Newbie looking for help: Hi everyone, I’ve been... - LUPUS UK

LUPUS UK

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Newbie looking for help

Leenie0811
Leenie0811

Hi everyone,

I’ve been back and forward from my doctors for the last year having various blood work done but after today’s consultation I thought I would post on here as it’s the first time I’ve been given some indication of a condition. The past 3 blood tests (last 8 months) for my antibodies have down positive anti nuclear antibodies (not sure of the exact levels) but it’s been consistent.

I have a variation of symptoms which seem to match what the NHS site lists for lupus here are the ones I have:

Skin rash across nose and cheeks, Anaemia, Fatigue, Feverish, Swollen Glands, Light and sound sensitivity, Sun sensitivity (hot days), Brain fog, Joint pain (hips and wrists), Poor circulation in hands and feet along with some others but I can’t think of them off the top of my head.

I feel like my doctor is repeating tests and I’m not getting anywhere when I was asked if lupus was in the family I couldn’t answer for my dads side as I’ve no idea, he died nearly 6 years ago and weren’t the type to talk illnesses if you get me. Please could someone help me out? My employer seems to understand then get annoyed when I don’t get a diagnosis as my sick record mounts up I’m scared to lose my job.

Thanks for reading

Leenie x

17 Replies

Hello Leenie0811

From your description it certainly sounds as if you have symptoms which would meet criteria for a diagnosis of a systemic autoimmune disorder - and lupus/SLE would be a good candidate. It's not clear from your post whether you've been seen by a rheumatologist or just your GP/family doctor? In any case, it would definitely be worthwhile getting copies of your blood results (and any other investigations or assessments you've had). That would make it easier for you to demand a specialist referral and a more definitive care pathway. At the very least, it sounds like a rheumatology opinion is essential.

Most of us here have found our route to diagnosis long and frustrating. Do stay in touch and let us know how things progress (or not) x

Leenie0811
Leenie0811 in reply to whisperit

thank you for the reply, unfortunately this is one of the GP's at my practice who is doing the tests and it seems she isn't really keen on putting me through for a referral just retesting my antibodies, although the next set of tests she wants to do in June I think she wants to include inflammation. The doctor asked if SLE ran in my family but I didn't know what it stood for after googling it and finding this page I just felt really lost in what to do next.

Do you think I should make an appointment with the GP again to push for a referral to the rheumatology department? I had a similar experience in my local surgery when I was struggling for an endometriosis diagnosis. Fortunately with help from this site I was seen and operated on. When you're in the midst of appointments and symptom noting I do find hard to explain to doctors as they thought this was due to my endometriosis. Since surgery there's a clear indication when my endo symptoms are present which I've explained to the GP this time, just so thankful for the advice here and support x

whisperit
whisperit in reply to Leenie0811

Yes. My approach would be to insist on having the actual numbers from your blood results (especially the ANAs) either in a new appointment or before one. I can understand why a GP might want to repeat a ANA if you had just a one-off rogue result. But after 8 months, if you still have a clear positive, in addition to the other symptoms you report, it would seem inexcusable not to refer. Go to the appointment with the LUK leaflet and point out with conviction that your symptoms meet the diagnostic criteria - or at the very least, justify a specialist opinion. lupusuk.org.uk/wp-content/u...

See a different GP if you are not completely satisfied with the response you get or if you aren't confident that she will listen to you. x

Leenie0811
Leenie0811 in reply to whisperit

I have called to have the repeated bloods they have booked me in for 20/5 so I am going to make another telephone appointment to get the information from the last 3 blood tests. As far as I know they have done full antibody profiles October, December and March/April. When the nurse practitioner called me regarding the latest ones she said the Anti-Nuclear Antibody was positive across all tests done. The investigations were originally started by a locum doctor, the GP I am seeing now isnt my usual one so I think I am going to go back to him as he knows all my history etc. Thank you for the leaflet I'll take it to my next appointment x

Hello Leenie,

Welcome to this really helpful site. Whisperit has already spotted what I was going to say while reading. If you are not seeing a Rheumatologist, you need to be referred sooner rather than later. If this is your GP running tests, they should have referred you by now. So do ask for them to do so. If this is a Rheumatologist though, then perhaps they have their reasons for holding back, but I think it's more than time for you to ask what treatment you will be given. Maybe that's a way to get some action without feeling like you have to surrender to what is unknown.

