LUPUS UK

Blood Test Results (undiagnosed/not Lupus?) So, what next?!

So, I've just spoken to a really helpful receptionist over the phone at my surgery who has given me my results of the blood test I had last week to check for inflammation:

Electrolytes - Normal

Sodium 138

Potassium 3.6

Creatinine 65

Filtration = 90

Full Blood Count - Normal

HBA1C = 44

Serum - Normal

Glucose - Normal

Liver Function - Normal

Immunoglobulin - Normal

Plasma - Satisfactory

So why do my arms and body ache? It hurts to move :( Why am I so fatigued, lacking energy and feeling so low? Why are various parts of my body stinging and tingling painfully and parts of me feeling cold? Does this point to fibromyalgia?

I'm feeling at my wits end as I waited since March to see a neurologist who ordered these tests which were done at my surgery. Where do I go now? I'm actually off work today due to increased pain levels and feeling unwell.

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Hmm, from what I can see by googling, my potassium result is only just "normal" as I've just read that 3.6-5.2 is considered normal.

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Well, I am no diagnostician, but I thought the usual blood markers for inflammation are CRP and ESR, but maybe they come under one of the more general headings? You also you don't seem to have results for the tests that are usually done to diagnose lupus - ANA, antiDNA, ENA, antiphospholipid antibodies etc

These are described in the LupusUK leaflet here: lupusuk.org.uk/wp-content/u...

There are definitely people here better qualified o give an opinion, but I am sure that it would be helpful to talk this through with your GP in any case. Don't give up! x

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ANA was requested on the pathology slip (the hospital gave it to me to to take to the surgery). I asked about the ANA result but she said she couldn't see anything relating to this??

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An HbA1c over 42 is abnormal and may indicate impaired glucose regulation. Sometimes referred to as pre diabetes. Have you been told that they are going to repeat in in two weeks ?

Viscosity is more accurate than ear or crp for acute phase inflammation, so don't worry that they haven't done either of those. I think this looks like a base line sweep of blood tests. It will guide the doctors to what they may look for next, or not.

I would go and discuss the consequence of these with your gp and reiterate how poorly you feel.

I hope you get answers soon and get a reduction of symptoms soon.

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Thank you. I am actually diabetic (type 2 diet controlled) so the 44 is within recommended limits. I think once it goes over 48 is when they have to take action. I certainly am going to push my Dr for answers! Had enough of feeling ill with no diagnosis or proper way forward. :'(

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If you have diabetes you should be praised for having such good control. Doesn't explain your other symptoms though, does it. I'm sure you're frustrated.... most of us know what that feels like. Keep us informed.

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Hi, none of those tests are specific to lupus they are all just ur kidney and liver function etc which may well be totally normal.

U need to have the more specific blood tests. Id go back to the gp and ask for further more extensive tests if u feel u are not happy and still need to rule out autoimmune probs.

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Well, the tests are what the neurologist requested at my initial appointment. In her notes box on the pathology slip it also read "ANA, RhF, Immunoglob and SPE". This was in addition to electrolytes, creat, glucose, liver function, full blood count and HBA1C.

Maybe the receptionist missed something?

I'm not sure what other tests I can ask for as been checked for anaemia, thyroid, iron deficiency and the usual standard tests.

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The ANA result plus the antibody panel if positive, are the tests they need to see. In Australia only Doctors can give blood test results to people as Nurses or Receptionists don't have the authority. You need to see the Dr to get all the results. Just as a start.

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I live in the UK and whoever it was I spoke to (receptionist) seemed happy to read out most of the results. My legs are absolutely freezing which is one of my main symptoms. My hands and feet aren't and I've just touched my legs which are cold to the touch. Arms are cold too although not as painfully cold as my legs.

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Receptionist can give out results if the GP has seen and commented on them first. ANA and some of the more specialised tests can take longer to come back than the others but ESR and CRP are quick and easy - you need both of these. x

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Wait until you can speak to either your Practice Nurse, your GP or the neurologist who ordered the tests before you get worried! I'm sure the receptionist meant to be helpful, but as you don't understand how readings compare to each other you are no further forward are you?

