I knew ‘something’ was wrong but what! Sweating was happening I was feeling weak/ dizzy often around mid morning, a drink and a snack seemed to make it feel better. I blacked out, dr put heart monitors on me but said all was ok. I blacked out again but no one could say why. I tried my husbands continuous glucos monitor just to see how different foods affected me as I had put on some weight. First day I put it on and we went out shopping around mid morning it started alarming out and I realised I was having a hypoglycemic attack ( blood sugar under 4). It was a massive shock. This kept happening so I went to the drs and saw a diabetic nurse.
About 10 years ago I started to notice odd things happening to me … my body hair on my legs arms and eyebrows fell out! I was struggling with the heat, but in a strange way as though my body thermostat was broken. My head got ‘itchy’ often after dinner. My legs from the knees down got itchy and I became intolerant of the sun. I knew ‘something’ was wrong but what ! Sweating was happening I was feeling weak/ dizzy often around mid morning, a drink and a snack seemed to make it feel better. I blacked out, dr put heart monitors on me but said all was ok. I blacked out again but no one could say why. I tried my husbands continuous glucos monitor just to see how different foods affected me as I had put on some weight. First day I put it on and we went out shopping around mid morning it started alarming out and I realised I was having a hypoglycemic attack ( blood sugar under 4). It was a massive shock. This kept happening so I went to the drs and saw a diabetic nurse. I wasn’t diabetic, but my blood sugars were getting close. I had done some research and my medication (hydroxychloroquine) had been used in some countries to help lower blood sugar so I asked the Dr. if it could be the cause. My blood pressure was also very erratic. I was dismissed and told it wasn’t high enough to be a concern . After having over 30 hypos in a month, I was given an appointment with the diabetic nurse and told to go on a course to understand diabetes. The nurse was more understanding and listened to all my concerns and said she would talk to her boss. The nurse came back to me and said her boss said just do the diabetes course! The nurse (my hero) said she believed there was more to this and I was referred to an endocrinologist.
I called the hospital and asked ‘how long will the wait be?’ Maybe 10 months was the reply. So I wrote to my Drs. again and asked if that long a wait was really acceptable as I was having up to 4 hypos a day and asked for it to be expedited. I got a phone call two days later asking me to go in. The endocrinologist arranged a few basic tests and told me to stop the hydroxychloroquine straight away as it can lower blood sugars !!!! From the tests they diagnosed me with reactive hypoglycaemia. But why have I got RH?! My next three endocrinologist appointments were cancelled, I couldn’t accept this anymore.
I booked a private appointment with a consultant endocrinologist from a centre of excellence in London. My first meeting with her was one hour ten minutes, it should have been 20 mins but she was amazing. At the end, she said I think you might have Cushings and arranged testing. After 3 rounds of testing, it was a no for Cushings. While testing, I did notice that I felt ill when I took the Dexamethasone tablet each time, to the point on the third time I felt I was one step off a stroke down the right side of my face. I also noticed my pm blood pressure after taking it was very high 240/160 type high. I told my endocrinologist, and it was at this point I started doing my own research. I started tracking symptoms, blood sugars and blood pressure. Could it be a pheo para?
Next I was tested for insulinoma with a 72 hour stay in hospital and that was a no. So then I requested the test for pheo. I had been thinking about my dad and when I took him to a hospital appointment the consultant had shown me this small tumour in his lung and told me that it had probably been there a very long time growing slowly, I also thought about his sister and how she died in her mid 60’s and I thought it was due to an adrenal tumour. His elder sister also had an upper body tumour when she died. It all seemed very likely genetic to me. More research and I read up on pheo and it’s symptoms and it hit me like a truck! My endocrinologist organised 24 hour urines and blood tests all came back slightly elevated. She organised a CT scan as well. The results came back normal. She said let’s do more and do them when your symptomatic. These came back high over x2 this time. My original endocrinologist had my CT scans re checked as she was convinced with my symptoms I had a pheo. They were reviewed by an MDT in another hospital who could see a 7 mm nodule. Another CT was organised to check size and hounsfield units. This confirmed it was 7-10 mm and HU 26. So at last I have confirmation and am now awaiting surgery!