ANA positive years ago

I think I might have asked this somewhere b4 but I can't remember where or what answer I got and I haven't the strength to search back through...

When I was first diagnosed with ITP 12 years ago, long b4 any of my symptoms started, the doctors tested my ANA the old way.

The result was 15 iu/ml.

I know this result is positive because the reference range is 0-7 but was just wondering how significant a positive if anyone knows?

13 Replies

  • Hi1985 mum

    That's a good ANA positive and means there's something wrong with your immune system without being specific for Lupus!. They come with different patterns denoting different immune illnesses so it's helpful if you know which yours was.

    Where are you at getting a diagnosis/ treatment at the moment?.

    Hope I've helped.

    Take CareX

  • Hello Misty. Thanks yes that is helpful. The pattern back then was speckled and it still is today. Today my ANA alternates between 1:80 and 1:160. When I got my old records released from the hospital I was at I discovered I had the 15 iu/ml positive and haven't been able to find out anywhere what kind of equivalent significance it has. Whether it's similar to the levels today or whether it's more like a 1:320 or higher in significance. I don't know if I'm explaining myself so you can understand...rambling a bit. Not a good day!

    So far I've got a tentative dx but he's unsure if it's lupus or sjogrens or something else. My next appt is in 4 weeks and I'll be using all the powers of my new years resolutions to make him give me some treatment's a bit hesitant. In the mean time he's put me on amitriptyline to see if it helps neuropathic symptoms (at least that is what he told me. He told the gp something different and that's another story that I wrote a post about a few weeks ago!!) but it has just exacerbated every single symptom I have and I feel absolutely rotten. I could stop taking it but I'm secretly hoping that it's making my levels of antibodies go up in the mean time so I've got some more substantial bloodwork to present to him at the end of Feb. 😉 I'm a schemer aren't I?

    I hope you're keeping ok...

  • Hi 1985 mum

    I'm sorry I can't answer your question what your ANA is equivalent to now!. It can fluctuate so much over time anyway. I'm sorry your Consultant is not sure about diagnosis and says one thing to you and something else to your GP!. I don't like that two- facedness which I'm sure you don't and it doesn't help your stress levels!. You could be like me and be UCTD which is a collection of the main connective tissue diseases while your body decides which to be!. I hope Amitriptyline helps, it's a good relaxant and helps sleep and pain. What dose are you on?. I missed your previous post as I've had computer connection problems. Your not a schemer, your pulling out all the stops for a much needed diagnosis and you don't want anything to jeopardise that!. It's only what I did!. Good luck for your Feb appointment, hope it goes well, I look forward to seeing how you get on. X

  • Thanks Misty. I will update everyone. The ami isn't helping and I've been taking it for 10 weeks so dying to be able to stop taking it! Fingers crossed he lets me try hydroxy next.

    The two-facedness really irks me but I've processed it to a point where I can't even be bothered mentioning it to him like I had planned. Too stressful.

  • Unfortunately, it is quite common for doctor's letters to be rather different from what YOU remember the consultation to have said! It helps to take someone with you to take notes and perhaps record the conversation on your phone?

    Reading between the lines - am I correct in thinking he told the GP he'd also given the amitryptiline to see if it would help with depressive mood aspects of the problems? That wasn't necessarily two-facedness - it DOES help many patients with autoimmune problems, depressive mood is a part of that, but many patients get very upset and defensive if they think they are being told it is "all in the mind" and even refuse to take it. It is used for both - but if it is purely depression then other things work much better.

    His apparent dilatoriness is probably because he doesn't yet know which direction your UCTD is pointing in - and the best drugs for each (or the least worst) are different. There is no point him giving you a drug and exposing you to the side effects if it is known it doesn't help what you have and if it may mask what he is looking for.

    I do hope you get some answers soon - I know how hard it can be, I waited 5 years. I know my GP thought "in the mind, it's her age" - and I told him so! Even the rheumy didn't really listen properly and tipped the wrong diagnosis.

  • The doctors conversation with me he told me the ami was for neuropathic pain syndrome. He took some time explaining this to me and even mentioned that ami used to be used for depression but not so much any more and he's never said anything to me about depression etc and it's not been a part of my issues at all. The letter to the gp said the ami was because some of my symptoms are due to depression and made no mention at all about the neuropathic pain syndrome. Go figure!

    The ami has exacerbated ALL of my symptoms so I'm hoping that in doing that it will have made any antibodies reach detectable levels so when I have my bloods done next week something more definite will show up. We'll see!

  • If it made my symptoms worse - I'd have stopped it long ago!!!!!

    And do ask him - even if it is in an email or letter. If you don't call them they will do it again.

  • I will see if I can work out how I can let him know that I know about it just in conversation at next appt. I'm a pacifist and I hate confrontations and that kind of thing plays havoc with my adrenalin!

  • Ask to be copied in to any letters to your GP in future as well - you are entitled to be.

  • That's a good idea. Keeps him honest too.

  • Exactly!

  • The colorectal surgeon I used to see early on in this journey used to dictate the letters for my gp while I was sitting in his room and clarify points with me as he went. I've since come to realise that doctors like that are worth their weight in gold!!

  • I know - even straight after the consultation they have confused patients. But so many patients object to their doctor "talking to the computer" without understanding why they are doing it.

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