I received some blood results back...Dr is intrigued

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PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/16/2011 1:19 AM (GMT -6)   
Ok, I am the person with the gallbladder surgery that went as far south as the cliche will allow it to go.  While trying to recover from all of this I just can't believe how nothing is making me feel better...at all!!!!!!!  I have always had autoimmune problems both of my children do, one is very chronically hit with Type 1 diab and Hashimotos disease and my daughter has Graves disease and polycystic ovary syndrome, my moms sister died from MS and my mom as hashimoto's too.
Anyway I have had doctor problems since this surgical removal of gallbladder, hernia, appendix and subsequently my job, 1000's of dollars and the list goes on and on.  However I had an appt on Oct 7th and he is not leaning to heavily on the Lupus diag even with ANA of 1:320 and numerous side effects.  On Thursday something amazing happened.....are you sitting down.....I received a call from HIS office to give me some of the test results that he had gotten back.  I was shocked, I have stopped calling doctors or persuing things but WOW! 
Anyway, my vitamin D level is super low!  It is only a 15 and evidentally normal is 32-100.  My calcium is low and my liver enzymes are elevated.  So, he is ordering more blood work because now he wants to check my parathyroids. (I already had my thyroid removed)  I had it removed 27 yrs ago though but my parathyroids were paralyzed for a few days but resolved themselves.  He is also checking for autoimmune hepatitis.   The new gastro doc I saw a month ago wanted to do 2 scopes on me one down the throat (difficult on me cuz of gastric bypass cuz you can't see much, and a colonoscopy.  There is MUCH talk about during this major surgery that possibly something got knicked or I have some sort of leak.  Another scenario is because I have had random blood levels before but none like these is that I have had some sort of problem and this has created a "major flare" of some sort.
Until all of the rest of the results come in they have added 50,000(I don't know if its mcg, mg or what) twice  a week.  They are going to draw an INI blood test and I have to starting taking thiamin as well.  I want to no what it is that I am going to get to take to make me not go bald within the next 4 to 8 weeks.  God I wish I was kidding....: (   I also would love to be able to stay awake.  When this tiredness comes over me it is like a heaviness that makes it hard to breath.  It even feels like my organs are tired.
I wish I knew what all tests he ordered.  I am just so happy that he seems to care.  What a blessing

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 10/16/2011 11:27 AM (GMT -6)   
Hey glad you got someone looking into this more :D! I know it is a relief to know that more tests are being done. Also, the vitamin D is 50,000 IU! If you want to know all the test, ask to get a copy of your labs...I think it would be a great idea to have a copy of each time labs are done incase you need to have them down the road, I have been keeping my lab results since 2009, and it is neat to see what things change while flaring!

Keep us posted!
Amy
Lupus Moderater
Cytoxan, Orencia, Septra, Prednisone, carvedilol, heparin, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: Ativan, zofran, hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/16/2011 5:42 PM (GMT -6)   
Thanks so much for the support. I have been beside myself with all of this. I feel like I am sitting in my chair disappearing. I am in my second week of classes and I just don't think that I have the mental clarity yet to handle it. I can't stay awake most of the time and when I do I am so unclear in my thinking. I get confused and just am a bit "off center" is I guess how I should put it. I now am scheduled for those scopes which means being put out I don't know I am so conflicted. I want to walk away from all of this but "this" is ME and I can't very well do that. I sometimes think if I could be awake and not in pain that would be okay enough for me. Oh yeah and I am not to fond of the idea of being bald. In fact that freaks me out completely! I thought school would be a nice diversion but it is just stressing me out more. But what a good shot in the arm it was to meet a dr that wasn't annoyed and was even interested and found me worthy enough to let me in on what he found out so far. I felt special and blessed.
Have a fantastic week everyone!

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 10/18/2011 10:21 AM (GMT -6)   
I had a Vit D level of 6! I took 50,000 units for 6 weeks and it went up to 30 then dropped back down to the teens. Good for you for not giving up as far as testing and seeing docs is concerened. Please keep us posted.

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/18/2011 11:44 AM (GMT -6)   
I will keep you up to date. They just drew the new blood tests today they did a calcium INI, magnesium some sort of smooth muscle thing and CPK. I finally contacted my brother (I wasn't raised with him is a cancer reconstructive surgeon) I wasn't raised with him so I wasn't going to really drag him into it all but I have been thru the ringer with docs here except this new rheumy I decided to bring it all up to him. His wife is also a dr and she read part of my msg to him and she said something is definitely OFF and said she would have him call me. More later. Good luck to you as well. Did they say why your Vit D keeps dropping?

twinglemimi
New Member


Date Joined Oct 2011
Total Posts : 3
   Posted 10/25/2011 4:58 PM (GMT -6)   
I just had to drop a class for those same reasons. It is depressing. :(

Also, my ANA has never been really high like some (or at least when it was tested), but I have several complications and my doctors diagnosed me with lupus.

I'm confused why you think you'll lose your hair. Even if they put you on chemo, it isn't the dose you would take with cancer and hair loss is much less common when used for treating autoimmune problems.

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/25/2011 7:56 PM (GMT -6)   
Well I had severe malnutrition as a complication of a surgery in June so it could be from that so it is unclear right now as to why I am losing hair like this. If I have autoimmune hepatitis I have read a symptom thingy on the internet and hairloss was on the list on a couple of sites. I don't know all I know is I want it to stop, I am SO scared to be bald, I am not all that vain but I sure don't want to lose all my hair.

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/3/2011 10:54 PM (GMT -6)   
Well I did go to the Rheumatologist on Tues and I do not have autoimmune hepatitis which he was afraid of with the low vit d low calcium and elevated liver enzymes. However with the 100% symptomatic Lupus/Sjorgens symptoms and 50% of the blood work positive for Lupus he is saying that I have "mild lupus" he started me on Plaquenil and Prednisone. I take one Plaquenil one day and two the next. I take one Prednisone daily it is for 12 days and then I stop but he said if I find I feel better on it to call him and he will keep it going. I had gastric bypass 9 years ago and steroids usually make me so so sick. also they make me sick and with the surg that I had in June that made me swell so so bad (Anasarca) I had to take 80mg of lasix daily the steroids make me swell to. I feel like crap still so badly with fatigue that I can barely describe and the pain I feel is unbarable but I had to go back to work we are drowning financially. See when I had this surg it was to be a one week out type of thing and back to work but it went way way different. I have lost over half my hair but he said the Plaquenil should help with the hairloss, fatigue and pain. GOD I hope so. I take adderrall to help with the fatigue and the fogginess because I fall asleep while ddriving and sitting in traffic, I wake up and the car is rollling but I think that I am going to be switched to nuvagil, I am getting a new doctor since I have had THE ABSOLUTE WORST doctor trouble since I got ill in June. I didn't post it here but I worked for my PCP and she was my absolute best friend. I helped her grow her practice 60% in a little over 2 years we were inseparable. When I for sick I really didn't hear from her at all. The when I would call her she was venomous to speak to....absolutely like she was biting me. The surgeon was worse both of them blowing me off completely I guess because a lot of my symptoms involved pain and let me tell you if you say pain you get problems because of drug eekers when I never asked for! When I asked for the ANA test she rolled her eyes at me....when I came back positive...she was quite shocked and moved at that point immed however it was 4 months after my life was ruined! This has beenn one of the biggest messes of my life. I am working for a new doctor now and heis AMAZING I know that he can help me. Good Luck to you but be bold and stand up for yourself but stand strong without fear!
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