Even if this is not clear Lupus, you will still be treated with pretty much the same medication. I have Undifferentiated Connective Tissue Disorder, rather than Lupus, which took 2 years to diagnose; and others have various connective tissue diseases here, so we understand the terrible time of uncertainty while suffering at the same time. Hoping you get some treatment or some reasons why not very quickly. Meantime, we're here.

Panda x

Leenie0811
Leenie0811 in reply to panda2

Hi Panda,

Thank you for the information I really appreciate it, when I went to the GP they did say when you get the fever etc. what do you use and I replied paracetamol so they did suggest a low dose ibuprofen to see how that helped as it could be inflammation causing the symptoms. I am going to call my doctors to see if I can arrange a telephone appointment as after looking at SLE and the symptoms I do have a lot of correlations which really need to be looked into. I know its wrong it takes so long to diagnose illnesses these days but I am thankful it isn't just me, reading other stories on here lot of others have had to wait such a long time x

panda2
panda2 in reply to Leenie0811

Yes, this is awfully frustrating. I do feel for you. Some GPs do referrals straight away, some don't. When my symptoms first flared up my GP was on a 3 month sabbatical and the other GP in my surgery would not even order the antibody test. I had to wait for mine to come back and then finally we were away. By then I was having neurological symptoms too, so she ordered the ANA and referred me to Neurology. I did a one-off appt privately which was the single most important appt in my journey. He referred me to Rheumatology on the NHS and basically said, "You have either SLE or something similar and/or Vasculitis." Turns out I have UCTD and Urticarial Vasculitis. We're still working on getting the meds right, but at least I'm under proper care.

One thing you can do is give your surgery a ring and find out the exact titre of your ANA test. If it's a low positive, that could be why they are dilly-dallying. It's possible they have ANA levels for referrals, but these should be over-ridden if you have a number of other symptoms as well, as you clearly do... Has the GP seen pictures of your rash? And how you react to sunlight? Pictures help a lot. And you'd want to have these to take to a Rheumatologist eventually.

Normally, if the ANA is positive it gets sent straight to a further lab (no GPs involved) which tests for ENA antibodies. These antibodies help pin down different diagnoses within the connective tissue/auto-immune diseases (like SLE, Sjogrens, scleroderma, mixed, etc). None are clear cut answers, but some results can indicate a direction and that is when you will/should be treated through Rheumatology. Could there also be this pause because they are waiting on ENA results? They can take a month to 6 weeks. But you did say 8 months ago.. So that's why I'm wondering on the titre of your ANA.

Maybe ask for a different GP to weigh in if you're still getting nowhere after you know what your ANA result was. Lots of luck with your surgery calls, etc!

P x

Leenie0811
Leenie0811 in reply to panda2

I don't know the exact levels but my partner has taken some pictures of when I've been feeling bad so we have some for the next appointment, it feels like an awful lot to do in order to get some kind of referral. I'm not one to make a fuss really but it is getting to desperate times especially with work asking questions about my absences.

As far as I know I have just had the antibodies but no further lab results, each time I've had a blood test done I just get a phone call from the Nurse Practitioner saying I have positive ANAs and its been consistent since the first set of bloods in October.

Like I said to whisperit this doctor hasnt seen me until the locum doctor who originally did these tests passed them on to her, I am going to try and get an appointment with my usual doctor. I really hope that will move things along, I don't know how much longer I can take the unknown x

Hidden
Hidden

Aother posibble culprit might be Sjogren's Syndrome (also treated by Rheumatologist) There's Primary -and Secondary (which usually accompanies another autoimmune disease such as RA or Lupus. Hope you get a referral soon either way.

Leenie0811
Leenie0811 in reply to Hidden

Thanks for the heads up, do they have similar symptoms? I'll have a look and do a comparison to both with the symptoms I've given my GP. It really seems as time goes on its harder to get a diagnosis these days, but we must keep hope. Thank you again x

Hi Leenie,

I really can hear what a tough and anxiety-provoking time this is for you. I agree with the others’ excellent comments about the possible reasons your GP has not referred you to rheumatology yet. I would add a couple of things. Although these months seem like an eternity, it is clear your doctor is on top of things. You seem to have clear cut evidence of some disease process. I remember from years ago, when my GP was doing work-up, his concern about the anemia. In addition to the anemia, you have fever. The proposed new classification for lupus includes fever because this seems to separate patients who mimic lupus. Your diagnostic tests may be unclear at this point, which is why your doctor is waiting. That does not mean he/she is not watching for other symptoms! Do not hesitate to report any new symptoms. Ask questions. Remember you are the most important person right now. If your sense is correct and your doctor is suspecting lupus, he is taking this very seriously. It is a challenging diagnosis that a generalist will not have an occasion to see often. Tests have actually become much better over the years. As hard as it is on us patients « watching and waiting » is often what both GPs and rheumatologists do. I was followed by both until a diagnosis was made. I have a feeling you may be referred soon, though, with your fever and anemia and other symptoms.

