Advise Please

[Belinda1136]

Hi,

If any of you could offer any opinions / advise on my blood tests it would be apricated.

Bit of back ground:

Underactive Thyroid for around 7 years currently on 150mg Levothyroxine

Low B 12 - been advised to take supplements by GP which I am taking for around 3 months

Low Vitamin D - been advised to take supplements by GP which I am taking for around 2 months

For around 18 months now have been struggling with tiredness ranging from general struggle to get through the day to extreme sleeping most the day depending on the day.

Fingers range from aching to hurting every day and during the night I often get woken up by pain in my elbows and toes.

Mild red 'butterfly' shaped rash across my face but also get down sides of my neck but never meets around the front of throat.

Hair falling out

Getting lots of boils / blisters

After exhausting many other thing my GP has tested for Lupus and Rheumatoid Arthritis - from the results she has referred me to my local Rheumatology Department but apparently there is up to a 44 week wait.

My results were, ranges are in brackets:

dsDNA - 1.4 (0.0 to 15.0)

Anti-CCP 1.7 (0.0 to 6.9)

Tissu Tranglutaminase 0.8 (0.0 to 6.9)

Serum C Reactive Protein 6.9 (0.0 to 12.5)

Complement 1.53 (0.75 to 1.75)

ESR 27 (2 to 12)

Thank You 😁

[PMRpro]

The only out of range is the ESR and that is because there is inflammation somewhere - could be anywhere and anything.

It is all very well say take supplements - but they have to be right. If your vit D is low you need a very high loading dose prescribed to start with, not just what the chemist sells OTC. Same with B12 - have you tried the sublingual type? That is absorbed from under your tongue and is much more likely to work than ordinary tablets.

[Belinda1136 in reply to PMRpro]

Thank you for your reply.

B12 haven't tried the under the tongue one but I will give it a go

[PMRpro in reply to Belinda1136]

It is said to be as effective as the injections,

[seniorzala]

Full ANA-Lisa Panel must be requested.

Seniorzala

[Belinda1136 in reply to seniorzala]

Thank you

[ExpatRay]

Hi Belinda, DsDNA....this is a Lupus Marker and your level is in the negagive range.....

Anti-CCP......Is a rheumatoid arthritis marker.....your level seems negative

Tissue Trang......is a celiac disease marker and again your level seems low

CRP is a measure of general inflammation in the body and yours does not seem elevated...lower Is better, the more inflammation the more potential medical. complications can arise.

Complements are usually C3 and C4 and are measures of blood proteins which

help your doctor to diagnose systemic lupus and its variants particularily low levels

ESR......this is another marker for inflammation in you body, yours seems slightly. elevated.

I am not a doctor, the above is to help your general understanding and not to be taken as definitive medical advice but i know ANA testing can be very misleading and false positives or negatives are not unusual.

Given your stated symptoms , together with the above test results and despite the -ve marker levels, I would suspect from my experience there is a possibility of Systemic Lupus(SLE) and/or one of its variations(rheumatoid arthiritus).

You do not say if you are on medication but from my experience you should seek a rheumatologist medical confirmation as soon as possible and have him recommend appropriate medication.....the sooner these conditions are confirmed and medicated,, if you have what seems to be incicated, the better for longer term outcomes.

Good Luck

[Belinda1136 in reply to ExpatRay]

Thank you, this is all very helpful.

Apart from my Thyroid medication I am not on any other medications.

My GP has referred me but the waiting list is up to 44 weeks but fingers crossed they contact me sooner.

[ExpatRay in reply to Belinda1136]

Hi Belinda just a further point to consider.

In the light of your extended period to be able to see a Rheumatologist awaiting to confirm your condition, and if positive, the time for hydroxycoliquin, the primary antimalerial of choice for treating Lupus and related autoimmune conditions, which takes around 4 months for most people for it to become effective, although you may be prescribed cortisteroids intitially, an option if you have the budget may be to seek a rheumatologist short half hour videoconference private consultation.

I arranged this for my wife who had an ANA report not too much disimilar to yours with attendant symptoms such as malar rash etc, the rheumatologist we contacted was able to see with a good degree of certainty she has acute cuteaneous Lupus from the reports we sent to him and being able to see my wife visually by videoconference(Zoom).

He accordingly prescribed hydroxycoliquin with Cortisteroids with a recommendation to her GP and she started her Lupus treatment journey. In the UK such a private consultation might be around GBP 300 but in our case proved very well worth it to get to her issues as soon as possible without waiting for a long NHS queue and delay in treatment.

Hope this helps.

[seniorzala]

Hello Belinda

,Patient examination and questioning+Clinicum+Labor=Diagnózis. Long Way....

Seniorzala

[StriatedCaracara]

I asked my GP to do the Anti-Nuclear Antibody (ANA) blood test. This is usually the first step. It appears missing from your results. If positive, an ENA screen is then done at the same time, your GP previously suggesting particular systemic autoimmune conditions to test for eg Lupus and Sjogrens.

(Anti- Smith, from the ENA screen, as well as Anti- double stranded DNA stand alone test you have had done, are both relevant for Lupus.)

Some people are diagnosed with Undifferentiated or Undefined 'Connective Tissue Disorder' (UCTD), if symptoms make CTD obvious but blood tests don't establish exact cause. UCTD is sometimes referred to as "Lupus Lite", and is treated in the same way.

Following covid maybe more are falling into this group..

Will see..