Hi, everyone. My PCP did a very thorough blood work up on me and what we found was shocking. My liver is extremely inflamed. I don't know the medical terminology, but a normal liver "count" is in the low to mid 30's. Mine both came back at 230+! I can't take anything for pain because he said my liver is showing signs of beginning to die. Again, I apologize for not being familiar with the terminology. He said I'm borderline diabetic, but he can't give me anything for it just yet because of my liver. He also said I'm severely anemic. I've been on prescription iron and eat iron rich foods every day, and it's so low he said it's very possible I may need a blood infusion. My sodium is low despite using sea salt on many things. He says I drink too much water (about two gallons a day), but that's because of my extreme dry mouth due to Sjögren's. There are other things, but those were the biggies. So, he's going to try to treat me as an outpatient. He gave me prescriptions for a liven sonogram, an endoscopy and colonoscopy to start. Oh, he said, not only is my red blood cell count low, but my red blood cells are "washed out" looking under a microscope and he says he thinks I have some internal bleeding. Nothing that will put me in the hospital, at least not yet, but that's why the endoscopy and colonoscopy. He spent over an hour with me going over everything. So, today I will schedule my appointments ASAP, and he gave me the doctors names at a very good hospital, albeit two hours away. This news had me pretty shocked yesterday and I barely slept last night. I'm feeling better this morning. I'm going to see my therapist this morning. Oh, I also continue to have hypothyroidism even though I'm already on 275mcg of Synthroid. I'm not sure what else to say. I'm scared, but I'm okay. My case is just so complicated. Thank you for hearing me out.
Oh sweetheart. I’m so sorry to hear all of this. You definitely have a lot on your plate. Because the medical world is so slow , I can only think what I would do. First I would make a list of all the problems you listed. I know my Lupus brain would forget after a while. Then I would educate my self as much as possible. If by internet visit only reputable sites such as Lupus.org, mayo clinic etc… There are a ton of lupus boards and chats but for real advice you can count on I would go to the main sources. Dr. Thomas just published an encyclopedia on Lupus. It is an EXTENSIVE look at Lupus. You can find this on amazon. Go to the nearby library and find Dr. Daniel Wallace’s book too. Begin your search. Write all your questions about each symptom. Make notes about each symptom. This is your body ,your health, and your life! Get a copy of all your tests records. Don’t be arrogant and try to tell them what to do,
but let them know in a respectable way you are doing your homework too. This is what I would do.
Thank you so much for the feedback. I will look at those books on amazon.
Hi Kim.
I also have Lupus and Sjogrens .
My Liver has also been effected. Mine is Autoimmune Hepatitis.
Is that what he told you? Mine was also over 200 and I felt so bad .
All I wanted to do was sleep, wasn’t hungry and was sick to my stomach.
He put my on Imuran and Prendisone and the numbers came down.
I hope you feel better
Pam
::hugs:: Hang in there hon. I'm keeping you in my thoughts and prayers!
I was working out with personal trainer and my muscle enzymes became elevated and my LFT’ s raised to over 400. 5 months of prednisone later they are done
The doctor asked me if I’ve ever had hepatitis and I said no. So, they’ll be testing for it. He did not recommend I restart prednisone. I just scheduled the ultrasound for my liver. I actually just made all of my doctors appointments. Most will be taking place next week. Thank you all for your feedback. I’d like to hear from more of you who may have been in a similar situation. Thank you. 
Kim stay positive! I will keeping you in my thoughts and prayers.
Sorry to hear you have some much going on right now! I have not had a similar situation but wanted you to know that you are in my thoughts and prayers. Keep us posted on how you are doing. Hugs!
