Please someone help!!! : Hiya anyone good at... - LUPUS UK

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Please someone help!!!

JoG1975
JoG1975

Hiya anyone good at working out blood tests? My daughter has been poorly since sept. Doctors can’t find anything wrong. To start with we thought lupus or hyperthyroid. Bloods aren’t ‘conclusive’ so they keep telling me. These are the latest ones! Her symptoms are head aches, mouth ulcers, butterfly rash over cheeks and nose, Livedo reticularis, cold hands and feet, loss of appetite, exhaustion/ fatigue, dry scalp with sores, nasal sounding croaky voice and sore throat and pain in the outside of her ears. Please if anyone has any ideas I would be grateful. GP is unhelpful and untill I insisted wasn’t willing to test bloods again this week. Paediatrician is just as bad and keep saying it’s just chronic fatigue syndrome. But surely it has to be something. She used to be so outgoing and full of life. But the last 7 months have changed her. She missed so much school and sleeps all the time.

Thanks

A very worried mummy.

P.s she’s 14 and started her period a week before all this started and hasn’t had one since. Yet doctor refuses to believe this may be linked.

46 Replies

Must be hard to see your healthy daughter lose energy and deteriorate like this. Do you have photos of her rash? Have you taken her temperature when she feels ill? It sounds like the doctor is saying the preliminary tests are normal. But has she had more specific tests for autoimmune disease? Others may be more helpful in telling you how to get a referral in the U.K. to a specialist. Hoping you get answers soon.

JoG1975
JoG1975 in reply to KayHimm

Yes I have photos but not sure how to add them to this reply?

JoG1975
JoG1975 in reply to JoG1975

And yes she’s had some tests previously ( Oct 2018) ANA etc but not since as they were negative and as I said GP isn’t very bothered 😕

KayHimm
KayHimm in reply to JoG1975

The main thing is to show the photos to your doctors. I actually do not know how to post photos but maybe someone else can advise you.

Other than the vitamin D level which is low, the white cell count that is slightly low and the alkaline phosphatase level which is slightly high, I can't see anything there that is abnormal. The figures in brackets are the normal ranges for the tests. Sometimes you have to accept that the numbers from the labs don't explain everything.

The diagnosis of chronic fatigue syndrome is a very real diagnosis and would account for both the abnormal tests I've mentioned and the fatigue and most of the other symptoms

ncbi.nlm.nih.gov/pmc/articl...

If you don't trust the paediatrician you have seen, you can only try another - probably privately. The same applies to the GP - try another.

But please don't get into a wild goose chase searching for a unicorn. As I say, sometimes there aren't the sort of answers we want.

JoG1975
JoG1975 in reply to PMRpro

Platlet count is also still low . Forgot to say she has blood and protein in every urine test that’s ever been taken. Surely if it was a ‘virrus’ as we were told in sept. 2018 that it would be better now and bloods would have returned to normal?

PMRpro
PMRpro in reply to JoG1975

Not necessarily - but it does merit further and more specialised testing I think.

miccika1
miccika1 in reply to JoG1975

Blood in urine sounds very concerning. Did you have a kidney specialist look at her?

JoG1975
JoG1975 in reply to PMRpro

I have booked a private consultant for 11th if next month. 😊 Dr sinha in Birmingham royal priory. Not sure if he’s good. Apparently the only BMI paediatric in my area.

Lisalou19
Lisalou19 in reply to JoG1975

Do another post if you haven’t already for a good specialist in Birmingham, it is this site that helped me get to a good one. X

For me these symptoms all resemble mine, and only routine bloods were done by gp. I had approx 14 tubes of blood taken by a lupus specialist and finally after years of constantly being told there’s nothing wrong, I was told there is. Still don’t have a firm diagnosis but I’m on medication. My periods at 38 still cause an increase in my symptoms.

I would most certainly search for a specialist and potentially avoid going backwards and forwards.

