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Ana positive

Posted by brooke @bhoudeshell, 5 days ago

Hi everyone,
I tested low positive for ana with nuclear speckled pattern , positive ana ifa, high ch50, low c4c, low c1q, normal c3, prolonged ptt. Anyone have any ideas what this could be or the next steps I should take?

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carolinediehl | @carolinediehl | 2 days ago
In reply to @bhoudeshell "Yes but he won’t listen to me and my symptoms" + (show)
@bhoudeshell

Yes but he won’t listen to me and my symptoms

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If he truly isn't listening to you and your symptoms then obviously he shouldn't be your doctor. You should stand up for yourself (no one else will) and ask him why he isn't giving you more explanation or you WILL find another rheumatologist. Explain to him it is your body and you do want to take an active role in your care.

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BeccaG1015 | @beccag1015 | 2 days ago

My ANA came back positive at 395? I don't know what that means. Can anyone explain? I also have Fibromyalgia, Neuropathy, Pudendal Neuralgia, Chronic Pain Syndrome, Migraines, Hypothyroidism, Severe Protein Malnutrition, CKD, IBS, Arthritis, Ramsay Hunt Syndrome and I could go and on . . .

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1 reply
jeannef2025 | @jeannef2025 | 1 day ago
In reply to @beccag1015 "My ANA came back positive at 395? I don't know what that means. Can anyone explain?..." + (show)
@beccag1015

My ANA came back positive at 395? I don't know what that means. Can anyone explain? I also have Fibromyalgia, Neuropathy, Pudendal Neuralgia, Chronic Pain Syndrome, Migraines, Hypothyroidism, Severe Protein Malnutrition, CKD, IBS, Arthritis, Ramsay Hunt Syndrome and I could go and on . . .

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hmmm...was that just a regular ANA or ANA IFA? A regular ANA is usually something like 1:40 1:80 1:160 1:320 - with the 2nd number doubling each time. I've never seen one with a number like yours.

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jeannef2025 | @jeannef2025 | 1 day ago
In reply to @bhoudeshell "Okay I got an urgent appt with my rheumatologist tomorrow so I will see what he..." + (show)
@bhoudeshell

Okay I got an urgent appt with my rheumatologist tomorrow so I will see what he says. I will attach my ana ifa just says positive. My ana titer says 1:40 with a nuclear speckled pattern. I get a red rash on my cheeks and chest when I am in the sun/heat for even a second but it doesn’t go over the bridge of my nose. Cbc and cmp is pretty normal. Mildy anemic

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How did it go with your rheumatologist? Even if it doesn't go over your nose, that could be a Lupus rash.

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1 reply
brooke | @bhoudeshell | 1 day ago
In reply to @jeannef2025 "How did it go with your rheumatologist? Even if it doesn't go over your nose, that..." + (show)
@jeannef2025

How did it go with your rheumatologist? Even if it doesn't go over your nose, that could be a Lupus rash.

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Awful. He wouldnt rerun or do any tests. He said someone else will do them but they wont. They all send me to rheumatology. I got a rash from the sun on the walk into the building and he completely ignored it. I stood up for myself and asked to be retested/testing multiple times to the point of crying and he said the one and only test he did on me is the only answer. He did an avise test a year ago and it was low negative. Ridiculous. Things can change

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1 reply
brooke | @bhoudeshell | 23 hours ago
In reply to @jeannef2025 "(disclaimer: I am not a doctor or medical professional...I just research a lot) Lots of autoimmune..." + (show)
@jeannef2025

(disclaimer: I am not a doctor or medical professional...I just research a lot)

Lots of autoimmune diseases can cause some of those symptoms, and many AI are extremely difficult to dx. However, Lupus seems to be the one with most of your bloodwork and symptoms. Do you get a butterfly rash on your face?

What was your ANA #?
On the ANA IFA, did any of the listed antibodies show positive?
Have you had CBC, CMP bloodwork? How do those look?

If your current rheumatologist won't take you seriously, ask for a second opinion. As a comparison, in July 2021, when my liver numbers and ANA were only slightly elevated and I was having joint pain, my primary doctor immediately sent me to a rheumatologist and a hepatologist (liver specialist). Both ran a battery of blood tests. After a liver biopsy that Dec, I was dx with autoimmune hepatitis. In Jan 2024, after being tested and retested for 3 years, I was dx with Sjogren's, but only by a lip biopsy as I never developed antibodies. Over those years, I'd asked lots of questions, insisted on bloodwork (including an Early Sjogren's Panel, which my rheumy doesn't normally use, but which came back 3 of 6 positives), and basically made a pest of myself until I got answers.

You have to advocate for yourself and don't take no or I don't know for an answer.

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That is interesting they did a lip biopsy. I never heard of that. I had a blocked saliva gland that looked like a cyst when I was little. I don’t think they ever tested it for anything. I wonder if that would have shown anything

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1 reply
jeannef2025 | @jeannef2025 | 5 hours ago
In reply to @bhoudeshell "That is interesting they did a lip biopsy. I never heard of that. I had a..." + (show)
@bhoudeshell

That is interesting they did a lip biopsy. I never heard of that. I had a blocked saliva gland that looked like a cyst when I was little. I don’t think they ever tested it for anything. I wonder if that would have shown anything

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The cyst removal would not have shown Sjogren's. The lip biopsy takes a sample of the tiny ducts inside the lower lip. In a seronegative patient like me, it's one diagnostic tool. If your bloodwork indicates Sjogren's, there's no need for the lip biopsy.

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jeannef2025 | @jeannef2025 | 5 hours ago
In reply to @bhoudeshell "Awful. He wouldnt rerun or do any tests. He said someone else will do them but..." + (show)
@bhoudeshell

Awful. He wouldnt rerun or do any tests. He said someone else will do them but they wont. They all send me to rheumatology. I got a rash from the sun on the walk into the building and he completely ignored it. I stood up for myself and asked to be retested/testing multiple times to the point of crying and he said the one and only test he did on me is the only answer. He did an avise test a year ago and it was low negative. Ridiculous. Things can change

Jump to this post

I'm so sorry. Do you have a primary care doctor? If you do, perhaps speak to them and ask for help. If not, try to change doctors. Perhaps file a complaint with whatever health system this doctor is a part of.

And yes, just because a test was negative a year ago does not mean it can't change. My rheumy does regular testing on me checking to see if anything new has come up. Autoimmune diseases tend to run in packs - get one and another is likely to crop up.

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