Mystery Symptoms - Lupus? Autoimmune?

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New Member

Date Joined Sep 2013
Total Posts : 3
   Posted 1/14/2014 6:36 PM (GMT -6)   
Hi there,

For the past 6 years I have been ill, and have some very odd symptoms which doctors don’t recognise. I don't know if they are Lupus or autoimmune related, but I was just wondering if anyone has any experience of these or might know what could be the illness that is causing them?

The weird symptoms are:

Blood tests that are increased/raised in the winter and normal in the summer. The raised tests have been ESR, CRP, Neutrophils, Platelets and ALT. They are raised throughout October - March and become normal from April through to September whereby they then rise again.

A “slump” every day between 12pm and 5pm. At 12pm I feel extremely weak and fatigued that lasts until 5pm, when it improves. This has happened every single day for 6 years.

Can’t go in the sun without getting fevers a couple of days afterwards.

My nervous system reacts very strangely to certain stimulation. If I listen to the radio or my MP3 player then my body reacts by increasing my heart rate, it feels like blood is moving in my hands and feet, and I feel very uncomfortable and unsettled. It doesn’t matter about the volume of the sound as it’s not my ears that are too sensitive to it, but just the bodies internal reaction.

I get the exact same reaction as listed above when I wear clothing. My nervous system reacts in the same way when the clothing touches my skin. The clothing itself doesn’t feel uncomfortable or my skin too sensitive to the touch of it, it’s just the bodies internal reaction.

I need to eat in order to get to sleep and often wake in the middle of the night and then need to eat to get back to sleep. This is not a blood sugar problem.

If I drink a lot of liquid I sweat and shake afterwards.

My hair becomes greasy a few hours after washing it.

I also have many other symptoms that are less strange (hair loss, constantly strong beating heart, low temperature, low blood pressure, seborrhoeic dermatitis, huge weakness etc.) and so less specific.

The blood tests I've had done are:

TSH – in first few weeks of illness it was 2.2, now 5 and half years later it is 1.4.
T3 – 4.8 PMOL/L – normal.
T4 – 19.4 PMOL/L – normal.
Parathyroid – 2.8 PMOL/L – normal.
Cortisol – 901 NMOL/L – high.

ESR – 60 mm/hr - high.
C-Reactive Protein – 77 mg/l - high.
Neutrophils – 12.4 x10^9/L - high.
Platelets – 460 x10^9/L - high.
MCV – 73.0 fL - low.
MCH – 22.9 pg - low.
MCHC – 29.6 g/dl - low.
Serum iron – 4.4 UG/L- low.
Iron Saturation – 11% - low.
Haemoglobin – 11.8 G/DL - slightly low.
B12 - normal.

Urine metadrenalines – normal.
Anti-nuclear antibodies – negative.
Smooth muscle antibodies – negative.
Mitochondrial antibodies – negative.
Gast PL Cell antibodies – negative.
Liver Kidney microsomal antibodies – negative.
Endomysial antibodies – negative.
DNA binding antibodies – negative.
Rheumatoid Factor – normal.
Borrelia (Lyme disease) antibodies – negative.
Infectious Mononucleosis – negative.
Coxsacki B Virus – negative.
Toxoplasama antibodies – negative.
IgG – normal.
IgA – normal.
IgM – normal.
Chromongranin A & B – normal.
Compliment C3 – 1.38 g/l – normal.
Compliment C4 – 0.28 g/l – normal.
Glucose fasting test – normal.
Insulin-like Growth factor 1 & 2 – normal.

As well as my Cortisol blood levels being raised, I also have had a urine cortisol test come back as slightly raised, but have done the salivary adrenal profile with the 4 samples throughout the day and that came back low. So I'm utterly confused when it comes to Cortisol.

As I said, I don’t know if any of these are related to Lupus but if they were to ring any bells with anyone or if they had some experience/heard of anything like this before then I would greatly appreciate any information. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.

Thanks very much!

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/14/2014 7:14 PM (GMT -6)   
I'm not a doctor so I can't interpet what your labs mean. Are you seeing a rheumatologist?

I'm photosensitive so I use special clothes with built in sun protection. I also avoid tanning beds and fluorescent lights.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Feb 2014
Total Posts : 4
   Posted 2/28/2014 12:51 AM (GMT -6)   
I'm not a doctor, but right now I have my own "mystery Illness" that has autoimmune like properties of CIDP and Lupus. I have had several tick infections throughout my life and I am pretty sure although my tests come back negative (sometimes they fluctuate to indeterm/positive), testing is flawed, and far too many people have Lyme. I do believe, many may be misdiagnosed with extreme illnesses like MS or Lupus and the drugs for Lupus will do great damage if you have Lyme or visa versa. Lyme has over 100+ symptoms and is the great mimicker. Find a very competent rhumetologist/llmd who gets this crap because either way, you need to see someone about your immune system.

Regular Member

Date Joined Jan 2014
Total Posts : 27
   Posted 2/28/2014 2:45 PM (GMT -6)   
Yeah What she said!

Carolynmcg, I think this is great reply.

Quote: Lyme has over 100+ symptoms and is the great mimicker.

Also what about :Seasonal Affective Disorder too? I don't know much about it personally. I know that people with this can be very depressed.

Good Luck!

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