Brand new and still dont understand the results..... - LUPUS UK

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Brand new and still dont understand the results..help?

Sarahsmile profile image
8 Replies

Upon a recent blood test, due to achy joints sore muscles extreme exhaustion breathlessness and unexplained fevers. The dr discovered ANA. 1:320, he referred me to a Rheumatologist at one of the best hospitals here in Michigan. With the referral he had mentioned the possibility of Lupus or RA. I was scheduled and in within the month (actually closer to 3weeks). They did all the testing for Lupus, i will share my results. According to the Rheumi, everything came back normal except for the ANA again which came out this time as 1:1280. And the Anti Ds DNA was not explained as I thought any anti ds dna found would be positive but mine was not written as neg or pos? <12.3 was the number. Anyone know anything about this or have any suggestions? She said no signs of Lupus and wants me to come back in a year. I feel like crap for a reason, my ANA is high for a reason and yet, feels like its brushed under the rug for another year! 8/31/2017 15:52 Westergren RBC Sed Rate: 11

Creatinine: 0.69

EGFR, Black: >60

EGFR, Non-Black: >60

C-Reactive Protein: <0.2

ANA by IFA, HEp-2 Substrate: Positive (A)

NAB Titer: 1:1280 (A)

NAB Pattern: Homogeneous (A)

Anti-Sm: Negative

Anti-RNP: Negative

Anti-SmRNP: Negative

Anti-SSa/Anti-Ro: Negative

Anti-SSb/Anti-La: Negative

Anti-DsDNA Antibody: <12.3

C3 Complement: 103

C4 Complement: 23

Cyclic Citrullinated Peptide Ab: <5

Color, Urine: Normal

Appearance, Urine: Normal

Specific Gravity, Urine: 1.010

pH, Urine: 7.0

Leukocyte Esterase, Urine: Negative

Nitrite, Urine: Negative

Protein, Urine: Negative

Glucose, Urine: Normal

Ketones, Urine: Negative

Urobilinogen, Urine: Normal

Bilirubin, Urine: Negative

Blood, Urine: Negative

Creatinine, Urine: 62.09

Protein Urine Random: 3.0

Protein/Creat Urine Ratio: 0.05

I am new to all of this. My world has been turned upside down in just a month as a 36 yr old mother of four. I just want answers and dont seem to be getting them even in one of the best hospitals in the state!

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Sarahsmile
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8 Replies
whisperit profile image
whisperit

Hello Sarahsmile,

Good to see all those "negative"s in your test results - but it does make it frustrating when you still have such troublesome symptoms.

Have you seen the LupusUK leaflet on "Symptoms and Diagnosis"? It's on the right of the "Home" page or - I hope! - here lupusuk.org.uk/wp-content/u...

As you will see, the positive ANA does suggest you have something going on with your immune system; it's often a sign of an auto-immune problem, but not always. The anti dsDNA result number gives you a measure of how many lupus-specific marker antibodies you have. Whether it counts as "positive" or not depends on the particular brand of test the laboratory is using - often your results print-out will have a "range" number printed alongside your result, which gives the numbers that would be considered as normal for that particular test.

Blood results are complex, and there are lots of odd variations of auto-immune disorders, so that a whole variety of results are possible. Just because you don't meet the specific diagnostic criteria for lupus does not mean that you have nothing! For example, one of my first results was positive ANA at 1:1280 and negative ds-DNA at 9.5 (normal range 0-20). So that's like yours. But I also had positive anti-ENA and positive anti-Rho. I was provisionally diagnosed with Sjogren's Syndrome, and soon after this was changed to Undifferentiated Connective Tissue Disease. The exact term is often not hugely important, as the treatments are often the same, at least at first.

