So, I have just finished my phone consultation. I had my list of questions which I wasn't able to put over to the Consultant without being accused of being rude. This is how it went before I forget: My symptoms as they appear at the moment do not entitle me to any thing other than a 3 day ECG monitor which if the palpitations are appearing as frequently as you say they are will show up any abnormality and then dependant on the results, the next decision will be made. I brought up the "Lupus". The reply, There is nothing to suggest that the palpitations are anything to do with this. I can see you have regular check ups with the Rheumatologist. I asked her to put a note on my file to flag up the possible mild Lupus with the palpitations which she did not confirm she would do. If you do not agree with any aspect of this consultation you are free to go elsewhere, but this is all we are prepared to offer you from the presentation of your symptoms. My husband who was listening said that she just bull dozed over everything I was trying to say and on the occasions I asked her to stop talking over me, she found my attitude to be very disrespectful. At one point all I calmly requested that she stopped talking over me so that I could put my questions across which was useless as the only way forward for me is to have the ECG for 3 days instead of the 24 hours, so all my/your other questions are null and void because according to her there is no link between Lupus and the heart, the fact that all my previous investigations were normal means that there is nothing wrong. There is no chance of an Echocardiogram unless the 3 day ECG comes back with something and then they will be able to detect whether it is something benign or to worry about. I did point out that my mum had angina and she felt that I was being overly dramatic when I felt it was just offering a family history. So for the time being there is nothing I can do other than wait for the ECG appointment or collapse in a heap and maybe junp the queue, or to see if I can seek a further consultation elsewhere. What she failed to understand is and was - that I do not really want to be doing this at all. Like all of you I don't want Lupus or anything at all to do with it and it is not just some fancy attention seeking amateur dramatic thing I woke up with. Thank you all so much for all of your wonderful questions and ways of dealing with it. I feel I failed. I even started the conversation with I have some questions for her as was suggested by all of you kind peeps and at one point I asked her to please stop talking over me to which she said. Am I quiet enough for you now? I feel very deflated. My husband said there was nothing I could've done because she'd just made her mind up from the start and reading my records which was actually something because normally I say, well you know I have Lupus to which is followed, Do you? A million thank yous to all of you. I really do need a happy doggy/cat/any other funny meme that anyone might have. Before I go and in the true spirit of "Just a Minute", I do apologise for the repition, drifting off Subject, et al. Thank you for reading🙏
Telephone Consultation Results of:: So, I have just... - LUPUS UK
Telephone Consultation Results of:
Urgh! You must feel angry, deflated, distressed and much more. The dreaded lack of control we can feel on phone consultations. It might be worth seeking a separate opinion. I went from UCTD to Lupus based on my pericarditis. 7 day tape, ECG etc all normal. Cardiovascular involvement with Lupus is common and extremely well documented, so her comment was preposterous and rather ignorant.
The sad reality is that there are good Drs and not so good ones. I say this from being in a position of an immediate family member being the victim of a large medical scandal, so not a trite comment. I think you have several options - discuss it with your rheumatologist, see a private cardiologist (one recommended), talk to Lupus UK about signposting you to information about Lupus and the heart. Have you got a good GP? Might be worth discussing through with them. Meanwhile, monitor your symptoms really carefully, put it under the belt of experience. By the way. Great your husband was listening in and is able to support you through this. xx
Thank you Rosie. I am feeling down. I just feel like I've had my knuckles well and truly rapped and I've been brought into line for making a fuss. I am fortunate to have 2 wonderful GP's. I don't really know where to go from here. I'm dreading the 3 day monitor as she was very explicit that if it comes back normal that's it. If yours came back normal after 7 days, then I feel there's very little chance that mine will be different. Originally she was going to give me another 24 hour monitor, so I should feel fortunate that she changed her mind on this. My husband has been great especially as yesterday, he started the first stage of his cancer treatment that has turned up again after a 12 year break. So I'm feeling a bit like a silly school girl bursting into tears at the slightest thing. I think I'll probably seek advice for the heart-Lupus link via Lupus-UK first even though I mentioned it to her and she dismissed it out of hand. This approach feels manageable as I'm a bit overwhelmed and the thought of having to deal with any medics at the moment makes me feel sick. I have a Rheumatology check up in September, but I'm dreading that now as he was the one that said it was only mild so very little to worry about as per last year, but I'm just catastrophising now. I am also thinking of meeting up with my local Lupus group which is an hour's drive away, but I think I might get some support in a different way, especially with my husband's news which at the moment is fairly positive and I have to believe that it will be fine. I'm just wittering now. However, I am so very grateful to you for your explanations and really great and very helpful advice. We all have our own and other stuff on top of all this, so I know the effort you have kindly put in for me. Many thanks 😊 🙏 x
Lupus UK site is down. Go onto the Lupus Encyclopedia site and subscribe - it's free and they will send you this months information sheet on pericarditis etc. It's a good start. x
Thanks Rosie. That was my next question to the Forum as the site was down. The other question being people's thoughts on the Lupus Encyclopedia which I know you have. I've drafted a letter to my initial Rheumatologist, her Department, with copies to the Cardiology Department and my GP's to see what happens, but the only investigations I can find online about Cardiovascular issues are via the American Lupus website. I can almost see the Cardiologist's face if I refer to this bit of information. 😉. I'm still feeling like Piglet from Winnie-the-Poo - not very brave; but there are so many helpful people on here that I can feel the "Be brave little Piglet!" (admittedly from the Disney version) coming from you all for which I'm truly grateful. Enjoy your Bank Holiday 🙏
Sending big hugs
Sorry to hear of the disrespect shown to you by that dreadful Dr.
