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HI everyone

I'm Gemma, 37 and from Leicester. I was diagnosed today with lupus, but I'd better explain why I'm confused (sorry if it's long!)

Diagnosed with underactive thyroid in 2003 - now feel 100% better on thyroxine. Had a DVT in 2004 - off to haemo clinic who put me on warfarin. Had several lupus tests, all of which were borderline or just positive - all the consultants agreed that my thyroxine would probably interfere with the test results. Came off warfarin after 1 year, then in February at my annual check they did a lupus test and the result today was 1.44. I'm sorry I don't know what any of these figures mean, all he said was that if it was under 1.1 I was fine.

My problem is that I asked him what lupus symptoms were and he replied "there are none"!! Having done some research today I see there are many awful symptoms, of which I have none! I wonder if a private second opinon may be in order, as I'm wondering if I should believe anything that this specialist has told me! He has also told me I will be taking Nicoumalon (sp?) as warfarin gives me terrible headaches.
TIA :)
 

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Hi Wemster and welcome to the forum.

I had a similar problem when I was diagnosed for Lupus (SLE) and antiphosolipid syndroms (APS). I was told that there were 11 criteria for SLE and you had to have 4 of the criterion to be diagnosed. I had 3 and they were stretching the one. I can't remember now. But my ANA was postive, pericarditis and I forget the 3rd. However, we were quite certain that I had Lupus. Then the rheumatologist at the time said that you had to have 4 criterion to be considered for studies, but not a diagnosis. You have to look at the symptoms and go from there. So, they treated me for Lupus (which was the right diagnosis). Slowly other criterion popped up (malar rash, mouth sores, etc.) but it is still serasitis (inflammation of the heart, lung and abdomen) that gives me the biggest problems. This doesn't mean that you guaranteed to get more symptoms later, but it can happen.

Also, you cannot rely on the blood work. I recently had a serious flare up, but my blood work was fine. Luckily, they treated me for the symptoms anyway. Several weeks later, my blood work is awful. For the APS, I tested positive the first time, negative the second time. You need two positives to be considered to have APS. However, my hematologist didn't do another test because in the end it didn't matter, I had to take coumadin (warfarin) for the rest of my life anyway because of my history of blood clots.

Unfortunately each doctor is different and yes you may have to seek another opinion. I believe that you have to look at the symptoms and not just the blood work.

Did they put you on any medications for Lupus?

Good luck and I hope you feel better soon.

Nutty
 

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Hi Gemma,

Welcome to the forum!

:welcome:

I can see why you are confused...Me too:hehe:.

Was it a rheumatologist you saw today or a heamatologist?

I suspect that what might be going on is that you have APS. This stands for antiphospholipid syndrome.

About 1/3 of people with lupus have this. It is a clotting problem, and if you have it it would explain your DVT. However most people wo have APS do not have lupus - they have APS only or along with another illness.

There are several blood tests which can indicate APS. One is called the lupus anticoagulant (because it was first found in lupus patients). The APTT is sometimes prolonged in people with APS, although this is not proof or necessary for diagnosis. The other test is for anticardiolipin antibodies.

Can you phone your specialist and ask for a copy of your blood tests? I can't say for sure but am wondering if the "1.4" refers to either an APTT or the lupus anticoagulant.

Either way the doctor is completely wrong to say that ther ae no symptoms, whether he is refering to APS or lupus, both cause clinical signs and symptoms.

Symptoms of APS are generally more "limited" than for SLE(a shorter list, not less serious). The most common ones are blood clotting problems such as a DVT, Pulmonary embolism, heart attack, stroke or TIA and miscarriages and stilbirths. Migraine headaches and some neurological problems can also be from APS.

You've already read about lupus symptoms so I won't elaborate.

Actually it is not really possible to have a APS or lupus without having signs or symptoms. Just having a positive blood test is not enough, although it is a good reason to watch carefully for developing problems.

