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.

If you have BUPA go private and discuss with heart specialists about being referred for a PoTS tilt test. my daughter has PoTS and she gets the chest pain, migraine, anxiety and fatigue.

If you go private find a heart doctor that specialises in PoTs as that means you can be sure if they rule it out you can trust them as not all heart specialist feel comfortable assessing for PoTS.

The thing is, he was the first person on Bupa’s list of 3 they gave me. We only saw him on the NHS because his private clinic is fully booked until mid November and he had a local clinic he could see DS last week, so we took that.

But he didn’t suggest tilt test or anything - said he definitely doesn’t think POTs - although he’s not a POTs specialist.

I called Bupa initially asking if we could book a tilt table test - she said it would still need to go through a cardiologist.

The cardiologist we saw last week seemed very unwilling to consider POTs, even though he has chest pain, headaches, hypermobilty, black/purple feet (he said just to move his legs more), dizziness on bending over, tachycardia, and a big difference in heart rate from sitting to standing…..106 sitting to 133 standing.

He didn’t suggest an exercise stress test or a tilt test. Nothing.

Ok good idea. So would that be an electrophysiologist ideally?

Are you anywhere near London?

Can highly recommend Dr Boon Lim who is not only lovely, an expert on POTS but autism and hypermobility aware.

About an hour to South Mimms so could get into London if we needed to.
I did see him online and thought he looked good.

I highly recommend Prof Melvin Lobo as a cardiologist who specialises in POTS. I was referred to him last year. I saw him at London Bridge Hospital. Lovely man and very experienced.

https://www.hypertensionspecialist.co.uk/

@Verbena17 he is absolutely the business, not just ridiculously bright but v caring as well.

I'm further from South Mimms than you and still travelled in to see him.

On Doctor Lobo’s website it says….,

’Patients with PoTS often have debilitating cardiovascular symptoms that make life very difficult for them. This includes palpitations and tachycardia, chest pains, breathlessness and greatly diminished exercise capacity. Often routine cardiology tests such as Echocardiogram or tilt test are completely normal and patients are sometimes dismissed or disbelieved by their clinicians resulting in failure to progress their care.’

The consultant last week said it wasn’t POTs as he wasn’t feeling dizzy all the time or having chest pain all the time. Surely symptoms are personal to each person and I’m assuming not always the same in severity?

My cousin in her 20’s was recently diagnosed with POTs and yet can still go walking and dancing. So it must be a scale of severity.

Hypermobility disorders are also more common in Autistic people I see a couple of people have recommended PoTS specialists already, I definitely think it's worth going with one of them rather than a general Cardiologist... most of them unfortunately don't know much about PoTS, even if they think they do. The PoTS UK charity has a list of other specialists on it's website too

And just a wee heads up as something else to be aware of... in people with both a Hypermobility Disorder (EDS/HSD) and Dysautonomia, issues with Mast Cells tend to come along for the ride too (it's known as the Trifecta in EDS circles)

Cool. Thanks so much for recommending. I still think we will have the Echocardiogram and then go private hopefully to see him. Can’t believe he’s so young but with all that experience! Well, he looks very young!

Thanks to everyone so far for all of your suggestions and helpful information.
I was made to feel like a bit of a neurotic mother last week, even though my medical knowledge is generally quite good, but feeling so much more positive no about seeing someone else . 😊

Out of interest- could mast cell issues be the cause very bad acne?
I noticed on Dr Lobo’s site it mentioned dermatology for mast cell issues.

I am a doctor and not usually impressed by other doctors, but honestly he made me feel totally inadequate in my career 😂

My symptoms got a lot better with his advice and significantly better when I got fit and increased my muscle strength (although will still keel over from time to time) - unfortunately your DS is in a catch22 with his ARFID.

@Verbena17 I'm not sure about Acne tbh, when Dermatology is mentioned re Mast cells it usually means hives, itching etc. However, gut bacteria is linked to acne and Autistic and/or hypermobile people tend to have poor gut bacteria

Ah ok yes i see. I’m sure his gut bacteria isn’t particularly healthy from his very restricted diet. But that’s a whole other issue!

Interestingly, his last lot of bloods said very low IgA - <0.5 I think - again, implying his immune system isn’t great.

