After all the rollercoaster I've been through and I still am had the well waited app , I won't say with who , however I have been dismissed and concluded that I suffer from anorexia nervousa...my bloods are all negative and imaging tests are normal although I have all symptoms . I have lost weight and been losing, but without trying...I'm very lost atm ...
Speechless...London Bridge appointment - LUPUS UK
Speechless...London Bridge appointment
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Theodora23
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😬 it might help disclosing who your appointment was with?
It’s not a way of naming and shaming in any way shape all form but there has been some mixed outcomes from this hospital. Some specialists use a different approach than others and when you say your bloods are all negative, do you know if you’ve had the full panel of bloods taken ?
X
It was with ***** , I has anca/ana and all other vasculitis/lupus related bloods negative.
It may be worth asking Buckley123 her experience with this same hospital. She has had 2 very different outcomes. Did this hospital do your bloods or were they blood results taken previously?x
No I went with my recent blood in but was only FBC nothing else and my symptoms and all tests results
Hi,
I had a look at your previous posts and see that you have angiodeoma and urticarial rashes. Has anyone checked your complements ( C3, C4 and anti C1q )?
Theodora23 in reply to
No I dont think , been from suspected vasculitis, systemic mastocytosis, lupus to this ...
in reply to Theodora23
There are 3 different types of urticarial Vasculitis that can cause these types of symptoms. They don’t show up on normal blood tests although usually if Lupus is being considered the complements are tested ( C3 and C4 ).
vasculitis.org.uk/about-vas...
You don’t say where you live, have you seen any NHS Consultants? Do you have a copy of all your blood test results and scans? Have you taken photos of rashes, oedema, swelling etc?
Buckley123
Got it , I ve messaged her , thank you
Hi. Do they know that 10% of people with lupus have ANA negative lupus? openaccessjournals.com/arti.... It's called seronegative lupus
If you meet atleast 4 of the 11 internationally accepted criteria, you have to be diagnosed. The ANA blood test and the other bloods only make up two of the 11 criteria. How many symptoms do you have when counted against this list (American Rheumatology society)? They need to consider weight loss too! I am still fighting for a diagnosis for my daughter. At least we have moved from its "all in your head" to maybe a subset of lupus like vasculitis. I am taking her to the Paed lupus centre of excellence in Liverpool now as she has 17 symptoms. From the 11 international criteria she meets 5 (only needs to meet 4 so it should be an open and shut case?) and she is ANA negative. 3 symptoms relating to active lupus too. I actively disagree with them in consultations and now my GP is on board and the rheumatologist is listening as I quoted every medical article under the sun to back up my assertions. Delay leads to damage and I keep reminding them. I am moving her to the Liverpool paed lupus centre of excellence now. There are other lupus centres of excellence? Cambridge and Lupus UK has the list. Don't give up. It's hard I know. I've been at this for 9 years with Danni.
Thank you , I have all symptoms...I fit in the picture but with negative imaging and bloods ...its horrible and my husband was with me and I feel ashamed that it came out with this...I've been suffering for so long and I still am , I know it's not me and something is going on and from it's all in your head have some antidepressants to this it's a bit too much...
I believe you. I think it's ridiculous. I am so sorry. Fighting with clinicians seems to be the norm with lupus. You can't give up. Read and quote articles to them to get their attention. That's the only way anyone listened to us. All these symptoms are not coincidental. They are supposed to consider weight loss as one of the symptoms and they do this to you? Go to another centre of excellence and try and find out which clinicians are not close minded. Make a list of your symptoms against the 11 criteria. I am sending a warm hug. It's not functional or all in your head.
can we block people like this or is it just up to the administrator?
Hello cathie , may I ask who this comment was in relation to please? If there is ever any content on this site that you are unhappy with then please report it to the administration team. You can report a post or comment by clicking on 'More' just below the text and then selecting 'Report'.
Are you sure he didn’t say anorexia and not anorexia nervosa? When doctors say anorexia it means loss of appetite and weight loss. Usually a mental health provider would diagnose anorexia nervosa.
