronic monitor. My BP when standing was 78/45. How I didnt black out cold I have no idea.

I DO believe very strongly that it is a vasovagal type reaction in my case. I have orthostatic hypotension. Which until that night, had never had an effect like that on me. The only time that it is a problem for me is during a flare.

Orthostatic hypotension is blood pressure that can be normal, or even high while sitting or laying down, but when you stand up (sometimes several minutes into standing up) your blood pressure drops. Unless they testeed your BP specificly for this phenomenon with a tilt table or standing BP's, they wouldnt be able to diagnose it.

In a flare this is a constant for me, although for the longest time I couldnt figure out what was going on, and the severity varied. I finally figured out that it was one of the things that was making me feel so exhausted.

The time in the middle of the night was the worst it had ever been, probably due to getting up and out of bed so quick, my blood vessels in my legs were lax as if sleeping still.

Certain medications can cause a drop in blood pressure as well. One thing to keep it from happening is to stretch and excersize your legs around in bed before rising. Especially in the middle of the night, and make sure and sit on the edge of your bed for a while before taking off : ) Another way is to make your fluid levels are high. I took to drinking pedialyte, because it helped balance fluid levels in my body.

Sometimes during a flare, it would be so bad that even sitting up in bed would make me light headed and I could hear roaring in my ears.

I have never passed out, although it is common with this.

My husband did pass out once from a vasovagal response to vomiting. Passed out cold after standing up and walking into the kitchen from the bathroom (and he wasnt sick, he vomited due to excess stomach acid) scared me to death. I called an ambulance because I couldnt get him to wake up.. we too went to the ER.. it was diagnosed as vasovagal response.

One way I tested to see if it was a problem is, in the am before rising, I took my pulse. Then I stood up quickly and took it again. Then I stood there for 5 minutes without moving and took it again. I think normal is for pulse to raise a bit on standing, but then to level out. During a flare, mine won't, it goes faster and faster as my heart is trying desperatley to make up for the lack of pressure.

The strange thing is, I felt extremely hungry, kind of a burning hunger when I awoke that night and needed to go to the kitchen.

Did you feel hungry at all?

I know that my blood sugar can drop real low, but then right itself on its own. (I was so suspicious of this that I purchased a blood glucose meter which confirmed it. My blood sugar would drop way too low, but then come back up tward normal on its own. I could feel it happening.)

Do you have problems with low blood sugar?

I am so sorry that you went through this, it must have been terrifying for you. Could be that its something entirely different than what was going on with me, but it sounded pretty similar.

Something to google would be.. Postural Orthostatic Hypotension, and another would be Adrenal Exhaustion. I purchased a book about exhausted adrenals and found that some of the information in there really helped with the Orthostatic Hypotenstion. I think I read somewhere that they are finding now that in some patients with Chronic Fatigue, much of the fatigue is caused by the hypotension, and that the hypotension could be linked to exhausted adrenals.

You did the right thing by going to the ER, at least you can rest assured that anything immediate was ruled out.

Take care peanut, your in my prayers.