B12 is also another thing to keep an eye on, especially with his dietry issues... a deficiency in it is also common in Autistic/hypermobile people and it can actually cause PoTS symptoms, especially in younger people

Edited to add: B12 deficiency can also affect the immune system

Aha you’re a doctor! Cool 😊.
Yes you’re right - it’s a catch 22.
His calorie count so far today is sadly only about 264….it’s exhausting trying to coax him to eat!
Glad you’re feeling so much better.

It’s sad because as a young child, DS loved to run, climb trees, go climbing etc - he still had ARFID (then called Selective Eating Disorder) but ate significantly more than he has over the past 10 years.

Funnily enough, his B12 was the only thing on his blood work that was over the maximum limit. It was super high! But they said that’s common with eating disorders.

PoTS UK have a list of PoTS aware consultants on their website. Electrophysiologists tend to be more willing to properly investigate and treat PoTS than general Cardiologists and sadly there are definitely a certain cohort of Cardiologists that don’t believe in diagnosing or treating PoTS. As you have BUPA, you could try one video appointment with Dr Sanjay Gupta of York Cardiology in the first instance. You can have a look at his YouTube channel first if you want to see what he’s like, he has quite a few videos on PoTS.

A Tilt Table Test isn’t necessary for diagnosis, an Active Stand Test/Poor Man’s Tilt is acceptable for diagnostic purposes and quite a few doctors now avoid Tilts if they can, as they are a horrible experience to have to go through. All the info is on the PoTS UK website. I can also highly recommend joining the Parents of People With PoTS FB group. It’s a really supportive group and the members are really knowledgeable.

I have PoTS, so does my son, who is also underweight and has lots of muscle wastage due to the combination of repeated injuries relating to his EDS and the level of disability he has from PoTS symptoms. Our GP has just sent him for a huge number of blood tests, testing everything from B12, Vit D, the usual standard blood panel, plus Cortisol and Coeliacs, as he simply can’t maintain his weight.

If he’s supplementing with B12 then his blood results won’t be accurate. There’s a FB group about B12 deficiency and pernicious anaemia that has lots of good advice, but essentially you need to be off supplements for a certain length of time to get accurate results.

I didn't do a tilt test as I was self funding and Dr Lim said he'd seen enough on examination.

My bank balance was v grateful (and by all accounts tilt tables are horrid)

I need to look if Dr Lim is Bupa registered. I didn’t realise tilt tables were that horrid 😬. I’ve been looking up about POTs more and it seems like there are a few different types, as well as different severity.

@ErroneousEntity thank you - I’ll have another look at the POTs UK website.
I think I saw a video a week ago with Dr Gupta so I’ll have another look.

DS isn’t taking B12 supplements - he’s only taking Vitamin D and then 2 x chewy Bassets ones of Vitamin with zinc.

I’ve applied to join the Parents of PoTS fb group - thanks.

BUPA Dr Sanjay Gupta

York Cardiology YouTube

If you ask on the parents FB group someone may be able to recommend a consultant close to you, but quite a few have seen Dr Gupta via video.

I really feel for you and your ds. We are in a similar position, as ds can’t maintain his weight and is too weak build muscle, but obviously needs decent muscle mass to help venous return and increase energy. He does see a senior specialist rheumatology physiotherapist every couple of months, via video to manage pacing and work on vey basic movement and floor/bed based exercises, but that was organised by the Rheumatologist that diagnosed his EDS and he has been really lucky to get it. Prior to that community and standard hospital physios didn’t have a clue what to do with him.

My DD1 has ARFID, EDS , POTS and is also on the spectrum.
Her POTS is spectacular... her resting heart rate is low 40s and it can go up near 200 ... alarming at both ends. She's fainted just about everywhere you can think of, which as she's a doctor herself has been pretty embarrassing at times (ward rounds particularly!)
She has been thoroughly checked over (and is regularly) as she is a very low weight (has been inpatient, tube fed etc) but for the POTS there really isn#'t a lot anyone can do except try and keep her blood pressure up a bit.

Does your DS have nutritional back up prescribed? DD1 has 4 fortisips a day which means even on the days she simply cannot eat, she can usually get a few of those in... she has a very restricted diet and has had her entire life, and thankfully the dietitions have given up trying to 'make' her eat foods she simply cannot eat. Her ARFID has worsened over the years too although she was always very thin.

However on the positive side.. despite this... years of treatment, non treatment, physio, meds, dietitions etc etc... she is a wonderful, caring doctor and her life experience means she is fab with EDS/ED/POTS patients!!!