X

JoG1975
JoG1975 in reply to Lisalou19

Thanks Lisa, nice to know we’re not alone in our quest for answers. I just don’t understand the docs! It’s like they think she’s pretending? Seriously she’s like an old lady all wrapped up in layers of clothes and blankets and has to wear compression socks to help with the blood pooling in her legs 😩 I just feel so bad for her. She has no quality of life can’t ride her horses or walk her beloved dogs. Makes me so sad and worried. Good luck with getting your diagnosis sorted. At least your getting some help with meds in the meantime... they have refused Izzy anything other than paracetamol for her terrible head aches😢

I had a similar situation with myself this time last year. Kept getting unwell but my bloods conducted at the GP were ‘normal’. A few aspects such as my WBC and Lymphocyte count was a bit on the low side but nothing ‘too concerning’. Got to May and I had grown suspicious lumps in my neck, the main one being the size of a golf ball alongside hair loss, fatigue (which was progressively getting worse everyday) recurrent infections, weight loss and night sweats. It was only then that my GP urgently referred me to ENT where I had several biopsies conducted. Once one of them came back suspicious but not definitive of malignancy I was referred to Haematology. Haematologist was brilliant at getting to the bottom of why I was ill, he conducted all the specialist bloods and about 10 days later my results came back with a positive ANA, High inflammation levels, and several auto antibodies. I really suggest you try and be referred to a haematologist who did not discharge me until he found someone who could officially diagnose me. Make sure to document all her symptoms with dates and take pictures, build up a record of what is happening to her. Really wish you all the best and I hope you and your daughter can get to the bottom of this 💜

Thank you 🙏

I quite agree about Haematology. When I had my mastectomy and mentioned my concerns about lupus to surgeon and anaesthetist, they said to see a haematologist. My GP, very sympathetic and also my cancer registrar, couldn't understand that. I'm on a blood thinner because they picked up a dangerous tendency to atrial fibrillation which I've had for at least at decade! Because of what we're up against we need extra cortisol to cope. Usually a steroid. A very low dose works for me.

As it happens I'm having a private health check from Healthcrest. It means I have my own set of results though they don't test for autoimmune conditions.

I would recommend that you request a copy of all blood tests and letters between surgeries and consultants. Don't give up but be armed for the struggle.

Hi JoG1975. I'm so sorry to hear of the problems your daughter is having.

It sounds to me like you may suspect that she has an autoimmune condition so I'm just just wondering if your doctor has done preliminary screening for this?

I ask because I don't see testing formsutoimmune antibodies, and CRP and ESR (the so called inflammatory markers).

These tests can't diagnose an autoimmune condition but if these are (or were) done and any of the levels are raised, then referral to a rheumatologist should take place for further more complex blood tests and investigations (which your GP won't have access to).

Unfortunately, diagnosis of autoimmune conditions is very complex and sometimes the answers we get are not the ones we want or expect. Many here were diagnosed with fibromyalgia, chronic fatigue...and a host of other 'things' prior to receiving a diagnosis that better fittted the symptoms and illnesses we were/are experiencing.

It's worth noting that blood and protein in every urine sample from a fourteen year old girl, since September 2018 is far from normal. Nor is a consistently low platelet count. Sounds like these haven't been investigated by a specialist...they should be.

Please don't despair...many here went through a long-winded and tortuous process to get a diagnosis and/or treatment. Though of course it shouldn't be like that.

Be determined, be persistent, and remember that you know your daughter better than anyone else, so are at the very least, able to recognise when something is far from right.

Good luck with your hunt for a specialist. For many of us, getting the right one was crucial and key to getting a diagnosis we could trust and appropriate treatment.

Please post again and let us know how you get on.

JoG1975
JoG1975 in reply to Foggyme

Thanks! She has had more exclusive tests ( bham children’s hospital) or though I have not had access to what these showed... only that they weren’t ‘ conclusive ‘ they love that word! I have now got an appointment with a private paediatrician scheduled for 2 weeks so have had to contact all doctors involved with Izzy so far to ask them to send notes and test results to him so he gets a picture of what’s been going on! My gp however has given me a copy of this recent blood test and the last one she did back in November ( which says she should have had it repeated 4-6 weeks later! ...gp did not do this 😡 ) think that maybe why she’s suddenly wishing to help as she’s obviously realised she’s been negligent!