Darlene
Posted 5/21/2007 7:30 PM (GMT 0)
Yes my doctors are retarded too, of that I am certain. It is so hard to get a diagnosis much less a knowledgeable doctor. I really envy those who haven't gone through this nightmare. It took 10 years and 3 life/death experiences to get a diagnosis. Drs. treat me like I am stupid or can't handle the truth. Sometimes I think they are stupid and can't handle the truth. I hate to say it, but I look up everything on the internet and give suggestions as to what I think it is. I'm not longer concerned with being proper although I try my best to be nice. I remind myself that Drs. are kind of human too and make mistakes. Can tell numerous stories and could have medical malpractice suits out the wazoo, but who has the energy?! My suggestion is to kindly remind them that this is YOUR body. I have denied medicine that didn't work or could cause futher damage. Perhaps research some local specialists to find a more knowledgable and caring physician. Yes, they will give you the "you are jumping from doctor to doctor so therefore you are a hypochondriac" speech, but in the end it will be worth it. Also, make a nice LONG list of ALL prior and recent symptoms (no matter how weird the symptoms seem) and have "proof"/medical records to back it up. Especially your bloodwork. That should be a dead give away. Also University Hospitals are a good place to go to the E.R. and get a follow up with "their" rheumatologist. Once you get their seal of approval, the diagnosis will carry more weight with the other doctors. I still get 20 questions at the ER, as soon as I say the University Hospital rheumatologist diagnosed me with Lupus CNS they back off and get to work. I still don't know what the big deal is. I have had two local friends with Lupus and heard of many more around here, so it shouldn't be such a tremendous shock. Sounds like you are at the "beginning" stage of the disease where they can't tell the difference yet. You know something is terribly wrong, but to them it is no big deal. After all you are still breathing (almost) right? As for me, I like to keep it that way as long as possible so the drs. need to figure it out. My CFS came from Epstein Barr Syndrome (my daughter was also born with it and now shows signs of Lupus). CFS is normal in all connective tissue diseases. I suggest getting your ANA, bloodwork and RNP results copied and keep them handy at all times. I remember when I had the pericarditis and strokes they were very curious about my RNP, compliments and Ig antibodies ( My RNP is normal but I have 2 very high ANAs). As soon as I walk in the door, the first thing every doctor looks at are these tests. Also try to get your compliments and IgG, IgA and IgM work done. I have a feeling you may have something with your IgG going on that may help. I have high IgM. Each are significant for different problems. I believe RNP is significant for MCTD and RA. Obviously it is a rheumatic disease one way or another. Because of the possibility of rheumatic arthritis, did your doctor to an Rh factor test and SED rate test? These may help with the diagnosis. Although it sounds more like MCTD or Lupus. Keep an eye on the thyroid too to make sure there is no more Hashimoto flare-up. That completely wiped me out when I had it. Luckliy it has not resurfaced. Some of these diseases are a mild version and some are more severe. I had started with mild symptoms in the beginning. Some people stay mild all their life. My grandfather was in his mid 80's when he died of Lupus. My friend was my age when she passed. Another friend of mine is like me but found a new medicine and is stable now. Like life you just never know. 10 years later, I am just now progressing to the more severe range. My daughter and cousin are mild and relatively the same as when they started just different symptoms. These diseases are very weird and symptoms vary but all connective tissue diseases seem alike. Mine strikes any where at any given time, each year a different organ/system. Some things are serious others not so much. Most of the time I can't tell the difference between life threatening and non-life threatening. With and without a dignosis I find/found it frustrating and confusing and the doctors still drive me insane (at least we all know I'm not truly insane now). On this site, I don't feel so odd. Always listen to your body and watch your bloodwork. I remember when I had chest pain that wouldn't go away, I went to the ER 3 times. They sent me home saying I was too young to have a heartattack. Well, it was not a heartattack but it did turn out to be pericarditis - just as lethal. Always check the medicines they give you too. If it doesn't make sense or you cannot mix it with another medicine talk to your doctor ASAP. Anything heart, head or organ symptoms make sure to go to the doctor right away. "blacking" out like you discribed could be a few things; not enough oxygen in the blood, neurological problem, the postural hypotension as described, seizure, mini-stroke (small blood clot), diabetes, etc. If it happens again go right to the best ER you can get to. CT scans are great for structural damage and large clotting, but don't show everything. You will need an MRA to see if it is artery related. Postural Hypotension you can usually tell if you get dizzy after standing when you get up from a squatting or sitting position. The nurse can check your blood pressure from both positions and determine if you have this type of hypotension. This type of hypotension probably isn't a major concern. However, I get small strokes when I have severe hypotension and chest pains from severe hypertension due to neuromuscular heart problems. All I know is I had this type of "blackout" you discribe happen to me and it was very scary. I've had it for years back and forth. A couple of years ago, my children thought I was dead when I had it two times and stopped breathing. The only difficulty is the attacks are transient thus making it difficult to diagnose. Usually with stroke activity you will notice if you loose muscle, eye or brain function. I didn't notice that you said you lost function so I would assume it isn't stroke related. Just wanted to explain that they couldn't see this on the CT Scan or MRA they did when I had these "blackouts", sensory/motor loss and dementia symptoms. They didn't know until I lost some of my eyesight and could actually see the blood clots in my eyes. But as you can see, there was loss of function. Just don't give up until it ceases to be a problem. It is like constantly figuring out a puzzle. The more pieces you have, the easier it is to see the picture. Since you have RNP and bloodwork abnormalities maybe it is time to see a rheumatologist. A neurologist may not be a bad idea either with regards to the "blacking out". Don't expect either to be too enthusiastic with you since you are new at the disease. From what I see they don't want to be bothered much until you have had surgery or been on your death bed a few times. Now I'm finally interesting to them. Too bad I wasn't in the beginning, it may have made a difference now. Oh, after-thought, bring your husband with you. That makes a huge difference in how they treat you. I didn't have anyone with me and was too exhausted to fight them and explain that I wasn't neurotic or depressed. My beginning symptoms were hemipelgia, migraines, severe fatigue, strange muscle and sensory symptoms, thyroid problems and achy joints. Sorry I'm such a sinic these days. Unfortunately that came with the dry humor. Humor gets me through this. So does picking on doctors that drive me nuts. I wish you the best on your journey. Please never feel bad about going to the ER. Before I felt so guilty until I found out that it eventually saved my life (several times). Keep trusting your gut and keep on them. I hope this helps - Kristin
Posted 5/22/2007 12:47 AM (GMT 0)
Thank you so much for replying!  I need to do some more research here, at your advice. 