Here is Hugo helping my son refresh my kitchen cupboards a few weeks ago. Hope he makes you smile.
Following on from my dreadful appointment the Rheumy secretary rang asking me to go for an tacrolimus education appointment with the same Dr. I said NO I won't see her again and they have sent me another appointment with someone else.
I've had my pre op so now I wait for a date
Big hug CC 🫂 xx
Thank you, thank you Hugo. Nice to see he has a cupboard for his ball! This made me smile so much. Good advice, I think I'm going to ask for a different Cardiologist Consultant although I can't even remember her name. Bless you for Hugo and hugs gratefully received. 🙏
Just a thought but has your thyroid been checked as hypothyroidism can cause palpitations. It was the cause of mine xx
That's a thought. I could ask for a Thyroid check. I'm not sure I've ever had one. Thank you. Lovely family photo and good for Hugo if he's had a few. I might take his advice too. Thank you for sharing your family, gotta love sons - I have 2 of 'em, sadly not 21 any more - a lot older 🙏❤️
Who...Hugo or your son...or both?
Neither drink lol x
Ooh that’s awful in any interaction to be treated like that but even more so when it’s your ill health.
If you are in the UK i would be tempted to contact PALS and make a complaint and ask for a second opinion as you don’t want to deal with that specialist again as it added to the stress of living with a chronic condition when she is supposed to put you at ease at the very least!
Morning. I have a clearer head this morning and I woke up remembering PALS, which I used, very successfully when my Dad was having his palliative episode, obviously not a good one and they were extremely helpful within the limited time he had left. Thank you for your suggestion and for taking the time to reply and just the fact that you've thought of me, helps me in so many ways moving forward. Thank you.😊 🙏 Enjoy the Bank Holiday 🏦 (this is the emoji that came up) 😄
Hi, I had a similar experience with the respiratory consultant who I had been referred to. He did not allow me to talk, made judgements about me and I even ended up in tears. My husband was furious and said we were never going back to him and we immediately contacted my rheumatologist in Addenbrookes and asked to be seen, where I received a much better response. I suggest, if you are happy with your rheumatologist, to go straight to them as they will organise any tests they think you need, because they understand Lupus and know the complications. Do not accept this treatment and to be made to feel like this, you know your own body and your life is been affected.
Good luck and best wishes 😊.
Thank you for such a succinct reply and your unfortunate experience. Of course as Lupus patients, I am slowly learning that the only person to advocate for us is ourselves, as the knowledge seems somewhat sketchy even from Rheumatologist to Rheumatologist even within my experience of my local hospital which I am naming and shaming is the West Suffolk. I stupidly thought that I was advocating for myself and trying to be helpful and not a smarty pants which was the definite reaction from the Cardiologist. My husband thinks I should change hospital, but I will talk to whoever the Rheumatologist turns out to be in September, I never see the same person twice. Last year's Rheumatologist spent 5 minutes with me and concluded that it was mild, bloods OK, so carry on, nothing to see here even though the pains in my legs were worse than ever. I am halfway in distance between the West Suffolk, Addenbrookes and Colchester. I am going to seriously review my situation, so thank you for giving me the confidence to even consider it. Enjoy your weekend 🙏
I am so sorry to hear of your dreadful phone appointment. I think the advice of getting your thyroid checked is good. I can totally relate to how you are feeling having had a similar phone consultation. I reported my situation to my GP saying I needed a different consultant! It is unacceptable to be treated rudely and given stress when all we want is help ,support and understanding. Take care. 🌷🌸🪷
Yes, totally agree with everything you say if only she'd have let me put my point across. 😡Thank you for taking the time to get in touch. I just wish that people made the link of listening properly, things would be so much nicer and quicker in the long run. If she'd listened to me the call would've been quicker, I would've been able to put my points across and the whole encounter completely unnecessary in my humble yet, disrespectful 😉opinion! Have a great day. 🙏
This is horrible situation and one ive been in several times and face to face. I dont find ecg to be reliable for such problems in all honesty and be wary as this being the case they may then say its fine and then taken even less seriously. I was told ecgs fine and yet was taken by ambulance a few times as suffering and stayed in emergency department until they got heart rate down and they said to get gp to give me 48 hr monitor and gp didnt see fit to do this. Before this I was put on statins (no longer have) and told I may need stent in future. following this I do get high heart rate and gp got me to keep a record and gave me a sheet. I gave to him but nothing come of it as ecg (not done at time of palpitations) ok. I am not a doctor so have no explanations but after high dose steroids I had a weird experience on day 5 of low rate warning after constantly high ones, I had loud ringing in ears and a bright flash of light. I still get hhr warnings and palpitations but less so.I question wether this is cardiovascular itself or 🤷♀️ or inflammation causing it 🤷♀️ .