Foggyme
Foggyme in reply to JoG1975

Hmmm...inconclusive...

Think if I was you I'd request a full copy of your daughter’s medical records, including copies of all blood tests, scans, X-rays etc. You are legally entitled to these and they will come in useful for any other appointments or referrals you have.

Details on how to do this should be on the hospital website - it's usually in a section called 'Access to Health Records'. They do try to fox you by asking for everything to be split into specific dates, consultants and departments seen in and by...I got around this by stating that I wanted a full and entire copy of my medical records, including all clinical notes, letters to other consultants, and copies of blood tests, scans and X-rays and reports of investigations. That covered the lot and I've had the first tranche (they make interesting reading - results never communicated, things that needed action and further investigation - which never happened...)...a worthwhile exercise.

You'll also be able to get a better idea of what exactly inconclusive means.

Good luck.

JoG1975
JoG1975 in reply to Foggyme

I’ll bet there’s loads they haven’t followed up! For instance today I called Coventry hospital to request copies of all tests and findings to be sent via fax to the private paed were due to see the week after next. And the secretary was very helpful. She said she could only see blood tests results. Strange I said as apparently she was seen by ENT and had a chest X-ray and an adominal scan! “Umm I can see a scan but X-ray was cancelled!” She said. Very interesting... can’t wait to see what else they said they did but didn’t ! 😡

Hi if you look to the column on the right as it is facing you that should tell you the normal values. If there is anything wrong it will be highlighted on the form. If some are slightly elevated or lower your dr may repeat the blood test in a few weeks and reassess then. I can’t really see clearly the results but maybe you can work them out. If you’re still not happy persist with your doctor. I think everyone on here will tell your their symptoms are worse around their periods. It could also be your daughters body is adjusting to the changes that are happening. I hope you get some answers soon. Xx

Hi there - I can see her Neutrophil is 1.7 which is low - should be 2 and above... any idea what they have been in the past year? My old GP retired 3yrs ago and a new one picked up on it, as I was back in the surgery with the exhaustion in tears, and then my raynauds had got so bad plus lesions and joint swelling that he ordered more bloods - the new GP noticed Id had low neutrophils for as long as Id been tested (decades!) which he was quite angry about as Id had tons of infections and feeling extrmely unwell/in pain/rashes for years. So GP made referral to Rheumatology.

And I cant see her Complement 3 and Complement 4 tests - has she had this? if not, ask the gp to do this test if you can... it might be a Rheumy needs to order them - but cant see why as my nurses do it for me (mind you, its a shared care agreement with Rheumatology). Anwyay, no harm in asking... C3 and C4 are the most commonly measured complement components. ... When the complement system is turned on during inflammation, levels of complement proteins may go down. For example, people with active lupus erythematosus may have lower-than-normal levels of the complement proteins C3 and C4. I have extrmely low C4 and my C3 fluctuates from low to normal.

There are a ton of experts on here so Im sure you are getting a lot of valuable info... Im 56 and they think Ive had SLE lupus since birth... certainly had the symptoms and pics to prove it.. but i am seronegative lupus (ie not ANA positive) ... and my rheumy has said I am so hypocomplement (v low complement levels) or something plus all my obvious symptoms and the constantly low neutrophil that I got the diagnosis. He thinks Id be positive for Anti-RO too having seen my symptoms last appointment. Hes a top Rheumatology Consultant but it took me going through a few Rheumatologists until I got to him.. so about 16mths. Anyway, try and get a referral to Rheumatology and take photos of all her symptoms to take along and keep a diary of eveything. Then you can discuss at the appointment - if your GP agrees to make referral. Hope all that makes sense - sorry, im a bit under par at the moment.

Here is the link to diagnosis requirements etc.... uptodate.com/contents/diagn...

