The reason I'm mentioning this is because I had a whole lot of tests late November - one of which was a positive ANA and was asked to speak to the GP in a non-urgent way.
For one reason and another (Xmas and appointments being booked up several weeks in advance), I finally got to see GP last week and I asked to see either a rheumatologist (because of my positive ANA and to rule out autoimmune illnesses) or a dermatologist (due to rashes and excessive sweats/hyperhidrosis). He decided to go with the rheumatologist.
Then I got a letter on Friday telling me to come in for more blood tests before I can be referred and because the ones I had in late November will be too old!! I wouldn't mind but he said it might take months before I can get an appointment by which time the blood tests will be out of date anyway. I just feel I'm being dragged in for more blood tests unnecessarily and I struggle to get into the surgery. Last batch of blood tests were a Full Blood Count, Thyroid, Hormones and ANA and a few others. Is it that they need to do different blood tests?
I am also worried about it taking months. Is it worth going privately and if so how would I find out? Would I then be able to go back to the NHS one if the private one made recommendations? I am so sick of bot being any further forward with the hyperhidrosis/dysautomonia after so many years.
Many thanks
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FoggyMoggy
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To be honest I’m not that sure that most rheumatologists would be much use at working out a cause of hyperhydrosis or autonomic dysfunction. They tend to focus on joints and swelling in my experience.
They might possibly say that this sits more under endocrinology or cardiology or vascular medicine. Or perhaps dermatology if rheumatology are refusing your GP’s referral.
But I do feel very much for you regarding the GP changing the goal posts all the time - it’s very unprofessional. It’s also nonsense that immunology bloods taken late November Ie 7 weeks ago are too old for a GP to make a referral.
On the other hand this procrastination maybe coming to GPs from rheumatology - I know this happens often and GPs find referrals being bounced back by specialists. It happened to me with ENT 3 times before I finally got to see one and most of my specialisms have discharged or threatened to discharge me over the years for one reason or the other.
Do you always get print copies of all your blood tests results? If not I strongly suggest you do so in order to be able to work out the reasons for repeats being requested - ie if your results are borderline etc.
I have to have thyroid bloods repeated on Tuesday because the phlebotomist failed to listen to me saying I needed full panel. I could really have done without this hassle of going back and they are always messing up through one hand not knowing what the other is doing. This is partly why I’ve had to become an expert patient and run my own healthcare to a great extent. I always insist on print outs.
Best of luck with getting bloods redone and extracting a referral from a GP. X
Hi Twitchytoes, very sorry for the late reply. I'm not getting notifications any more from HealthUnlocked so came in here and found a lot of replies!
But yes, it's rheumatology who are ordering more tests, they're not all repeats, mind and yes do always get my blood test copies, the ones they are asking forsook pretty standard. I did ask re dermatologist referral but to be honest I don't think seeing one will help my symptoms because I've been prescribed all the meds for hyperhidrosis and I have had endocrinology tests too.
Hope your blood tests went well, it is a pain being dragged in again. x
I have read multiple times that once you have a positive ANA, that doesn’t normally change. It may go up and down a bit, but doesn’t go away. For that reason, most doctors don’t repeat it. The only reason may be because it was a weak positive? If you don’t mind me asking, what was your titre? If it’s 40 or lower, maybe they consider it borderline. Either way, the next step is usually to take a panel of much more specific antibody tests, since positive ANA can point to about 100 various autoimmunes, or even cancer. Were any of the blood count results abnormal? If not, that’s probably why they want to test again, with another blood count panel and/or more specific antibodies. Blood count results can fluctuate quite a bit, and can also be affected by medicines, illness, etc.
Hi Momnprof, apologies for late reply, I wasn't notified by email as I usually am so I came back here and found I'd got several!
Yes, I am confused about the ANA. I've just had a look at blood tests again and the ANA was positive and the ANA Pattern 1 says it's normal i.e. nonspecific so no titre or pattern. This is all new to me.