Howver if it is the APS tests you are positive for you have had a clinical problem - the DVT, so you would meet the criteria for diagnosis. Also with the right anticoagulation there is no reason why you can't live the rest of your life without symptoms from the APS. Not everyone is so lucky, but it is certainly possible to have few problems after treatment is started. Maybe (just maybe) this is what the doctor meant by "no symptoms".

I'm reading an awful lot into your post here, which may be completely wrong, so don't take my word for it. I am just hoping I can give you a few pointers about what might be going on. You do need a doctor who at least communicated properly and takes the time to explain what is wrong with you. Can you phone and ask for more information - even if it is with the resident or a clinic nurse they might be able to answer your questions?
If this doesn't work and you are still left in the dark, yes do get a second opinion, private if needed.

Let us know how you are getting on.

X C X


.
 

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Hi Gemma, unfortunately I cant answer your questions as I'm newly diagnosed too.

But I can say that be wary of the dr's. If you read some of my recent posts you'll know what I mean.

Oh, and welcome to the lupy club :)
 

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Thank you both for your quick replies :) I'm starting to realise that the diagnosis issues are the same as for thyroid problems - i.e. the bloods don't mean much and it's the symptoms that count!

Nutty - I was only ever given warfarin, but today this doc said it was up to me if I wanted warfarin or asprin. I asked for asprin, which initially he said was fine, but he then disappeared into a room to speak to someone else and then he decided asprin was not the answer! This mystery person didn't speak to me so I'm not quite sure how they felt they could diagnose me from between the room divides :mad:

Cath - APS has been mentioned before, but each time I go I see a different consultant who has a different diagnosis for me! Thanks for the explanations - I'm off to my GP tomorrow for a referral to a private consultant and I ask for a copy of my results. I'm also going to speak to my thyroid specialist and see if he has any ideas.

Thanks again both - I'm off to do some more reading on this fab site now :)
 

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Surferboy;516752 said:
But I can say that be wary of the dr's.
Ditto what Surferboy said.

I was dx with MS in 2003 and treated for such for over 3 years.

Through out those 3 years my blood work came back fine and then just recently Lupus reared its ugly head and now I am dx with Lupus and APS.

I think I have had both for 5 years yet it never showed up in blood work until recently.

I no longer have the dx of MS or at least it is listed as possible MS and definite Lupus and APS.

The moral of this story is that regardless of what your blood work shows you can still have Lupus, APS or for that matter a number of other auto immune diseases.

Follow your gut and continue down the path to a correct dx. Once your there and on the right meds you will hopefully feel better.:wink2:

Nice to meet you.;)
 

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Hi Gemma

:welcome:

I really can't add much as I'm not diagnosed yet. Just seem to be having endless amounts of tests!

I agree with KarolH and you should follow your gut instinct and hopefully get the right dx. I wish you well and hope that you can get things sorted quickly and recieve the right meds.

Take care
Mrs M x
 

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Sorry if I'm being a bit thick.
Have you been diagnosed with lupus actually, or have you just got a positve lupus anticoagulant result.

The lupus anticoagulant is not a test for lupus confusingly but more connected to APS. Whereas there may not be symptoms to this.......you will certainly have a list of symptoms of lupus (SLE)

just wanting to be clear
 

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Discussion Starter #9
Hello again, and thanks for more replies!

I had a real struggle to get my thyroid condition diagnosed due to 'normal' blood test results, despite not being able to walk up the stairs, putting on 4 stone almost overnight etc etc etc., so I don't have much faith in 'specialists' as it is :worried: I was given the name of a consultant in Nottingham and one in Derby, but can't find any info on either of them and I need to make sure I find someone who understands my thyroid!

BigSis - I have been diagnosed with Lupus, or Hughes, it just depends on which consultant I see, but lupus was the diagnosis for this week :mad: My GP was surprisingly angry with the haemo clinic, and he told me to get a private second opinion, but he couldn't recommend anyone! He's not going to start me on warfarin or nicoumalon or whatever until I've got another opinion.

Thanks again :)
 

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Welcome to the forum Gemma!