Interesting quote Ive taken out :

"Other factors that may also influence ANA negativity in SLE patients include disease duration and treatment exposure [27]. In our experience, the frequency of ANA-negative SLE is lower in patients presenting at an early stage of their disease. In addition, SLE patients who have longstanding disease and/or have undergone treatment may lose ANA reactivity and become serologically negative over time. "

I wish you both the best of support. D x

Yes her neutrophils are always low ... we’re lower on previous test x

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I am so sorry to hear how ill your daughter is and how your not getting the answers you need. Look up the full list of M.E ( chronic fatigue syndrome), Fibromyalgia and also lupus tick every symptom your daughter has then then present them to your specialists and Drs. Keep a diary with photos and get your daughters medical records. Go through them as Drs neglect to tell us so much or telling us our tests are fine when they are not. If you wish to see another dr there’s spire methley Park hospital in Leeds. You can see a gp for half an hour it’s less than £100 they can then refer you to specific specialists. You need a referral to the CSF service, a neurologist and a rheumatologist as well as a paediatric specialist. You deserve some peace of mind I too have a child, my son is displaying all sorts of symptoms and the Drs are useless. I hear good things about lupus specialists in hospitals and that’s who you need to be seeing. If CSF and fibromyalgia is a factor I would highly recommend a food diary I was quite ill for a long time with both and only recovered with only drinking mineral water and an organic healthy diet. Try getting rid of cleaners, bubble bath, talc etc and replace with natural products. I found out I was highly sensitive and allergic to these items and some can make you ill. A specialist I saw said they were causing hormone disruptions. Now have been diagnosed with lupus which is different to manage as I am in a flare and only just taking the medication. I really hope you get some help and I wish your daughter a speedy recovery. Keep on this site and research all information that may be of some help and In time you will get more answers. Try looking up local support groups you can join as you may find information from other parents in a similar position that may help. All the very best. Take care. Elena

She has a vitamin d deficiency, and having had that myself it can make your joints and muscles hurt.

Insist on a referral to a rheumatologist. I was diagnosed 11 years old, GP dismissed my mum for years, she finally referred me to a paediatrician who was just as bad, before he even asked us anything he said to my mum 'have you considered she has schoolitis', she nearly strangled him and refused to leave his office until he referred us to a rheumatologist. The rheumatologist diagnosed me in about 10 minutes with SLE and also suggested my mum needed to be seen (turned out she had Sjorgrens).

The point it is, don't take no for an answer

JoG1975
JoG1975 in reply to SonyaNME

All the doctors to date have made me feel like we’re both mental cases! We went to see a rheumatologist at Bham children’s hospital just before Christmas! He did extended tests ( so he says... as they never tell you exactly what they tested for! ) I have now learnt to ask for copies of test results myself! I’m waiting for him to send me them! He was a nice man and seemed understanding in the consultation room! But when we received his letter it was basically saying it was all in her head! Why do they do this! Instead of referral to someone else who maybe able to help. He just wrote us off and passed her back to the paediatrician at our local hospital ( who is worse than useless ) so we just get passed backwards and forwards. I have been on a number of occasions temped to grab them round the throat 😂😊...thank god for mums who won’t give up!! X

I have Lupus. I was told I had a virus for many months before I was diagnosed. When that diagnosis came my symptoms had increased highly. My rheumatologist told me results show properly months after an event, not at the time. So it is possible that the negative blood results may be clearer later. If you can you should get an appointment either privately with Dr Graham Hughes - he set up the Lupus Unit at St Thomas’s and has gone private now or Prof De Cruz at the Lupus Unit at St Thomas’s and Guys Hospital. They will take you seriously. This is all in London though. wishing you all the best X

JoG1975
JoG1975 in reply to LilyMistri2

Thanks ... I’ll travel I don’t mind as long as she’s getting the help she needs 😊

Hi def ask for a referral to see a rheumatologist

Contact lupus UK headquarters to ask where the best paediatric rheumatologist is it may be worth travelling out of the area

Very best wishes

Omg I so know how you feel! I went through similar with my daughter. She had CF anyway but when she got to 14 she was having loads of time off school, fatigue, cold, legs would give way, etc. Eventually it came to her annual MOT as we called it and I asked the consultant to check her thyroid as I’d guessed that was definitely one of the problems as I had that. He refused, I insisted and this went on until I said I’d take her and get it done privately. She had got a massive underactive thyroid. But then all other tests ruled out lupus etc. At one point she was sectioned for an eating disorder which made her much worse as she didn’t have one and as I said to them- in 6 weeks you’ve undone everything we’ve spent our lives doing to keep her alive.