Hi Theodora. I truly feel for you - you must be feeling very weak having lost so much weight - never mind all your other symptoms. However, as KayHimm says, 'anorexia' merely means that you've lost lots of weight - which you have. I don't think a rheumy could diagnose 'anorexia nervosa' as it's a very specific MH condition. Did ***** say where you should go from here? Surely, he couldn't discharge you without discussing options to move forward? Take care and please post again to let us know how you're getting on.
Thank you for your reply, he had a brief look at my recent communication letter from nephrologist and in there it was concluded that my bloods are all negative for vasculitis and lupus. Also my imaging tests are negative. I have angioedema, unknown allergies reactions, photosensitivity and when exposed it goes really bad , hives , weight loss,pr bleeding, extreme fatigue , tachycardia, night sweats, pain in bones , muscle spasms just a few to name ...in that letter the consultant said in the view of symptoms and negative imaging , one blood test came with ancacytosis which it makes him believe is anorexia nervousa. Reading this and having a quick physical examination he said he excludes autoimmune disease, I have hypermobiliy and concluded with how is my relation with food and thinks is a form of anorexia nervousa....
He said will write to my GP and follow up from there ...
I am really down atm , its horrible. I'm sure I dont suffer from anorexia I try my best to eat but I feel really sick and I'm in pain when I eat until to the point I am sick...but I'm not making myself sick , is a bit upsetting as I work in medical field myself and I was hoping for at least a hint to something. My hubby was with me and i feel ashamed as he keeps asking me now if I am having this condition ...
Maybe your GP will send you to a gastroenterologist who may be able to figure out what causes pain when you eat. That is really so hard. I can hear you are feeling very discouraged.
K
Hi Theodora. I hope you are feeling a little better today. I am not medically trained, but it seems to me that, given your extreme weight loss (for whatever reason), you would certainly present with ancacytosis, which results from lack of essential vitamins and minerals. I think more should be done to investigate your symptoms (including weight loss) and perhaps a visit to your GP is in order. If your GP is not supportive, could you get an appointment with a different one in the practice? Take care
Hypermobility is normally associated with lupus too. My husband didn't believe my daughter either. I did. Men deal with things differently and have their heads in the sand most of the time.
Wow, unintentional weight loss is very serious on its own but with other things like protein in urine, rashes and the other symptoms it certainly suggests a serious under lying condition. Have you seen other non rheumatologist specialist like an immunologist, had an endoscopy or colonoscopy. Seen your gyn to rule out cysts? Hope you find answers. Xo
Thank you all, my reumathologist app is in August and that's why I went private , I feel that fatigue takes over my life and the pains I'm in are horrible. The nephrologist consultant that I'm under I feel that he get a bit fed up because they can't find a cause of hematuria and protein in urine . He then said will refer me to dermatology and immunology. I'm still waiting....I've been in this rollercoaster for the past 2 years and is horrible, but thank you all for your replies and support I really appreciate it . At least here I can tell my pain ....