I am undiagnosed and many questions .
You'd think family history be helpful at least in consideration .
Of course the last place we want to be is needing them, we dont WANT to be doing it.
If you do not agree to this consultation free to go elsewhere? how empathetic and reassuring.
advocating for yourself or having questions is self care and not disrespectful, I have had the same and im not a disrespectful person , in fact I fear I dont advocate enough purely for this reason that I am then classed as an awkward patient.gaslighting comes to mind.
It's understandable to feel failed, it's distressing, there is no need for this attitude in healthcare . It's a fine line and rollercoaster, if you speak up it can be more damaging, and yet if you dont and go with flow that can be too. I fear as you say , healthcare is now really for emergency care, why we have to be an emergency is all wrong, when there are preventative measures to be taken but 🤷♀️ spanielmadlady shout of thyroid check is a good one, though my gp said all fine but private bloods showed subclinical hypothyroid.
Sorry you went through this , sadly its becoming common place, I send best wishes and to your husband as I read he has his own health problems too 🙏 🤗
Thank you for reply. My husband's experience has been completely different as I suspect his is the "C" word. Within 24 hours he's had his first chemo injection, the further 3 booked and his Radiotherapy booked for the next 3 months, a nurse checking up to see if he's got any questions and her direct line and I wouldn't have it any other way other than for him to not have cancer at all. I guess Lupus is just that "unknown" thing that doesn't seem to follow any rules, which as you know is not very reassuring. I've taken on board your experiences and advice too, so thank you for so kindly sharing. Have a good weekend 🙏
wow sorry but glad to hear that he’s being looked after 🙏 as it should be, but feel care should be all round , they as you say need to listen and not just look at test which are an aid and not all looked at properly or tied in they look without seeing and listen without hearing, it makes for bad outcomes. I wonder if stress and mental health problems stem from them, the rise in it since healthcare down, which is a vicious circle and leaving people with bigger problems than might otherwise have had 🤷♀️. I hope you find another opinion and help and wish you both all the best, enjoy your weekend also 🙏🤗
Thank you for your very kind words, which are such a boost and all that one really wants. Thank you for listening too. I appreciate the time it took out of your day 🙏
I am so very sorry lovely. You did not fail, that Cardiologist did. Her arrogance and ignorance is sadly driven by ego. My medical notes say I “want” to have Lupus. It is utterly disgraceful. I fully understand how upset and frustrated you must be. The lack of respect , the condescension, the dismissive attitude meant your husband was right there was nothing you could have done better or changed the outcome of that consultation.
Did you record it?
I would urge you to ask for a second opinion with a Consultant outside that hospital.
I send you huge Cwtches. Rest and recover then move forward xxx
Thank you for the suggestion, I'm definitely thinking about changing hospital and paying for a complete set of bloods. I have in this one, one sided conversation with the Cardio Consultant lost all faith in what is going on for me. Thanks for all the cwtches and the woofer love 🐶🐶❤️🙏
I truly understand that. I wish you the very best of luck going forward. I know how hard it is, once you have been treated so appallingly there is no going back xxx
Finlay and Skye send slobbers ❤️🐾🐾🐾🐾
So gratefully received as always and foreves xx back at you and them xx😜
❤️ xxx
Think if this happened to me now I would say that I wished to talk to somebody else.
Though the only time I did the more senior male colleague was just protective of his pretty young female colleague, who literally was acting as if she was terrified of me suddenly acting out as he came in the room. She was not that bright but obviously she had got her 'early in career consultant post' for a reason. Everything she said to me was hurtful. eg you have dry eyes because of your age ..( no understanding that it happened with covid, and came on with SLE symptoms...and she called herself a consultant..
Most appointments locally here are a waste of time, they tick their own boxes to feel they are doing something on the gormless pathways and get recognition points, and disharge using any excuse. I don't even want some referrals but get them, and people ask me why I am there and I say I don't know.
I tell them their pathways don't work for me and that when I went to work I questioned things that were wrong.
We don't leave on bad terms but I tell them their processes and the logic they use make any appointment or discussion with them a waste of time for them and for me. I explain to then that when people are not feeling well this makes them more unwell.
Wow. Respect! You're amazing. It makes so much sense especially the end about their attitude making the patient feeling unwell. Thanks so much for your input and another perspective, I am very grateful 🙏
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