my 13 yr old daughter has low iron, low blood pressure and many symptoms of lupus Inc facial rash which Drs ignore.
After being told her results were fine I obtained a copy of blood n urine. Protein+ in urine, red blood cells 10-50/ul in microscopy, (anything over 3 is abnormal?) Potassium 5.5mmol (3.50-5.00). Her creatinine is at high end of normal. Should I be worried that the Drs are ignoring protein in urine and microscopy blood with no infection found.
she is unwell on a regular basis and no longer wishes to go to Dr when ill as she is told its a virus etc and has given up expecting them to help her.
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roubyroo
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Hi roubyroo, sorry your daughter is poorly when she should be enjoying her youth. Whilst I can confirm that, low blood pressure, iron, are consistent problems for me, they are not conclusive of a diagnosis of lupus. The facial rashes and creatinine are pointers, as are the feelings of being unwell. I would ask your GP to refer her to a lupus rheumatologist for further investigation. Change your GP if current one is unhelpful. Lupus is diagnosed by a physical exam as well as blood tests, but only a rheumatologist, (lupus trained), will do this. This may seem a big upheaval to change GP, but your concerns for your daughter are valid reasons to do so. The private route is another option, but it can be expensive. It can be a long journey to diagnosis for any illness, so to speed things up, you may have to consider these options. Let us know how you get on.
thanks for your reply. I posted a few days ago about the situation I was in whereby I'd been misdiagnosed twice and then saw London rheumy who said mild lupus/uctd on 20 yr symptoms and blood/urine. He was awaiting lung cat scan results. Dr who misdiagnosed me contacted London rheumy and my dx was retracted and he said he didn't need to see cat scan results then discharged me. I'm a problem that they're trying to get rid of.
My daughter has recurrent swollen glands, muscle pain/spasms, swelling of face and abdomen. Sore red eyes, pressure in eyes/temp vision loss, nausea/vomiting, pain in different parts of stomach, back pain, mouth ulcers , nail loss etc.
when she was seen at Liverpool recently, she was seen by the wrong Dr (on purpose I believe) who wouldn't discuss lupus then asked if she'd been dx with chronic pain before?? This is after I showed him 26 photos of physical symptoms.
When bloods tests were done, the nurse said they were basic blood s without kidney function test.
I think lupus is very hard to dx wen Drs arnt doing the relevant tests after I had been promised she would see an autoimmune specialist
the blood results from gp show she's at the top or bottom of ranges for things like total protein, creatinine, white cell count etc.
my only option for an unbiased dx will be to go private as all it seems to take is a phone call to stop anyone helping us.
Hi just a bit confused here but what are routine bloods - as far as I know they are fbc, lft, U&E, glucose, TFT and often esr. Even rheumatology blood reviews are U&E and fbc. So I'm not sure what bloods they where taking?!
I just wrote what I would take when I don't know what they specifically want. Usually they will request other things such as ck if you have muscle pain and/or your on a statin. Kidney function is routine in our bloods as its a constant thing we look for. As well as diabetes and thyroid problems. The reason I asked was to see if anything else they classed as routine. Maybe they where talking routine antibody/ connective tissue tests if it was the hospital. Their routine would be different to me in a GP practice. It just didn't make sense to me. Tatt bloods are the ones I mentioned. where as rheumatoid factor, ANA etc have to be added as specific requests. It seems quite a worry that they didn't add U&Es in considering the risk on kidneys, you know where I'm coming from?
I get my eyes opened on here. I don't consider myself to be much good any more at the job. I burnt out years ago and now I have this Lupus but i do try and maybe I'm not that bad compared to what I read here !
The problem is that doctors are unwilling to diagnose lupus on symptoms alone. I'm still waiting for a diagnosis and I easily meet at least 6 of the diagnostic criteria for lupus, and have a reasonably high ana but because the rest of my antibody tests are normal, they refuse to diagnose me. I know people in America who have been diagnosed on a lot less. Here they will happily ignore the blood and protein in my urine, the clear Malar rash, the extreme photosensitivity and a positive ana because every other blood test is either normal or borderline even though the guidelines say you don't need another antibody for diagnosis.