It really can take years to get to the bottom of the cause. I never let all my negative bloods discourage me in finding the reason behind all my symptoms. From 2014 - 2018 I spent the whole time in a whirlwind of hospital appointments. I got no where. These were the first years of my sons life and I spent it struggling to be his mum. I’m finally getting somewhere, it really does feel like an endurance test at times x
Hi Theodora, firstly can I say I am so very sorry that you are going through such a difficult time. From my own experiences I totally understand the frustration and distress when clinicians seem to write you off. I was diagnosed with SLE ten years ago. Subsequent Rheumatologist have diagnosed Bechets, APS and Fibromyalgia. Since the Fibromyalgia diagnosis I feel that I am getting fibbed off. When I see a new Rheumatologist they tell me my bloods are normal. I was despairing too. Why did I feel so dreadful if my bloods were normal? I then got my GP surgery to provide all my blood results and quickly found that they were flagged up as being abnormal by the laboratories. Have you got a copy of your results? Sending big hugs and hoping that things get easier for you x
Well I had the same experience with Dr ***** (I would put money on it being Dr ***** as I hear this continually from so many other patients) , I went to see him as my wonderful doc at London Bridge has retired although I am still in contact with him and I could not see prof Hughes as he was not in the day of my appointment, I have now written to my previous doctor(s) at the London clinic with my horror of the appointment. So this is what happened to myself:-
I was diagnosed in 2017 with the big 3 by Prof Hughes and Dr Lanham with Positive tests for all 3 + Hashimoto's
Dr ***** discounted that I had "The big 3" as Diagnosed by Dr Hughes and supported by Dr Lanham
Prof Hughes has stated that as I have Hashimoto's with a TgAb still 1000+ that he tends to see an auto Immune profile showing Sjrogrens, Hughes and Lupus Like syndrome which he terms as the "Big 3" So I finally had a answer to why I was so unwell
At my appointment with Dr ***** he discredited this Diagnosis as follows:-
Hughes/APS - I explained that Prof Hughes had stated that not all patients come back with a positive test but as I had a Positive Anti Cardiolipin on both tests and 2 other doctors stating I had Hyper-coagulation in the past and the doctors notes from 2006 stated a had a defect of fibrinolysis, as evidenced by an elevated PAI-1 and other Coagulation markers and was put on 5,000 IU 2 x day for 3 years + I had miscarriages and my mother had a debilitating stroke at the age of 51 + Hashimoto's also and my Neurological problems especially past seizures were discussed with Dr Hughes and he explained so much about what I was presenting with - Dr ****** stated there was no evidence of this diagnosis for me or any other patients unless they have a brain scan or stroke and that Blood thinners of any sort were not a good option to any patient.
Lupus - I explained my biggest enemy was the Sun and I TRULY believe I had this as do other doctors going back to 2000 with confirmed discoid Luous from Pictures and so many positive tests, he said yes it can cause rashes in many people, I stated it puts me in bed in a flare not a rash. I asked Why did I have a continual raised ANA for over 20 years and the last one at 1:132 and a positive DNS-Dna in 2003 and so many symptoms - He discounted this diagnosis and said as I am not having organ failure of any sort, despite my Spleen being enlarges and a bizarre continual Heart echo and the rest never checked and whyy can I no longer walk and am wheelchair bound due to to extent of my pain and so much more
Sjrogrens - I can not open my eyes in the morning where I feel I have pins in them until I put my artificial tears in - He discounted this diagnosis
I asked why was my Ferritin so high as my GP said it was a prominent marker of inflammation - He discredited that and said it was not relavant
In fact he discredited every thing that I was told by Prof Hughes and Dr Lanham and instead said I had Hypermobility and that I must not concentrate on labels or diagnosis but things that will make me better (but sugested nothing other than giving me Qunine Sulphate that I was able to take years ago) - So He prescribed Quinine Sulphate and said I could be on Enoxaparin which I got on so well (but it gave me bad spleen pain) but he said no one should ever take any anti coagulant long term.
When I went to Prof Hughes I finally felt by having what he calls a "label" a reason why I was so poorly, I could finally start to treat that "label" as how possibly could anyone get better or have treatment from not having what he terms as a Label
How possibly can the extent of my problems with such pain I can not walk and so many other symptoms and relapses that does go in to partial remission and all of my other symptoms be Hyper mobility?
Where I was given Kindness by Dr Lanham & Prof Hughes I felt I was talking to a text book
Where I was given hope by Dr Lanham and Prof Hughes I was left feeling hopeless
I am therefore now left to never trusting to go to another doctor and somehow looking after myself - I am devastated
I'm really sorry ...no other words here
Good doctors can disagree about diagnosis. I have to say that reading your list of symptoms and labs, my rheumatologist would likely agree with Dr *****. Many rheumatologists have a high bar for what is lupus and what is not.
I have a lupus-like autoimmune disease with non-persistent anti-cardiolopin antibodies. Like Dr ****, my doctor does not refer to this as APS and recommends blood thinners only when the benefits outweigh the risks.
Although a patient may like what she hears from one doctor, it does not mean that doctor is incorrect. These things are not black and white.
