ANA testing

[Beefull8]

Hi. My doctor routinely checks my antibody levels and it’s always above normal so I have a high ANA test. I have Graves disease so my endo doesn’t think it’s unusual but recently my ANA went up. It comes out homogeneous speckled and is normally 1:160 and now 1:320 which I guess is the next level up. Just wondering if anyone else’s ANAs have gone up and if they notice a pattern. I recently developed pain and tingling in one hand and foot so wondering if I am about to get another diagnosis or if it’s unrelated and just my thyroid acting up again. Thanks!

[jrbarnes]

I've had a handful of these tests and they always come back positive although one didn't flag because of the lab's set point. My speckled pattern came back specific to Lupus but the rheumatologist didn't think I had Lupus but who knows because my hypo was also never diagnosed until I had a golf ball sized adenoma. They don't think you have something until you're there lying in the surgery. Each ANA was higher or lower but never the same.

[Beefull8 in reply to jrbarnes]

Ack I feel you. Hate how the medical system

is lined up to help only when you already have something. I’d like to prevent something else from happening.

[jrbarnes in reply to Beefull8]

thus the medical term "preventative care"....preventative haha, more like prevent you from getting diagnosed or treated. I swear I didn't have this attitude before dealing with physicians for more than a decade!

[GreenTealSeal]

I don't have any answers but I developed subclinical hypothyroid at the beginning of this year.

My ANA's have consistently been speckled positive, ranging from 1:80-1:160 since 2020 and Dr's do nothing... I also now have impaired kidney function and other symptoms and am still fighting to get some healthcare...

[Beefull8 in reply to GreenTealSeal]

Have you got referred to a specialist? That sounds awful to leave you hanging like that. I feel like it’s no wonder I have anxiety. Keep waiting to the last ball to fall and I get another diagnosis.

[GreenTealSeal in reply to Beefull8]

GP said I needed to see a rheumatologist but rheumatologist doesn’t agree and thinks it isn’t relevant to see me so my referral was refused. I hope your experience is better, your ANA is higher so they should take it more seriously I would hope! Hoping to get a second opinion from another rheum.

[Beefull8 in reply to GreenTealSeal]

I hope you find another one! I’m on a list for a rheumatologist but could be up to a year before one comes available where I live.

[Maztee]

Sorry I've just seen this post. I had positive ANA and also anti-RO which gave me a diagnosis of sjogrens syndrome though I still feel my symptoms are thyroid related (I have no thyroid) not Sjogrens but by finding these markers they can blame Sjogrens for my feeling rubbish! No need for them to look at my T3 or to help further as I have an autoimmune condition!

[Beefull8 in reply to Maztee]

What are the symptoms of Sjogrens? I’m sorry you’re struggling. Any other doctors you could see for second opinion? It’s taken me years and I still don’t know why I don’t feel good most days. All my labs except this one is normal.

[Maztee in reply to Beefull8]

Hi Beefull8, NHS lists symptoms as dry eyes, dry mouth, joint pain but many people have a myriad of symptoms and not even dryness. If it becomes more advanced there can be lung involvement and other things. I'd accepted that I had this several years ago though I mainly had exhaustion and joint and muscle pains. I now think it's mostly thyroid again so trying to get all my vitamins and minerals levels optimal and also investigating hyperparathyroidism as I have high calcium now.So many conditions have overlapping symptoms that it is very difficult to tease them out and cfs and fibromyalgia often mentioned too instead of thorough investigation. I feel they found the antibodies when I was particularly low (I had vit D of 23 so it's not surprising) but you tend to accept what they diagnose and they don't look for anything else. I have realised for a while that suoemebts help but getting them right is tough and the Bvits, omegas and a variety of others are key but the levels can't all be measured. Obviously nutrients from food are best but when you feel low that's hard to do 😕 the worst but is trying to get gps tk listen and act onyour behalf but I hear so many people say that now I feel I have to do it myself. Not so bad now but can suddenly run out of energy for days if I do to much and ached and tingling fingers and toes. Rheumatologist says the tingling's not Sjogrens though so who knows?

[Beefull8 in reply to Maztee]

Health is such a long journey isn’t it. Sometimes I wonder if it’s to finally force us to listen to ourselves. I have exhaustion and pain in chest, neck and shoulders, hands and forarm and back pain. Sometimes knees. Maybe I have this too. How did you get the diagnosis? I think the good and bad is that they don’t know and we can find our own way. Even when doctors “know” they don’t know everything so we have to find our own tools, mental, physical and even spiritual to find our way sometimes.

[Torquaygirl in reply to Beefull8]

Ps it sounds like you do have Sjogrens. It takes about 7 yrs to get a diagnosis on average! Mine was about 10 yrs.

[Torquaygirl in reply to Beefull8]

I have Sjogrens diagnosed with positive ANA and ENA and neck ultrasound. If you have Sjogrens you should be under a rheumatologist. Gp can do bloods. My CRP is also on the high side . My mum had rheumatoid, it tends to run in families with history of inflammatory disease. There is a British support group for this online and a support group on FB. Not all rheumatologists are equal and some have little knowledge the disease. I recently saw one of the top Sjogrens experts in the country and she told me 30% of people with Sjogrens develop thyroid problems. Most commonly hypo, I am sub clinical hyper, but went into hospital with AF and drug I am on now for that puts me at high risk so have started low dose carbimazole till I see endocrinology next month.

Do gather lots of info on Sjogrens and talk to your gp. I have been lucky my gp knows more about Sjogrens than my old nhs rheumatologist! Luckily I have been able to change them.

[Beefull8 in reply to Torquaygirl]

What is ENA and what are they looking for in a neck ultrasound? Is it front of the neck or back? I thought I might have POTS because I can tired and short of breath upon standing sometimes and take lactoferrin to help with that.

[Torquaygirl in reply to Beefull8]

Hi ENA is a blood test for autoimmune disease. I had the neck scan because all my salivary glands swelled ( very common in Sjogrens). It was front of neck, they were able to see inflammation in the glands, in the USA neck ultrasound is used for diagnosis of Sjogrens. POTs is also common in Sjogrens. Have you done blood pressure sitting and then standing? I notice paramedics and hospital are doing this more now. I don’t have POTs.

Once my bloods come back positive my GP referred me to rheumatology for diagnosis.

[Torquaygirl in reply to Beefull8]

Here’s a link for what ENA is

southtees.nhs.uk/services/p...

[Beefull8 in reply to Torquaygirl]

Thank you! I’ve had ultrasounds on my neck annually to check my thyroid nodules. I also have dry eyes and mouth at night but I also limit water intake because i have GERD. I have muscle pain and numbness too but I have scoliosis and physical therapist said it’s from bad posture and nerve compression. I was referred to a rheumatologist but they said it can take a year before I get an appointment.