But the tests the GP have ordered are just standard - I asked what they were, some of them are repeats: FBC, urea & electrolytes, liver and something else (I did write it down). But I guess the rheumy will order the more specific ones will he? I've found out it's an 8 month wait
Hi Foggy. I’d get the new blood tests. They will likely be reflex to positive ANA. They might be to see if you have any specific antibodies that are specific to any certain rheumatologic condition eg dsDNA for lupus, anti-ro/la for Sjogrens among many others. Based on if these come back positive, they may be able to prioritize your appointment. Otherwise, a positive ANA could mean many things and with this only being positive, your GP will be stuck with a not so strong case to see the rheumatologist urgently.
I think if you get rashes and they last longer than a week then you should be referred to a dermatologist for biopsy. If they are fleeting, a dermatologist will be of no use. This would also be another path by which you could confirm a rheumatologic diagnosis since rheum deals with connective tissue which also includes the skin.
Hope this helps! A positive ANA is worrisome but at least you know now. Waiting is hard but don’t worry yourself too much. Hope you find answers soon. Keep us up to date on your progress!
Hi Jmiller623 and as above apologies for late reply, I wasn't notified by email as I usually am so I came back here and found I'd got several!
Yes, I am confused about the ANA. I've just had a look at blood tests again and the ANA was positive and the ANA Pattern 1 says it's normal i.e. nonspecific so no titre or pattern. This is all new to me.
But the tests the GP have ordered are just standard - I asked what they were, some of them are repeats: FBC, urea & electrolytes, liver and something else (I did write it down). But I guess the rheumy will order the more specific ones when I finally get to see him. I suppose I could also ask for a dermatologist referral in the meantime as well! I'm not sure
No worries Foggy! Sounds like GP is just ordering generalized tests to make sure liver, kidneys and blood counts are fine. ANA patterns are specific to certain conditions - speckled, homogeneous, centromere, nuclear are some common patterns. With a normal pattern, I wouldn’t worry too much. I’d still get the labs done if it’s what your GP wants.
I think others have said this too but going to derm is a good idea especially if rashes are long lasting. A biopsy can also help confirm ongoing autoimmune illnesses. Keep a journal of odd symptoms you’ve been experiencing and take them to your next GP appt. We all present very differently.
Yes that's very helpful Jmiller623 , thank you. Yes ANA is marked as Pattern 1 - normal - cytoplasmic, if that means anything!
So do you think a dermatologist would be better than a rheumy? I don't think they'll refer me to both but I'm thinking my skin problems and itches, as well as the hyperhidrosis might be better served by a dermatologist.
I think dermatology would be a good place to start which echoes other responses to the post.
Cytoplasmic pattern is nonspecific. Cells are separated into 2 compartments - nucleus (holds your DNA) and cytoplasm (holds your protein making machinery). Compartments are separated by a nuclear envelope. So when you have a nuclear pattern, that’s pretty specific but cytoplasmic is nonspecific unless a clear pattern is recorded. I have both speckled and homogenous which is consistent with SLE.
I’d imagine with just a positive ANA and no other indications of lupus at this time pending repeat labs, getting a referral to rheumatology would be pretty tough. I’d ask GP to see derm first.
Thanks Jmiller623 . That really explains it well. So is cytoplasmic pretty meaningless? The thing is the GP has written the referral letter now for rheumy, pending more blood tests, and I do have conditions that would be helped by seeing a rheumy (possibly) - specifically Fibromyalgia and osteoarthritis and I do suffer knee pain (and periodically tendinitis).
I'm wondering whether I could ask to see a dermatologist as well? The two shouldn't be mutually exclusive. I think the GPs thinking was that the dermatologist wouldn't be able to move forward with the hyperhidrosis so the rheumy would be best to rule out any other possible Autoimmune illnesses particularly Lupus.
Can’t comment on ANA pattern since cytoplasmic could mean many things. I’d discuss with GP. Sounds like your GP is doing the right thing. I don’t think it would hurt to ask for dermatology referral while waiting to see rheumatologist. That way you’ll cover all bases.