Darlene, it sounds as if we had a similar type episode.  Luckily, my husband thought to take my BP after scraping me up off the floor and getting me into a chair and it was 124/97, with a pulse rate of 72.  I told the ER doctor this, and yet he still said it was a vasovagal episode.  I have never had high BP until sometime between 9/2007 and 3/2007, when I went in for my 6-month labs for my thyroid and they found both the TSH level high, as well as the elevated BP.  My BPs have always been fine, so they thought it was related to my thyroid (possibly what they call a thyroid storm).  They started me on Propranolol and HCTZ, which finally brought the BP down.  So, my problem has been high BP, not low.  Even on the Propranolol, the BP has not gotten too low, or low enough to induce this so-called "vasovagal attack".  They've also taken my BP both sitting and standing at the doctor's office twice in the past 2 weeks (most recently last Friday), and it did not differ much.  Wouldn't you think if I was going to pass out that it would have been in a different room and not waited so long?  I traveled through four rooms, was in my fridge sorting through food, and then it happened.  I didn't feel hungry per se--just wanted some crackers to calm down what felt like reflux churning.  I've never had a problem with low blood sugar, and it was fine in the ER.  I will do some reading up on the adrenal exhaustion--thank you so much.  And, thank you for your prayers--all here are in mine, too. 

Kristin, I'm so sorry on what you went through.  How horrible--and I feel guilty complaining!  I am beginning to wonder if it the bigger part of the problem on getting diagnosed, is more that the doctors are just either too confused or don't want to take the time to dig in and treat the cause and not the symptoms.  Let me say that I am a firm believer in being proactive in your medical care, medicine, etc.--even if that means Internet researching, whether the doctors like it or not!  This is number one on things I have learned so far.  And, just because you research, doesn't mean that you can't be nice about it--tact gets you a long way I have found out!  To me, any doctor that thinks you are a nutcase for researching, needs to get off their high horse and stop being so close minded and taking things personally!  I don't demand that a doctor has all the answers, but the willingness to find them and believe their patient.  I had a full SLE panel and the RNP is the only thing that came up abnormal/high.  My Rheumatoid factor and the rest were normal.  I am going to ask for referrals to both endo and rheumatology at Barnes-Jewish when I go to my primary tomorrow.  I want to know the pros and cons of elective thyroidectomy, just to rule out my thyroid being the cause of any future problems.  I mean, who knows what else is getting ready to crop up in the future, right?  My thryoid is pretty much dead as evidenced by my recent nuclear scan and I have to take thyroid hormone for the rest of my life anyway, so I'm not sure that having it removed will hurt anything.  Please keep your sense of humor--you either laugh or cry!  Also, keep picking on the stupid doctors--sometimes it's the little things that get us through!!

I'll try to post tomorrow as to what my primary says.  Thanks!

Posted 5/22/2007 2:54 PM (GMT 0)
Hmmm, the high blood pressure thing does change things a bit. BUT.. I have had high blood pressure readings as well. In my research into Postural Hypotension, you can sometimes have high blood pressure during your readings as a re**** of an over reaction by your body to fix the lows.

Definatley keep at your physicians though if you feel they are missing something. I do know first hand how horrible that can be.

I dont think however that for it to have been vaso vagal that you would have passed out before the kitchen. It doesnt work that way usually. Usually it takes 5 minutes or so for the pressure to fall far enough.

Thats why just taking a sitting and standing doesnt always work at the physicians office either. Sometimes a tilt table test must be done.

I do hope your feeling better Peanut. I know how hard it is to be worrying about something you think the docs are missing.

I went years, finally resigning myself to death, before they figured out I had lupus.

Erg.

Darlene
Posted 5/22/2007 8:08 PM (GMT 0)
 

Peanut:  Glad to hear you already learned how to handle these situations.  Took me years to figure out.  Sounds like the blood pressure change could be significant.  Did the doctors say why you had the reflux feeling?  I found that odd.  Do you have GERD?  Keep at em!

Darlene:  Thank you for the information.  I didn't realize it could take up to 5 minutes.  I found out with the nurse doing the BP sitting and standing.  Unfortunately, I get these symptoms when I walk or sit for long periods too, although those are usually with syncopy.  Cardiologist says my problem is neurological (Neuromuscular).  3 years later and I still have no clue what that means.  Erratic heart I guess. 

I guess it is difficult when there a symptoms and all to many possibilities as to why they are happening.  Glad to hear you will see this through and I hope whatever it ends up being is on the mild side, or better yet, treatable.  Keep us posted and I wish you the best - Kristin

Posted 5/24/2007 5:58 PM (GMT 0)

Went to my primary two days ago and she said she didn't think my fainting/blacking out episode was orthostatic hypotension, due to both the length traveled in my house as well as the immediate BP reading taken afterward.  She didn't know much about the RNP antibodies but submitted a referral to my insurance carrier to Barnes-Jewish to see a rheumatologist there (she first tried to get me into the one rheumatologist we had but it was a 4-month wait).  I'm just waiting on them to call me to set the appointment up.  I'm now hopeful that I will get some answers! 

Thanks for all your encouragement--it means a lot!

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