Possible Lupus?

[Femme1]

I've recently had a panel of bloods including FBC, Auto Immune panels, Thyroid ( I have thyroid disease) and others following a GP visit about multiple mouth sores and ulcers. The Nurse practitioner said this seemed auto immune to her, and possible celiac too. Anyway bloods came back, and the auto immune test results were marked as 'satisfactory' apart from the smooth muscle auto antibody, which will be re tested in six weeks. However, on closer inspection I saw that the Nuclear Autoantibody result was positive. Reading anti nuclear factor level positive IgG 1:160 and then Serum ANA homogeneous and speckled pattern.

I then undertook some reading, and maybe worried myself unnecessarily, but Lupus was a repeated possibility in terms of this result.

I have a cousin with lupus, and I also suffer with some of the key signs/ symptoms: sun allergy since puberty - wherever it touches uncovered skin for more than a few minutes an intensely itchy rash appears an hour or so later. This doesn't improve through the summer like some people's, it's a constant allergy. I have chronic headaches and migraines , worsened last few years which could be peri menopause, bad fatigue, but this could be thyroid linked. I have not got the classic butterfly rash.

Anyway, I have no real idea, but feel I should be asking for more specific tests to rule this out, especially with the liver/ smooth muscle result. Any advice?

Thank you for reading this small essay. 🙂

[CatShe]

Hello and sorry to hear everything that you are going through. Based on your story I would say go back to your doctor. I don’t want to be a scare monger but my lupus was dormant for years and the same thing happened with my blood tests and my doctor dismissed this. If you go back to your doctor and push for another few tests based around auto immune conditions. Also it’s worth knowing that they think that there are genetic factors with autoimmune conditions. So if there are autoimmune diseases in your family that is relevant medical history.

[Femme1 in reply to CatShe]

Hi CatShe. Thanks for the reply. Yesterday morning I woke up with a really sore mouth ( and worries) so bit the bullet and called the surgery, amazingly I got an appointment for that day. I say down with the nurse practitioner and she checked my mouth and admitted a bit of confusion re what was causing this, saying she thought it was definitely something auto immune. I raised the issue about the ANA blood test and she had a look at that and said 'oh yes' like she'd not realised or noticed. I discussed my cousin with Lupus and the heavy thyroid disease in the family and my sun allergy and illness response then said 'theres no way this could be lupus though is there?' she said it was really rare and that my mouth could be caused by leukoplakia, but she then looked up lupus and leukoplakia and said there were links, amd also with smooth muscle antibodies. She went to speak with a doctor at this point and came back saying she'd been told to refer me to rheumatology. Half of me is relieved in terms of getting this checked more thoroughly, the other half worried. But it's always better to know. The more I'm reading, the more it seems to be likely in terms of my medical history. She did say at the end that this could explain the thyroid issues ( they wouldn't treat me as my TSH never got above 2.6 so I had to go private)

Would you say that your health has improved in terms of symptom reduction since being diagnosed/ treated?

Thank you again for taking the time to reply.

[FandNnan in reply to Femme1]

I was diagnosed first with underactive thyroid in my early thirties and then with lupus roughly 2 years later. Symptoms were sore mouth, throat, split corners of mouth, sinus problems, blocked ears .... all in that same area.

I still get these symptoms occasionally, alongside more serious ones, and know I have a few months of flare coming that the medication I take is not able to control.

I have a sister who had mild lupus symptoms alongside COPD and an aunt many years ago treated for overactive thyroid. My opinion - lupus is definitely a genetic condition and runs in families. As does the thyroid problems.

If you've looked through these pages before you'll find lots of info and fellow lupies who will encourage you to ask every question you can think of and sometimes be ready to fight for yourself. Take care.

[Femme1 in reply to FandNnan]

Hi FandNnan, thank you for replying. I tried to respond last night but couldn't seem to get on the site. Your mouth and ear issues sound a lot like mine.

I've just booked a private appointment with a rheumatologist to speed things up as our area has a minimum 20 week waiting list for access to first consultation. I can't afford ongoing private care, but thought this might get me started.

I hope you're not feeling too bad right now.

[FandNnan in reply to Femme1]

👍🏻 Update us along the way, we'd be interested to hear what happens 😊

[StriatedCaracara]

I had a strong ANA and lots of symptoms.

I was diagnosed with UCTD rather than Lupus as specific bloods for Lupus re: 2019 SLE Classification criteria were negative. However, it was noted that I was on the Lupus Spectrum - presentation just a bit different, treatment the same.

Treatment was needed to stop symptoms and prevent organ damage.

Taking hydroxychloroquine was a game changer. This post has links to videos about this.

healthunlocked.com/lupusuk/...

Hope this helps

[Femme1 in reply to StriatedCaracara]

Hi Striated CaracaraThat's really interesting, I didn't even realise there was a spectrum. I have read about hydroxy chloroquine but always doubt that things will work that well ( after years of feeling dire) this gives me hope should this be the case! Thanks 🙂