Hiya,

I hope you all get answers regarding this condition. I am currently in the process of being tested for this also, symptoms are a nightmare. I also have anxiety and bipolar so i basically get looked at as if im crazy unfortunately. However it was an infectious diseases doctor that suggested pheo to me after explaining the symptoms. I am still waiting for a CT scan though as well because other symptoms fit with lymphoma and ive had lymphnode swelling also. Just wanted to write so you guys dnt feel alone as it is quite rare but i have been told that a majority are benign thankfully.

Take care of yourselves x

Thank you Sammy.  Kind of you to write.  It seems such an unusual thing.  No wonder my google searches of symptoms never came up with anything similar!

Hi Sammy, thank you for the support. I hope you are able to get the answers you need 

Take care

Reva

Hi,

So on wednesday i was phoned by my doctor who said that the blood plasma tests for pheochromocytoma have come back raised so they are redoing them to make sure its not a fluke and im sat here thinking should i be worrying? I probably shouldnt worry unless i have to but if im honest im bricking it a bit. I will be having a neck to pelvis scan we are just waiting on a date. Hope you guys are doing ok x 

Hi , I hope you get on ok with the tests and results.

I cannot get past the GP to get any tests as he says it's anxiety.

Trying to find a private consultant to do some tests, 

Take care x 

Reva

Hiya,

I hope someone listens to you. I had to change gp practices due to doctors putting things down as 'just anxiety' :( 

Take care x 

Thank you, hope all goes well for you 

Reva x

Sooo, i have an update hope you guys are okay and people are listening to you x 

I had to go private because the nhs are struggling too much with covid issues and keep pushing my endocrine appointment back. The consultant think its either this, paraganlioma or possibly carcanoid tumor. CT came back with lymphnodes in my neck that hes also concerned about which he says will need an MRI for. Also showed polycystic ovaries and one simple cystic lesion on the right ovary but not really big enough that they'd do anything about (39mm). Now to do some bloods and a urine collection to see if he can rule out a carcanoid tumor. Have to be off work as well atm due to having episodes of high heart rate/dizziness and feeling weak. Anywho hope you guys are going on ok x 

Hi so glad you are moving on with this. I still have no support from my GP, they just deny I have a problem. 

I have managed to get my blood pressure down by following a low tyramine diet, it's worth a try as it may reduce some of your symptoms.

Can I ask, how did you manage to get a private consultation, I am struggling to get anywhere with it.

Take care and hope you get the help you need

Reva