ANAs - How well do you understand them?

[katidid]

Curious:

During your diagnosis and/or treatment process, how well have your doctors explained what antinuclear antibodies are, the subtypes and what should/shouldn't be showing up on your blood tests?

[CecilyParsley]

In ten years no Consultant or GP has ever explained it to me. What I know I have researched for myself.

[CecilyParsley]

I agree completely. The only time I ever had an insight into my bloods was when I requested that my GP refer me for a second opinion to St Thomas’s. She said look I will print your notes and you can write it yourself? Initially I was daunted but as I worked my way through my test results suddenly a picture emerged of someone whose bloods were abnormal and that certainly did not fit with the Fibromyalgia diagnosis. I carefully copied all the results plus the diagnoses thus far and emailed her the draft. She changed a few minor details and sent it. Hilariously when they saw me at the hospital the Rheumatologist said I must congratulate your GP, I rarely get such an in depth referral. Since that time I request my test results annually and go through them as my new GP often says my bloods are fine when the lab is highlighting issues. Last year she missed that my haemoglobin was very low as was my folic acid. I am now on ferrous sulphate and folic acid.

[CecilyParsley]

Very true, in my surgery now I cannot see my own GP. The new system means that when you ring to ask for an appointment you have to tell the receptions why you want it. A GP will then call you back and decide whether you need one. If they deem you do then you see that GP. No continuity, no double appointments given so the whole ten minute appointment is spent explaining who I am and why I am there. It is madness when my own GP knows it all. I am waiting for more bloods and urine now and another eye test to see if I should go back on the Hydroxychloroquine and on what dose. The GP actually asked me what dose I would like? I asked her was she saying I do have Lupus. Her response astounded me..she said I am sorry I don’t know very much about Lupus or whether you have it or not. It is not her fault. I blame the Rheumatologist . The problem is I am weary and despairing at the moment and not able to make a balanced decision.

[KayHimm]

I only remember my rheumatologist calling to say my ANA was positive in a « something » pattern.

It is a good question how much is helpful. For some people it may be very important if, for example their anti-DNA antibodies indicate a flare. Or maybe if a person had new symptoms and then new antibodies became positive it would be important to explain the correlation to the patient.

I think most doctors would interpret our immunologic tests if we asked. I never used to ask! If my doctor said my IGG had been high, I just nodded and accepted it as if he was telling me I had more grey hair. When I asked about in a new context, he was happy to tell me what it meant.

I think I understand my antibody profile and the implications pretty well now.

Will be interested to hear others’ responses.

Xk

[katidid]

I did they same - really pushed him to explain the positive Antihistone Antibody and the ranges. Now we do use it as a primary marker of disease activity. It’s not the most common marker (it’s almost always found in Lupus-like syndromes brought on by drugs), but he did say some research has shown that in some true Luupus populations occurrence can be up to 30%! Along with other tests, it’s now very helpful for me because it helps distinguish between a flare and other illnesses like a virus or other flare, such as those that happen with my Spondylitis.