Avise test results

[JennaShi]

Got these test results back and although my titre is now 1:320 homogeneous, I am borderline negative for Anti- DsDna. I will attach tue second page as it has more information.

My functional medicine doctor is ready to move on to another protocol but I’m not yet ready to move on. Is it worth further pursuing? Or am I too let it be until/ if something gets worse? All peoples seem to take not of is my thyroid antibodies, which are actually lower this time at 830 IU/mL (last test was >1000 IU/mL.

Not sure where to go from here as I have symptoms but no one knows why and I keep getting brushed aside as it not being important and or thyroid issues.

[Roarah]

Are the doctors addressing your thyroid? Do you have a endocrinologist? The thyroid is responsible for so many issues when not functioning properly. I love my functional doctor and see him in addition to my neurologist, cardiologist, hemotologist and reumotologist. I think my diet and exercise changes have help elevate many of my symptoms. I am waiting to start HCQ and warfarin until after my pfo closure meds are done. So my improvements are not due to lupus or APS treatments at all. Try the functional approach for now and get retested in a few months if things do not improve perhaps.

[JennaShi in reply to Roarah]

Hi, yes, all thyroid issues are being addressed. Thanks

[KayHimm]

JennaShi -

Did you have Grave’s disease? I am only asking because anti-thyroid antibodies are positive in that condition. It is an autoimmune disease. Maybe the doctors are not ignoring it as much as seeing it in the context of your thyroid disease.

Many of us have either hyperactive thyroid or Hashimotos.

That is good you got the Avise test. I wish I could help with it but it is very new and not familiar. Have you asked your rheumatologist for interpretation?

Good luck with getting clarity.

[JennaShi in reply to KayHimm]

Hi yes, I have had Graves disease since 2007. I agree with you, and feel that they attribute way too much to the thyroid issue and everything else is brushed off. I am now Hypothyroid as it burn itself off and have been taking thyroid medicine for along time/ have had high antibodies for a long time, even when my ANA was negative the first time it was tested.

Its ok, I appreciate your guys’ comments; i just get this comment alot and the other issues are usually blamed due to the thyroid (I apologize for repeating myself) but this is what happens often. I was tested a few months ago by a Rheumatologist but they felt that it wasn’t necessary to see me that that time. Giving them this test may not change anything either as I am still “negative.” I have had low platelets and wbc consistently but they are never terribly low (for a couple years now) but that too gets brushed aside. So I apologize if ai sounded rude, im just a little upset and sad).

It all seems to be common, it just seems unfortunate for some people who have been diagnosed with Hashimotos or Graves’ disease first. Do you know why they test these antibodies as well in the ANA? I have yet to find the reason in an article.

[KayHimm in reply to JennaShi]

You are not being rude at all. Sounds like you have really been struggling. I may be able to answer your question but it is just a guess since these diagnoses are very complex. You have had Graves’ disease so it makes sense you have auto-antibodies to the thyroid. My mom had Graves’ and I was diagnosed with thyroiditis many years ago when being worked up for autoimmune disease. They have tested me over the years as the thyroid went up and down for the antibodies. I do not think this gives any information about systemic autoimmune disease other than they often go together. In other words, it would not be used to diagnose the systemic autoimmune disease but a clue that there is a tendency toward autoimmunity. That would be different from if, for example, someone had fatigue but also inflammation in the lungs of kidneys.

When looking for systemic autoimmune disease, I do not think they do test for thyroid antibodies unless there is suspicion of thyroid disease, though it is on the Avise test. You might want to ask the significance of your positive ANA. Only a doctor can interpret the meaning of that “borderline” level. They are looking at a constellation of symptoms when they diagnose these diseases. This particular rheumatologist did not think you fit the category but you might want to get a second opinion. Unless they see clear signs of inflammatory disease, my sense is they rule out lupus and related diseases.

Hope that is helpful. I know it doesn’t solve the problem of your feeling unwell.

K

[JennaShi in reply to KayHimm]

Thank you, that makes sense how you explained it. My Endo claims my high ANA titre is due to my thyroid antibodies bit that wouldn’t make sense if it isn’t systemic? (This is why I asked).

And that is good that they checked you as well after your mother had Graves’ disease. I’m not sure I understand fully what thyroiditis is, is it where you are going between hypo and hyper? I just had my daughter tested for both TPO and TSI antibodies and think it would he good to get her tested every so often as well.

I do have another question, you mentioned borderline. The top is an ANA igG which says 20 positive (borderline) and below is the Hep 2 cells fluorescence and this titre is 1:320, why go off of the first? I did find a US government article claiming that the second is gold standard and will attach it below. I’m just not sure why this is being over looked as well.

ncbi.nlm.nih.gov/pmc/articl...

[KayHimm in reply to JennaShi]

Great questions but way out of my depth with the ANA. A rheumatologist is the best person to interpret. In answer to the ANA being positive with thyroid antibodies, I actually just read that is one cause of a positive when looking at systemic autoimmune disease.

Glad my explanation makes sense. But I have no medical training — just had lots of experience with diagnostic tests over the years. And I am old now!

I don’t know your symptoms but you need to report anything new to your doctor. These illnesses evolve over time.

One thing that is said frequently is that the ANA is only reliable if done when the doctor has clinical suspicion of lupus. Otherwise, it causes too many false positives because healthy people can have the antibodies too. Ask your doctors if they think your symptoms look like lupus. You need explanations.

[JennaShi in reply to KayHimm]

Thank you, I very much appreciate your help. And I will look into seeing if that rheumatologist will atleast answer some of my questions.

[KayHimm in reply to JennaShi]

In response to your question about testing me for the antibodies. They noticed the enlarged thyroid when I was having, like you, symptoms that were unclear and with the thyroiditis I remember it being low. They regularly checked the thyroid levels and when the TSH changed, I was sent to an endocrinologist. She ran all the antibody tests. The endocrinologist orders ultrasound of the thyroid and follows the thyroid levels. I think the best thing with your daughter is to alert the pediatrician to your family history.

[Wittycjt in reply to JennaShi]

@Jillymo maybe this?

[JennaShi in reply to KayHimm]

I agree with your last statement and have heard it from many doctors. It is still sad though that they wait for damage to be done and doesn’t make it any easier for the patient. I have to be honest it does frighten me a bit as my mom died of MS and it had been hard to see her in pain. As I see these things happening, I would like to be as preventative as I can; i guess those are some things we all would like.

[KayHimm in reply to JennaShi]

Yes, doctors worry about this too. I think they will be watching you closely with your family history and thyroid disease.

[MissusTee]

I've been anti DNA pos before, and then tested negative afterwards. You probably just need a retest in a few months time when borderline.

[JennaShi in reply to MissusTee]

Thank you for your reply. Did doctors claim it was something else or did they clearly assume and retest you?

[MissusTee in reply to JennaShi]

Well I'm anti sm pos now, along with about 5 or 6 others, I have multiple autoimmune problems inc scleroderma whilst lupus is watch and wait. Healthy people can test positive for these antibodies, which often disappear on repeat testing.

[Roarah]

My ANA was highly positive years ago but than went negative after a six month dose of steroids. It stayed negative for twenty years and than was 1:40 in October when I had a stroke and also had a case of shingles. It is now again negative. Sometimes ANA can be caused by things other than autoimmune disease. Infections, medications and cancer can cause changes. Positive ANAs are also frequently found in low numbers in healthy controls that is why dctors often do not focus on just one or low titre numbers. This is also why retesting is also important if your symptoms progress.

[KayHimm in reply to Roarah]

Yes, all those things in addition to maybe thyroid antibodies. No wonder they have to take the ANA in context!