Sometimes you just wish they’d say, we don’t know but we’ll keep looking and we will look after her. Addisons was another thing she was diagnosed with, then not!

You might want to look at an organisation called Benenden. They’re not private healthcare but offer all sorts of services which we have taken advantage of. For £10 per month each you may think it’s worth it if you can manage it. I do hope you find a way through. My heart goes out to you. Nothing worse than seeing your daughter suffering and not being able to help. Xxx

JoG1975
JoG1975 in reply to marghay13

Thank you! I just feel very let down by people who are supposed to look after us! Our Gp refused on Monday to do any more tests on her and told me to wait till our next hospital appointment... untill I broke down in the room and said it was affecting all of us and that I was going to make a complaint to the GMC. She then agreed to do another blood test! ( whilst rolling her eyes 🙄) she was weirdly nice to me when she got the lastest bloods back and realised that we weren’t lying! And that actually bloods are still ‘not right’ in her words! Felt like saying ‘ no shit sherlock!’ She launched into saying I’m going to arrange an ‘urgent referral ‘ ... but just had a letter yesterday ( was actually amazed it was so quick 1 day after her calling me!) but alas it’s not that urgent as it’s not till the middle of June. Not being dramatic but she could be dead by then!! Makes me so angry that after nearly a year we are still with out answers. She’s my girl and I just want to be able to help her! So even if I have to sell our house and live in a caravan I’m going to pay private! I WILL find out myself. 🙂 I’ll also look at that organisation you mentioned thanks so much x

marghay13
marghay13 in reply to JoG1975

Stick with it. Sounds like maybe something has shown up. If you know who she’s been referred to it might be worth a call to their secretary to see if you can get an earlier appointment? There’s also an organisation called PALS at hospital who help look into making complaints. Can’t quite remember how it works but could be worth speaking to them? Ask hospital switchboard to put you through or look on website. They act to help you not the hospital! Hugs xx

LilyMistri2
LilyMistri2 in reply to JoG1975

So sorry to hear all this. Get a private appt with dr graham Hughes x

My sympathies! I have most of those symptoms and my blood tests, bar antiphospholipids, are always negative. For me its family medical history alone which has got me as far as a rheumatologist who finally agreed it was likely autoimmune. Until I got that far I was told my bloods were “inconclusive” despite sky high anticardiolipin.

Please don't focus only on autoimmune disease. Her having blood in urine on each urin test is a bad sign. She needs to see a nephrologist asap.

JoG1975
JoG1975 in reply to miccika1

Thanks, have made a private appointment now!

Got the ‘urgent’ referral letter in the post yesterday and she has an NHS paediatric appointment for 15th June!!!! What a joke!

Good job I’m paying private! Feel very let down by our health service as up till now no one has taken me or her test results seriously 😒

eekt
eekt in reply to JoG1975

So sorry to read what Izzy is going through - and you. The SLE guideline lists all the tests for initial assessment in Tables 5 and 6 - blood in urine, malar rash, mouth ulcers, alopecia etc. Four criteria are needed, one a immunological blood test (not just ANA).

Everything crossed that the private appt will move things forward JoG xxx

*academic.oup.com/rheumatolo...

sunshine16
sunshine16 in reply to JoG1975

Hope the private appointment goes well🙏🏽🙏🏽

Shocking that you've had to wait till June to see an NHS one

My bloods have always been normal despite a few episodes of low WBC yet I have Lupus (ana-ve). Its been enough to make me medically retired at 36.

Just one thought, has she been tested for glandular fever?

