So I’ve been back and forth from the doctors for the past few months trying to figure out what the hell if wrong with me, after having countless blood tests, I’ve been diagnosed with Hypothyroidism which is now being treated, but all my lupus tests came back negative so for now, all my symptoms are being put down to my under active thyroid.
I’m hoping it is just that, and that it’ll solve a lot of my problems, however I know how long it can take to get the dose of thyroixine right and how long it can take to properly kick in.
But although i hope it isn’t lupus, I just have this feeling you know? I know my own body and I have a feeling there’s something more there, I have every single common symptom of lupus.
I’m under a brilliant doctor at the moments, who assured me he’s going to do his best to get the bottom of whatever this is, but I was just wondering if anyone else has had negative blood results, but still been diognosed with lupus and their experiences from this.
I just need a little advice on what I should do next if my thryroxine doesn’t help.
Chlo x
Hi Chloe,
My blood tests have always come back normal. My rheumy won't even say the word "lupus" just "inflammatory arthritis", which is a generic term for autoimmune disease. But, like you, I know my own body and have many common symptoms of lupus. All I can say is if you trust that your dr. will do all in his power to find out whats going on, then great. If not, find one who will work with you. Getting an "official diagnosis" can be a long journey and you must be your own advocate. Keep a diary of symptoms and questions for your dr.
hope you find answers soon!
Hi Chloe,
Although I have mentioned this and I am quite certain everyone who's been on here for a while can tell you, NOT all of the answers are in the BLOOD. Approximately 1% of lupus patients are ANA negative. This means that 1% of the 3-5% of the population do not have the traditional markers. It's like looking for a needle in a needle stack. It also means that most doctors look no further if they consistently get negative ANA results and it sort of makes sense. The only reason I know is I am one of those ANA neg and my Rheumy not only studied at UCIrvine which is a huge lupus treatment center, but taught there as well and specializes in lupus. She also practiced at the Mayo Clinic and I am her only ANA neg patient.
I can't remember who, but one of the members posted a link to the difference between Lupus and Fibro and there are many similarities. It was just recently posted and was VERY informative. Many of us suffer overlapping conditions so this may be the case.
If you are having other symptoms, i.e. Malar rash, which is pretty exclusive to Lupus, I would definitely start having my doc look in my organ functions. It tends to go kidneys, lungs, heart, brain(CNS). If any of those are having unusual test results it could be hiding.
I am not a doctor, this is just personal experience and what I constantly bombard my doctors with questions about. Just naturally curious and feel like the more I know the more I can help myself. I must tell you I truly hope with every fiber of my being that it is not Lupus.
Feel better soon, and keep us posted on how that works out with your thyroid.
Hugs & Health,
DeAnne
Have you considered looking for a new rhemy? If you feel comfortable with yours, then start doing more research on your end and tell them what panels you want done. Discuss your concerns and try to be open as you can. I sure hope you are logging all of your symptoms and even try logging food, activities or lack of. The more you have the more you two can figure out. Don’t get discouraged! We are here for you and the pros like Anne can tell you that being upfront about your needs, concerns, symptoms, etc is what will help. Most people are uncomfortable about talking to a doctor. It’s hard to even say things to your closest of friends or family, let alone a stranger.
I would advise you not to give up. Sometimes, no often times we know our bodies better than anyone else…We are thankful for the fact that God has given doctors the ability to help with the physical part of healing…but they can be wrong and they can make mistakes. I also have hypothyroidism. And I am being treated for it. BUT I also had a feeling that there was something else going on. I also felt after much research that I too had lupus. That was in 2008 when I began my journey. Unfortunately many years later I finally got the answer I knew in my heart. I have lupus. Hypothyroidism often goes hand in hand with lupus. They are both autoimmune diseases. There are countless others that we can discuss at a later date. If you do have lupus you probably have some of the secondary diagnoses. Just don’t give up the fight. If you will not fight for yourself who else will. My PCP did not properly diagnose me my gyno doctor did. SHE recognized the mainly female symptoms and/or disease of lupus. Maybe you need to get a second or even a third opinion. PLEASE do not stop until you are satisfied. I still have bad days where my symptoms put me down for the day or even a few days, but I am soooo much better off now that I am being properly treated. Good luck and much love from our heavenly father. Keep in touch…
I’ve just switched doctors in the lat month because my last one was honestly, the most clueless and rubbish doctor I have ever come across, how he passed medical school is beyond me.
However the guy that’s treating me now is brilliant, he’s doing everything he can to help me and is reviewing me regularly.
I’m on 50g of levythyroxine (i think, don’t have it to hand!) but it’s only my second week on it so far so too soon to say if its effecting me really.
I’m looking into more research for fibro and hashi’s at the moment - there’s just so many factors to put in!
I’ve had a kidney function test and that came back fine, however I had a lot of problems with my kidneys last year and I’m still getting pain now so I’m going to talk to my doctor when I see him next about more tests because that is worrying me slightly!
Thank you for everyone’s advice and kind words, it’s so nice to have somewhere to just be open and talk to people who understand. My family and boyfriend are great but they don’t get most of what I’m feeling, understandably I think- how can you understand unless your going through it too?
Love to everyone x
Chloe,
You sound as frustrated as i was and i didnt give up.Once i found out i had Hashi's The Thyroid Meds Kicked in After About 3 weeks and im doing much better.
Having A doc Who cares and will go the extra mile for you will help you get the answers you so need.right now.
Hang In There...!
xoxoxo