So I have very recently been diagnosed with Hashimoto's thyroiditis and lupus. I also have degenerative disc disease. I do not have a complete treatment plan for any of my diagnoses and am still undergoing numerous tests. I have had several blood tests and all of my liver enzymes are extremely elevated. My doctor even tested me for hepatitis because of my liver enzymes but those tests came back negative for any type of hepatitis. My question is have any of you had issues with your liver due to your lupus? I don't even know if lupus can affect the liver. Also, I have had swelling and pain in my right armpit/side of my right breast. Since I've had previous lumpectomies I immediately thought I was having another breast issue. I saw my primary doctor who sent me for a mammogram and ultrasound. Those tests showed a lymph node in my right armpit that was enlarged to twice it's normal size. I was sent for a CT scan 4 days later and the lymph node is now back to it's normal size. Can this happen with lupus? I don't know much about any of these diagnoses I've just gotten. Since Hashimoto's and lupus are both autoimmune issues it would make sense to me that the lymph nodes could be affected as they are part of the immune system but I don't know if that's accurate or if it just seems possible to me. My endocrinologist and rheumatologist want a lot more testing done. The problem with that is we are being transferred from Illinois to Tennessee with my wife's job. The movers will be here on Monday! So, right now, I am at a stand still in testing until I can get in to any doctors down there. Meanwhile I'm driving myself crazy wondering what is going on! I am a stressed out, confused mess. Any info you could share would be greatly appreciated!!! Thank you all.
My lymph glands in my face swell quite regularly, usually during a flare and are accompanied by a sore/swollen throat. I’m not sure of the reason behind it, it’s just something I’ve come to accept!
If your glands have gone back down I’d say that’s a good sign it’s nothing more sinister and it’s probably just one of your symptoms. Just mention it to your doctors next time you see them.
This group is great for advice and support, so feel free to ask and rant away - the lovely people of the forum always manage to cheer me up anyway!
Hope the move goes well!
Chloe x
Not everything is due to lupus - an infection can cause the lymph nodes to swell and will go down as your body clears the infection.
I hope you can find doctors soon after you move. Have you asked your doctors if they can referr you to some one their. My doctor had all my appt set when i moved and it saved me alot of stress moving is very stressful
I have swollen lymph nodes at times and usually run a low grade fever with them.
I did ask my doctors for referrals and they have sent referrals and my charts as well as all imaging, etc. to the medical group we found in Tennessee. The problem is I can't seem to get into any of the TN doctors until July!! I cannot wait that long. My rheumatologist and endocrinologist both said they will call to speak to the doctors there to see of they can have e seen any sooner. We go to OSF here and there is no OSF there so it's a completely different medical group with their own doctors, etc. I feel like I'm in a nightmare. I can't understand what's taking me so long to get in. Thanks for responding. I really appreciate it!!
purplebutterfly said:
I hope you can find doctors soon after you move. Have you asked your doctors if they can referr you to some one their. My doctor had all my appt set when i moved and it saved me alot of stress moving is very stressful
I have swollen lymph nodes at times and usually run a low grade fever with them.
Thank you so much, Chloe!! I'm hoping to get in soon and see what the doctors in TN want to do next. I'm very happy to have found the group. Thanks so much for your help.
Chloe Allen said:
My lymph glands in my face swell quite regularly, usually during a flare and are accompanied by a sore/swollen throat. I'm not sure of the reason behind it, it's just something I've come to accept!
If your glands have gone back down I'd say that's a good sign it's nothing more sinister and it's probably just one of your symptoms. Just mention it to your doctors next time you see them.
This group is great for advice and support, so feel free to ask and rant away - the lovely people of the forum always manage to cheer me up anyway!
Hope the move goes well!
Chloe x
I know that lymph nodes can become enlarged with infections but I have not been sick other than lupus, Hashimoto's issues for quite some time. That's part of why I thought it may be related to the lupus or even Hashimoto's. Since lymph nodes are part of the immune system I thought they may swell due to autoimmune issues. Thanks for responding.
poobie said:
Not everything is due to lupus - an infection can cause the lymph nodes to swell and will go down as your body clears the infection.
Lupus can affect any organ in the body. I have PSC (Primary Sclerosing Cholangitis) which is an illness of the vessels and ducts from the gallbladder, pancreas to the liver. My enzymes are always elevated.
Thanks for the information, Cameron. I guess my enzymes are pretty high. She repeated the tests and then tested me for hepatitis. Thankfully that was negative but the enzymes were still very elevated. Hoping to get to the bottom of it soon!!
Cameron said:
Lupus can affect any organ in the body. I have PSC (Primary Sclerosing Cholangitis) which is an illness of the vessels and ducts from the gallbladder, pancreas to the liver. My enzymes are always elevated.
Ask your doctor to refer you a specialist in the area that you are moving to and they will get you in asap. Even if you had to go ahead of your wife and family a couple of days at least it is one step closer to getting established with a new doctor. Hope this helps.
I pretty much always have swollen lymph nodes. Sometimes from infections other times from Sjogren’s other times from Lupus. At times I’ve looked like I have the mumps because they swell so much around my neck and jaw. I will say that when the ones in the groin area swell up, it’s incredibly painful to walk. I have never had elevated liver enzymes but both my mom who has RA and my husband who has gout have struggled with it. My husband doesn’t drink so we know it’s not that. I am not well versed in Hashimoto’s although I have many of the symptoms. I see my endocrinologist next week to see what is going on. I really hope that your doctors are able to get you in sooner. July seems unreasonable to me. Whenever I moved I was always seen within a month. I hope you get answers soon. Good luck! Gentle hugs, Annemarie
Sorry, forgot to add that I also have degenerative disc disease but it’s not related to the lupus.
