Hi, thanks for your reply. I will try a private GP and take it from there. I'm also close to Manchester so hopefully I can find a consultant who is knowledgeable about this condition.

Good luck with your treatment,

And thanks for the information

Reva

Reva

Hi how are you doing?  I read through your post and it mirrors my story. I'm now being tested for pheochromocytoma but it's such a slow process. My GP offers me no support. I ended up in A&E after an adrenaline attack which was just awful and they practically evicted me and said I was using them as a GP service. I feel lost. Where are you up to? 

Hi, I am not much farther on at the moment. Last Wednesday had a spike in  blood pressure, I was in the swimming pool at the time. Emailed the doctor when I got home and he said it was symptoms of low blood pressure! 213/98.

I feel alone on this journey, no one in the family understands what is happening, I am going to have to stand up for myself and find a private endocrinologist.

GP still thinks it's anxiety, 

Hope you can get some help, it's awful just getting through each day.

Take care

Reva

I found a private endocrinologist but it's such a slow process. I'm scared to leave the house because of these spikes. I feel so unsupported. I've also had a cough for over 3 months. My X-ray was clear and GP told me to take paracetamol!  When I was in A&E they told me to go back if BP went over 180 and if heart rate went over 150.  They also said to avoid cardio activity. My mind is working overtime and it's torture. 

So sorry you are having these problems, I understand what you mean. I went to A and E in January blood pressure over 200 and unable to breathe. 

Was told to stop worrying, I had never had blood pressure problems in my life, seriously thought I was going to have a stroke. 

They sent me home alone, since then just looked after myself, I went on a low tyramine diet which has helped.

It might be worth trying this, it does help with the blood pressure. Not a long term solution or cure though but I would recommend giving it a shot.

Take care and I hope you get some treatment soon 

Reva

Hi CH100, just wondering how you got on with the endocrinologist? 

I have an appointment next week, hopefully will get some answers, like you I had to go private, but if I get an answer then it's worth it.

Take care

Reva

Hi Reva

Can you believe i still don't have a diagnosis :(.  Last week i had a CT scan on my throat and chest and i get the results on Thursday. I also need to have a head MRI which is not until next week.  The endocrinologist cancelled the scan of my adrenals as a 24 hour urine collection test came back negative.  Today i found a lump in my neck.  This has been going on for so long now and I'm just drained.   I was put on beta blockers which have helped some of the symptoms.  Maybe whatever i have has is presenting in a not so usual way and I've been barking up the wrong tree but whatever it is, i just need to know.  Good luck next week for your appointment x

Hi, sorry to hear you are not getting any answers. 

Hopefully soon you will find out something and can get the treatment you need 

This illness certainly takes it's toll on people, 

Take care

Reva

Hi Matt, thanks for this, I will try this and see what results I get. To be honest the GP is not interested, I am labelled anxious, which I'm not. Just want to find out why my blood pressure keeps spiking so high. My dad had  a pheochromocytoma but the GP refuses to investigate.  "Too rare" 

That's why I had to go private, still unwell after 8 months.

Thanks again

Reva