Test results show no inflammation

[scool]

I posted here 4 months ago and got my blood tested by the GP. There are no inflammatory markers in my blood, but I have a constant sore throat and dry eyes which are also beginning to suffer with high pressure. I am paying privately to have my eyes checked out by a specialist, but I just wanted to check if a rheumatologist would still be interested in seeing me if I have no inflammatory markers?

My blood tests did show that my T4 levels were quite low [although TSH looks reasonable] so I have asked my GP to increase my levothyroxine dosage as I am only on 50mg at the moment.

I mentioned in my previous post that my father has lupus and I seem to have many of the symptoms [but not any really bad skin issues].

I can provide a copy of my blood test results if that helps you to answer me more fully.

[BonnyB]

I posted the other day, if you have a look it might help you as I had issues with throat and was diagnosed with sjogrens. X

[MusicalFurbaby]

It might still be worth seeing a rheumy, as they often run repeat bloodwork. It’s common for inflammatory markers to not show up in bloods, at least, not all the time, so doctors seldom believe one set of blood results in isolation. Often a rheumy will repeat the bloodwork several times over a period of months or even years before they make a decision about diagnosis. You clearly have symptoms, regardless of what your bloodwork currently says, so it’s worth asking the questions. Good luck, let us know how you get on!

[scool in reply to MusicalFurbaby]

Thank you for your guidance. It's great to have people who understand the issues properly to talk to.

[scool]

Thanks both!

[Kayq1]

I don't think blood test results are reliable with lupus. Someone could be in pain and have inflammation, and it may not show unless it is really bad. That's why it took so long for me to get my diagnosis which is frustrating. I hope you can get a rheumatologist to see you. Maybe Hydroxychloroquine will help, or steroids

[scool in reply to Kayq1]

I am going to have to go privately as my inflammatory markers are not raised. I think I will try the guy in London that everyone has so helpfully mentioned here.

[bathouse]

Hi

I have never shown inflammation in my bloods, that’s over years!

I had 90% of my thyroid removed, had every symptom of hypothyroidism but left untreated as TSH normal!!!!!!

Don’t rely on bloods alone

I have APS , finally diagnosed after 6 years of negative bloods the anticardiolipin antibodies raised on 2 separate occasions 12 weeks apart, I had told drs for years I had APS but no one listened, I had a perm baby, 4 miscarriages, ocular migraines, MS symptoms, brain fog, fatigue etc.

I’m under Moorfields for extremely dry eyes, bloods for Sjogrens negative! I have puntal plugs and have to have immunosuppressant eye drops every night and put blood in my eyes for lubrication, yes, it works better than eye drops. My corneas were scratched as so dry, eyes ached and felt like I had something in them

I got worse after my first (and last!!!!!) COVID jab, sacroilitis, extreme fatigue, joint pain etc, steroids helped. I then developed a reaction when out I the sun PMLE , saw amazing dermatologist at Guys and St Thomas who diagnosed Lupus Photosensitivity.

My bloods for lupus have always been negative!!!

I see a private Rheumatologist at London Bridge Hospital, Dr Arvind Kaul who has helped me so much, listening to me/my symptoms and not going on blood tests alone

I’m awaiting an NHS rheumatologist appointment as I can not get biologics privately, I’m suffering badly with sacroilitis and need some relief

I had to see a private endocrinologist to get thyroxine as TSH normal and borderline hypothyroid!

It’s such a battle, you feel like you are going mad with all these symptoms and no one listening , except my 2 private Drs and the wonderful dermatologist. I’ve seen so many drs who gas lighted me

Hope this helps

X

[scool in reply to bathouse]

Hi, Thanks for telling me your story. I get a very bad lower back and had an Xray which showed curvature of the spine. But everything is put down to wear and tear as I am now over 60 [even though I've had the bad back for years]. My skin is weird as I have very sore spots in my hair and my hair is thinning, but I haven't mentioned that to the GP as I feel like a hypochondriac, My skin is also very dry and painful even to stand under the water in the shower, Is that normal?

[scool in reply to bathouse]

That really helps. Thank you.

[StriatedCaracara]

Not everyone has raised inflammatory markers. There is a discussion and paper here.

Doctors should know this but unfortunately their textbooks imply it is a definate test.

The science is not understand well enough to make this assumption.

Many of us find this a battle. Even when our own doctors know the situation for us, new ones who then see us don't.

healthunlocked.com/lupusuk/....

[scool in reply to StriatedCaracara]

Thank you, I will go away and read the studies. I always feel like such a hypochondriac, but have loads of niggling issues.

[StriatedCaracara]

A paper suggesting other possible markers:

healthunlocked.com/lupusuk/...

[marypw]

I’ve never had raised CRP or ESR, nor the classic malar rash.

At various times, I’ve had +ve dsDNA and ANA and reduced complement levels, which with other symptoms like inflammatory arthritis on ultrasound, led to a diagnosis of SLE.

ESR and CRP are not definitive!

Best wishes.

[StriatedCaracara in reply to marypw]

It is just checking if we have inflammation when we have so many sorts of inflammation.

I think I had pericarditis, Locum GP said could not have as CRP normal.

Left treating ourselves all the time, learning from each other here.

[marypw in reply to StriatedCaracara]

Yes, you are right - those markers went up when I had gall stones.

I once had a GP who was doing my annual medicines review, ask me why I took hydroxychloroquine? Obviously missed out on the 10 minute lecture on lupus at medical school. It is depressing to find how little so many doctors know about us!

[StriatedCaracara in reply to marypw]

Yes and even when I have dry eyes some say it is because of hydroxychloroquine.

I can't believe this is their level of knowledge..

..and now I just explain things to them gently

Probably need an online refresher course like they did in this example in the States:

healthunlocked.com/lupusuk/...