Finally started initial blood tests to find out what is wrong with me. Any advice?

Hi Everyone

So for the past couple of years I've been suffering from quite a large variety of symptoms which have been gradually getting worse as time goes on.

I've been to my gp for most of my symptoms separately but today I I presented a full list of symptoms, details, hospital visits and photos of my butterfly and chest rash to one of the locums at my surgery and he immediately sent me for initial blood work.

He said they would check my bloods for anything anormal using routine checks and the next stage would be to check for autoimmune markers pointing to something serious in a next round of blood work.

I've to go on Thursday for the results of the generic tests.

Can anyone give me any advice on what sort of questions I should be asking, what I should ensure is being looked at and if this is the right route to be going down for a lupus diagnosis or any other type of autoimmune disorder?

Thanks guys :)

Symptoms

Constantly aching bones, muscles and neck: I suffer from pain in my lower back, left leg, left buttock, across my shoulders, left knee and my feet. Every day some degree of pain is present though I suffer flare ups in my feet which is debilitating and leaves me hardly able to walk from the burning pain. In the past few weeks the back pain has been constant and debilitating.

- Constant Mouth Ulcers/Receeding Gums: Since January I have had ulcers on my tongue and my mouth every two weeks. Receeding gums for four years.

- Dry eyes and parched mouth: I have been suffering from constantly dry eyes that feel like sandpaper and my mouth is so dry. I drink litres of water every day due to the parched feeling.

- Pleurisy and Shortness of breath: I have had three bouts of Viral Pleurisy in less than a year. GP told me I had repetitive strain injury and refused to listen to my chest. Discovered after trips to A&E. I suffer shortness of breath even just walking up the stairs.

- Constant Fatigue: Debilitating tiredness and sheer exhaustion in my body no matter how much sleep or rest I get. Mentioned to my GP and told to quit my job!

- Butterfly like rash on face and rash on chest: I have had a red rash on my cheeks for a long time but put it down to the change in the weather after moving back to the uk. I also get flare ups of a non itchy rash on my chest.

- Gastrointestinal Issues: Treated for a bleeding Duodenal Ulcer in '08 at the age of 17 following three years of misdiagnosis due to my young age, Hiatus Hernia diagnosed in Oct'15 after an emergency Endoscopy following Oesphagitus and Grade B acid burns to the Oesophagus (vomiting blood, acid reflux and black stools) the gp who referred me told me she suspectes IBS due to stomach cramps, constipation and diarrhea on a long term basis. No further investigation offered. Put on Lansoprazol 30mg.

- Chest pain: Bouts of severe chest pain in March' 16, June'16, August'16. Hospitalisation in August. Clear ECG, bloods and Xray. Inflammation to chest muscle and bone was reason given. Prescribed Cocodamol as can't take antiflammatories due to hernia and ulcer. Oct'16 Another x ray showed continued inflammation of the chest muscle and bone.

- Psoriasis: Cronic psoriasis affecting scalp. Also have patches on elbows, knee, sole of feet, arms and hand. Severe pitting of fingernails, toenails and loss of two toenails. Prescribed Betnovate cream and scalp solution.

-Thining hair: Losing alarming amount of hair after brushing. Also have hair loss after washing and on pillow. Hair is thin and brittle.

-UTI: Three urinary tract infections in less than a year.

-Weight Gain: Have gained 3 stone in 23 months. Lead a much more sedentary life style but adjusting diet hasn't helped.

- Constant headaches/ Migraines/Jaw ache: I have a headache at some point every day. Suffered first Migraine in July'14 and have had four since then. One migraine lasted for a week in June'16. I wake up every day with jaw ache.

-Balance issues and dizziness upon standing: Random episodes of loss of balance resulting in falling or lurching. Blackening of vision when standing. Especially when standing from sitting.

- Sun rash/Night sweats: Itchy red rash after even 5 min exposure to sun. Waking up bathed in sweat and clammy at night.

- Endometriosis

7 Replies

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  • I'm following almost identical story good luck on your journey

  • Hello nat: am glad your investigations are getting under way

    You're clearly very self aware. Your observations are very thorough. This organisation will help you & your medics at all your consultations

    No doubt you've noticed that some of us have blood results that show normal levels of inflammatory markers & are seroneg re various significant antibodies etc. However, in my case of infant onset lupus, ehlers danlos syndrome, early onset Hypogammaglobulinaemia & lymphopenia + Sjogrens, the following relevant blood results are below normal: lymphocytes, Complements C3 & C4, and immunoglobulins G,A,M. so, you can always ask whether thorough immunologic bloods tests are actually being run 😉

    Some of us have found the downloadable appt prep guide & checklists from these 2 links v helpful during the diagnostic & treatment process:

    usinlupus.com/tools/appoint...

    usinlupus.com/tools/lupusch...

    And this document explains the British Society of Rheumatology guidelines for the assessment & care of lupus patients (including diagnostic criteria):

    rheumatology.org.uk/include...

    Please let us know how you get on

    🍀🍀🍀🍀 coco

  • Hi Nat1291,

    Barnclown has given you a really great reply with some links to brilliant resources. As she has said, you sound very organised and methodical which will hopefully help you in getting a correct diagnosis. Lupus can cause a lot of different abnormalities in blood panels, so anything which is low or high should be taken into consideration. Low white blood cells, red blood cells, platelets and iron can all potentially occur in lupus.

    If you want more information about the specific blood tests monitoring and diagnosing lupus, please have a look at our factsheet here - lupusuk.org.uk/wp-content/u...

    If you need more information about lupus and LUPUS UK, we have a free booklet which you can request or download from our website at lupusuk.org.uk/request-info...

    Let us know how you get on.

  • Hi guys

    Thank you so much for taking the time to reply and for the information you provided.

    I'm sorry I haven't replied sooner but I've been laid up with a cold and feeling exhausted.

    The links were very informative and contained information I wasn't previously aware of.

    Lupus is a much more complex and serious condition than I thought.

    I got the results of my generic bloods today and everything was normal apart from vitamin D deficiency and some sort of abnormality with my liver function. The Secretary wasn't able to give me any other information regarding the results but a gp is going to call me to discuss them.

    I'm not sure what to think as I wasn't expecting anything out of the ordinary to be found but clearly it isn't worrying if they don't want to see me in person .

    I'll push for the autoimmune tests now that the generic ones are done and don't show anything conclusive of explain why I feel so awful all the time.

    Do you think this is the right next step? xx

  • Hi Nat1291, I think that pushing for autoimmune tests or a referral to a rheumatologist would be a good next step. Let us know how you get on.

  • Dear Paul

    The GP called this afternoon and confirmed that I have a vitamin D deficiency and also that I had slightly raised levels of liver enzymes.

    I've to return for a repeat test on Dec 8th to check if the enzymes remain raised and he said we will take it from there.

    I am slightly concerned as I know that slightly raised liver enzymes ALT and AST can point to hepatitis which I know is common among Lupus pacients.

    I guess I'll need to see how it goes

    Thank you for your replies, they are greatly appreciated. x

  • Good luck with the repeat test on the 8th. Keep us updated with how you are getting on.

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