I'm sure when your doctor has seen the results .....if he/she thinks there is something was adrift they will contact you.

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The next appointment with the neurologist has already come through the post . . . it's at the end of November! Yes, you did read that correctly, NOVEMBER! You can see why I feel desperate. Seeing my Dr on 6 September so as others have said I think I'll mention a possible referral to a rheumatologist. However, it took from March (when my referral was made to neurology) to August to actually see a neurologist! I fully understand there's a process but I can't wait months and months again and remain undiagnosed. 😢

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Yes I was going to say too that the more specific ones can take a bit longer for the result. If there were any abnormal results the receptionist wouldn't give the result, they would make u an app to see the gp.

So it might just be that the other tests aren't back just yet.

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Hi Tigerlily

I think you need to go and actually see your doctor. Perhaps ask for a referral to a Rheumatologist? The leg stuff sounds like it could possibly be Neuropathy, and you don't say if your B12 was checked? There is so much more that you need to know really and your GP is your start point, write down your questions and book a double appt. perhaps? And take someone with you, amazing what another pair of ears acheives, especially if you think you might be ' fobbed off'!

(I have Fibromyalgia and blood tests rarely reveal much about it)

Good luck Hunnie

Ccxx

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Hubby almost always comes with me as we have the same Dr. The neurologist told me at my initial appointment that it wasn't diabetic neuropathy (from her tests and observations etc). Pretty sure B12 was checked a long time ago and there was nothing abnormal. I have a friend with B12 deficiency who has regular injections who's trying to help with alternative therapies etc. I've been on other forums and some have mentioned possible thyroid issues - again, I'm apparently normal although I don't think extensive tests were done. All I know is that there is something wrong and I can't keep living (existing) like this! 😢

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Those tests don't tell you much except what it it probably isn't. They are just the routine stuff that GPs do. The ANA will have probably gone to a different lab and take longer to come back - and it is possible there are other results that the receptionist isn't allowed to comment on, even handing them out. She may have felt helpful - but she has no qualifications to interpret results, just that they are "in range".

Where do you go now? I'd say it isn't a neurologist you need to see but I assume you have already see a rheumatologist? As others have said - why weren't ESR and CRP done? That would also be standard.

But having normal results isn't always bad - it often rules out some options and fills in gaps.

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I haven't been referred to a rheumatologist. I had no idea the ANA would take longer and just assumed all the results had come back. I guess it explains why, when I asked about ANA she said she couldn't find or see that!

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Just because you can't prove it doesn't mean it is not true. Tests are result specific -wrong test, no answer.

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Does anyone know how long the ANA test would take? Blood was taken last Thursday. Would the surgery automatically contact me if it's abnormal?

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I'm in Australia but it seems to take around a week to get ANA plus panel done. I usually have them done 3 weeks before the appt to make sure. We can also wait around 6 months for a first appt.

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Thanks Puska. Maybe I should contact the surgery again tomorrow or Thursday and double check.

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My gp contacts me if anything, however tiny, is amiss but many don't. You're entitled to a printout of all the tests that have been done and the results - why not try asking for it? They may seem a bit flustered at first but people are asking more and more these days. You also have a legal right to access your GP record online whenever you wish. You need to show passport ID at the surgery, fill in some forms, take proof of address and you'll be given passwords etc.

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Hi. I've just had an e-mail in the last 10 mins or so from the surgery as I contacted by e-mail yesterday requesting my results. They say they can't e-mail them but there's a printout on reception for me to collect. I'll have to go and get it tomorrow as they're closed now.

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I think that legally they're not allowed to email these things. Good news anyway !

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Usually it can take at least week or longer for antibody tests to come back from uk labs

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As we all know staffing in the NHS is stretched to the limit, not only in Rheumatology but it now seems in all specialities.

If you can manage it who don't you ask for a Private referral to whichever Consultant your GP thinks appropriate?

In the interim have you been prescribed any pain killers?