Even before I read Kay's response my initial thought is that Dr. * is following USA treating protocol. Here in the states, antiphospholip antibodies is never treated with a heparin trial sans evidence of a clot. Heparin and aspirin are used after two miscarriages only shortly prior, during and after pregnancy. And without clot evidence only high risk patients are even give aspirin treatment. Heparin and warfarin are only for proven clotters here. Non clotters with Antiphospholipid antibodies and other autoimmune symptoms are regulary offered statins and HCQ which are both proven to be beneficially protective by lowering inflamation and antibodies.
Numerous studies have disproven the theory that heparin and warfarin can relieve any APS symptoms other than clotting. Only anecdotal case studies have ever shown that heparin trials treat migraine, brain fog or other " Hughes" non criteria symptoms. With out blinded controlled peer reviewed studies, the notion that patients feel better on a trial of heparin is pretty much believed to be nothing more than placebo. However HCQ is proven to help non criteria symptoms and lower Apls. Dr. *'s opinion is presently more in tune to newer studies than Dr. H and is the direction inwhich diagnosis and treatment is leaning now a days.
I hate being on plavix and warfarin for life. The risks, which are great, after a stroke is warranted for me but I would give anything to not need it long term. I am looking into studies that I can partake in to get off it.
I've been given the hypermobiliy leaflet at the end of my consultation...I'm seeing a neuro next week, my symptoms have gone worse ...
Why am I not surprised!!! If only it was that alone
I have a Positive DsDNA + Lupus tests
I have positive Sjrogens antibodies
I have positive Anti cardiolipin antibodies + PAI-1
I have TgAb in the 1000's
I have Discoid lesions
So if that does not give a diagnosis with the symptoms I have no Idea what does
So you agree that before treating Hughes you allow someone to have a stroke?
I would say that doctors have to practice evidence-based medicine. There are international guidelines for treatment of APS. It is a dilemma for doctors when someone has positive antibodies but has not had a clot. This issue came up before on the forum about treating people with lupus and positive aPL with aspirin. I have been on aspirin for many years. Every case is different. You might want to ask if that is recommended for you.
Unfortunately, there are probably people with aPL who have gone on to have a stroke. But right now the evidence shows that the chances of a person on Warfarin having serious complications is greater. All of medicine is based on risk versus benefit.
You would have to ask the rheumatologist his reasoning. It could be anything from the antibody tirer, the fact that he sees no signs of inflammation typical of a given disease. Only the doctor can answer that question. If you were at a lupus center, I feel certain the rheumatologist could articulate exactly what he thought and has mountains of research behind him. It is not just a symptom check list.
Thankfully there are doctors who will not wait for their patients to have a stroke or die before offering them treatments.
The risk of a life threatening bleed in non clotters is too high to risk the use of drugs like heparin and warfarin. There are less serious complications of long term anticoagulants, like osteoporosis and arterial calcifications( which ironically can lead to strokes). There are better treatments and preventative options for non criteria positive Apls patients, like HCQ and statins.
Statins, HQC and controlling for other risk factors like high blood pressure diabetes and lack of exercise.
I keep reading about the “two hit” theory so I guess it is significant.
Xk
HCQ has been proven to lower Antiphospholipid antibodies and many can go negative. HCQ also " thins the blood. Flaxseed oil has been proven to lower beta2 glycoprotein and cardiolipin antibodies aswell so if you can not get a script for HCQ ask about using flaxseed oil. Vitamin d supplementation lowers beta 2 antibodies also. So if you have below 30 vitiman d levels ask about supplementation. As does high resistant starch diets.
My second and third hits when I had a stroke were I had active shingles and had just taken a four hour flight with an unknown hole in my heart. I do believe it is more than the antibodies it also takes an infection or other heart risks, like metabolic syndrome or high cholesterol.
What treatments would that be? Doctors have to follow guidelines. Anyone could have a stroke but not everyone is on an aspirin and certainly not Warfarin.
I agree - This is beyond comprehension
There is nothing beyond comprehension. The doctors should be explaining all of this to you. You should understand how your antibody positivity is interpreted in the context of your discoid lupus and other symptoms. The doctor should tell you what the research indicates your risk of having a clot is. You are owed this. Sometimes doctors agree more than it seems. The names they attack to things can be different.
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