I have a telephone consultation with the Cardio team this Thursday, my first one. I have had a 24 hour heart monitor, an ECG and a chest x-ray all of which have come back as normal, yet the palpitations have become much worse in the last month that when I'm having one, I can barely speak and it feels like my heart is going to come put of my mouth. I have a cough that accompanies it with "light headedness". I was rather hoping to be seeing someone, but I'm not. Has anyone got any advice or anything else I should be reporting to them that I might have missed. I have blood pressure readings which seem to be normal. I want to be ready with any answers to questions that they might have as these episodes are beginning to scare me now and I am worried that because it is over the phone there will be no eye contact. I have brought up the "Lupus" diagnosis that I have and the GP thinks there's no link because I'm diagnosed as mild. Thank you for any advice.
Telephone Consultation : I have a telephone... - LUPUS UK
Telephone Consultation
Telephone consultations are hard, especially with people you don't know. The only advice I can supply is from my recent experience. I have suffered from palpations, not too dissimilar from your description, especially after normal exertion- such as walking upstairs. I have however had some substantial 'rib/chest' pain, mainly on the right hand side, rumbling away for several years. Last year another L hand chest pain developed when walking up hills (I live on one!) It would stop upon rest. I found it difficult to sleep on my left side and pain would be alleviated when sitting forward. ECG normal, excellent blood pressure but echocardiogram showed pericarditis.
Do you have any other symptoms than palpitations? You mention a cough, does your chest wall hurt when you cough? Do you have chest wall pain etc? When I had the echocardiogram done the Dr said it was always good to get a cardiac baseline when people have a connective tissue disease. Might be worth asking if it would be appropriate to have an echocardiogram as both pericarditis and pleurisy can be rumbling away and not diagnosed. Hope this helps a little.
Hi Rosie, thanks so much for this it really does help. I've been thinking it might be in my head especially as everything else appears normal. I don't feel like I have pain anywhere specific, just a general heaviness in my chest especially during an episode. I've been recording the duration of the episodes and also the frequency of them. They've gone from being unnoticeable at the start of the year to becoming much more obtrusive and I've had a big one today. Thank you so much for taking the time to reply to me. I'm really scared that because I'm on the phone they'll decide no further action. Thank you. I hope you're coping well. I've been told not to use Dr. Google as well. With very best wishes 🙏
So pleased it's helped. Ignore Dr Google advise. It has been invaluable for me as long as I stick with good sites and don't go down any rabbit holes.
Consultants often don't have time to explain things, let alone give detailed information. Once potential pericarditis was mentioned I googled it and realised that I had been suffering these symptoms, it was later confirmed by testing.
I have learned so much by reading information on Lupus UK, the Lupus Encyclopedia, Google Scholar etc. Educating myself enables me to ask pertinent questions. Having said all that you do need to be careful as there are always poor quality sites, poor quality research papers which could cause unnecessary anxiety. Do let us know what happens on Thursday if you feel able. x
Yes, I too believe to educate yourself in the right spaces so this Lupus UK as been so helpful even if my Lupus is only "mild". I will let you know how it goes and thanks so much again for helping this headless chicken 🙏
Meant to say, ask why they don't think an Echocardiogram might be useful, explain that you are concerned that your connective tissue disease may be affecting your cardio vascular system and that you understand that some basic tests may come back as normal. Write things you want to say down as a list and methodically tick off. Say up front that you have a few questions so that they are prepared- it all helps to establish a rapport. Hope that helps. x
Thank you again. I did go on Dr. G. last night to find out that an ECG is not an EchoC so I'm definitely putting that on my list, but the electric light bulb moment for me from you is to make that list. I did it all the time when my parents were having their diagnosis and chemo, but I just didn't think to do it for myself. In fact all of their Consultants and Palliative team used to call me List Lady. Thank you once again for setting me on the list path. Have a good day 🙏🦋
Hi, I don’t have Lupus, but I do have Vasculitis GPA and I have suffered with very similar symptoms you have described, but accompanied with severe breathlessness. This has been very impactful on my life as well as been very frightening at times, when I’ve been able to catch my breath and feel I am going to pass out. Like you I have had a lot of tests, which have all come back normal. After being told I should run a marathon, because he did, by a respiratory consultant, I contacted my other team in Addenbrookes, who listened to my symptoms and concerns. I was told it could be a couple of things, firstly a post Covid symptom. Secondly and probably most likely, is a result of toxicity of steroids, which I have been on for 8 years now. He explained that over time steroids affects your chest wall muscles, which makes it very difficult to get fit and obviously that has a compound effect over the years. All I can do is to continue tapering my steroids and to try and keep as active as possible, all of which I am doing.
So I would just ask about post viral symptoms, if you’ve had Covid and having an immune condition things can affect you differently to normally fit and healthy people. He explained that there is still so much they do not understand about immune conditions.
If you are on steroids I would also ask about this as a contributing factor to your symptoms.
Good luck with everything 😊
Oh my goodness. How awful for you. I have been very scared over the last month particularly and even tried to tell myself it was a panic attack, but the GP was totally honest, (he has no idea at all) which is why he referred me again from earlier in the year. The points you make are really interesting as I had Covid last September quite badly, but did not qualify for the medication they might give you for Lupus. I was also on long term Fluoextine which I tapered off and an no longer on. Both of those things I will add to my list. Thank you so very much. I hope you continue to be able to manage and get the help you deserve as and when you need it, but I expect you wish you didn't need it. Somehow in my head, I don't want to be any trouble or there are people more deserving than me. Anyway, thanks so much for the other two questions on my list. Keep well. 🙏
Hi, the Covid issue may well be the answer, they really do not have much idea about long Covid and then you throw in someone with an immune condition! We have conditions which keep on giving 😂.
Anyway, good luck with it all I hope you get some answers, it is scary I know and like you I do feel as if I’m being a bother, especially when their tests come back normal!
Best wishes 😊
Might be worth asking if you could have a CT scan on your lungs as heart and lungs closely linked and the cough might be something to do with that. Hope you get on ok, best wishes to you.
Thank you. That's a great and very helpful suggestion and it is so very kind of you to reply. 🙏
I have lupus annd Sjorgrens and it has affected my lungs so I’m very aware that these auto immune diseases can play have with your organs!
Have they done a cardiac echo on you?
I noticed someone has advised about a CT scan which is also a good idea and a good advice plus an cardiac echo .all these normally would be what I had done when I was diagnosed with a cardiac murmur with a dodgy valve was an cardiac echo. With mine ECG would always will be normal. Everything will be normal. Until an echo is done then it will show up .
Telephone consultation is ridiculous if you can hardly speak. Is there an email address that you can use to arrange a proper face-to-face? If not then I think you need a friend to phone & explain. No-one likes to be pushy but sometimes it's necessary. Maybe your GP can help.
Thanks so much for getting back to me. I must admit to feeling really let down and as if I don't really matter much to anybody, so all your valid points are on top of what I already feel. I appreciate you helping me feel validated. I will have my husband here with me who is very "managerial" and very good at this stuff so I've got him on the call together with the list of things that I'm going to insist (nicely) that I "trade" for the lack of a physical appointment. You and all the replies I have received after my post have really helped me to deal with the fact that I have to deal with a phone call. Thank you for saying so succinctly what I actually feel. Have a great day 🙏
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