‘Antibodies sometimes present and others not therefore no treatment’

[RoseFlowerDew]

I wanted to ask a question regarding tests for antibodies, including outside the standard PA ones, for example thyroid, hughes, vasculitis, lupus……

Apparently, according to my GP, my various autoimmune antibodies are positive and sometimes not over these past few years.(I certainly struggle with various symptoms regardless if positive or negative.) However it seems that the negative tests even with my various symptoms rules out diseases (and therefore ways to manage symptoms). Now I am under the impression that once autoimmune antibodies are positive they don’t go negative and is part of the ‘memory’ of the immune system. In other words it’s the reason autoimmune diseases are incurable. But I’m being refused treatment because of negative autoimmune tests overruling previous positive tests at different places and times. I did try to explain that poorly managed PA affects fast turnover cells in the intestines, bone marrow etc. but it just drew a blank. For the longest time while waiting the mandatory 3 months between injections I would have a matching cycle delayed by a few weeks in terms of inflammation flares which I attribute to improvement in not only my health but strengthening my immune system and therefore auto immune symptoms.

Because I have more autoimmune antibodies than PA (which the NHS tries to overturn at every opportunity) I am trying to get help with the symptoms and I’m wondering what to do next when faced with the comment ‘Antibodies sometimes present and others not therefore no treatment’?

[palmier]

There is always a risk for "false negative" results. I googled false negative autoimmune antibodies and it's definitle possible to have an autoimmune disease despite a negative antibody test.

[Narwhal10]

Hi RoseFlowerDew,

The best thing you can do is collate your data.

So, on [date] you had a T3 of [number] mg/l with range

on [date] you had a TSH of [number] mg/l with range.

On [date] Anticardiolipin antibodies (aCL) of [number] mg/l with range.

On [date] Lupus anticoagulant (LA) of [number] mg/l with range.

On date] Anti-beta2-glycoprotein-1 (anti-B2GP1)of [number] mg/l with range.

(These are to test for Hughes syndrome - AntiPhospholipid Syndrome).

What treatment are you being denied ?

Your GP is just that a general practitioner, they are not an immunologist. The NHS offers free as cheaply as it can tests. So, the reliability of the tests may not be that great.

There’s a test which measures inflammation called a CRP but it does not measured interleukins. They are a far better but more expensive test. They are a super family of white cells. Shortened to IL and then you’ll get IL-1 to IL-40.

In science, there’s something called seronegative - a person has negative blood results but has all the symptoms.

The other problem is if I took your blood now to test. I get a report and it will only ever give me an idea of what was happening in your body at 20:42 on 26 October 2023. It tells me nothing of your symptoms.

Today, I got up at 7.05 a.m. felt fine, pottered around, waited for delivery of shopping. By 3.05 p.m, I had a sore throat, swollen glands and flushed face. I fell into bed at 5.16 p.m. as I felt a ‘wonky donkey’. Autoimmune diseases have triggers from over exertion, to temperature, to emotional stress, foods, chemicals, environmental such as bright lights and sounds. They are very complex.

If you are a member of the PA Society, ring and speak to them.

[FlipperTD]

Scientist, not medic.

Antibody titres [concentrations] rise and fall, like the tide coming in and going out. If you get a stimulus to a particular antigen, then your body should produce more antibodies, quickly, if you've been exposed to that antigen previously. If not, then the antigen will sensitise you, producing antibodies eventually. Nowadays, we're more aware of antibodies and vaccines, with our favourite Covid family of viruses, so there's more appreciation by Joe Public about what goes on.

Once the stimulus has gone, then your antibody titres will very likely fall and with the test in use, then it's possible that the level will be reduced to the background 'noise' level.

Of course, there is such a thing as a non-specific immune response too. If you are sensitised to one antigen, then you may well produce a broad spectrum response, producing other antibodies too. If, for example, you get bitten by a horse fly, then you'll probably get a non-specific response [like I do!]

Anyone who thinks that autoantibodies coming and going means you don't need treatment needs a severe talking-to, and a bit of re-education.

I hope you get sorted. Good luck.

[Narwhal10 in reply to FlipperTD]

I knew this would be your bag of tricks. 😊