Graves’ disease and now a heart defect.

[Tanya-B]

Hi I have Graves’ disease but recently have been terrible palpitations and breathlessness. My GP mocked me when I said I thought there was something wrong with my heart. I asked to see a cardiologist but he told me there was a 10 month wait and it was unnecessary. I have health insurance so I asked him to refer me privately. After an echogram an MRI it turns out I have an atrial septum aneurysm.

I am a little confused because my cardiologist said the results showed the prolaps I am a little confused because my cardiologist said it was quite rare and he had only seen it a few times. My septum is bowing from the left to the right and the septum is only a1mm thick. I think the septum is appropriately 4-5mm.

The cardiologist who initially kept saying to me you know your septum is very thin and made me feel quite alarmed is now very vague. He said although I am high risk of clots and pulmonary embolism I can’t have blood thinners because I have Von willibrands disease.

Does anyone else have this defect especially the thin atrial septum. I keep wondering if itcan rupture but don’t want to look like an idiot if I ask my GP.

Thanks in advance for any advice.

Tanya

[Zena166]

Hi Tanya. I don’t have your issue. Others I am sure will be responding in due course. However I think it’s really important to further discuss with your GP and or the cardiologist or be referred to a different cardiologist one who maybe specifically specialises in this issue. The BHF have a helpline that is open during the week and is answered by qualified professionals who will be able to answer your questions initially especially if you have to wait for an appointment. It’s really important to have a care / treatment plan so that it helps you deal with it. Your GP should have a letter from the consultant so that can be explained to you as well. I hope you are able to get the support that you need. Best wishes. Zena.

[Tanya-B in reply to Zena166]

Thanks Zena. I shall phone the BHF helpline. My GP Is useless and the cardiologist seemed intent on scaring me and then when I didn't respond he was so dismissive, I am totally confused. Thank fully the heomophilia team have been very supported and think I need to take blood thinners. They have written to my cardiologist 10 days ago and he hasn't replied. I think they are a bit shocked but of course won't criticise him. I am a phychiatric nurse so know how it works.

It's awful feeling helpless.

Regards Tanya

[rankin1st]

Hi husband has pulmonary artery aneurysm and had arterial septal defect at birth not sure if exactly the same. He was also worried about rupture. Spoke to nurse specialist about it and apparently low risk of rupture due to position not as much pressure as say aortic but I would just ask cardiologist or nurse specialist as gps can often know less than you if it's a rare condition. All the best and try not to worry call cardiologist or bhf helpline they are very helpful

[Tanya-B]

Thank you so much. I will call BHF tomorrow and post what they say. You are right GPs don't know much about these things.

I hope your husband stays well x

[Tanya-B]

Thank you Jo

[Tanya-B]

I feel detached and dazed. Brain fog is awful and I am still waiting to see NHS cardiologist. It’s a ten month wait even though GP marked as urgent.

I sent him my ECHO , MRI and ECG results. The private hospital sent me the charts and CDs. The NHS cardio said he didn’t receive them.

I have not bothered to chase it up.

It’s all so exhausting.

Tanya x