I haven't a definite diagnosis either, they just say there is a connective tissue disease but its evolving. It was a strange experience being confirmed that it was a disease, that they agreed, i wasn't mad and I cried in relief that someone acknowledged what I was going through was real. Not that it's made any difference to my life.
I'm not surprised that the docs are reluctant to give a diagnosis because once you have it it is hard to remove it especially for insurance purposes. In fact I gave up on life insurance until I got a better idea how to answer their questions. I failed to renew my original one with NFU 2 year ago.
Saying that though are you not on meds? I was started pretty quickly after my second OPA and I think I have less symptoms than you. Initially I started on hydroxy and pain killers. Now I've started methotrexate due to the pain in the ankles feet and the knees.
All I can say is persevere. Docs can be very dismissive, I know, I've had to put up with it for nearly 20 years working with and for them. But behind their manner they are trying to work it out for you
I'm on no meds at all, they literally refuse to treat me except to throw coedine at me (I wont take it, it doesn't really help). I just try to avoid my known triggers (like the sun, and caffeine) and hope that i get my diagnosis eventually. I can totally understand that feeling of relief when someone acknowledges that it's real - you aren't mad. I've spent so many years wondering if I am imagining it, and then on really really bad flares, wondering if I'm dying (so bad I couldn't even sit up in bed and breathing was a struggle), all I want is a diagnosis, so i can start trying to get the symptoms under control. One day! I believe I will get it one day. I hope you get a more definite diagnosis too!
there are two points to consider here. 1st going private. If you go private for it to be diagnosed then you can not get treatment on NHS ever. You will have to pay for every bit of treatment. I went private for a torn tendon and as it has now torn again (due to auto immune disease ) I can not go NHS on it. But when the other shoulder tore and my Achilles snapped that was fine as they were not done private in the past. 2nd the blood test. My liver is showing that it is swollen. This is because my bloods are above the top end of the range. BUT if you talk to the doctor they will explained that the environment we live in can increase/decrease our bloods. There are lots of factors that can affect our bloods on a day to day basis. Tomorrow they could be normal. Try to trust the doctors as much as you can because they have trained for a long time to get to where they are. I always feel that if we push them towards what we feel is the right diagnosis they could end up missing something very important and misdiagnosing us. Hope this does not go against the grain to much.
When my daughter had blood s done at alder hey I asked the nurse what they'd taken.. She said basic blood s. I asked if kidney function was being checked and she was surprised and said no. alder hey. appt was after gps appt when she told me my daughter's urine analysis had come back fine (which it hadn't, it showed blood, protein with no infection.). The only time alder hey Dr was stuck for words was when I asked him how does he know my daughter dosent have lupus. He eventualy replied it would have shown itself by now. They're not going to find anything wrong if there not even checking her bloods thoroughly which I now think is the idea after my 2 complaints.
My gp has lied to me several times re ' normal' blood results and was quite annoyed that out of hours Dr gave me steroids. When results came back from this appt it showed ESR 38, high pv and blood n protein in urine. Gp told me over the phone they're was no blood in urine wen he had the results and I didn't at that time. My gp has consistently ignored my symptoms etc for 14 yrs and always maintained nothing wrong. No lung function or cat scan results after 5 mths either.
I don't trust Drs now after finding out through medical records that I've been lied to/about for years.
my eldest daughter (26 yrs), went to a&e at Carlisle in Feb after vomiting blood up off her chest, she was fobbed off and treated appallingly. They've just found large lump in her neck now which is to be investigated.
I feel caught in a situation where it only takes a phone call from one gp to another to say I'm a problem patient (because of previous complaint) and then it's another Dr saying you're the problem which backs them up.The rheumy in Carlisle who misdiagnosed me rang London rheumy and my dx was changed from lupus then retracted so my suspicions of this are justified.
I see gp next week soI will be asking questions re my daughter's results and lack of cat scan results.
As my friend says, if you hit an obstacle, go round it not through it so I will keep pushing them.
after I've been denied help or treatment for 20 yrs I won't let them do the same to my daughter.
Please change GP. It's worth a go. I've not been on here very long but I've read a few times that new doctors have had different points of view. Not all gp's agree with each other. Some definitely do not get on with each other and I'm not sure they are NOT allowed to write anything regards personality. I thought that was unethical. Years ago we where told to stop writing things in our notes like that. Even things like - lovely lady etc
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