I’m a 32 yr old female, I have quite a complex medical history including Hashimoto's disease, Gilbert’s syndrome, multiple fibroadenomas, PCOS, Pelvic Compression Syndrome, possible MPD (still testing), Raynauds Syndrome, Scoliosis, Drug induced Long QT Syndrome, Hepatomegaly, Ganglion Cyst in wrist, Dermoid Ovarian Cyst, Scoliosis, Depression & Anxiety.
I started seeing a rheumatologist back in 2016/17 and my ANA was 1:640. Then a few months later my ANA was tested again and it was 1:80. I was diagnosed with Undifferentiated Connective Disorder. My main symptoms are weight loss, gastric issues (occasional loose stools, heartburn) some difficultly swallowing, dry mouth, bone and joint pain, stiffness, migraines, fatigue, sleeping issues, dry skin, nose and mouth ulcers. My symptoms definitely flare up during my menstrual cycles. Recently had an X-ray on my hands as one of my main symptoms is pain in my fingers, and one of my hands looks slightly swollen (including fingers looking like they are twisting sideways?) but the X-ray apparently came back normal. I don’t know if it’s related but I also recently found out I have some irregular pleural scarring in left dorsal lung base.
I was put on hydroxocholorquine for a while which helped but unfortunately it caused my livers ALT levels to rise to abnormal levels so I had to stop it.
Family history includes quite a bit of autoimmune, including my dad, cousin and aunt all have Hashimotos too, my nan had multiple autoimmune conditions but I’m not sure what they were, and my mum has two cousins with Lupus.
My issue is as I think a lot find, I’m really struggling to get any rheumatologists to listen whilst my ANA is at 1:80 (tested recently) and the rest of my bloods are okay. They keep saying ANA doesn’t change but obviously it does? I went to see a rheumatologist last month after 2 years waiting list (plus 2 extra years of covid stopping me seeing my previous one) and they didn’t have my old notes for the appointment (this was first appointment at new hospital) and I felt very dismissed. I’ve been debating about seeing someone private just to be able to talk everything through in detail and see if it’s worth pursuing the NHS more but I can only afford one consultation so I want to make sure it’s worth it.
I’d basically like to understand that despite my ANA currently being 1:80, what does it mean that my ANA was 1:640 previously? Does this mean there is definitely an autoimmune condition there but it’s early days or that it’s gone quiet? Or does it not mean anything? Should I be monitoring for something? As I have multiple conditions it can be hard to pinpoint symptoms to each disease but I just feel everything is screaming autoimmune to me. Am I on the right track in pursuing this?
Any help would be greatly appreciated, thank you very much!
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Chaucer89
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You are like many autoimmune patients that are just getting started with their diagnosis and trying to get the proper treatments. It is hard to get all the doctors on the same page. For that reason, I suggest that you START today a MEDICAL RECORDS NOTEBOOK that has all the RECAPS so you are NOT RELYING on the Drs to have your Medical Records - BE PREPARED / BE PROACTIVE / Take Charge of your Medical Care
Sections:
1- From "each" of your "Dr Visits"
2 - "Each" Hospital Visits
3- List of all Medications
4- "LAB WORK" printed out to review from previous Doctors & Current Dr for reference
4- Copies of any X-Rays, MRI's, or other tests that are performed
(before you leave any facility ALWAYS ask for a COPY/CD/etc of each TEST
5- "DAILY Symptom Sheet" updated to refer to showing your fluctuations in Rashes, Joint Pain, Mouth Sores, Gastro Issues, Memory Issues, etc since your last Dr Visits to SHOW to your Dr
6- LIST of QUESTIONS prior to each DR VISIT:
(List Include:
Your New SYMPTOMS or any that are worse, Medications, Next Steps to take and WHAT other Specialists that you may need to see for more specific HELP with New Symptoms not treated by for ex: your Rheumatologist ( ex: - breathing issues see a Pulmonologist, -heart symptoms see a Cardiologist, etc. ), Any New Medications prescribed ASK "why" needed and precise directions, any other questions you have or problems (some things you may not even know are related, but important to share with your dr.)
"Do you have rashes on your skin that does not go away easily?
Do they aggravate when your skin sees Sun?
Do you feel very weak these days? Do you have fever with no known cause?
Preparation is the key for the right diagnosis and to get the most out of your health care provider. On the other hand, it will also help you to alleviate anxiety that you may be facing about your doctor’s appointment."
NEXT - ANA titers do CHANGE, but it has no bearing on your diagnosis.
"Most people" with lupus have a positive ANA - but, so do people w/out autoimmune diseases. "Thus, it is not useful to follow the ANA test in someone already diagnosed with lupus."
Lastly, The Lupus Encyclopedia is a great RESOURCE for all the parts of the body that LUPUS can affect. It is written by Dr. Donald Thomas.
Wishing you well on your JOURNEY as you become more proactive and not rely on the Doctors to have all the information, sometimes we have to bring ideas to them that others with multiple autoimmune diseases have tried as we stay on top of our day to day issues of living with Autoimmune Diseases.
Thank you for this, I’ve been keeping a copy of all my medical records since I was a child so definitely on top of that! I’ve just requested all my latest notes including copies of scans from the hospital. I will start keeping a detailed log of symptoms too. I always go to any new appointment with a print out of my health conditions, symptoms, medication, family history and what questions I want to ask. Hasn’t got me very far in rheumatology but I was expecting push back unfortunately from what I’ve read of others experiences.
It’s frustrating that ANA seemingly means very little in the grand scheme of things but it makes all the difference in getting someone to listen.
I understand that the doctors can give us the run around, until they can lock in on a symptoms that they can't deny. With your symptoms Records, that will help a lot for them to see how often & the pain level for each on each day of the areas that that you have including the mouth ulcers, etc. I wish you the best, but sometimes we have to change doctors to get to the root of the issues we are facing. I am not sure if that is possible, but that is definitely the route I would be looking at at this point for you.
Keep plugging away and take care of yourself......
And in your Notebook -
Create a Written Sheet with your family members and each of their autoimmune disorders. You are correct, it runs in families and can come out in various ways in each person.
Lastly, lowering STRESS is a big factor for us. Take time to REST - don't let your body get to the point it is screaming at you to rest.
A lot of friends have to go to RESEARCH HOSPITALS to get the answers that they are looking for......
The local Doctor networks aren't going to research as much.
So, that is an option if you can get an appointment at the University Rheumatologist Office or Endocrinologist, etc.
I'm not going to attempt a diagnosis, but it is worth noting that ANA results are not definitive, and may may following treatment that affects ANA production (a statement of the obvious, really, but still...). Perhaps it would help to have a read of this? hss.edu/conditions_does-ana...
It sounds like you've had a long and difficult journey. take courage, and don't give up x
Thank you very much, the only treatment I’ve had autoimmune related was trying hydroxocholorquine for about a year, but I believe my ana had already lowered to 1:80 before I started that. I’ve decided to keep going with trying to get clear answers and will pay to go private for that if needed. I dislike the unknown limbo feeling I have at the moment.
Excellent reference. Read many analyses over the years and this one is unequivocally the best. Thx. I hope this clarifies for many people. The big take away at the end is exactly my own experience: a long list of clinical symptoms can not be ignored AND need treatment🙏🏻
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