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I don't think I can afford to go private. And if I did, would I be any further forward? I have amitriptyline (20mg dose) taken to help me sleep and I've recently started on pregabalin (50mg) twice a day which isn't doing anything for the pain. I took two pregabalin last night as I'd forgotten to take my amitriptyline. I may double the dose and just take a single dose to see if it starts helping. I just want to huddle under blankets/duvets as once I warm up a bit it eases the pain a little.

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You can request an increase on pregablin as I'm on 300mg twice a day until you get the appointment. But it's not a long term solution xxx

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How long have you been on the Pregabalin tigerlily72? It takes a while to settle , I've been on it a year or so having tried several others, gabapentin, sertraline etc. without success, I've had a nasty chest infection recently and upped my steroids and rescue ABs and for whatever reason, didn t take my Pregabalin, it was only when the really heavy sweating, almost like a hypo started that I realised how much it was doing for me and that I'd missed it out of my dosette box!

If the Neuro has ruled out Diabetic neuropathy, then it needs investigating, it doesn't just happen by itself, and although you B12 was checked a while ago tight be worth asking for a repeat, if you ARE b12 deficient and its causing the neuropathy, then if it isn't treated the damage becomes long term and is nasty ( yeah, experience!)

You really do need a Rheumatology appt. They are the discipline that can rule out Fibro etc. Meanwhile have you tried Capsaicin cream for pain? It doesn't suit everyone but is recommended by Arthritis uk and I personally love the stuff.

I really hope you get it sorted my lovely, give it another day or two and get back to that GP, he/she may have some further results including Ana etc. which may shed some light. I do hope so.

Gentle hugs to you

C.c xxx

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So much useful info. Thank you 😀. I've been on the pregabalin for 2 weeks and I know it's not long but I can't cope with the constant discomfort and pain. My dose is only 50mg but I took 100mg and doubled up earlier which only just took the edge of but it's worn off so contemplating taking another 50mg to see if it helps. Despite being rolled up in a blanket on the sofa my skin on my legs still stings painfully and I don't want to move. My arms are cold too. I think I will mention B12 again and see what they say. I'm going to look into capsaicin cream in a bit.

I'm even looking into cbd / hemp capsules as I've heard people say they can help with pain levels.

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Mmm I'm interested in this but the problem here is that you can't be certain of purity , strength etc. I don't think it will be long till CBD is available on prescription nationally tho, there's lots of research and its being trialled I believe.

Does warmth help your skin? It's not something I suffer with although I do have days when I can't bear to have clothing touching me, I keep some really old soft PJs for days like that. And it might sound really stoopid , but good old paracetamol helps, especially the stuff that you get for hangovers! The soluble ones? They used to be called R*s*l*e? Asda do there own version, they are really quick into the system, a lot of people write them off as useless but sometimes simple is good?

It does sound like you're having a pretty bad flare 🤒😔😔xx

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Yes, warmth does help. It's odd you should say about things touching your skin as when mine's really bad I find certain clothing and fabrics will cause discomfort. It feels like an ice cold compress or cold damp air is under my skin. I have some pink Himalayan bath salt which I've been using in the last few days but relief is very short lived. I feel like screaming at the next Dr I see!

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My Daughter bought me some of those salts a couple of Christmases ago, they're lovely but no, the warm softy feeling doesn't last does it? Someone suggested rubbing Vicks into my feet , ever heard of that one?

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I've heard of rubbing Vicks on your feet when you've a heavy cold. Just been on Amazon browsing and not sure about the capsaicin cream....

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I get it on prescription, I've learned which is fibro pain and which is osteo, the zaicin I use for osteo as it warms, but it can cause redness on your skin, but, its a bit like tricking your system into believing that as your skin is hot from the cream, it doesnt need to be hot and stinging from your system? Dunno if that makes sense, I put it on my feet when they are burning cold.

I tried Vicks, it does have pain relieving properties but it didn't really do anything for me. When I have Fibro pain, I use biofreeze jel.