I guess that for you, the important thing is to get a clear explanation for your symptoms and a clear management plan. The next time you see your family doctor don't leave until you get those things! :)

Good luck - and keep us posted ! x

Sarahsmile profile image
Sarahsmile

Thank you so much for your reply, whisperit! I will definitely look into "Symptoms and Diagnosis" I know that dx ing Lupus is not an easy task from what I have heard as it can imitate many things. And although it was quite relieveing to see all the negatives on my tests, I still didnt understand the meaning of them all especially when my ANA is so high. Which I will absoloutely demand explanation for when I see my dr again. The ds dna did not have a reference range to compare to either, thats why it threw me off. I received all of my results online with no explanation to go with it. No call from the Rheumi that ordered them either. I called and asked to have my call returned and still nothing 3 days later. Thank you for everything and I will keep all posted! I have a feeling this is going to be a long journey! 😕

soootired profile image
soootired

You've had a very good reply from whisperit, the road to diagnosis can be long and frustrating. You sound as though you have "something" going on, with positive ana to prove it. I wouldn't be happy with not being seen again for a year, could this be brought forward, or could you seek a second opinion?

In the meantime, do plenty of research, keep a symptom diary and take photos if relevant. This site is a font of knowledge and experience and you can search various subjects/symptoms on here to become more familiar too.

I hope you find answers soon, and it doesn't take too long - You're a busy mum and I know what that's like!

Let us know how you get on.

Take care x

Sarahsmile profile image
Sarahsmile in reply to soootired

Thank you for your response soootired! I am going to make an appointment with my PCP and go over the test results and see where that takes me. The ANA of 1:320 in the beginning alarmed him so thats why he referred me to the Rheumi in the first place. Maybe this time the higher ANA will cause him to want a second opinion. Its hard here in Michigan to find good care that is willing to go above and beyond for their patients. Especially those on state insurance. In order to see a specialist of any kind, a referral is need from your PCP. I am determined to find answers though, even if I have to go out of state. My little ones deserve to have more than what I have been lately, which is a ball of stress, depression and aches. Our bodies have a special way of telling us something is just not right and when you turn to someone specialized in that area and they tell you, "hey, i dont see anything serious, except that high ANA...maybe just come back in a year!" Its pretty irritating and gives you a feeling of being lost in the darkness with no sense of direction. Thank you again for your response. Im glad I found this little community with such great people that understand what it is that Im going through and are so helpful! You guys rock!

misty14 profile image
misty14

Hi sarahsmile

You've had two great replies from Whisperit and sootired. All I can add is I wonder why your anti dsdna reading came back neither positive or negative?. This needs investigating as sometimes laboratories don't do it by mistake or can't do it for a reason. As your ANA is high and your symptomatic then this needs chasing as there's something going on with your immune system!. If you develop further symptoms then you should be seen sooner than a year by your rheumi so could try and bring it forward. Your health needs monitoring and these illnesses can change fast!.

Good luck , keep us posted how you get on. X

johare profile image
johare

Welcome, You've had some good replies, Its always difficult at the start to make sense of the blood tests. Its good to see that they have been so thorough. If you are asking what is what then; from specific gravity down are kidney tests and bilirubin is for structures concerning the liver. C3 and C4 are proteins that are low when a healthy person is fighting infection but in a Lupus person is low all the time. ( But these can change). EGFR is the filtration rate of your kidneys.

As has been said, although happily a lot of these tests have come back within normal range your symptoms still show an issue. Many of us with any autoimmune condition seem to have symptoms before blood test reveal a picture. Whatever name your condition is given, you are feeling the same. Try to concentrate on what you can do. Keep a diary of symptoms and how you feel. What you've eaten or done that day. Take rest and exercise. Most of all don't worry, it seems you are in good hands.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Sarahsmile ,

I'm sorry to hear that you are struggling to get somewhere with answers for your symptoms and a treatment plan. I'm afraid that we are not medically trained so we cannot comment on your results, but if you are unsatisfied with the diagnosis/treatment plan from this consultant then it may be worth seeking a second opinion. Perhaps try to see a rheumatologist with a specialist interest in lupus. The Michigan Lupus Foundation may be able to recommend someone in your area - milupus.org/

If you need more information about lupus and how it is diagnosed, we have our full range of publications available to read and download at lupusuk.org.uk/publications/

Sarahsmile profile image
Sarahsmile

Thank you, Paul. I finally spoke to the Rheumi and demanded answers. She consulted with her attending MD and they are requiring more in depth testing. Although nothing is pointing directly to Lupus, the high ANA has to account for something. Hopefully, with further testing, some answers may finally show!

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