Question re: ANA results

[Gingergrrl]

Hi @Dmitri it is interesting to me that so many of us have this exact ANA pattern of 1:160 speckled and that rheumy's are dismissing it b/c it does not match with further tests for known diseases like lupus, etc.

Forgive me if I am repeating myself (and did not go back and re-read this whole thread) but in my case the autoimmune issue seems so clear with Hashimoto's, two other autoantibodies (anti calcium channel and anti GAD65), autoimmune premature ovarian failure per my Endo, and now the positive ANA titer.

I also have POTS, MCAS, and severe breathing difficulties. Mainstream docs consider all of this "normal" or "false positives" and I've now given up on mainstream medicine but my doctors who think outside the box feel that everything I have is related and I will be starting IVIG as soon as they can schedule me, hopefully next week, and then I hope in a few months to try RTX.

I am so certain that I have a calcium channelopathy/autoimmune disease that just does not have a name yet to mainstream science. Am willing to experiment with these treatments hoping they will improve my breathing, MCAS, and dysautonomia.

Am hoping others do NOT give up and that I will eventually have something positive to report back here.

 

[Strawberry]

autoimmune premature ovarian failure per my Endo,

Can I ask what tests were performed to determine that? You can PM the response if it is too sensitive.

I have been sick for 20 years and mildly fatigued for 30 years, chemical sensitivities, numerous allergies, etc. But my downturn started after I had an ovarian cyst rupture about 4 or 5 years ago. An ND tested my hormones as he was certain the ovarian cyst rupture was the cause of my severe fatigue, but my hormones were at the level of someone far younger than I am.

If it was only hormone levels that proved ovarian failure with you, I guess I don't need any more information. Maybe both my ovaries really are fine, I just have always found it extremely suspicious that I went to the hospital for extreme pain and never recovered.

 

[Gingergrrl]

Can I ask what tests were performed to determine that? You can PM the response if it is too sensitive.

I can post it here and not worried about it being too sensitive but thanks for asking!

If it was only hormone levels that proved ovarian failure with you, I guess I don't need any more information.

It was based on hormone levels on several blood tests done by fertility specialists and my Endo. I also had a test that I think was called "antral follicle count" which showed the number of eggs produced each month was very low. I was told (at the time) that even with IVF or mini IVF, my chances of getting pregnant were at best about 5% so we did not proceed and also could not afford it financially.

I was around 41-42 yrs old when I had all this testing so I really do not know if I already had this problem in my 30's or if it developed later. I knew it is very difficult to get pregnant past age 40 (although many women of course do with no issues) but once I got sick, I did not pursue it any further. I believed at that time that I would get well (and that maybe we would adopt instead) and never dreamed the illness would progress to ending my career and requiring a wheelchair 24/7, etc. So I never could have taken care of a baby and it was not meant to be.

But the main issue is that at my last Endo appt (for my Hashimoto's thyroid monitoring), my Endo said that he considers my ovarian failure to be autoimmune b/c in my early 40's, my levels were like someone in their 50's. He was absolutely adamant it was from an autoimmune cause but he did not tell me if there was a specific auto-antibody behind it. He feels all my auto-antibodies from the Hashimoto's, to the recent positive ANA titer, the more rare calcium auto-antibodies and the MCAS are related and I agree but am not smart enough to explain how they are linked.

Hope this helps! Feel free to ask more via PM if you have other questions. Just wanted to add in case any of my prior posts are confusing where I mention my daughter, she is my step-daughter and not a biological daughter but I have raised her the last 4-5 yrs and use both terms interchangeably.

 

[kangaSue]

I had an ANA of 1:160 and speckled pattern. The physicians who reviewed it assured me that I don't have any autoimmune disease after the blood test results for specific ones came back negative. My symptomatology, as well as the fact that family members have Sjogren's, put me in a confusing position.

Autonomic
It can take up to ten years or more for Sjogren's to fully show itself. Autoimmune Autonomic Ganglionopathy has many similar symptoms to Sjogren's which can also be a slowly progressive chronic condition although this doesn't have chronic fatigue as one of the symptoms.