I tend to think of the UCTD or Lupus stuff more in the context of fibro, perhaps that's wrong but I'm still learning about this Lupus stuff!

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**** UPDATE ****

I phoned the surgery earlier as I've had enough now! Triage nurse called back and I've got an appointment with a Dr later this afternoon. Let's see what this one thinks . . . Hopefully they'll have a magic wand to make the pain go away!

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***** FURTHER UPDATE *****

Well, the female Dr I saw this afternoon has signed me off work for 2 weeks and said I can increase the pregabalin to 100mg up to three times a day if needed. She's given me another prescription. She said that some of the symptoms I was describing sounded like CFS and Fibromyalgia. She also said if the MRI scan comes back as normal then this is what they are going to be diagnosing me with. Unfortunately, as she explained, there's a raft of other tests that they have to do to eliminate the testable conditions which all takes time.

Thanks to all that have taken the time to reply to me on this post. I'll be crossing over to the Fibromyalgia group now for support. x

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Just an idea but I'd keep on the Lupus UK site too if you can. Fibro overlaps with Lupus as do many other conditions and there is so much in depth knowledge and support on this site.

You may benefit from both groups. On average it takes a patient with Lupus 7 years to be diagnosed. It took 32 years for me as my bloods are still and have always been normal. I agree with PMRpro , those bloods don't tell you much at all. And doctors should be treating and investigating symptoms, not just diagnosing from blood results.

You may need a biopsy for small fibre neuropathy or a muscle biopsy too. There is a whole host of info on this site so stay in touch. We're all here to help!

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Thanks for your advice. I've rejoined. I'm off to Google small fibre neuropathy and muscle biopsy. My problem is, if they don't think it's lupus I'll probably be told it's chronic fatigue/M.E. and that's kind of scary if it's a potential misdiagnosis!

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HI Tigerlily, I'm in the midst of the same endless battle of pain and fatigue with no answers, so many blood tests and so many Dr's, constant agony, going back and forth, one Rheumatologist says SLE with Fibro and now another says Fibromyalgia only, the meds being prescribed helps with sleep, but waking up with the pain is still a nightmare all over everyday!!!! Help!

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I totally feel your pain and frustration. I'm almost embarrassed being regularly at the Drs surgery. I don't obviously look "sick" but inside I'm screaming and usually in varying degrees of pain and with no diagnosis it's frustrating.

I'm not sure how I can go on. Still off work and I don't think I can go back at the moment and I'm almost dreading my next Drs appointment. Not that my Dr isn't ok, as she is. I feel like screaming and sobbing as this isn't living / life. I can't even do a supermarket shop with my husband without being in pain - the cold from the chilled sections caused me considerable pain at the end of last week 😢 It even hurts to raise my arms and shampoo and wash my hair.

And I'm not due to see my neurologist again for another 3 months. I simply can't live like this.

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Not being able to lift your arms above your head is a classic sign of myosytis. I'm not diagnosing you but you often have normal bloods with that condition.

Once you open the Pandoras box of auto immune disease it can be pretty overwhelming. Even more reason to stay on the site. There is more to fatigue and pain than ME/CFS. And they are bad enough on their own!

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Stick with it and be assertive insisting on referrals if your not already seeing a Rheumy.

My GP has been amazing but if it wasn't for being knowledgable (I google my symptoms blood test results etc) and firm with my consultants and constantly on at them questioning how I feel and my results I'd still be bed ridden.

In 20 months I've been diagnosed firstly with Hashimotos then Lupus and just last week myositis. It's a long slow process but the longer you go without treatment the more damage you could be doing to your body.

I questioned fibromyalgia as my thighs especially are so painful. Finally after an MRI as inflammation in bloods and emg were normal my Rheumy requested an MRI and lung function tests and it's shown up! I'm not happy about the delays and damage it could have caused but now I'm on a mission to get the treatment etc I need! So god help them.

My advice: Get copies of your blood tests and any other results see what's low in range or abnormal. Search your symptoms and possible causes. Not all tests are conclusive as I found out. So keep trying I know it's hard but you'll get there x

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