Thanks Jmiller623 . I did try and discuss with the GP - he just said that cytoplasmic was more general and non-specific and didn't say much more than that. I may try and push to see a dermatologist but I bet they'll only refer you to one at a time on NHS if it's sort of about the same or related issues,
I agree with FoggyMoggy! I got diagnosed with lupus and sjogrens first by going to my dermatologist with no makeup on. She said it was clearly either lupus or dermatomyositis and labs and biopsies later confirmed SLE (and sjogrens by SSA/SSB and dry eye tests by ophthalmologist). It was the dermatologist who referred me to my rheumatologist. I also recommend taking pictures when you’re having a flare, since some days are worse than others. The more evidence you can gather, the better.
Thanks Momnprof . I showed my GP the photos of the rashes (I'd sent them to him by email) and he just seemed amused that I'd printed them off and then asked me questions about them as if he couldn't see them though I thought they were pretty clear! I am going to see optician's tomorrow so wondered if there's any particular tests I can ask for on the day or to book in future if they don't pick up dry eyes. The time before last they said they were dry but not last time. Thanks
Sorry you’re going through all this but to answer your question, yes it’s normal. I went through so many blood tests, scans, and labs before a diagnosis and I have read from many of us that it’s absolutely normal. If you think about the whole direction of things it makes sense. You don’t want your doctor recommending a lifetime of drugs if you don’t have the disease, so to speak. Autoimmunity has no cure currently and the only thing we have that helps are drugs (many don’t respond well to them anyway but that’s besides the point.) it’s difficult to diagnose because of so many overlapping symptoms. Many of us were diagnosed with one thing and doctors over time decide it’s something else. Whenever there’s no understanding
Of what causes a disease doctors really start living up to the phrase of “practicing” medicine. It takes time to build a case for what is going on with you. So expect many lab visits, scans, appointments, etc
Hi lotsoissues thanks. Yes, I know what you're saying. I have had lots of blood tests (usually at my insistence) but they never seem to be the right ones. I'm the ones who has had to fight for thyroids, Vit D repeats, Vit B12, Cortisol (in the past) and now ANA. They just usually do the routine ones and that's what they're doing this time before they'll even give the referral and I could't get an appointment for a month (as I like to go with a certain nurse and only have certain times of day I can go)
I agree with TT that the dysautonomia is not a condition a rheumatology will be able to help with much. I have UCTD. I am described as lupus-like and am told my dysautonomia is rare in lupus.
If you have other symptoms and the positive ANA, it sounds like your GP is doing the right thing to do further work up. A dermatologist could be very helpful with your rashes. If you are going to go privately, the dermatologist may offer the most at this stage because they can add something the others can’t. If they think your rash is from autoimmune disease or a biopsy confirms something, that sort of tips the scales.
Good luck with this. Are they treating your dysautonomia?
Hi KayHimm - I think I wanted to go to the rheumy or dermatologist mostly in relation to the skin because of the rashes but also positive ANA, plus lots of other symptoms as well as the dysautonomia/hyperhidrosis I have ME and FM. I think I want Lupus and Sjrogrens ruled out as it seems to be pointed to an autoimmune disease too. But I have learned that dysautonomia is part of ME and malfunction of the ANS. Does this not happen with Lupus? I have heard some people with Lupus (and in fact many illnesses with similar symptoms) present with excessive sweating but v complicated as could be side effects of meds or many things.
I'm having meds for the hypehidrosis but the side effects are horrid, are migraines and raging thirst and often they don't work if you take a lower dose
I'm from the other side of the world - but if you're tests do indicate lupus - then seeking out someone calling themselves a lupus specialist would be worth it. I have autonomic problems, POTs, slightly slow gut - etc. and have been told it's lupus induced. I've had the thing for 41 years though - with lots of unchecked flares which might be a factor for my stuff.
Rheumatologists - ' should ' understand this. Unfortunately a lot of them don't do the ' innards ' issues well. Tend to be obsessed with arthritis etc.
Thanks Freckle1000 . Yes very hard to get specialists here in the UK, it tends to be a rheumatologist and I've discovered that things have got much worse in ten years since I saw one last i.e. the long wait!
Yep…..its absolutely not good enough. (long delays to see Doctors and have procedures here too - Australia) I don't think I've come across a lupie who hasn't had massive delays in treatment also - me included.