Stacey
Hi Kim, so sorry to hear all that you are going through. I should tell you my experience so you won't be so worried. I had Hashimoto's thyroiditis and psoriasis, which are two autoimmune diseases, but they were under control and I felt fine. I was at work one day in 2004 and my boss looked at my eyes and said, "JoAnn your eyeballs are bright yellow". Well, I knew that meant liver, so I immediately saw my doctor and had a blood test. My liver enzymes were over 2000, at that time. Over the next couple of weeks things got worse and the liver enzymes ended up over 3600. My doctors started talking about liver transplant. Then suddenly things started getting better. I wasn't diagnosed at that time, not until my next liver crisis in 2008 when my enzymes were over 1400. Then they finally did a liver biopsy and diagnosed me with autoimmune hepatitis. The word "hepatitis" just means that your liver is irritated or inflamed. Most people think that hepatitis only means the viruses, like Hep A or B or C, but I did not have ANY viruses, I've never had any of those illnesses. The word "autoimmune" means that your immune system is attacking your body, usually a specific organ in your body. So autoimmune hepatitis means that your immune system is attacking your liver. The only way to diagnose autoimmune hepatitis (aka AIH) is to do blood work to look for the antibodies that your immune system would be making to attack your liver, and to do a liver biopsy to look at tiny slivers of your liver under a microscope.
Many many people with lupus also have autoimmune thyroid diseases like Hashimoto's or Grave's disease, and autoimmune liver diseases like AIH, or Primary Biliary Cirrhosis (PBC) or Primary Sclerosing Cholangitis. I myself have been diagnosed with six autoimmune diseases plus fibromyalgia. My AIH, lupus, Hashimoto's, RA, celiac disease, and psoriasis are all under control with Cellcept, prednisone, plaquenil, levothyroxine and liothyronine. I also have to be gluten free, of course.
Good luck to you! I hope my story encourages you because my liver enzymes were MUCH higher more than once and I'm still alive (and did not need a transplant). ((((((((((((((((((((((hugs))))))))))))))))))) I think you will be alright, hon. Praying for you!
JoAnn
I’m starting to feel a little better hearing your stories. I appreciate the thoughts and prayers. Thank you.
Prayers for you, Kim.
Hi Kim, first off take a deep breath and try to relax. I know easier said than done.
I had to be hospitalized a year and half ago due to needing a blood transfusion. Dr did an endosopy and a colonoscopy and found in the Endoscopy I had severe chronic gastritis. That's what was causing the anemia and told me to cut out all fatty, spicy foods, eat bland and avoid carbonated beverages plus he gave me a prescription for Prilosec. I no longer take the Prilosec. Any time I eat or drink something that messes with me I drink goat's milk.
As far as a liver problem I didn't have that, the Lupus was attacking my kidneys. I guess all dr.'s are different, if I had that type of problems my dr would throw me in the hospital immediately and start giving me an IV of Solumedrol. I don't know if that would help or hurt a liver issue though. I do know my dr has told me if that my liver ever gave me issues she would need to hospitalize me.
Anyway, I'm sorry you're having to go through this but look on the bright side. The dr knows you have a problem and he will get you to feeling better. Hang in there and sending hugs and prayers your way.
Kim....I'm praying for you to stay calm during all your tests. If you have any fears, talk to your doctor, pastor, family and we here, are here for you. I hope they will come up with a plan that will help you. Good luck, and feel better.
Thinking of you and hoping for the best!
It breaks my heart when I see people with more symptoms and illnesses than just lupus. You mentioned your liver and you can’t take certain meds, etc. Ask your dr about Salagen 5mg. It helps immediately. It will help so much w dry mouth. Don’t know if it will affect other things going on with you but it’s worth a try. I also have sjrogens and as long as I don’t take it close to bedtime I won’t soak up my pillow with drool, which is not fun cuz it wakes me up and w lupus, sleep is precious.
I will be thinking of you please let us no after your test and appointments are thru.
Hi Kim, I'm so sorry to hear that you are going through so much. I had Hepatitis B 40 years ago and almost passed away. I know how painful liver problems can be. Back then they had no medications for it so I just stayed in the hospital for a long time until I got better.
I'm sending you huge hugs and prayers. Hang in there!
Kim, I'm so sorry to hear this, but it sounds like you have a good doctor who is taking the time to work closely with you. Will keep you in my thought and prayers!
Kim, Thinking of you and I’ll pray for good results------hugs!