Confused!!! Please please help: So I have been... - LUPUS UK

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Confused!!! Please please help

simit profile image
4 Replies

So I have been struggling with quite a lot of symptoms for a while (since I was 17, I am 19 right now). My family doctor did a routine blood work and found out I am deficient in vitamin d, somewhat anemic (runs in the family) and my lymphocytes are 4.4xe9/L. I did a course of vitamin d supplements since we thought that’s what’s causing the symptoms. But my doc recently booked me with a rheumatologist and ordered a full panel to rule out other conditions.

I am confused with my results, my symptoms haven’t completely been gone but I noticed I haven’t been feeling as much pain. Not sure if this is a “remission” or I’m okay?!

BUT, my lymphocytes count is still 4.3xe9/L yet my tsh, esr, rheumatoid factor, C-reactive protein are all in the normal range.

So what does the lymphocytes mean? is it high or normal? My report shows it’s high but these other tests are all normal?

Still waiting on vitamin d and ANA test.

Any help would be greatly appreciated as I am stilling having some symptoms but not to the extent as before.

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charlotte_g profile image
charlotte_g

Hi simit,

So sorry to hear you’re struggling. I’m recently diagnosed (now 18) but had fatigue, increasing joint pain and anaemia for a few years when I was diagnosed with SLE.   

Having a good vitamin D level should help because it is really important to the immune system function. (It is a hormone we make on our skin in the sunshine, not a vitamin at all, but it looked like a vitamin when it was named).  

I’m not a medic, but the fact that your ESR and CRP are normal looks like a good sign. They are markers of inflammation.  In autoimmune these markers can often be high.  Rheumatoid Factor is an antibody in Rheumatoid arthritis so it is good that that is normal too, presumably they ran other RA markers as well?  

What are your symptoms?  The ANA marker is a test to see if you make antibodies to your own tissue (ie autoimmune antibodies).  The full panel probably has more specific autoimmune antibody tests to see what specific auto antibodies you might have.  

Having normal TSH suggests that your thyroid is good, but there are other markers for thyroid (T3 and T4) which give a bigger picture on thyroid.  One of the symptoms of low thyroid function is fatigue.  

Your lymphocytes do seem a bit high which may be from an infection. They can stay high for a few months after an infection, but if they are always high, that would need further investigation.  

I would try not to worry. It is helpful to be having these tests so you can get the right treatment to help you feel better.  I am sure your rheumatologist will have further insight.  

Do please post updates on your ANA / other tests.

I’d love to know how you get on.

Take care. Charlotte

simit profile image
simit in reply to charlotte_g

Thank you for your insightful and detailed response!

I have been struggling with joint pain, fatigue and twitching all over my body and more. These symptoms have been on and off for a while now.

Still waiting on ANA panel but my vitamin d has improved! The thing about my lymphocytes is that it’s been the same for almost a year and a half, but we are unsure why...

Although I do feel weak at times and have quite severe joint pain, the fact that there are no key inflammation markers at the moment- I think I’m okay?

If you don’t mind me asking, when you were diagnosed did you have elevated C-reactive protein, esr, and rheumatoid factor? And were you in a flare?

For me, when I did have my bloodwork I was definitely much better than a few weeks before...

charlotte_g profile image
charlotte_g in reply to simit

No problem. Before my diagnosis I had high ESR, LDH (another inflammatory marker - shows cells are being damaged) normal CRP, normal lymphocytes, and negative RA.

I had increasing fatigue, joint pain and weakness (eg I couldn’t take the lid off a bottle) skin issues and digestive issues. It was just before the first uk lockdown so I didn’t have more tests for 4months but then they ran ANA panel and I had lots of antibodies with deteriorating anaemia (and red blood cell related) markers which turned out to be the beginning of a flare.

My form of lupus is blood related. Hopefully they’ll get to the bottom of your above range eosinophils.

It’s good you’re feeling ok at the moment and that they’re looking deeper.

Autoimmune can be hard to diagnose, so it’s good your dr wants to get to the bottom of it.

KayHimm profile image
KayHimm

simit -

Your GP could have noted other things of concern like swollen joints or enlarged lymph nodes on exam. He may suspect anemia of chronic disease which is common in autoimmune disease.

Probably best to wait for other test results to ask for interpretation from your doctor. You may have had a positive ANA in the past and he has been watching for new symptoms. As @charlotte_g said, these illnesses are hard to diagnose.

You have a good GP who is advocating for you.

Best of luck.

K

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