I don't blame you for feeling confused. Lupus can be a very confusing disease, diagnosis can be difficult and doctors themselves can be confused and plain ignorant.
I strongly advise you to start taking control, first by getting all test results (making sure what they are when they are ordered) and then little by little learning what their significance might be, how they relate to lupus in general and your lupus or whatever in particular.

For example, there is no single lupus test: diagnosis is based on symptoms as much as blood test results. Of course tests can indicate conditions and symptoms that are not obvious to patient or doctor. It would be very unusual to get a lupus diagnosis without any sort of abnormal test results whatsoever including imaging, abnormal skin or kidney biopsy. The physician's expertise is all important in tricky cases.


So what was this "lupus test? I can't say, but in the context of bloodthinning, the INR test springs to mind. This stands for International Normalised Ratio and it is used when people are on blood thinners to make sure the recommended therapeutic level of decoagulation is being achieved. The norm is about 1. I don't know how abnormal 1.44 might be but most blood test levels vary from time to time just as the body goes about its regular functions.
However this is not described as a lupus test: it is used in all the circumstances that people require blood thinners.

Now, there are tests to measure blood clotting factors in the blood known incorrectly as the
" lupus anticoagulant" simply because these antibodies were first identified in lupus patients.
I will put some links to the tests that are in use for this condition. I don't know what the normal ranges for these clotting tests is.

A false positive VDRL (syphilis) test could be another indication

There's another range of tests for antibodies associated with APS called anticardiolipins.
This is more significant than the LA because these antibodies are rarely found in other conditions. Both tests need to be done at at least 6/8 weeks interval because either one can be negative at any given time. The need for repetition of both tests is particularly important for including patients in trials and research. Low positive is 0-15 IGg units, medium between 20-50, high over 50.

This group of antibodies are called the antiphospholipids. Their presence is one of the criteria for a diagnosis of lupus. I have read that about one third of patients with lupus have them but they can be present without any obvious associated symptoms. Obvious symptoms are strokes, TIA's, seizures, 'absences', DVT's and other organ thrombosis, arterial thromboses, recurrent miscarriages, certain movement disorders such as chorea. There may be more subtle symptoms such as headaches, memory loss and other cognitive impairment, balance problems
There may be symptoms very like some of those found in MS with spinal cord disorders with resultant misdiagnosis and wrong, even harmful, treatment and the right treatment neglected resulting in worsening that could easily have been avoided.

As many people have primary APS not associated with lupus as have lupus without APS. However people with PAPS might have other autoimmune diseases apart from lupus - thyroid and Sjogren's are especially associated with APS, according to Dr Hughes.

I don't think they know yet, why some patients with high levels of antiphospholipid antibodies suffer from them but others don't, but everybody with them can be assumed to be at greater risk. Smoking and using hormonal birth control or HRT could increase the risk and people with APS are generally advised to avoid hormonal intake.

Preventative measures are low dose aspirin a day, 75mgs in the UK, and if the patient has lupus they will probably be on Plaquenil which has slight blood thinning as one of its beneficial side effects so could be an additional help.
Clearly if the patient has already suffered clotting events the decision how to treat them is more complicated since the major blood thinners like Coumadin( warfarin) and heparin do have side effects. Different doctors will almost certainly have differing opinions.
Deciding if the patient also has lupus would be more complicated too I imagine.

I think a second opinion is an excellent idea and would even suggest a trip to see the top experts in London privately. Of course lupus has symptoms ! and you can't be diagnosed with lupus without symptoms, only the symptoms might not be very obvious.

Good Luck and please let us know how you get on :)

Clare

Main source, Dr Hughes, a "Patients Guide to Hughes Syndrome" 2001.
 

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Thank you so much for that Clare - that's really useful :) I decided this morning to take the bull by the horns and go for an appointment at the London Lupus Centre, hopefully to see Dr Hughes if poss - spookily he is on Discovery +1 right as this very moment, so that must be a sign! :lol:

Thanks again
Gemma

Just a quick update - I'm seeing Dr Edwards next Wednesday!
 
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