A lot of people express relief to having a lupus diagnosis - and I understand when you've been unwell for a long time - all you want is an answer so you can get some treatment...…..I know that feeling well - but ultimately I'm hoping you don't have Lupus.
Just to back up the good stuff Wendy said about blood tests. The anti ds.dna blood test is a solid marker of SLE. It can turn up with a few other conditions - but its the key one specialists keep an eye on for me.
I'm not a wealthy person - but I've had to dig into hard won savings to see private specialists. Its been 'mostly' worth it for me.
Trust what you're body's telling you and act if you feel very unwell. Sometimes its harder to know with autonomic problems - but you would definately know you're own patterns.
It might be worth asking people for some specialists names here.
Many thanks Freckle1000 . Yes my anti ds dna were negative, just this ANA that's positive. I was relieved when first diagnosed with Fibromyalgia but feel there's little treatment for that and also people find that that diagnosis can be wrong. I also have a diagnosis of ME too - again that is so often wrong too and no treatment - yet. But I do what to rule out any autoimmune illness. X
You're doing the right thing. Fibro and ME can muddy the waters and you definately need to check these things out.
Its terrible that more isn't known about the causes of Fibro & ME. so there could be propper treatments out there.
I'm not terrifically fond of the fibro diagnosis - I got stuck with that one 15 years ' after ' I was diagnosed with SLE - which was technically impossible. It well and truly got in the way of my lupus treatment - but for me I had the misfortune of having a Rheumatologist that, without my knowledge - was studying the links between lupus and fibro. To say he was a tad evil with his research methods is an understatement and I paid the price. What made it worse was when I eventually saw his research online I discoved he was also a very high IQ sexist 🤬 who's idea's about women with fibro were abhorrent. He favoured the word ' neurotic' and - cluster of personality disorders.
Just be a bit aware that these attitudes can be wrongly attatched to Fibro by some in the medical profession - at least here in feminist Australia 🙃.
I get the impression ME has less stigma ?
Anyway - apologies for rant. Been a tad jaded by my experiences.
Thanks Freckle1000 . Yes, there's a lot of bad press and attitudes about Fibro, which I've come across. I actually pushed for the confirmation of it myself as I'd not heard of it much before my diagnosis and it seemed to confirm all my symptoms so it was a relief when I knew there was a name for it. But at that stage I had little experience that there were so many other conditions with overlapping symptoms.
ME has actually had a very bad stigma and FM seems to have replaced that. People still don't believe ME and FM are 'real' and hence sufferers tend not to either because of what you rightly say is systemic sexism (since more women are diagnosed than men). However, there's a school that says FM and ME are part of the same thing (hence why they both get a bad press). Weirdly I have only been recently diagnosed with ME (again as a response from my pushing for it) but I think I have had it for years.
Recently I have been sent details about a saliva study (?) due to look at markers for people with ME but they are waiting for funding. I certainly think if there was proof of more objective scientific evidence then people would start to take it more seriously. So many people do get the wrong diagnosis first time and of course it's possible to have more than one condition.
But yes, I can see why you would have such a downer on that rheumy! The only rheumy I saw said he didn't think I had Lupus (this was ten years ago) but he never tested for it!
Well done for at least trying participate in some ME research. Its just so unfair that proper biological research into these conditions are just so hard to get off the ground.
I agree that ME morphed into Fibro over time. That was my diagnostic path with my not so nice specialist.
I believe ? -Fibro claims - sore tendons and muscles, along with the pressure points and fatigue etc. - hence the Rheumatologists. It might all come down to definition of diagnostic criteria ? -(or in the case of my negative experience - the social construction of diagnostic criteria) Of course sore tendons and muscles come with Lupus too. I had one GP trying quite vigorously try to get fibro tender spots on me to go into pain - and I wondered what the hell she was trying to do.
I'm glad you're aware of the stigma out there. A good way to gauge the mood on the ground is to ask any random Doctor you come across - preferably who isn't aware of you're ME and Fibro and ask them what they think it actually is.
