Getting mixed messages from my GP

[Curiouscanary]

I’ve been having high HR episodes, chest pain/discomfort and an increase in runs of PVCs.

had a 24hr monitor and my GP said it is /okay/ but there were some jumps to 190bpm at rest and my HR got very high for just walking too. Had a resting 12 lead ecg too and all that got sent to cardiology

my GP said he wanted for them to give me a scan just in case of structural abnormalities. However, I just got a text saying (this isn’t directly quoted)

“Cardiology aren’t worried and don’t want to see you although they suggest you continue monitoring things, this has surprised me and I would like to review you if you feel your HR getting faster or if the episodes start making you feel worse”

god I feel like sobbing. What on earth am I supposed to make of that? That nothing will be done but my GP is still concerned? What am I supposed to do? even if it is nothing- I’d rather KNOW that for sure! What’s the point of putting me in limbo and not even doing a scan? I’ve been through this level of horrible vagueness before with my joint instability and I’m just so tired of not getting definitive answers- especially when in this case they’re actually expressing concern! I don’t know what to do, or how to feel.

[Happyrosie]

I’m thinking - the human body is an immensely complex thing. Your own situation doesn’t fall neatly into a box.

“Cardiology aren’t worried” sounds like something to hang on to, though.

But

Do you feel different? Or the same as usual? Is your diet and lifestyle changing?

And, YOU are in charge of your life, not the docs. What do YOU need to do - if anything - to ensure you are as healthy as you can be. Without making your life a misery!

[Blearyeyed]

Have you got a diagnosis for your joint instability issues , such as Generalised Joint Hypermobility Syndrome or Ehlers Danlos Syndrome?I ask as I have Type 2 EDS , and as it is a multi system condition it means that it needs taking into consideration and more checks are appropriate if you have cardiac symptoms which is something Cardiology may need to be told about and take into consideration.

Personally, I would talk to your GP and ask them to write another letter requesting that Cardiology do accept the referral and assess you , including an Echo , to be able to rule out any structural problems pointing out to them that your have a Joint Instability issue which can cause certain cardiac conditions , like POTs or other Tachycardia issues and that they need to know if you have any of these and require their guidance on treatment if it is appropriate.

Sadly, most Cardiologists don't know much about the needs of patients with EDS or JHS or the autonomic cardiac conditions that these patients , like myself , have as a related health problem.

Often , the heart issues relating to joint instability are treated with Self Care and Lifestyle changes before requiring medication or other interventions, but you need to know which Self Management you should be trying, being in limbo, I know from experience the added Stress of waiting and trying to gently coax your Specialists to learn about your less common condition and do the right tests does not help keep those cardiac symptoms under control.

Luckily m you seem to have a conscientious GP , so politely putting in a plea to them to push for a referral, or even arrange an Echocardiogram through the surgery is probably the best first step.

If you need to chat feel free to private message me , just try to stay as relaxed as you can , as this helps these symptoms as much as anything else. Take care , Bee

[Loobycare]

All I would add to the excellent responses is that sometimes you can feel very vulnerable when questioning 'professionals' . If this is this case - take someone along with you. It is so much easier to be assertive for someone else and you clearly need peace of mind here.I hope you get some clarity! Let us know how you get on. X

[mozart27]

I think that what is being suggested comes under the general heading of "watchful waiting". For instance, men will with raised PSA will often be encouraged not to rush into prostate treatment. Some people obviously cope with this approach better than others who want things to happen straight away - we are all different. If you are one of those, then you may need to arrange for a private scan and a report on the findings which you will be able to discuss with your GP.

[Lowerfield_no_more]

If you can afford it, and want clarification and perhaps reassurance, I suggest you arrange to see a cardiologist in private medicine. It is likely to cost about £250 for a consultation and tests will be extra. You might require a referral from your GP according to where you go. If you decide to go that route assemble as much information as you can before you go in the form of a briefing note which you can hand over at the time which will optimise the time you get for which you are paying

[Riskywriter]

I had a similar message on my NHS app after my GP referred me for an echocardiogram. The cardiologist said I didn’t need to be seen afterwards as nothing would have changed in the 15months since my last echo. However, my symptoms and quality of life have really deteriorated in those months. I asked to be seen privately using my insurance. The echo revealed changes! You know your body. Ask for a second opinion. I’m still waiting for an NHS echo!