Hiya! Yes I believe so... and Lyme disease 😩 can I ask how you go your diagnosis? X

You say they will only give paracetamol for the heads aches. Well worth trying reflexology, I was getting migraines daily and was just about to do a dressage test and it was so bad that I couldn't get out the lorry let alone get on the horse. My friend did reflexology on my hands/ fingers as I was already to ride (they normal do it on your feet/ toes) Anyway it was the strangest feeling ever but it worked. I went for 3 yrs without a migraine and I've only had 2 in the last 7-8 months so it's well worth a try.

I hope you can get to the bottom of it and she gets back to riding soon. Some days my boys are the only thing that keep me going. When she is doing the horses makes sure she wears plenty of sun cream and uv protective tops (Ariat) do some nice ones. X

My wife was diagnosed with Lupus (SLE) 18 months ago but my son at the age of 19 came down with severe fatigue, brain fog, depression and loads of neurological symptoms. He was eventually diagnosed with chronic fatigue (ME). Both are now functioning and live near normal lives.

I can echo all the posts here and my family have progressed thanks to the advice and experiences of many on this forum - You now have the lupus army on your side stay with them.

From our experiences I would strongly suggest you seek an auto immune / lupus specialist. That is a medic who predominately deals with lupus or auto immune issues and not a general rheumatologist not matter how good. The diagnosis of auto immune is highly complex and involves not just bloods and urine but an examination of every part of the body - skin, hair, eyes, brain, heart, kidneys, feet/hands, joints etc to come to a conclusion. Is it not a scientific tick box exercise but an assessment of balance of probabilities and patterns of symptoms. A doctor who only deals with auto immune for a living is more likely to get you to the right conclusion quickly.

My thoughts are with you and your daughter.

I’ve always had normal antibodies too despite having had lupus for nearly 30 years. My rheumy diagnosed me on the spot based on a range of highly suggestive symptoms - low lymphocytes & neutrophils, low C3 and/or C4, intermittent joint swelling, ?malar rash etc. My new rheumy as of 2012 was less convinced and tried to de-diagnose me but a professor in Birmingham set him straight. Your GP will be out of his/her depth. You will learn to become the expert on your daughter and what should/should not be happening. I think I’m the only lupus patient on my GP’s list (most GP’s will only see one lupus patient in their career!) and she has only one Sjögrens patient too so she has learnt from me how to manage me

It must be devastating to watch your daughter suffer, I’m so sorry. A friend of mine has a 12 year old boy who is bed bound for the second year with what has been diagnosed as CFS and EDS. I’m so suspicious and cynical that I can’t believe that there isn’t more going on but they haven’t asked for my thoughts so I can’t give them 😟.

Wishing you all the best xxx

Well they have done no autoimmune related blood tests there they have only taken a normal range of blood tests nothing for specific illnesses.

I know initially they would do these range of bloods looking at kind of tired all the time kind of symptoms but now they need to look at more specific ones. Do not give up keep pushing. It took me a long time to get diagnosed I think I ended up getting seen privately by a rheum consultant initially aged 21 but u have to be firm as it's not a simple condition but if she is not right then there is something wrong and u and she know that best.

The blood in urine could just have been close to menstruation so unless that continued I could have been a one off but they should re check this.

Good luck but dont be fobbed off x

I dont know where u live but I know Bristol have good rheum cons x

JoG1975
JoG1975 in reply to Sara_A

Thanks Sara...yes I will keep pushing! As for the blood in urine ... she hasn’t had a period only ever had one and that was just before she got ill x

Thank you so much for your message!! I just feel so helpless. Had a private appointment yesterday at my own cost and came away feeling no better. Although he has at least said he will ask the doctor for more specific tests. He dismissed her Livedo reticularis as ‘ just a bit cold’ ( she had two jumpers on and a thick coat two pairs of socks , leggings and fur lined boots) and it was 16 degrees outside!! Ffs!

I really thought he would help! May as well have rolled the £200 quid up and smoked it!

But I will carry on! One interesting fact I did find out ... as I’ve now requested copies of all previous tests is that Izzy’s TSH levels in October were way over normal range and loads of other things not right with bloods.. but they sent her home saying she was ‘fine’ 😡

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