I did this with a nephrologist once with the fibro and got the - 'its just a cluster of a certain kind of psychological problems'.
Thanks Freckle1000 . It's a minefield, isn't it? There are so many conditions that have similar symptoms that I guess most GPs even with the best will in the world just don't have the expertise. Fibro does seem to be the 'go to' diagnosis now. But I have spent years trying to see if it was my thyroid (not just the TSH that they do on the NHS) but my results all come 'within range' so I decided although my thyroid levels might not be as high as they might be that they're not low enough either to be major problems. (UAT means 'high TSH' is the problem though mine has never been high). Then there's MS, Cushings' Lyme Disease, EDS, Sjrogrens, and many more each with symptoms of fatigue and pain that it can take years to get to the root cause even with the most dedicated GPs - since they also really on a decent rheumatologist (or dermatologist or neurologist) who they refer you on to!
I'm really sorry though for the appalling treatment you've had - the worst thing is to be told your symptoms are 'psychological'. In any case, I have always maintained that any mental health problems I have suffered are actually very physical and probably have a physical cause!
I know this can be a daunting time, a diagnosis pending, knowing it will take months and it playing on your mind 24/7.
My thoughts would be, unfortunately there is no 1 blood test for lupus. It's a case of testing for lots of things and ruling things out, as much as anything else.
For example, I was tested for thyroid issues, anaemia and diabetes etc, along with the other tests you mention. Complement 3 and 4 are also tested.
I had quite a few bloods done at my GPs. But then at my first NHS appointment 4-5 months later, she also ordered a lot of blood tests too - 8 tubes were taken.
Lupus is very tricky to diagnose as you already know. The Rheumatologists generally are looking for blood markers as well as looking at your symptoms.
Do you have photos of your skin rashes etc? That may be useful.
There have been posts here before about to prepare for an appointment with a Rheumy. So, taking an A4 sheet with your current diagnosis, your current meds and your unexplained symptoms. Take two copies. One for you - in appointments we all get brain fog and forget important issues that we want to discuss. One for the doctor - to make sure they ahve it in black and white - they are only human too and can forget what was discussed in the appointment. I do this and my notes are added to my medical records.
Another thought, once you have a positive ANA they usually test for the ENA panel - did you get any positives on that? For example, I was ANA positive and then under the ENA panel I was Anti-RO positive. They only do the ENA panel if the ANA was positive.
Finally, I knew that I couldn't wait to see the NHS Rheumy in 4-5 months time. So I went privately. I thought I had picked a good rheumy. But now with hindsight, he was a general Rheumy who specialises in RA like most of them seem to. I would never go to him know. He diagnosed me with the wrong type of lupus. I got out on hydroxychloroquine and that was it. I got stuck with that diagnosis until April 2017. I was then again very ill and desperate and this time, because of the advice here and reading LUPUS UK publications, I went to the London Lupus Centre and saw a lupus specialist who told me I had SLE and had done all along.
Make sure that you get a copy of your blood test results, in full, so that you can check these out yourself. Come back to us here if you can't work them out.
If you have any more questions, please ask.
It's such a worrying time and we've all been there.
I hope I've helped a little.
I'm sure you'll get lots of great replies and tips.
I have since found out that the blood tests they want to test are just routine because the rheumy asks for them i.e. full blood count, urea & electrolytes, liver and something else which i forget but it was nothing to do with ANA! Yes my ENA was negative.
I did send photos of my skin to my GP and also printed them off in case they didn't get through but he didn't seem overly worried, just seemed slightly amused that I'd printed them off! I could see the redness perfectly but not sure he could.
Yes I have found it is an 8 month wait after referral and for one reason or another I won't be having the blood tests until end of next month so 8 months from there takes me to October I did ask about private and the GPs secretary did say to me that if I went through the private hospital they had the letter all typed out for my referral so once I have done my blood tests I can go down that route if I want for a consultation (that would cost) but not sure if he or she ordered any mor blood tests whether I could link back into the NHS.
Thanks again for your insight and very sorry to hear that you had such a rotten journey getting to your diagnosis but glad you found someone good in the end at least x
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