Consultant’s letter not accurate & unhelpful

[Verbena17]

Hi
DS 18 has been seen by a general cardiologist last week but the letter we got today following his appt was inaccurate, a bit wish washy and didn’t signpost us elsewhere.

He has said he’ll do an Echo to check heart structure but keeps saying he doesn’t think it’s a cardio issue - and even said DS isn’t experiencing any cardiac symptoms - which he clearly is! Surely if he thinks the issue is ‘outside of the heart’ he should say we need to see someone else and maybe suggest who?

The GP referral letter states her main worry being the large difference in heart rate from sitting to standing and he didn’t even comment on it when I spoke to him at appt and didn’t mention it in his letter.

He completely missed writing that at DS’ last ECG last year, Intraventricular Conduction Delay was picked up. When I mentioned it in clinic last week, he wafted his hand around and didn’t comment on it. Surely he could, have explained it to me in more detail.

Is it strange that it all seems a bit blasé and should I call GP to ask what she thinks (she suggested him being referred, not me) or should I go back to Bupa and go privately with a different doctor (last week was NHS because he suggested he could see him on NHS sooner than he could at his private clinic)? I found him to be quite dismissive of the whole thing - even though DS is significantly underweight due to an ED, has random chest pains specifically in one place where his heart is, gets breathless doing any teeny amount of exercise -bending over, walking upstairs etc and as today’s letter states, has unexplained tachycardia.

Sorry to post this in chat but posting for traffic as my last 2 health posts in Health had zero replies.

I would write exactly what you've put here to the PALS service of the hospital. Ask them politely for a second opinion as you don't feel this consultant addressed your issues. Private may be an option if you're unhappy with the result of the PALS complaint but generally I've found them to be quite helpful if you approach them in a polite way.

Go back to your GP and ask them to explain the letter to you and where they think you should go next. That finding on ECG is quite common and not necessarily significant in itself – what was the comment made about this at the time? I reckon the symptoms sound like POTS rather than anything specifically cardiac. pain with cardiac cause is often not localised too.

Thanks both.
Yes - POTs was the reason the GP write the referral in the first place because she was thinking POTs, as was I….although she didn’t write her thoughts about it on the letter. But she did include the Heart Rate differences (sit/stand) which he didn’t even comment on.

When I asked him about POTs, he said ‘I don’t think it’s POTs, but even if it was, there’s no point diagnosing it because there’s things you can do without medication’.
It was slightly weird in that he did say ‘you don’t need any more diagnoses’. He was very dismissive of my questions and DS was annoyed afterwards because he said I didn’t give all his symptoms. The doctor though made me feel like a worried mum without reason.

@Switchingoff can I ask why you mention Intraventricular Conduction Delay being insignificant? All of the research suggests it increases mortality by 2-3 x in patients with non-specific IVCD.

I didn’t say that. I said it’s not NECESSARILY significant IN ITSELF. See link below for example. If the cardiologist isn’t concerned he may well have reasons although yes it would have been helpful if he’d explained them! And yes he doesn’t sound great overall so worth asking the GP for a private referral for second opinion especially if you have insurance which would cover it

https://www.pccoforegon.com/what-is-intraventricular-conduction-delay-or-incomplete-right-bundle-branch-block/

Apologies @Switchingoff - I didn’t mean to make it sound like i wasn’t believing you - I thought perhaps you were a doctor/medically trained and so might have more info on it 😊.

Good idea about asking GP for 2nd opinion. Think I’ll wait to see what the echo shows then ask for a new private referral letter, maybe that’s a bit more specific.

It’s so hard to get any of the specialists to consider other issues - obviously they’re all trained in their own areas but they only seeming to think about each issue in isolation. I found it a bit strange he didn’t signpost us to a more appropriate team if he didn’t think cardio was the right one. Every time, it’s starting from scratch - nothing seems holistic.

That link was really good, thanks.
It talks about ‘exercise tolerance’ as being something to consider and he has zero exercise tolerance - even bending down can leave him exhausted and muscles weak. I explained that to the doctor but he seemed nonchalant.

No worries – I’m not medically qualified, just a very experienced patient!

Unfortunately the system just isn’t set up to be joined up which is why I suggested going back to your GP to hopefully hold all the threads. Unfortunately exercise intolerance is a very non-specific symptom as well.

if you do go privately, you can often find consultants who have a sort of dual speciality in say cardio but also general medicine who may be able to think a bit more holistically. I used to be with BUPA and I think you can just search their consultants online

Yes we are with Bupa too. Actually, for that reason, it’ll be tricky to know who to look for until I know about which area of specialism we need to be referred to. Even DS is saying ‘I hope the echo shows up something’ because he’s so confused about his symptoms being potentially ‘nothing’.