Dear AGM,
I have lupus, Sjogren's, and autoimmune hepatitis. They overlap. When the liver tests are abnormal, it's academic which one is causing the problems. Now, my liver enzymes are amazingly normal--still taking meds though. At one particular point in this journey, the lupus was causing the hepatitis. Now all liver symptoms have melted into one treatment plan for medication.
In my late 20s I had Hashimoto's, thyroid burned out with radiation. Now I'm on thyroid replacement.
Hind site is 20/20 vision. All my ails since childhood came to a crisis from 2000-2003 when they all spelled multiple autoimmune disease.
I'm trying to say is that you can live with the symptoms until you get your new doctors set up. Contact a rheumy as soon as you arrive at your new location. Or, ask your rheumy of FP to help you get a referral to a new doctor at your new destination. Don't forget about your medical records.
Don't hesitate to go to an ER if you have severe symptoms and/or pain.
Try not to stress, it can make your symptoms worse. This can be frightening. All of us here can empathize. You got to hold on.
If you are moving near Nashville Dr. John Sergant is awesome. He diagnosed me, and later I found out he is the best in the world. He is at Vanderbilt University.
Thank you. I have already had all of my charts sent to the new medical center. I called to try to make appointments but they were telling me I had to see a primary doctor there in Tennessee first and then get a referral. It's been a mess!! I finally got referrals from my current doctors sent to my new doctors along with all of my charts, etc. I'm just hoping to get in sooner than July! That's when they are saying I can be seen. I'm more worried about the liver issue than anything else. I mean, I only have one liver. It makes me nervous that it's not working correctly. Maybe I'm overreacting but it is scary!!
USAGURL said:
Dear AGM,
I have lupus, Sjogren's, and autoimmune hepatitis. They overlap. When the liver tests are abnormal, it's academic which one is causing the problems. Now, my liver enzymes are amazingly normal--still taking meds though. At one particular point in this journey, the lupus was causing the hepatitis. Now all liver symptoms have melted into one treatment plan for medication.
In my late 20s I had Hashimoto's, thyroid burned out with radiation. Now I'm on thyroid replacement.
Hind site is 20/20 vision. All my ails since childhood came to a crisis from 2000-2003 when they all spelled multiple autoimmune disease.
I'm trying to say is that you can live with the symptoms until you get your new doctors set up. Contact a rheumy as soon as you arrive at your new location. Or, ask your rheumy of FP to help you get a referral to a new doctor at your new destination. Don't forget about your medical records.
Don't hesitate to go to an ER if you have severe symptoms and/or pain.
Try not to stress, it can make your symptoms worse. This can be frightening. All of us here can empathize. You got to hold on.
Oh, thanks for that! We will be in Murfreesboro. It's about 30 minutes from Nashville. We found a medical center in Murfreesboro that has all of the specialists I need with one group. I'm not allowed to drive right now and my wife takes off work to drive me to appointments. We needed somewhere close so she can drive me and then get back to work. Hopefully I'll be able to drive again soon. I've had a lot of dizziness, confusion, etc.
Blondie said:
If you are moving near Nashville Dr. John Sergant is awesome. He diagnosed me, and later I found out he is the best in the world. He is at Vanderbilt University.
I’m dealing with swelling right now. My face and hands. When Im in a lupus flare I get swollen and sore lymph nodes in my neck, armpis. I run a fever also. My liver enzymes have been elevated before but my Dr said I was taking too much acetaminphin. I was in a lot of pain and taking a lot of over the counter pain relievers.
I have severe SLE, relapsing polycondritus and homsistine disease with some liver involvement too.. my liver function, total protein and albumin are always abnormally low. As of 6 months ago I have a non alcoholic fatty liver even though I'm barely 100lbs and have no dietary issues . I've been suffering with extreme pain under my right rib and nausea so my rheumatologist sent me to a gastroenterologist that ordered an abdominal CT with contrast. So now they found a hypodensity on the head of my pancreas, liver enlargement and my gallbladder is full of sludge, stones and inflammation:/my rhuemy says my lupus is to blame for all of it except the pancreas that unfortunately is a whole other issue. Good news is there's lots of different liver supplements and cleanse out there and changes in diet can't be helpful too. Of course talk with you dr before trying anything but it might help:)
I have had liver involvement when I had multi organ serositis. The dr said I had it months before because I had pain over the liver and severe nausea. I survived on mainly liquids because food made me hurt and very nauseous. But it never showed up on any scan until the serositis was affecting pretty much all my major organs and I was in the hospital. Dr said it had to be very serious before it showed up. Since serositis affects the lining of organs there has to be a lot of inflammation for it to show. Serositis can also affect the organ if bad enough My CRP was almost 300. At the time I had no idea it could be so high! All that to say is yes it can affect the liver but it is hard to diagnose as lupus related.
My lymph nodes have swollen very large when sick or in flare...which clearly you are sick due to high liver enzymes etc.
I would suggest that you get all your medical records either online ...have doctor email them or copy all before the move. Your new doctors are going to want to look at them.
good luck on move and finding new doctors. i hope all works out well for you, sounds like you had some decent doctors so listen to them and hopefully they can still stay involved in helping your new doctors too.