I gather that here in Australia, it's usual practice to do an ENA panel too with a positive ANA finding or also where there is a negative ANA finding but evidence of some form of chronic autonomic dysfunction happening such as GI dysmotility, cardiac regulation or sweat abnormalities. Is this not the case elsewhere in the world?

 

[Gingergrrl]

I gather that here in Australia, it's usual practice to do an ENA panel too with a positive ANA finding or also where there is a negative ANA finding but evidence of some form of chronic autonomic dysfunction happening such as GI dysmotility, cardiac regulation or sweat abnormalities. Is this not the case elsewhere in the world?

That is interesting, and I think you mentioned this to me before, but the rheumy I saw did not mention anything about an ENA test and did not want any further testing. My ANA of 1:160 speckled pattern to him was either a "false positive" or just didn't mean anything relevant in spite of all my auto-antibodies and Hashimoto's plus cardiac issue (POTS), irregular sweat on QSART, and my extreme dyspnea. He just wrote it off as completely meaningless and did not help me. Thankfully I have other docs who got IVIG approved for me but the rheumy was useless.

Do you think an ENA test could provide any valuable info in my case?

 

[Dmitri]

Autonomic
It can take up to ten years or more for Sjogren's to fully show itself. Autoimmune Autonomic Ganglionopathy has many similar symptoms to Sjogren's which can also be a slowly progressive chronic condition although this doesn't have chronic fatigue as one of the symptoms.

I gather that here in Australia, it's usual practice to do an ENA panel too with a positive ANA finding or also where there is a negative ANA finding but evidence of some form of chronic autonomic dysfunction happening such as GI dysmotility, cardiac regulation or sweat abnormalities. Is this not the case elsewhere in the world?

I've never come across any information regarding autoimmune autonomic ganglionopathy, but it sounds very relevant to what I'm going through, thanks for bringing it to my attention. I find it interesting that so many of those with POTS, besides us, report a supposedly coincidental positive ANA result.

http://forums.dinet.org/index.php?/topic/23233-how-many-have-a-low-positive-ana/

ENA is MCTD, lupus, and Sjögren's? This was ordered for me after the positive ANA, and the results turned out negative for me.

 

[Gingergrrl]

@Dmitri and @kangaSue Thanks for mentioning the ENA and I just sent an e-mail to the rheumy and asked him why I was not given an ENA test after my positive ANA and all my auto-antibodies and symptoms? (I asked politely of course LOL.) He asked me to keep in touch (even though he wouldn't authorize IVIG or treatment) so I decided to ask him this question. Am still curious about the MCTD even though I suspect I do not have it.

 

[Kati]

@Dmitri and @kangaSue Thanks for mentioning the ENA and I just sent an e-mail to the rheumy and asked him why I was not given an ENA test after my positive ANA and all my auto-antibodies and symptoms? (I asked politely of course LOL.) He asked me to keep in touch (even though he wouldn't authorize IVIG or treatment) so I decided to ask him this question. Am still curious about the MCTD even though I suspect I do not have it.

It was not automatically done for me for the longest time either, probably because it's expensive and I am not sure a family dr can order it, it needs to be done by a specialist (in Canada). It was done eventually last year in my case but still not bringing any more information to the table.

 

[kangaSue]

Do you think an ENA test could provide any valuable info in my case?

I had the ENA panel to check that it wasn't Scleroderma causing all the GI stuff stuff so I guess it would rule out that your severe shortness of breath is definitely not related to Scleroderma or other MCTD.

 

[kangaSue]

ENA is MCTD, lupus, and Sjögren's? This was ordered for me after the positive ANA, and the results turned out negative for me.

@Dmitri, How long have you had the positive ANA result for? I have come across it said by others on a number of occasions that they were eventually diagnosed with Sjogren's with eventually having a positive ENA as long as ten years later after having a positive ANA but negative on ENA initially at the time of finding the positive ANA.

 

[Dmitri]

@Dmitri, How long have you had the positive ANA result for? I have come across it said by others on a number of occasions that they were eventually diagnosed with Sjogren's with eventually having a positive ENA as long as ten years later after having a positive ANA but negative on ENA initially at the time of finding the positive ANA.