Did your gp check your ds’s bloods - electrolytes, fbc etc and all okay? The ED and being significantly underweight is probably quite relevant tbh. Does you ds have specialist support in place for this- if he is able to gain some weight he may well find that his symptoms improve. If you are likely to wait a while for the echo, paying privately may well be your best bet.

Could this be down to energy levels and lack of nutrition though if he has an eating disorder? Assuming that's what you meant by ED!

Isn't the lack of exercise tolerance due to your DS having an eating disorder?

Hi OP sorry to hear you are going through this.

personally I would go private and choose a consultant after doing some digging. personally I always go for someone who works in a large teaching hospital + specialises in the specific area of interest (in your son's case conduction abnormalities).

I am also wondering if other causes have been ruled out? eg electrolyte disturbances (this is common with ED) or whether it could otherwise be related to the ED (can happen if severe). is your son having specialist care for ED?

really hope things get better xx

I'd definitely request 2nd GP opinion, and maybe referral to different cardiologist.

If possible, make sure your DS either communicates his symptoms in the appt or writes them down for you to repeat. I'm assuming there's a reason why you were talking about his symptoms instead of him, but if the consultant or GP hears it from him, it might get the point across

No bloods were suggested this time. His last lot of bloods were just before he was signed off the ED team in spring this year. They were ok - low Vit D but he takes a daily supplement of that, and also 2 x vit c+ zinc, as he currently eats zero fruit or veggies.

The cardiologist wrote that he needs to build up his muscles but without really considering how underweight he is. I did explain to him we were advised by the ED team to monitor his exercise and for him not to exercise until he grew stronger/put weight on. Since leaving them he refuses to see the adult ARFID team and so there are no professionals monitoring him anymore and nobody to advise about safe exercise. But if you think he’s nearly 6ft tall and weighs 8st 11, the daily cals he’s having is mostly way under 2000 and more like 1400-1700 most days. Sleeping alone uses approx 1000 each night so it doesn’t leave him many for exercising.

He had an echo 3 years ago so perhaps they’ll see a difference in heart size when they do this next one.

Ds is autistic and is too shy/anxious to talk to health professionals so barely speaks at all. The ED team he was under had a lovely nurse who he was able to talk to but he’s an adult now so we don’t see her anymore sadly.

I did write down the symptoms and questions I had to ask but the doctor was either was very dismissive or didn’t seem bothered.

I've got an incomplete right bundle branch block, none of the doctors who have seen the ECG have ever been interested in it or commented.

We can’t tell. The pain he has in his heart area are sporadic and can sometimes happen when he’s just laying quietly in bed or when he’s playing on the floor with the dog - there’s no pattern.

The breathlessness is pretty much with any exertion - but the consultant wrote that his pains and breathlessness were non-exertion based….which I explained it’s both.

Thank you @Wowzel - that’s good to know.

How is his diet now? There may well be more to ‘ unpick’ with regards to your ds’s symptoms, particularly with his underlying ED. Maybe take him back to the gp for his bloods to be repeated ( spring is a while ago) and for him to be referred to an ED specialist for adults (if this is still an active problem for him , which it sounds like it is). You could also discuss being referred to a different Cardiologist.

If you don't exercise your muscles waste.
If you don't eat enough calories and protein your muscles waste.

You have a very tall teen boy who has had a long period of no exercise, due to how little he was eating, who still doesn't eat enough. I'd be surprised if he wasn't short of breath on exertion.

In terms of the pain, has anyone mentioned precordial catch to you? It's very common in young people, a sharp stabbing pain in the heart area and of absolutely no significance at all - except for being annoying and painful.

https://en.wikipedia.org/wiki/Precordial_catch_syndrome

Sorry I have just realised you said that he refuses to see the adult team. Are you able to coax him into engaging with them?

Dysautonomia is more common in Autistic people so I would at least want a Tilt Table Test to see if PoTS or another type shows up. Is he hypermobile?

Thanks for your reply.
It’s difficult as the ED is ARFID - and due to him being autistic, is unlikely to ever be cured as such. We realise the effects of his very low calorie intake and lack of exercise but it’s an ongoing loop. He doesn’t eat enough and so cannot exercise. Although I think I might look at getting an under desk cycling thing so he can try cycling when he’s sat at his computer.

He is also hyper mobile and so has painful joints due to that but he was diagnosed by a private OT and we’ve not seen the GP about it. It’s almost like when you have multiple difficulties it’s just one big annoyance for them!

Oh wow! I just wrote my last reply before I even read your post about being hyper mobile!