Wishing you the best

K

Leenie0811
Leenie0811 in reply to KayHimm

thank you so much for the information, its really good to see that my doctor is going in the right direction. The information about anemia and fever is really useful too, knowing that there's a link between them i'll make a note of that for my next appointment. Every time I get a new symptom I keep a note of it, one doctor suggested buying an electric thermometer to record when I have a fever. Would you think that's worth the investment?

Thanks again x

KayHimm
KayHimm in reply to Leenie0811

Definitely. My doctor used to have me record temperature daily at times. Take it at the same time every day and record it. As Panda suggested, take photos of your rash. Try to think of it as your doctor trying to fit together the pieces of a puzzle. Any information you have is helpful. Don’t hesitate to ask questions here. There are many knowledgeable people who know what you are going through.

K

panda2
panda2 in reply to KayHimm

I second that. You can get a cheap thermometer at Tesco's. Pretty much every evening between 6 and 8pm I would get a low grade fever. 37.3 -37.9. I would get a little hot feeling right before and started to know exactly when to check. Sometimes I would check 5 or 6 times in a row because I could catch it actively climbing and/or descending that way. That is a sign the body thinks there is infection and is trying to mount a response attack. It doesn't go way up because there isn't an infection (usually) and this can indicate that you have an auto-immune disease that is active/brewing. It of course could indicate other things too, but your picture, as Kay is noting, is definitely getting more clear.

What can be the hardest thing to get your head around at the front end, and you've already spotted it, is that you do actually have to do a LOT of work yourself. Someone posted on here a year or so ago after attending a Lupus seminar that the average GP has only one Lupus patient in their entire career. So based on that, many could be working in the dark and so we have to guide them until you get in the right hands, at which point you'll still have to monitor and take pictures (I take an entire scrap book and list of worsening and better symptoms every single time to Rheumatology still.) At this stage you have to prove something is wrong, not in a general way, but a very specific way. with the pictures and doing everything the doctor says and more. Like bringing in research and saying you are part of LupusUK and so you are starting to understand what you might have based on responses and experiences of others. Once they see how proactive you are and also how life-sucking this is for you, having to miss work and everything else (*cue tears), there really has to be a response.

You could also straight up ask your doctor for a referral. If they say no, ask why. And come back and tell us why and we'll help you figure out what to do next.

Wishing you strength to power through this Leenie.

Panda x

panda2
panda2 in reply to panda2

Apologies, just realised I put in the wrong fever temps. It was in the 37s, not the 36 degrees. Have just edited to correct that.

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Leenie,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK Contacts who you can chat with over the telephone. To download or request our free pack, visit lupusuk.org.uk/request-info...

A 'positive' ANA result usually indicates that a person has an autoimmune condition. An ANA test is not spefic to lupus. To find out what criteria and tests are needed to confirma a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag... . You may find it useful to print this article and show it to your doctor when explaining why you would like to be tested for lupus.

Skin involvement, flu-like symotoms such as night sweats, chills, extreme fatigue, light-senstivity are all common symptoms associated with lupus. Below, I have included some information links which you may find useful:

Brain fog: lupusuk.org.uk/coping-with-...

Faitgue management: lupusuk.org.uk/managing-fat...

Lupus and the skin: lupusuk.org.uk/wp-content/u...

Pain management: lupusuk.org.uk/pain-managem...

We have a range of publications on lupus and certain topics such as light-sensivity and the feet. To read our factsheets, visit lupusuk.org.uk/publications/

If you are unsatified with your doctor's performance you do have the right to request a referral for a second opinion. To learn how to do this, read our blog article at lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

Hi Chanpreet_Walia

Thank you so much for all the information, I'm going to take the time today to go through this and make sure I can fully understand/get a clear picture before going back to the doctors. Like I said in the previous replies I do have another set of bloods at the end of May so hopefully I can gather enough evidence with the information you and all the other responses on here have kindly given me to get the most out of the next appointment x

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