I was only tested for ANA once and that was a few months ago. Since my disorder has been nearly lifelong, I'd expect the positive ANA to have matched its duration. It should have been checked a long time ago, as it appears that "time heals all wounds" is the exact opposite of the reality here. The most I could do now is have it tested again to check for any fluctuation.

 

[Strawberry]

Very interesting how this conversation is going! I had to go through my old labs out of curiosity. My speckled ANA was 1:80. I can't remember the first time that I had a positive, but it was after the 3rd positive came back that my Dr sent me to the rheumatologist. Only to be told I had nothing she could care for me with... But I saw the rheumatologist in November of 2012. So probably at least 6 years that I have been +.

Thank you @Gingergrrl for the detailed response. I will have to re read this thread in a week, taking a few days vacation. Although I'm not looking forward to it anymore! So it will be extremely interesting to follow this thread. There must be something that "normal" doctors just miss with this.

I also have some homework to do, as I know what none of the acronyms mentioned here are.

 

[Strawberry]

Okay, I have another question on the ANA test. Below the ANA speckled 1:80 it shows this: Anti C Citrulli 164 H. It isn't clear so I am not positive what it says, but it definitely is tagged high. Does anyone know anything about that one? Or anyone else here with speckled pattern ANA have this also?

 

[Gingergrrl]

Thank you @Gingergrrl for the detailed response. I will have to re read this thread in a week, taking a few days vacation. Although I'm not looking forward to it anymore! So it will be extremely interesting to follow this thread. There must be something that "normal" doctors just miss with this.

No problem, am happy to help and hope you have a great vacation (or at least some time to relax)! Am sorry I have no idea what Anti C Citrulli 164H means and I was not tested for this one. I do agree that all of us with positive ANA's and weird antibodies that it means something but traditional medicine just does not know what.

 

[Gingergrrl]

I had the ENA panel to check that it wasn't Scleroderma causing all the GI stuff stuff so I guess it would rule out that your severe shortness of breath is definitely not related to Scleroderma or other MCTD.

@kangaSue Am pretty sure he tested me for something that ruled out scleroderma (and my general other symptoms don't seem to match with it) but I am still very curious about the MCTD or maybe some atypical form of it?

 

[kangaSue]

Okay, I have another question on the ANA test. Below the ANA speckled 1:80 it shows this: Anti C Citrulli 164 H. It isn't clear so I am not positive what it says, but it definitely is tagged high. Does anyone know anything about that one? Or anyone else here with speckled pattern ANA have this also?

Would that be testing for anti-citrullinated protein antibody, a common marker seen in rheumatoid arthritis?
https://en.wikipedia.org/wiki/Anti–citrullinated_protein_antibody

 

[kangaSue]

@kangaSue Am pretty sure he tested me for something that ruled out scleroderma (and my general other symptoms don't seem to match with it) but I am still very curious about the MCTD or maybe some atypical form of it?

In MCTD, 95-100% test positive to the anti-RNP Ab test (from the ENA panel)
https://labtestsonline.org/understanding/analytes/ena-panel/tab/test

 

[Gingergrrl]

In MCTD, 95-100% test positive to the anti-RNP Ab test (from the ENA panel)
https://labtestsonline.org/understanding/analytes/ena-panel/tab/test

Am wondering now if I had some of these tests but was not told it was an ENA panel? Need to go back and check.

 

[kangaSue]

Am wondering now if I had some of these tests but was not told it was an ENA panel? Need to go back and check.

Yes, it gets very confusing because some test reports are often not concise enough to state exact test done or the test has another name.

 

[Strawberry]

Would that be testing for anti-citrullinated protein antibody, a common marker seen in rheumatoid arthritis?
https://en.wikipedia.org/wiki/Anti–citrullinated_protein_antibody

Yes, but the rheumatologist said I don't have rheumatoid arthritis. I don't think I do either, as the only joint pain I get is in my hands and its minimal.

Just checked the results again, and although unclear due to blurry scan and a line on the original paper, it definitely appears to be 161 or 164. Anything greater than 59 is considered "strong positive." I don't understand how I can have that high of a number and not have RA.